The Journal ..........................................
July 1, 2004 - Helen: Tom
and I left Pat at our home in
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July
3, 2004 - Helen: Saturday morning Tom
was up
early, about 9 am - considering 2 am to bed that was very early.
He went
down to Little River to see Bob Snider while I dressed, straightened my
hair,
put dishes away that Cora had washed and positioned the rug runners
that I
bought at Darlene Collins' yard sale. What a steal for $1
apiece. One to the back door, in front of
the sink, and one to the front
door. Nice. At
July 4, 2004
July 5, 2004 - Helen: I
remember Mom getting up in the
middle of the night
and patting my
foot as she went by on her way to bed. When I got up in the
middle of the
night to go to the bathroom, I realized we were out of water. I
flushed
the toilet but the tank didn't fill. Nothing came from the
faucet.
I dozed off again and heard Dad get up later having a hard time
catching his
breath. He did a nebulizer treatment which seemed to do the trick
and
then I told him about the water situation. We went down cellar to
the
pump and turned it off. He figured the water level was close or
below the
foot valve. It would be a waiting game for the well to fill
again.
We decided to get up again about 5:30 and try to prime the pump and
square
everything away. Dad insisted we not wake Phil who was sleeping
in the
camper trailer across the yard. We went back to bed and never
woke until
7:30 am. Unbeknownst to us, Phil had tried a couple times to get
into the
house earlier ... Mom had locked the front door. We went
down
cellar and were successfull in priming the pump and getting the water
works
going again. I had a lot of trouble earlier trying to remove the
plug on
the pump where you prime it. As it turned out, I was turning the
wrench
the wrong way. Later in the morning, the pump failed again.
A
faulty kit in the toilet tank seemed to be the problem. Trish
decided to
take a shower at Bob & Sue's. Since the plan was to have
left-overs
from the picnic at the cottage for lunch, I decided I would get my
shower at
the cottage while we were there. After we related our adventure
with the
water system, Clark and Tom bought a new tank kit and went to the house
to
install it. When we got back to Mom & Dad's after lunch, Phil
primed
the pump and got the water works going again. Once again in the
afternoon
we heard the pump running and shut it off.
We decided it would be a good idea to enforce a light water
usage
program for a couple days in order to let the well catch up. At dinner we brought Teri up to speed on the
water situation and Tom and I offered to go down and help them get it
working. By the time we got there, Dad
was in the cellar with Teri and they already had things under control. I cleaned the refrigerator of anything that
would go well in a crock pot soup and we headed for the cottage.
July 6, 2004 -
Helen: Tom picked up Geoffrey and they drove to Jean's in
Carthage to pick up furniture and other things she wanted to store/give
away as she cleans out her apartment before her lease expires this
month. While he was away, I made soup in the crock pot from
take-out boxes and leftovers from Sunday's picnic and Monday's
lunch: ham, turkey, pork chop, venison, celery, carrots,
broccoli, cherry tomatoes, grilled mushrooms. I walked to the
bank to arrange to put Peg on our savings account - we want her to use
it to help with her expenses caring for Mom and Dad. On the way
back to the cottage I stopped by Padgett's and picked up a big onion,
another bag of carrots and a can of crushed tomatoes for the soup. The
soup was so big, I had to ladle some off and put it into a sauce
pan. Tom and I had a bowl of that for lunch and decided it was
very good. I started helping Tom unload the truck, Geoff had
remained in Carthage to babysit Jean's grandkids while she kept an
appointment in Watertown, when Clark came by. I cringed to see
him do it, but he helped Tom carry in the box springs and mattress and
larger one of the tables. I spent the afternoon sorting through
the things that Teri brought and what came from Jean. I believe
we have enough sheets and towels to hold the whole family for the rest
of the summer. I made a nicer looking arrangement on the sun
porch with the curtains Jean sent. One pair worked to provide a
little privacy between the 2 upstairs bedrooms. Shortly after 5
pm we took the soup and the remaining bags of chips to Mom's for
dinner. Jean and grandkids were there along with Geoffrey and
Teri who had spent the day with Mom. After everyone had what they
wanted there was enough soup left over for 2 freezer boxes. We
had borrowed a baby monitor from Trisha Frasier. Teri setup one
end in Mom and Dad's bedroom and the other half in the bedroom upstairs
over the dining room. It was nicer sleeping in the bed but Dad's
oxygen controller sounds came through louder over the monitor than they
had in the living room next door to his bedroom.
July 7, 2004 - Helen: We all
slept good last night. No water problems this morning. Mom
said she could get dressed by herself today. She did fine.
I checked out the computer to see if I could get the printer to
print right. Everything Teri had printed the night before was
fuzzy ... 3 copies of each line, each offset a little from the
preceding one. I finally found a Cartridge Maintenance tab in
printer properties. It was set to color when there was a black
cartridge installed. I printed a copy of Mom's and Dad's meds to
post on the refrigerator for reference. Phil called that
morning to check up on me; to see if we needed anything. We went
to Hillside Diner for lunch and met Tom, Dan and Ginny there. Tom
spent a lot of time getting caught up with Randy. Petrea rang the
bell for him when his lunch was ready. I hadn't seen Dan and
Ginny in a long time. They are doing fine and look good, getting
rested up from having company. Uncle Dan says he wants to move
further back into the woods. He said his Dr. wants to go with
him. After lunch I located the charger for Mom & Dad's cell
phone and charged it up. It's hard to know whether it works right
because the only service available on it is 911 for emergencies.
Dinner was at Hillside again as The Blue Spruce is closed on Wednesdays
... it seemed like we hadn't been gone very long. Teri and Tom
met us there and Sue, Bob, Kyle and Nate arrived shortly
thereafter. The golfers were rained out and had to go home for
dry clothes first. I ordered cold plate so I would have left over
ham for split pea soup that I planned to make in the crock pot the next
day. Teri said Rita & Crumb were on their way to New York and
Paul & Aidan were expected sometime that evening. We followed
Teri back to Fine where we exchanged stuff, overnight bags and the
traveling crock pot. On our way back through Fine we stopped at
Rick Tyler's. He had put out the word that if we didn't visit
him, there would be trouble. Tom & Rick went out for beer and
we all had a good old chat. Rick works for Tripp now and Angela
is still at Kinney's. Kim Hubbard came over and showed off her
baby - what a cutie. Mara is nearly as tall as Miranda. We
heard all about Miranda's trip to Angier, NC, with her boyfriend to
pick up a truck. We talked about old times especially the block
party when Bob & Sue got thrown in the pool. We closed the
day with a drink at the Spruce - just youngsters out so we went home to
bed.
July 8, 2004
- Helen: Shopped at Best Buys in Gouverneur for odds and
ends. Made pea soup with ham left from Hillside Diner's cold
plate. We all had dinner at
the Spruce - +Mary, Paul, Cooks. Tom treated us to a bon fire
behind the cottage that evening. Someone came up with the makings
of s'mores.
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July 9, 2004 - Helen: I
watched Aidan while his Dad played golf with Uncle Bob and Aunt Teri
& Uncle Dan. We walked over to Nice'n'Easy for a brunch of
sorts. Paul cam back in time to go for lunch at Hillside - John,
Alice, Annie, and Julia arrived while we waited. Mom, Dad and
Mary showed up just after Aidan thew up all over me. After we got
cleaned up Paul headed to Oswego.
July 10, 2004 - Helen: Barb
and Don arrive. Mass at 4 pm. Dinner at the Spruce.
Fireworks over the golf course.
July 11, 2004 - Helen: Helen
and Mary get the stomach fluu. Head back to NC - get as far as
Hagerstown.
July 12, 2004 - Helen: Finish
trip home. Get up to date with Pat. Lost another kitty.
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Dad also went to see Dr. Peterson
yesterday and he is scheduled to have his worst catarac taken off
August 19th., so if Mom is at Dode's I can take
Dad to his appointment.
Dr. Coyle wanted us to make sure that
we sent you his best regards to Julie. He asked about her and all
the kids wanted to know how everyone was doing and commented to Mom and
us about what a fine man he thought Bruce was. Mom really
apppreciated that as did Dode and I.
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July 15, 2004 - Marti:
Just wanted to let you know that we had our final sonogram yesterday.
They estimated the baby's weight @ 10 lbs 3 oz. The dr has decided to
induce labor on Monday, 7/19 (my due date) if I haven't had the baby
yet by then. Everything seems to be good & healthy - my BP is fine
and baby's heart rate is good & strong. Will let you all know when
you finally have a new niece or nephew!!!!
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July 18, 2004 - Peg: Mom is
scheduled to meet with Dr. DeBlazio at the cancer center in Watertown
on Tuesday July 20th @ 2:30 pm to get set up for her radiation
treatments. I will be calling Dr. Coyle's office Monday morning
to ask for a referral to Watertown for possible chemo treatment.
I think we will listen to what they have to say and decide from
there. Mom will be going home with Dode and Gerry today and
staying until after her appointment on Tuesday. If they aren't
going to start radiation until the following week, I will bring her
home after the appointment on Tuesday. If they want to start right away
she will stay with Dode until Friday and I will pick her up and bring
her home then. We are going to see how well she tolerates the
treatments before we decide whether she will continue to stay with Dode
during the week and come home on the weekends or if we will travel back
and forth from Fine. So Nora if you want to wait and see before
you make your plans to come to stay for the first week in August or if
you want to just come and keep Dad company it's up to you. Mom
and Dad both seem agreeable to the separation for right now. Mom
is feeling good right now, but slowly slipping each day with what she
can remember to do. She needs help daily with her bath and
getting dressed and taking her medications. I personally don't
think she will tolerate the treatments very well, but we will wait and
see.
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July 29, 2004 - Mary: I talked to Peg and Dad about an hour ago to check on Mom to see how she is tolerating the radiationAugust 2, 2004 - Mary: Trying to decide when to make another trip north. Waiting to see how Mom tolerates the treatments. Dode seems to think they are wiping her out. I talked to Dode on Sunday. She said it's getting harder for Mom to get up and down the steps into Dode's house and also in and out of the car. She needshelp quite often getting up off the toilet and of course getting in and out of the tub. She been incontinent of her bowels also a couple of times. The Depends have contained it but something else that needs to be done for her. I hope Dode and Jerry aren't getting too tired from all of it. Guess Gabby goes over after work to help Mom get ready for bed, get her blood sugar checked and meds taken. Guess Nora will give Gabby a break this week. Not much other news. Take care. Love you all.
treatments. So far so good. No problems so far other than being tired. She has not experienced any nausea or any "burning" of the skin.
Dad has gone to visit her every day. Brian and Teri took him over on Monday, Bob took him on Tues., and he drove himself over on
Wed and today. He said he got there today about 1 PM and Mom was still eating lunch. (Her treatment is at 11:30 AM.) Aunt Tee and Dick
were there visiting, too. He said he left when Dodie was getting ready to go to work and Aunt Tee and Dick were going then, too. He figures
Mom probably got a nap after they left. Dad also said Nancy and Linda Hovey visited one day, too.
Dad said he's doing okay at home by himself. Hardly has time to get his laundry done. Staying busy I'm sure helps. He got it washed but
still had to put it in the dryer. I'm impressed!!! Bob and Dad are supposed to go and get Mom tomorrow and bring her home for the weekend. Peg will spend the night Friday and Nora is coming on Sat. Everything seems to be okay. Dad did tell me Brian and Teri got back home
okay -- Bob had heard from them. Will try to keep you posted when I get any info. Keep in touch. Love ya, Mary
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TopAugust20, 2004 - Helen:
August 7, 2004 - Mary: Hi to all, Talked to Peg this afternoon to check on Mom. From what Peg said Mom continues to sleep a lot. Slept
late this morning and is generally ex-hausted. Nora and Peg helped her get a shower to try to get her more awake so she could eat her lunch.
Just as they were getting her out of the shower Aunt Alice and Uncle John came by for a visit. When Peg told Mom who was there she said
Mom's face lit up -- glad to have them stop by. Mom still doesn't talk a lot -- yes and no answers for the most part. Dad had Mom write a check
for something. Guess she was still able to do it but tried to enter it twice in the register and then tried to tear a page out of the register instead of
tearing the check out. Dad is still trying to keep Mom involved in this sort of stuff that she has always done but Peg thinks it's getting more and
more difficult for her to accomplish. It's hard to know what is the best way to do this. I didn't call Mom and talk directly to her -- figured she
needed the rest and I wouldn't get more than yes or no answers. Hope she got some much needed rest. Phil is supposed to go up either today
or tomorrow for a couple of days. Helen is supposed to get up to Dode's Tuesday afternoon and be there until Sat. August 21st. Then Barb will
be there for a week. Teri gets there on Sept.1st for a week and Paul on the 5th I think. Marti and John will be camping in Natural Bridge for a
few days Aug 15th to the 18th. Hope they have good weather. Peg said it was 42 degrees one morning this past week. Time for long pants
again. Can't recall much other news. Peg will fill in between siblings coming and going. Dad gets his cataract removed on the 19th. I think
that's important to have done. He needs to be able to see better. I think he'll be surprised what a difference it will make. Time for bed. Will
keep you posted as I hear anything. Hope I remembered everything Peg told me accurately. Take care. Keep the prayers coming. Love you
all, Mary
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August 13, 2004 - Helen: I had an uneventful flight from Raleigh to Chicago and then on to Syracuse on Tuesday morning. All flights were
on time and there was a car waiting for me at the Enterprise car rental ... Thank you, Sam, for arranging for the discount and taking care of this for
me. I appreciate it. When I got to Dodie's shortly after 2 pm, Tee and Dick Morrow were there, Annie Marsh Lasher, Dad and Phil. Dodie was rushing to get ready for work and gave me a quick run down of what needed to be done. She called later in the evening to check on us and see what Mom's sugar levels had been. Dodie has been adjusting the insulin dosage according to the readings and Mom seems to do very well as a result. I was quite surprised when I saw Mom. She has lost a little weight. She is unable to chew anything with much texture to it. Even cooked shrimp and grilled white fish end up in a "pouch" inside her cheek. We are giving her thick soups with lots of protein, split pea and that type, and she does well with them. Dodie made some awesome mac'n'cheese last night but Mom preferred the applesauce and cantaloupe. Her favorite dessert is Edy's frozen yogurt with unsalted peanuts and chocolate sauce. We always see the bottom of the bowl with that. She is not as communicative as when I saw her last. Occasionally she surprises us and chimes in with a remark that is appropriate. She seems to go in and out of awareness. When we ask her what she's doing at those times she says she's "just thinking." I believe she is.
We have a walker for Mom to use to help steady herself and keep her balance. It certainly doesn't have "rack and pinion steering" because it is
quite difficult to maneuver. With the small spaces at Dodie's house we have to help her guide it. It really comes in handy going from the car to the cancer center...that is as long as you are aware of how to open the "automatic" door and know ahead of time which way the door swings. We have the most difficulty getting Mom up the set of 4 steps at Dodie's front door. The art of shifting her balance as she goes up the steps is one she has lost. We have to make sure we are positioned appropriately to support her. It is time for a ramp and a wheel chair for that purpose. Phil told Dodie last night that she has a wheel chair now. We'll see how that works out for us. We also have a hard time getting her up off the bed in the morning. That is the one "get up" that she needs the most strength for. The bed is quite low to the floor so it is hard for us to get the leverage we need to get her standing upright. Just about everything that is done for her requires two 50-year old women (and sometimes we need to add
a 60 year old man) or one strong 30 year old nurse, like Gabby.
Mom definitely spends more time sleeping now. She goes to bed about 9:30 pm after having a light snack and a shot of insulin. Normally she doesn't wake until 8 am. The longest we can let her sleep is about 8:30 am and still be ready in time to go for her radiation treatment at 11:30 am. It takes her a long time to eat anything...at least an hour for breakfast. Dodie has opted not to put her in the bath tub to clean up anymore after Tuesday morning when she nearly fell. Even with Jerry's help she had an extremely difficult time getting her out. We sit her on the commode and give her a sponge bath and that seems to work well. She is more stable sitting there and with one person on each side the cleanup goes much faster.
Jim Hager popped in for a visit Wednesday afternoon. Mom was happy to see him. He looks good - is slimmer, very brown and has a new spikey hairdo. Jerry and I managed the routine alone on Thursday as Dodie had a dental appointment. We did OK even with the stairs. Slowly but surely the best methods present themselves. Annie Marsh Lasher came to visit with Dad and Phil on Thursday. It's pretty quiet most of the time at Dodie's so it is easier for Mom to get more rest. She is always distressed when we have trouble handling her. She doesn't want to be a problem and wants to do more things for herself. Sometimes the body just doesn't respond. Today we got to Fine after lunch so Mom can have a weekend at home. We are all concerned about Tony riding out hurricane Charley in Florida. We pray for his safety as well as Aunt Julia, Uncle Bob and family.
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August 15, 2004 - Helen: Mom decided to continue her treatments so we are back at Dodie's. She is doing much better today although
she still doesn't chew or swallow very well. She had a milkshake with egg for lunch and another one for dinner. They are pretty tasty but she sure
looked interested in the beef stew I was eating.
When we got to Fine Friday afternoon June Hubbard Brown and Alice Hubbard Caldwell came to visit. They were in town for class reunion
events. They looked good and Mom was happy to see them. I believe it has been over three years since she saw them last. Peg made dinner
for us - a crock pot pot roast with potatoes and carrots. It was yummy. Paul called to check up on everybody. The next morning Phil gave me the
run down of Dad's routine. He usually gets up at 6 am and then goes back to bed after breakfast. Mom got up about 8 and sure looked tired. Peg came down to help me bathe her after Phil lifted her into the tub for us. Peg and I would not be able to do that ourselves. The layout of the
bathroom at Mom's is not very conducive to taking care of an invalid. The door opens in and hides the comode making it really hard to
maneuver. Mom had quite a time moving around all day. We decided it was time to get out the wheelchair. The 1st one we had was too big so
Peg arranged with the Lions' Club to get a smaller one as well as a hospital bed to set up in the living room. We expect to do that next week.
June and Alice came to visit again Saturday afternoon. Shortly after they left, Dan and Ginny stopped by. Alice called earlier to check up on
everybody and a little later we talked to Mary Herndon on the phone. We were really concerned about Mom as she looked really run down. We
kept her in and encouraged her to sleep as much as possible. We were silently hoping she would decide to stop doing the treatments. We didn't even ask her if she wanted to go to church. We knew it would not be a good idea. I went by myself to Harrisville while Peg stayed with
Mom. After Mom and Dad went to bed, Phil and I cleared the table in the dining room so Phil could take it apart and move it upstairs. We have a
fair size space now for the hospital bed.
This morning Mom was up by 6:45 am. She looked a lot better and was moving around better also. Sue brought a huge pot of chile and greens
from their garden for us to enjoy for lunch. We also uses the fresh carrots, tomatoes, peppers and cucumbers that Aunt Monica dropped by.
After lunch Sue enlisted Nathan to give buzz cuts to both Mom and Dad. They don't look bad. Mom actually has a nice shaped head - where did
she get all those kids who don't? Sue gave Mom a straw hat to protect her bare head from the sun. Phil, Bob and Dad spent some time
discussing how a ramp could be constructed to cover the front steps at Dodie and Jerry's. They also planned a way to raised the bed that Mom
has been sleeping in there. These are two biggest problem areas for us there - getting Mom up and down those steps when she goes for her
treatments and getting her up out of bed in the morning. She just doesn't have enough strength to help us get it done. Phil and Bob followed
Mom and me to Watertown with enough lumber and other materials to build the ramp and a platform for the bed. We haven't tried either one with
Mom yet but we are confident that both will work just fine. I'll let you know how it works out.
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August 16, 2004 - Helen: Today was a good day. Mom slept until 8:30. We had kind of a restless night because I made
a boo-boo with Mom's insulin - I gave her the morning dosage instead of the evening dosage. But Dodie checked her when she got home
at 11:30 pm and she was fine; I checked her again at 6 am and she was still fine. We are experimenting somewhat with her insulin
because her diet is changing - more soft and liquid food because she has such a time swallowing. The platform for the bed worked
perfect for getting Mom out of bed. We are still experimenting with the "getting Mom into bed." We'll reserve judgement on that for now.
The ramp worked perfect for the trip to the car when we took her to the cancer center for her radiation treatment. It was a busy day so we
had to wait a little even though we arrived early. After her treatment Mom was weighed and we learned that she had lost 3 1/2 pounds.
That brings her back down to what her weight was before her diagnosis. She saw the doctor who checked out her mouth; he prescribed
an anti-fungal agent for the infection she had there as a result of the radiation. He told us to continue the mouth cleansing, 5 times a day -
1/2 tsp salt + 1/2 tsp baking soda in warm water. After we got back home, had lunch - another "power shake" for Mom, Dodie and I went
out to do chores. We dropped Mom's new prescription off at the drug store, went to the bank, stopped at the Health food store and
picked up protein powder for Mom's shakes, went to Salmon Run Mall so Dodie could get a birthday present for Mom, did a little grocery
shopping at Price Chopper and stopped at the drung store on the way home to pick up prescriptions. By the time we got home it was time
to get dinner. We didn't have dinner quite ready when Phil arrived with Mom's new wheel chair. It's just like one of the ones we got from
the Lion's Club except that it has the foot rests with it. Phil only stayed long enough to say 'Hi' and leave the chair. Before he left, Gabby
arrived. She entertained us through dinner and then left to do more "moving to Phoenix, AZ" stuff. We have tried out the new chair already
and have declared it a "gift from heaven." Thank you, Phil. Mom appreciates it.
We remembered that Mom and Dad have a short stool that they keep in the bathroom. Dodie called Dad and asked him to bring it out
when he comes tomorrow. We can use it when we put Mom to bed. We also laid a towel across the bed about where Mom's torso will go
hoping to move her more to the center of the bed. I'll let you know how that works out. We are really pleased with how the day went. We
now know that the key to success with the radiation treatments is lots of rest. We hope that Mom has a chance to get out of the house and
visit once the treatments are done. Signing off for now. -- Helen
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August 18, 2004 - Peg: Thanks for the information, Barb. I plan to stay at Mom & Dad's Friday night to help get you oriented with the
routine. Helen's flight leaves at 10:30 am on Saturday so she will have to leave really early. I will probably have to stay again Saturday night as it
takes two people to help with Mom now. Please try to prepare yourself for how Mom is now. The weekends are the worst because she is
drained from the radiation treatments. Helen & Dode are using the walker just to steady her on her feet before putting her in the wheelchair to
move around the house. She is taking nurishment by the way of shakes to drink, as her swallowing problem has gotten a lot worse and she had
developed sores in her mouth and throat from the radiation treatments. Helen said they were 200% better yesterday after getting some
medication for them on Monday. Dr. DeBlazzio says the sores were from the radiation treatments, but the swallowing problem and the weakness
in her legs is from the tumor. Her hair started to fall out badly last Saturday as we showered her, so Nate gave her a buzz cut on Sunday and she
actually looks good with no hair. Susan gave her a straw hat to wear and she looks really cute in it. She could hardly talk last Saturday, but Ann
(Marsh) Lasher and Dad said she was actually participating in the conversation yesterday. She was saying complete sentences, which she
hasn't done for almost 3 weeks. Bob and I have the bed all set up in the living room for her this weekend, I hope that she will find it comfortable so
that she can get as much rest as possible. We had borrowed a wheel chair from the Lions Club and found that it was too big for the house, so
we got two more smaller ones, but one is very difficult to fold up and the other didn't have any foot rests. Phil took the numbers off the chair with
no footrests to see if he could buy them in Oswego, he was back Monday night with a new chair for Mom, he said the whole chair was about at
much as what they wanted for the two footrests. So Mom has her own personal wheelchair now and I will see that the others get back to the
Lion's Club. So all that we will have that belongs to the Lions is the adjustable twin bed. I will see you this weekend. Take care driving.
Love, Peg.
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August 23, 2004 - Helen: Barb pulled into the driveway about 9:30 on Friday night. She brought a nice bouquet of flowers for Mom. They
sure smelled good. Mom was happy to see her. Peg and I had just finished settling her for the night. We didn't stay up late as I had to leave for
Syracuse early the next morning. I felt a bad cold coming on with hugely sore throat and was hoping I didn't leave any germs behind. Flights
again were uneventful and I actually made it to Raleigh about 15 minutes early. I did catch some sleep on the plane but still didn't feel well. I
called Peg while I waited for Tom to arrive. She said Mom was doing fine and Barb was catching on to the routine. My son, Tom, called on
Sunday to say that he talked to Grandma. Barb told him it was the most talkative she had been since she got there. I spent Sunday in, resting
on and off during the day. Hope my first day back to work goes OK.
I called Peg on my lunch hour to see how everything was going. Mom was sleeping. Peg said Father Decker had been down that morning and
brought her communion. He also annointed her. They had a good visit with him. Peg said Mom seemed disappointed about not being able to
continue radiation treatments but understands why she can't do them anymore. She hasn't been dressed in street clothes since Friday. Peg
says she is so tired by the time she is fed and bathed that they can't keep her awake long enough to dress her. She spends a lot of time
sleeping. Peg, Barb and Mom have had some good conversations ... and even though Mom doesn't participate much she does understand what
is said. Peg believes Barb has a calming affect on Mom.
The Hospice RN will arrive today to assess Mom's condition. The person assigned to her case will be Kate McDougal. Bob and Clark were
gone to Syracuse with Dad. I hope that works out OK and that they don't have to make yet another trip to Syracuse. We found the kind of
shower/tub chair we need for Mom while browsing the web and it's on the way. It has a swivel chair that slides back and forth across the frame.
With it we can sit Mom on the seat while it is swiveled out, turn the seat in toward the tub while lifting her legs and then slide the seat into the tub.
Without Phil to lift her into the tub for us, this will be the next best thing. I hope it arrives soon and works as expected.
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August 24, 2004 - Helen: I spoke with Barb over the noon hour. Mom was up early this morning and sitting at breakfast by 8 am. She was sleeping again by the time the hospice nurse arrived who didn't want to wake her. She listened to Mom's stomach and took note of the blister on Mom's upper lip. She indicated that it could be from the radiation treatments. Hospice will order morphine and anti-seizure medication for Mom. While awake Mom was blinking one eye and Barb asked her if she had a headache and she said yes. Seizures are common with brain tumor patients. We haven't noted anything like that as yet, but we will be prepared if it should happen. Annie, Dad and Mom have all sampled my chicken-cabbage soup and pronounced it good. Now I'm glad I made it and froze it for them. The Dr. that Dad saw in Syracuse on Monday was unable to dissolve the errant piece of cataract with steroids. That means that he has to go back to Syracuse on Wednesday and be admitted to Crouse. The surgery will take about 20 minutes but he will have to stay overnight. He will have a few restrictions afterwards - no driving for a week. Barb says that Mom is awake more now. Her voice is soft and weak but she will occasionally volunteer information and tease a little bit. She brightened to see Diana Folsom when she came to visit today. Annie Marsh Lasher visited today also. Nora and Marti are bringing supper this evening for everyone. Peg went to work today - I told Barb that meant that Peg trusts her...that's a feather in her cap. Barb will stay until Mom is up and around next Monday morning. Dodie has that day off but needs to keep a doctor's appointment. There are a couple days to cover there until Teri arrives on Wednesday.
Peg: Just to bring everyone up to date. Mom is at home now under Hospice care no more radiation treatments. She is sleeping more and more all the time, our main goal right now is to keep her as comfortable as we can. I worked today for a while for the first time since last Thursday. Hospice will be providing a regular hospital bed so that we can adjust the height while we are giving her a bath etc., and a table for over the bed, this should help out a lot. Barb and I have been doing the primary care this week and have gotten a system worked out so that we can bath and change her quite quickly so that there is less chance of her getting cold and uncormfortable. Barb talked with her assigned RN today and she will have Dr. Baltazar prescribe a low dose of morphine and anti-seizure medication so that we can have it on hand in case we need it. Mom had come pain in her head last night so we crushed up two extra strength tylenol and gave it to her. It is very hard to tell when she is in pain as she never ever complains. I will be staying at Mom and Dad's now until Mom passes. My gut feeling is that she probably has just weeks now. Dad has had quite a session with his cataract surgery also. When they removed the cataract from his eye, it shattered and pieces fell behind his eye. He went to see Dr. Hampton, a specialist in Syracuse, yesterday and will have surgery tomorrow and have to stay over night at Crouse Irving. Clark said that the doctor told them this was quite common and he thought that Dad would do just fine afterwards. He explained to Clark that if they could remove cataracts with the patient sitting up it would never happen, but since they can't this does happen once in a while. It just is very bad timing right now, but with the Grace of God we'll get thru this also. Everyone take care and keep us all in your prayers.
Mary: Hi
to all, Just to let you know that I've made my reservations for my return
trip to NY. I got this done last night. I'll be leaving New Orleans at 7:45
AM on Sept. 17th. Will arrive in Syracuse at 1:10 PM. If all goes well I should
be in Fine by 3:30 or 4 PM. I'll be staying until Sunday the 26th
when I leave Syracuse at 2:10 PM and arrive back in New Orleans at 6:26 PM.
I change planes in Atlanta both going up and coming back. Pray for good weather
as we will still be in hurricane season at that time. Is there anything that
Mom needs? Hospital gowns? I might have time to sew up a few if they are needed.
Keep me posted. I can change my reservations if necessary. Mike will retire
Sept. 10th. I have to go with him in the next few days to finalize paperwork
but not sure just when. Will be in touch. I love you all.
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August
25, 2004 - Helen: Mom
did not get up until later this morning even though she was awake about 8:30.
The social worker assigned to her case arrived early and talked with her while
she stayed in bed. His name is Kenny Price ... I believe he graduated with
Bob. After Kenny left Mom had a good breakfast and was more communicative
than Barb had noted since she had been there ... actually completed a sentence.
Mom sat at the table in the kitchen until noon; a little longer than she wanted
as the new, real hospital bed was being setup in place of the one loaned to
us by the Lion's Club. This bed has an egg crate for more comfort. Clark took
the Lion's Club bed back to them. Barb said Mom seemed a little overwhelmed
with all the kitchen activity with preparations for dinner provided by Marti
and Nora last night. She retreated willingly to her bed. She had her dinner
there, held Jenny's hand and admired Marcus. Hospice has advised cutting Mom's
insulin down to the injections she gets first thing in the morning and last
thing at night. Unless her sugar reaches the high 300's she will not need
anymore during the day. Tee and Dick visited today but Mom did not wake up
while they waited for 45 minutes. Bob drove Dad to Watertown and Dodie will
drive them all to Syracuse for his surgery - Dodie has today and tomorrow
off. There is a hospice volunteer who lives in Mom's area - Peter O'Shea.
Mom knows him as he went to mass at St. Michael's. Barb asked her if she would
like to have him visit her and she said yes. It will be nice to have help
available from someone she knows. Erin called Barb today and offered to help
while she is in the area beginning this weekend. Barb suggested she check
it out and then decide.
August 26, 2004 - Helen: Barb said that Mom sat up late last night - until 11 pm. She said Mom enjoyed conversation with her and Peg. Mom sat in Dad's recliner since he was in Syracuse for his cataract surgery. When it came time for bed though, they had quite a time getting her up out of the chair. Barb will check with Hospice to see if they have a chair that will lift the "sitter" up. I'm sure they will come up with something. Dad is home now after successful surgery. His eye is bloodshot and sore but he sees OK now and not as if he were looking throug a veil. Dan and Ginny are visiting today. Mom was sleeping when I called. Barb says her routine has become sleep for most of the morning and early afternoon. Then when she wakes between 3 and 4 she stays awake until bedtime. If anyone would like to visit while whe is alert, choosing a time after 4 pm will be best. Barb noticed also that Mom enjoys listening to conversations. Paul called last night and when Mom stopped offering anything on her end, Barb got on the other phone and talked to Paul while Mom stayed on the line. Barb said she seemed to enjoy listening to them talk.
August 27, 2004 - Helen: Mom stayed up a long time this morning - from about nine to 12:20. The Hospice LPN visited but stayed only about 15 minutes. She said Hospice no longer provides lift chairs but recommended we check the classifieds for a used one. She left some packets of vasitracin for Mom's blister on her lip. Barb said it was bleeding this morning. It's in a bad blace, right in the middle of her lip. Mom had a headache yesterday afternoon. When she starts blinking her right eye it's an indication she has a headache. Peg will pick up a prescription today for a fast acting liquid narcotic that is put under her tongue. Barb went to the Dr. today to have an infection in her right index finger treated. Dr. B. packed it with cotton and prescribed an antibiotic. Dad's eye feels better today even though still red and sore looking. He says he can see the "bugs" again occasionally. Dad and Bob went to Hillside for lunch. Bob and Sue visited this afternoon.
August 28, 2004 - Aunt Julia: Just finished checking the latest info on Family Web. I'm thankful we can keep updated each day without having to make a bunch of phone calls. Each time I visit the web I have to go the the photos to see the latest picture of your Mom holding that baby. This is something that I have seen so may times over the years - my sister holding a little one and kissing the fingers. How she loved little hands! I even remember her reading to me when I was probably 4 or 5 years old and playing with my hands. How she loved to read and how much she loved little fingers!
Helen: Barb said that Mom had a headache last night and again this morning. They are coming more frequently now. Thankfully the prescription we have for her works within 10 minutes. It also makes her drowsy so she sleeps a lot afterwards. She didn't stay up long this morning. Barb said she slept through being changed. She didn't have much dinner last night ... just enough to take her pills ... but she did have a big breakfast and lunch. Mom doesn't always say when she has a headache. Barb and Peg read her body language to know when to give her the medicine. Barb says she talks more to people she hasn't seen in a long time. Erin is expected sometime this afternoon. Peg will come down this afternoon so Barb can go to church. Barb will leave tomorrow after Peg checks in at the Blue Spruce and goes to mass in the morning. Barb said she would go part the way to NC on Sunday and finish her trip on Monday, back to work on Tuesday.
Marti: Wanted to take a minute to let everyone know that we are going to have Marcus baptized at St. Hubert's in Star Lake next weekend. He will be baptized after the 10:30 mass on Sunday - Peg and Paul will be his godparents!! We wanted to invite anyone who wanted to/is able to attend and to join us for lunch at the Blue Spruce afterward. Please just let me know if you plan to come so I can give them a "heads up". I spoke w/ Peg - she said Mom generally sleeps around that time from about 11 AM - 3 PM, but it would be nice for one family at a time to visit her afterward so that it doesn't get too confusing for her. John & I & the kids will be arriving Saturday afternoon and leaving Monday - staying at Cora's Saturday and Sunday night. Hope we get to see you and introduce Marcus if you haven't seen him yet - he's growing by leaps & bounds!!!
Jim Hager called me a couple of days ago and said he has 100,000 frequent flyer miles w/ American Airlines that he would like to make available to any of you out-of-towners who can use them to come see Mom. He says he won't be using them, so wants to make sure they get put to good use if possible. Virginia - not sure how this works or what he'd need to do.... Can you let me know? Any of you - PLEASE let me know if you think you can use them to come see Mom.
August 29, 2004 - Helen: Mom was still awake last night when Barb went to bed at 11:30 pm. And she was awake this morning at 7 am when Barb got up. Her new routine has been up for breakfast by 9, stay up for 1 1/2 to 2 hours, sleep until lunch between 3 and 4 pm and then awake most of the evening with a light supper, enough for meds. Barb said she has said no to pain medication a couple times when it appears she is in pain. She may realize that it puts her out and want to be more alert. Erin arrived about 3:30 yesterday afternoon. Mom knew her and spoke to her. She held Erin's hand for a time. Bob & Sue came down this morning to help Barb get Mom back to bed; Peg had gone to mass. Mom's sugar has been running in the 200's. As long as it stays there she only gets insulin morning and night. If it runs in the 300's she is given enough to cover her. She has a good appetite still for breakfast and lunch; just not much for dinner. Kevin and Nora are coming today for a visit. Erin will be back this evening to help Peg after Barb leaves. Dodie will come Monday about noon and stay overnight. Annie Marsh Lasher will be there Tuesday daytime and Peg will cover at night. Erin may help out evenings as well. The LPN comes on Monday - Wednesday and Friday. Teri gets in Wednesday afternoon. Dan and Ginny sent a picture: http://www.cahill-shene.com/2004/LHandDan.jpg Mom was a nice looking young lady already at 10 years old.
August 30, 2004 - Helen: Mom didn't have a good day today. She was up only for about 1/2 hour and spent most of the day in bed. She woke with a headache behind her right eye. Peg gave her morphine mixed with applesauce - Mom says it tastes horrible by itself - and she went back to sleep. She wasn't able to finish breakfast. Erin and Peg had quite a time getting her back into bed. She wasn't able to help herself at all. When Erin returned from her trip to Gouverneur Mom needed a complete change. She slept through that. Mom has a lot of problems with her eyes. She can still see but the lights seem to bother them. Peg puts a warm, damp cloth over her eyes and that makes it better. The changes in her seem to be happening fast. She doesn't talk much at all. Mary sent a cd of hymns along with a couple hospital gowns. The music seems to soothe her. The new bath tub seat arrived today - Bob put it together. Peg doesn't think Mom will get to use it. Dodie was delayed by a Dr.'s appointment so was late arriving today. She was feeding Mom dinner while I talked to Peg. Mom has had no seizures - that's good - but is plagued by the pain behind her right eye. She stills knows everybody but doesn't interact much. Peg asks that you think carefully before bringing young ones to see her - they may be frightened by how she is now. She has asked for Mary - wants to know when she is coming. She hasn't seen her since early July.
Rita: I just got approval from Dr. Kryn's practice manager (AKA - Mrs. Kryn) to be off from 9/18 to 9/26 to go & help with Mom & Dad. I asked for the following week but that didn't work for them as well as the previous one. Crumb & I will be arriving late Saturday night, probably after midnight & will have to leave early on Sunday morning to be to work Mon the 27th. See you then. Love & prayers to all, Rita.
August 31, 2004 - Helen: Aunt Tee answered the phone when I called Mom & Dad's today. Peg was at work, Dodie was feeding Mom lunch and would be getting ready to go to work herself for 3 to 11 shift, and Annie Marsh Lasher was there to bridge the gap until Peg got home from work. Dodie said Mom had a pain in her head earlier that morning, about 9, and she was given morphine for it. Dodie was hoping the LPN would come today so they could ask her about bowel care. Mom hasn't had a BM in 2 days and she wanted to know what should be used. Mom only sat up for about 45 minutes and then went back to bed. Gabby, Jerry and David left for Arizona yesterday. Dodie was a little anxious about that but looking forward to a nice place to vacation. I talked to Dad on the phone also; as it turns out he was the one that put most of the new bath tup stool together - Bob put on the finishing touches. Dad thinks it will work OK for him at some point but right now it's easier for him to use the other one. I talked to Annie for a little bit. She gave Mom a kiss from me. She said she felt privileged that Mom would let her take care of her.
September 1, 2004 - Helen: Mom didn't have much dinner last night. When I called I talked to Erin - Dodie was just leaving for work and Teri was in Syracuse, lining up a rental car and would soon be on her way. Mom was pretty groggy and had stayed up for only a shor time. She is taking more morphine now for the pain in her head. She brushes at her eye all the time, so her care-givers keep a warm damp cloth over it. They think her vision may be blurring and she is trying to clear her eye. She is no longer able to use a straw for her meals - she isn't able to suck hard enough to get her food up the straw. She is being spoon fed now and ate a good lunch. The Hospice LPN left some suppositories for her today. Kierstin and Walt visited - Kierstin flew into Albany last night and Walt drove her from there. Erin said Mom's hair is growing in on her neck and in the back but not on top of her head. Grandpa taught Erin how to make his oatmeal - how many of you remember how that is done? I told her that she will need to learn how to put his car in the garage, too. There may not be as many of us that know how to do that. I had a nice email message from Carol Shene Labrum who lives in Iowa now. She said she thinks about Mom everyday and wishes she could come to see her but will not be able to do that. She sends her love and gave me a couple ideas to add to the "Ballad." I think we want Paul to see if he can set the Ballad to music and sing it for Mom. What do you say Paul?
September 2, 2004 - Helen: Dan and Ginny were visiting Mom when I called today and Teri was feeding her. Clark drove Dad to Syracuse for a follow-up appointment for his cataract surgery. Peg had to be at the Blue Spruce to accept deliveries and then go on to work for a while. The "B" team was in place - Teri and Erin. When they asked Mom if they were doing OK she shook her head yes. Mom had two doses of morphine by the time I talked to Erin about 1:15 pm but she was awake most of the morning. She said Hello to everyone by name and seemed pretty perky although she didn't get out of bed. Mom still hasn't had a BM since Sunday.
Teri decided to mow the lawn - couldn't find the key - called Bob to see if he knew where it was. The net effect was that Bob asked Nathan to go down and mow the lawn. Bob also took down a bunch of veggies from his garden which Erin was making into a stew flavored with ground beef ... I could almost smell it. Erin said Pete and Clark finished putting down the floor in the cottage kitchen. That will be something for me to check out when I go back to New York 9/11 - 9/18. Erin said the nights have been cold so no-one will want to sleep on the cottage porch. That sounds pretty good considering the heat we still have in NC.
September 3, 2004 - Helen: The first time I called Mom & Dad's today the Hospice LPN was there so I called back later. Teri was on by herself when I caught up with her again. She says it is a challenge to change Mom solo but she was equal to the task. Mom has been using about 2 or 3 doses of morphine a day. She doesn't talk much at all - she responds with a nod or squeeze of your hand. She was up this morning about 1/2 hour for breakfast and to take her meds. She has practically no use of her hands and arms anymore - except for the occasional squeeze. Teri has noticed some faint tremors or mini seizures. Her care-givers learned that she can handle a straw if it is cut down to a shorter length. That makes it easier for her to get her liquid food. Bob and Sue visited today. Deacon Giardino visited yesterday with communion and did some readings for Mom. Mom finally had a BM yesterday. Erin made some great soup yesterday.
Dad had an OK checkup with his eye doctor. He can drive again when he feels he is ready. He goes back to his doctor in Potsdam in 2 weeks. He still doesn't see 100% in the affected eye.
September 5, 2004 - Helen: I talked to Paul when I phoned Mom & Dad's Sunday evening. Paul said he is going back home on Friday. Mom had a good day - she was up for about 40 minutes in the morning and actually talked a little bit. Marcuse was baptized at St. Hubert's this morning - Paul and Peg were godparents. Paul said he slept in his arms most of the time. Paul is still struggling with decisions about his own surgery. He doesn't want to have an esophaghectomy but will if there is no other choice. Julie visited with Nichole and Daniel. Nichole cried a little bit to see her Grandma the way she is. Daniel didn't want to see her. I also talked to Dodie who said Mom was eating good. Gabby made it to Arizona OK. She is settling into her apartment. She starts her job on 9/13.
September 6, 2004 - Helen: I talked to Paul again when I called Mom & Dad's this afternoon. He said that Mom is not doing as well today as she was yesterday. She was up for about 20 minutes and then asked to go back to bed. She only ate a couple bites of cereal and then didn't want anymore. She slept most of the day. Peg came down to be with her while Teri and Paul played golf with Bob. Paul won, of course. Did you have to ask? But Bob beat Teri. Now that's a feather in his cap. They had a beautiful day...80 degree temperatures. Wished I was there ... we have rain. Aunt Alice and Uncle John visited today and Marti and John stopped by on their way home. Mom seems to be worn out from all the company she had on Sunday. Paul said that Mary is coming earlier than expected because of tropical storm activity. I tried to call her earlier but got no answer. I'll catch up to her ... Aidan is back home with Virginia again after having a fun overnight with Aunt Rita and Uncle Crumb. Jean made it home safely - no delays or problems with her flights.
September 7, 2004 - Helen: I talked to Teri when I called Mom and Dad's this afternoon. Aunt Tee and Dick were visiting. Mom was not very comfortable last night so she was given ativan, the anti-seizure/anti-anxiety medicine, for the first time. She has also been doing a lot of coughing. The Hospice LPN suggested a patch to dry up the secretions in her throat. That was called into Dr. B's and Dr. B's office phoned to say that it had been filled. She will also be getting a stool softener to use with the Milk of Magnesia that she has been taking. The Hospice nurse will be visiting tomorrow. Mom is still sleeping a lot. I talked to Mary last night on the phone. She is waiting to see what hurricane Ivan has in store for the Mississippi delta. If it looks like it may prevent Mary from making her flights, she will change her itinerary and come sooner. Mary said that Andy has reservations to come also but he will be leaving a day or two after Mary. We are due to get a lot of rain over the next few days from the remnants of hurricane Frances. I have added more verses to The Ballad. I can still use material if you have any to offer.
September 8, 2004 - Helen: When I called Mom & Dad's over the noon hour Teri said that after having a phone consultation with Dodie they called in a Hospice nurse last night to catheterize Mom. Her stomach was very distended from fluid retention. They were able to get her wedding rings off before she was too swollen. As soon as the catheter was hooked up she immediately filled a bag. They made sure the bag was empty to see her through the night but it was still empty this morning. As it turned out there was a pinch in the tube so Mom was soaked. They got that problem squared away, Mom freshened up and dry and she filled another bag, working on a second. With the added stool softener Mom's bowels are moving good as well. Her lasix has been increased to 2 a day again to control her fluid retention. Annie Marsh Lasher was there when I called and Uncle Bill had visited earlier. The regular Hospice nurse is expected this afternoon.
September 9, 2004 - Helen: The phone line was busy most of the day at Mom's. I called Teri's cell phone before I remembered that the cell's don't work in Fine. I got to talk to Dan, though, who had good advice. He said that whenever he couldn't get in touch with her he called Peg. So I called Peg at the Spruce. She had just come from Mom & Dad's. Mom had a pretty good day. She actually made some unsolicited remarks. The catheter is working out well. Mary will be in New York on Saturday just behind me. We will travel to Fine together. I will stay a week and Mary 2 weeks. We don't expect that Mom will be alert enough to know us much longer. Brian is unable to come any sooner as he is tied up with closing on his house...this has already dragged out longer than he can bear. We are hoping for peace for Mom as she continues on.
September 10, 2004 - Helen: Teri said Mom had a good morning. She was very alert and said a few words. They can't always make out what she says because she talks too soft or it doesn't seem to make sense. She had phone calls from Brian and Phil and that seemed to perk her up. She was awake most of the day - only dozing off and on. Her appetite was good. Yesterday morning she actually asked to wait on her morning dose of morphine. She knows it makes her sleepy...but she eventually asked for some. Audrey & Deb were there to visit as well as Dan & Ginny. Phil Giardino brought her communion. The Hospice nurse visited today also. Teri said they printed "The Ballad" so Dad could read it and he thought it was pretty cool. It has been something constructive for me to concentrate on rather than other more ... well use your imagination. So I will continue to add to it and will continue to solicit suggestions from all you guys. In case you don't know what I'm talking about - http://www.cahill-shene.com/ballad.htm
I get into Syracuse about 4:05 pm tomorrow afternoon. Mary comes right behind me about 4:23 pm. We'll drive to Fine together. I can't wait to get there and see Mom & Dad for myself. Rita and Crumb will also arrive Saturday night somtime around midnight.
September 13, 2004 - Helen: Mary and I made it to Syracuse on Saturday without event. Flights were on time, no mishaps; had dinner at The Grist Mill and got to Mom & Dad's about 7:50 pm. Rita & Crumb were already there and said that Daryl and Audrey had just left. Mom was sleeping but woke as we arrived and knew who we were. She has a spiffy hospital bed with a handy swing table and comfy gowns that open in the back made by Mary. Peg gave us a high level of what the routine is now. It was fairly late when we went to bed but were up on Dad's heels the next morning about 6:30 am. Rita and Peg gave Mom a bed bath, changed her bed, gave her meds and let me feed her. Guess I was kind of like a steam shovel because she ate more than usual. I asked her to raise her hand if she didn't want anymore - she raised it immediately. She talked some to us but much of it was hard to understand. Rita stayed with her while the rest of us went to church. After church Rita drove Dad to The Hillside for lunch and Mary and I stayed with Mom, lunching on leftovers. The refrigerator is pretty jammed with donations from Monica and Audrey...everything scrumptious. Later on Monica brought over a cake, rhubarb muffins and zuchini bread. Nora arrived, traveling by herself, about 3:30 pm. Rita stayed with Mom again while the rest of us went to dinner at the Blue Spruce with Dad. When we got back from dinner Bob & Sue were there and Daryl & Audrey. Brian calls every morning to talk a bit with Mom - that perks her up. Brian said they would be here for a quick trip this week - not sure of the arrangements yet. He is working that out with Virginia. We also talked to Paul yesterday and Dodie, who is coming out today.
Mom has gone down a lot physically since I saw her last. She sleeps a lot and is totally bedridden. Peg has mastered changing the bed with her in it and is a good teacher. Mom enjoys our chatter and reminiscing. She has some wonderful music to listen to provided by Mary, Peg and others. She doesn't eat very much, generally a good breakfast and enough other times to take her meds. Her hair is starting to grow in along her neckline. She has a skin discoloration on her forhead from the radiation treatments. She is a shadow of her former self but does have some swelling. The nurses - Dodie, Rita, Peg - discuss adjusting her lasix to deal with that. She is checked carefully and treated for any bedsores she has. Her skin is still as soft, smooth and white as a youngster's. I read The Ballad to her but could not judge what her reaction was. I told her I would continue her afghans for the grandchildren tradition. I asked her who was next and she said "Erik." That's what Jean and I came up with when we talked about a few days ago. I also asked her about the needle point work as Mary is proficient at that. She said Aidan was next but we see both Aidan and Katherine are already filled in. Crumb thinks they were not there in June; maybe someone did it for her? Mary said she would find the blank one she sent her and figure out a way to include the great-grandchildren also. She had a touch of a smile when she knew that would be tended to.
Mom gets a lot of phlegm and mucus in her throat making it difficult for her to swallow. The scopolamine patch that gets applied behind her ear takes care of a lot of it, but not all. It isn't comfortable for her to sit too upright but sometimes we have to do that so she can do a good cough. The Hospice nurse is expected this afternoon. We will ask her for suggestions on how to treat the beginnings of a bed sore she has. Dianna Folsom visited this morning and Mom was happy to see her. From his chair in the kitchen, when the curtain is raised out of the way, Dad can see Mom lying in the bed. His way of keeping track. We are becoming schooled in the etiquette of making her visitors comfortable, making sure they have space and time alone with her. Everyone we see who knows her asks about her and wishes her well. We pray for peace for her ... and us.
September 14, 2003 - Helen: Mom had a good day yesterday. She was awake most of the day...dozing off and on. The Hospice nurse visited mid morning. She was impressed with our setup - she was just back from disability so it was her first visit. She checked Mom's bed sore and recommended opsites to cover the sensitive areas so we applied a couple of those. She listened to Mom's chest from the front and back and said she could hear no conjestion. She suggested experimenting with the lasix as her urine output varies. Tee and Dick arrived about 11:30 am. Mom was happy to see them. We lunched on fabulous leftovers - Peg's venison stew, Audrey's scalloped potatoes and ham, Monica's rhubarb muffins. Audrey came about that time carrying a big macaroni salad and another cake. We could sure use some visitors with a sweet tooth. Audrey got right after Dad about wearing his glasses. She told us to call her up if he doesn't do what he's supposed to do. Crumb is making himself invaluable - running errands, waiting on the caretakers. He and Bob are going to Watertown today to take apart the platform that he and Phil and Jerry constructed for the futon that Mom slept on at Dodie's. Dodie and Jerry arrived mid afternoon. I think we made a lot of noise telling stories and picking on each other. I asked Mom if she wanted us to be quieter and she squeezed my hand to indicate "No." Monica brought over an awesome roast port dinner, with all the fixin's, about 5 pm. We really appreciated not having to cook with everything else going on. Daryl and Audrey came over later in the evening. Things quieted down about 10 pm. Mom was settled for the night and we sat for another hour quietly - well, pretty quiet - visiting.
Rita was quite concerned about the level of Mom's urine output. Mary agreed to sleep in Dad's chair overnight so she would be close by if Mom needed anything. I went downstairs for a nature call about 1 am and put Mom on her back. We had left her on one side because she had been on her back a large part of the evening. I thought I was rising early at 6 am but Mary and Rita were already up and halfway through Mom's bed bath. She woke with pain at 5 am and a bad bout of diarrhea. Her urine output improved some so we were less alarmed about that. Peg arrived at her usual 7 am. When we turned Mom so Peg could see her bed sore we discovered she'd had another bout of diarrhea. Thankfully we caught up with it soon enough so it didn't require a complete bed change. We're running the washer and dryer overtime.
Mary's friend from nursing school, Lee Sovino, is visiting later this morning. Kenny Price, the social worker assigned to the case, arrived this morning. Rita called the Hospice nurse for advice on how to handle medications when Mom is eating so little and producing so little urine. We were advised to stick with the "have to's" and let the others ride. Father Decker just called and is on his way down. I'll file this away and see what I can do to help out.
September 15, 2003 - Helen: Father Decker stayed just a short time yesterday. Mom was alert and knew who he was. She received communion and we followed it with applesauce to make sure it went down. Marti came Jen and Marcus a little later. Jen was a bit fussy and felt feverish so Marti went out for Tylenol and missed Mom being awake while she was gone. Mom got a nice kiss from Jen and held her hand. I was able to rock Marcus to sleep even though Marti said feeding time was imminent. Mary's friends Lee and Peggy arrived, stopped in to see Mom and then settled in to have a good old fashioned gab fest with Mary around the kitchen table. I drove Dad to Tripp's for brunch - his Tuesday morning usual. They serve breakfast all the while they are open so that suited me. Diana Folsom visited again. Monica brought over paper products and another cake. Daryl was by for a visit. Crumb cooked a nice cube steak dinner for us with corn on the cob and fried potatoes - left over from the roast pork dinner - and Audrey's macaroni salad. We held the entree's until Bob and Sue arrived later in the evening.
Mom became agitated in the evening. When we went to turn her we discovered she'd had another bout with the diarrhea. We cleaned her up and made her as comfortable as possible. We all agreed we should take shifts and sit with her through the night. We decided we should go to the morphine patch as we were unable to depend on her being awake enough to take the pain killer orally. Rita went to bed early and Mary took the first shift. On my usual "nature call" at 1 am I ran into Rita in the hall ... great minds. Mary was slumped in her chair asleep with her hand on Mom's arm. The alarm clock we were depending on didn't work so Rita didnt' rouse at 2 am. I heard Mary call for her about 3:30 am and came down to help her turn Mom ... she was dry and clean at that time. I convinced Mary to go to bed and I went on duty. I had a bout of the diarrhea myself so was glad to be closer to the bathroom. I wasn't at my post an hour when Rita came down ready to take over. She didn't have to talk to long to convince me to go to bed.
As is my usual I slept through all the excitement this morning. When I came down at 7:30 am I learned that when Rita was feeding Mom applesauce with her meds and morphine Mom aspirated some of the mixture. Rita kept her cool and let the nurse in her take over. We were so glad it happened to her who knew what to do. We will not be feeding Mom anymore ... it's too risky. Rita believes she is in the first stage of coma. When her eyes are open she doesn't focus. We believe she still hears everything. If you are planning a visit, do it now. The experienced ones of us think she has only a couple days at best. We had quite a session with the phone this morning ... calling the Hospice nurse to update her and get the wheels in motion for morphine patches. Trying to get through to Dr. Balthazar to ensure the prescription was called in. Calling siblings and close family to let them know of the latest status. The house is beginning to resemble Grand Central Station. Since we couldn't reach Dr. B., Peg left for Colton to take care of it personally. We are working hard to reach everyone by phone. The fact that cell phones don't work here is really bogging us down. Please don't feel left out ... we are thinking of you all and doing the best we can.
I put together a crock pot of seafood chowder. Monica will be bringing over sandwiches and fruit cup tonight ... some aren't excited about seafood chowder. Go figure! Mom's earthly chapter is coming to a close. Most of what we feel now is acceptance and peace. Lord, bring us the rest of the way.
September 16, 2004 - Helen: Mom seemed to rally late yesterday afternoon and evening. We believe that using the patch for her pain is really paying off and making a big difference. She still has not had anything orally since early yesterday morning when she aspirated. Her breathing is more labored and raspy. Rita checks her daily for lung congestion and has not found any...it is mostly in her throat. Her urine output has remained steady at about 100 ml's over 12 hours. Phil arrived early afternoon and was the first one to sample the chowder. Bill Rice visited yesterday morning and she had several other visitors through the day - Diana Folsom, Daryl & Audrey, Annie Marsh Lasher. Monica brought sandwiches, deviled eggs and fruit cup for dinner - a nice complement to the seafood chowder that went over well also.
We divided the night into shifts again and made sure Mom had someone with her around the clock. Crumb and Rita picked Nikki up at the airport in Syracuse and brought her back, getting in about 1 am. Mom was alert enough to communicate with Nikki and was awake quite a bit through the night. We followed the progress of hurricane Ivan and wondered how the Mississippi Herndons were faring. Phil took the final shift at 4 am.
Peg arrived shortly after 7 am we gave Mom a bed bath taking extra care not to hurt her. All her joints are sensitive now. Rita was still sleeping so we didn't do anything with her bed sores that appeared to be seeping through. Rita cleaned and retaped them later. Her pulse has become more rapid - because of not having her blood pressure meds, the nurses say. Shortly before noon John and Alice arrived with a ham for sandwiches and a huge pot of home-made cream of broccoli soup. It tasted awesome. Dan and Ginny were right behind them. Mom was still pretty sleepy but we believe she knew who was there. We are expecting Sue and Judd this afternoon. Mom hasn't seen them in quite a while. We've heard from lots of folks making plans to head home. Dodie and Jerry will come this afternoon also.
We are taking heart with Mom's improvement. We told Brian when he called that he will probably make it in time. He was thrilled that he was able to tell her he loved her another time and have her respond. We take joy in these small things and continue to pray for peace.
September 17, 2004 - Helen: Mom's breathing became much more raspy yesterday afternoon. Peg replaced her scopolamine patch hoping it would help clear her throat and make it easier to breathe. When Dodie sat with her she noted the smell of what she was coughing up and thought it was indicative of some type of pneumonia. We also noted mottling of her skin in several places. Audrey told us that when that happened to her mother she only lived another half day. I called Peg and told her she better come back down and be prepared to spend the night. We laid our plans for monitoring her through the night. I gave her a back rub and that seemed to help her bring up more mucus. We each took turns sitting with her, encouraging her to go with Jesus; we would be OK; Dad would be OK; we wanted her to have her reward. Paul and Barb arrived about 11:30 - Barb had problems with her car. Dodie, Peg, Barb and Nora were getting ready to turn Mom again about 2 am when her eyes opened. Then they noted the long pause after her last breath. Mom left us about 2:10 am. She had a Mona Lisa smile on her face. The house was very still except for the sounds of sniffles and breaking hearts.
We kept the phone busy notifying people and finalizing arrangements. Peg and Phil drove up to Bob's to let him know. Phil Giardino came down for the final blessing. Charlotte from Hospice arrived and put us all in order and headed us in the right direction. The young fellow from French's Funeral Home came for Mom's "temple" - she doesn't need it anymore...she's flying with the angels. Somebody made coffee and we kept each other company through the wee hours. Peg turned into her efficient machine person and began working her way through final preparations. We chose an outfit for Mom that Dodie and Jerry got her for her birthday...that she never had a chance to wear. As word filtered out visitors began to arrive...our community that helps support us through this. Calling hours will be Sunday, 9/19, from 2 to 4 and 7 to 9. Mom's funeral will be Monday, 9/20, at St. Michael's Church in Fine at 1 pm. If you choose to honor her with a donation rather than flowers, she would like you to support St. Michael's Church or Clifton-Fine Hospital.
The journal will continue ... I hope you all take comfort in it ... I need to do it. It keeps Mom with me; helps me find closure and to do something constructive and healing with my feelings. Go with God, Mom. I know you are watching us.
September 18, 2004 - Helen: The waves of food started early yesterday and the Shene Kids Eating Machine geared up. We carefully noted who brought what so we can thank them for their thoughtfulness. The Bows 'n' Cheese casserole that Sandy Rice brought with her and Jim was practically inhaled...comfort food. Somebody went for chocolate bars and ice cream and it steadily disappeared. The two electric coolers were especially helpful; we took two large platters of food to Audrey's refrigerator for later. We kept Mom's and Nikki's computers busy making and changing airline reservations and organizing the beds available. We have plenty of offers for extra sleeping spaces...God will provide. We kept careful watch over Dad, making sure he took his meds, got his eye drops, ate when he should; we couldn't get him to nap...he wasn't able to sleep. I guess he knows now how Mom felt with all the extra attention and his kids underfoot. I must say he's being really good about it.
Barb, Nora and Peg met with Father Decker to finalize the service. Barb, Nora and Mary went to the florist and made arrangements for flowers. What they chose sounded very nice. Nora plunged into music arrangements...that's her passion. We talked about asking Kevin Donovan to speak for the family...he does a nice job. We chatted with visitors, kept up with the dishes and answered the phone. Annie told us that her Mom, Aunt Julia, will arrive in Syracuse today. Hospice came and picked up the hospital bed and bedside table. Crumb and Phil moved the furniture back to where it belonged. Dad's pants arrived and we got a good fit this time. When he stands up they are too loose around his waist; when he sits down, he has to unbutton them. How would we deal without the opportunity to see that gap at the top of his pants? Is there such a thing as a gold-plated rubber band?
Jean, Teri and Chris rolled in about 6:30 pm...the last of the travelers until tomorrow. We're all anxious to see Brian and Teri. After Jean, Teri and I drove to Star Lake and got settled we went to the Spruce for a nightcap. We sat and solved all the problems of the world. When we parted we agreed the first ones up would wake the other and we would go for a walk. It was bracing. The cottage was toasty when we arrived...Peg and Clark had stopped over and started the heaters. As we were finishing up our breakfast at Hillside, Dad, Paul, Dodie and Barb came in ready for lunch. Petrea had given us a cup of northern bean soup to take to Dad. We spoke with Denise and Alton Dumas - Denise just finished another round of chemo for her cancer and will be getting her knee replaced soon. Alton lost his Dad a couple weeks ago...they asked us if there was anything they could do for us. Small town folks are the greatest. When we got down to Dad's Monica and Val were just leaving and Tom Rice and Rogene arrived shortly afterward. Everything is under control with Rita at the helm; Crumb was fussing around with something he wanted to get finished before Dad got back. Crumb said Monica brought breakfast that morning. I settled for a description ... there wasn't a remnant to be found. We are doing OK - working with one day at a time.
September 20, 2004 - Helen, 10 am: The queue for the bathroom is moving right along. I drew short straw and went first so I learned quickly that all wasn't right with the hot water. Guess I tripped a breaker yesterday when I was using the iron. At least everyone else had hot water for their shower. Teri just stopped by to exchange ties - Tom III didn't bring one with him so he is sharing Geoff's - Geoff didn't want to wear the same one two days in a row. Everyone slept in this morning...we were pretty exhausted from calling hours yesterday...what a wonderful crowd of people. Every sibling's family was represented; all her children and their families were there; all of Dad's siblings and their families came; cousins that I haven't seen in years; next door neighbors, the young men that make sure her driveway is plowed, the folks who wait on her when she goes to lunch, people from church, friends of her children, families of her sons and daughters-in-law, co-workers of Dad from J&L, folks Mom worked with on election board, hopital auxiliary, fireman's auxiliary, school chums...people from every facet of her life. One hour was barely enough for immediate family to pay their respects. Mom looked good; we opted for nothing to be done to her hair and she didn't have very much. Unlike some of her kids, she has a nice shaped head. Her smile wasn't quite right - I guess that the look in her eyes is what completed it. We won't get to see that again. Everyone grieves in their own way; we have a short list of ones that haven't yet exhibited; we want to be there for them when they do. The room was overflowing with flowers - nearly all our workplaces were represented...that's a lot of flowers. Father Decker lead the rosary for afternoon hours and Phil Giardino did the traditional readings for evening. He spoke a short eulogy for Mom that was very flattering and touched our hearts. He has the gift.
September 21, 2004 - Helen, 10 am: Jean is over to Peg's arranging for a flight out for this Saturday. The cottage is so still I can hear the refrigerator run...I know a phone will not interrupt me. As I was waiting yesterday for Tom-Jr. to finish his shower, Kierstin, Kaeleen and Sean arrived. They had overslept checkout time and needed to use our shower. Tom finished up and we cleared out of the way. One was down and the 2nd on the way by the time we left for the church. Our careful calculations left only 3 pews for non-family members. Luckily we were able to scrunch in, use chairs and standing room in the back and fit everyone in. The service was very nice. We were especially heartened to see Father Richards arrive ... Joe and Monica drove to Ogdensburg to pick him up. He walks with a cane and very slowly but he is still very alert and participated in the mass with Father Decker and Phil Giardino. Terry did fine with the eulogy...she said if it had been any longer she would have had trouble. John D. Q. suggested we put it on the website...good idea; we'll do that. As we rounded the drive at the cemetery I saw John Davenport waiting on the back of a pickup truck with his fellow grave digger. How ironic; he is taking over for his Dad, Jim. Dad was able to sit through the prayers at the gravesite. At one point Jenny climbed in his lap and my heart tingled. At the conclusion, siblings collected their red roses from the arrangement from them; grandchildren collected their red carnations from theirs; Erik took the rose that stood for Bernard Joseph; Mary will take the pillow with 3 carnations home to her grandchildren, Newt took 2 carnations for Shayne and Emily and Jean gave the remaining 4 to Kierstin. It was very touching for friends and relatives to see that. Dad headed back to the house to get his nebulizer and then we all drove to the Blue Spruce for a meal of donated food. What a spread.
It is a good thing that weather cooperated and we were able to spill onto the porch...there wasn't enough room inside the Spruce to hold everyone at once. The line for the buffet extended through the bar and nearly to the side door. Audrey gathered her crew of servers who took good care of us...Melinda Hubbard, Angela Tyler, and Brenda Hubbard. I walked into the kitchen to talk to them while Barb Rice was there and got a feeling for how people feel when they approach a cluster of my sisters. Their resemblance is uncanny. I sat with Peter Hovey whom I haven't talked to in years. He looks wonderful and is one of those lucky ones who has worked in the same place for 31 years. The Hovey's were anxious about their sister, Nancy Casler, who is back in the hospital with diverticulitis; she may need a colostomy. It was a great feeling to see all the cousins and 2nd cousins' children playing together - Colin Cahill, Jenny Babcock, Adam and Erik Szlamczynski, Connor, Kate and Aidan Shene. They were having a ball. I just know Mom was looking down with a very satisfied smile on her face.
As the crowd cleared the diehards continued on. My brothers got wasted...for once I knew when to stop. Plans for transporting the intoxicated were made early on; Peg collected car keys from those she knew would not be able to drive. Geoffrey was the designated driver as he was about the only one still there who hadn't had anything to drink all day. My son, Tom, struck up quite a conversation with the local State Trooper who stopped in for a drink. His presence really kept us all on our toes about the driving situation. Tom, my husband, went back to the cottage to pack up and get ready for his trip home. I fed Gilligan, our traveling kitty, while he made his preparations. When he went to bed I walked back over to the Spruce to be with my brothers, Jean, Teri Hoen, Sue Shene, Teri Shene, Erin and Pete. Bob took Sue to the cottage so she could sleep for a while and then drive their vehicle home. She was determined she was going to work the next day and lacking a vehicle at home would make that impossible. Geoffrey left with his charges about 11 pm and Jean and I walked to the cottage to settle for the night. I took the kitty upstairs so Sue could sleep. He settled down quickly. We all slept like logs.
September 22, 2004 - Helen, 11 am: Jean is in the shower and the golfers just left - Teri, Bob and Clark. We've made a date for 3 this afternoon to work on Thank You cards at the Blue Spruce. The dining room is closed today. Yesterday we all went to Tripp's for brunch with Dad - we made quite an impression. Diane the waitress wasn't thrown by the crowd at all: Dad, Tee & Dick, Bob, Phil, Brian & Teri, Mary, Bill, Andy, Julia and Annie, Jean, Barb & Don and me. Dad thought he was going to pick up the bill. When Phil saw the total he snatched it away from him. We all ante'd up for the tip. We left Teri at the house doing her cleaning and organizing thing. The plan was to transfer all the food from the Blue Spruce down to Dad's. It was a tight squeeze and we used a few coolers - the electric ones were an awesome help - but we fit it all in. Jean and I went prepared to visit the landromat in Gouverneur after we ate. When we got there the sign on the door said the business had been shut down at the end of the day on 9/19 - last Sunday. So we took our laundry to Dad's and did it there. I didn't want to do that because the water supply has been problematic in the past. Somebody insisted so we did. The 2nd load in the dryer fried the motor - the vent had been pushed tight against the dryer so it wasn't venting properly coupled with lint buildup - one cooked motor. Crumb and Bob took it all apart but didn't take long to declare it dead. We will be shopping for a dryer today. Julia rode to Fort Drum with Mary, Bill and Andy. She enjoyed a nice long conversation with Mary. They came home with more food - horrors! - and a vcr/dvd player for Dad. We struggled with spaces for milk but worked the magic once again. We loaded up the oven with left over food about 5 pm. We put a major dent in it for dinner but there is still enough for a few days. I will do my part! We got Annie Lasher to take home her own bowl full of goulash. Every little bit helps. Teri rode back to Star Lake with me and Jean. We stopped at the Spruce hoping to find Peg still up...she wasn't since it was well after 9 pm. Tom called while we were there to say he made it home OK. He hadn't been in the house yet...I can wait for that report. I bet the cats really did a number on it. We had one drink and headed for our beds. We slept like logs.
Helen, 11 pm: Jean and I left the cottage about 11:30 am; stopped at the pharmacy for some essentials; stopped at the Post Office to mail bills - life goes on. We saw Andy's rented cadillac at the Hillside but continued on to the cemetery. Mom's grave was nicely smoothed over and piled high with flowers. The gravestone of Bernard Joseph was covered with a layer of dirt - we'll clean that off tomorrow - and 2 red carnations...wonder who put them there. We wandered around through the whole cemetery - that didn't take long...Cahill's, Rice's, Moote's, and Shene's. When we got to Dad's house we zoned in on leftover donated food. I polished off the macaroni and cheese - it's a sin to throw that away. Monica stopped by to visit and soon Dad, Mary and Andy returned. Mary and I drove to Gouverneur and picked out a new dryer for Dad. I paid for it and it's his to use as long as he needs it. When he's finished with it we will install it in the cottage. We got back just in time to head to Star Lake for our Thank You note writing date. Peg was pretty well organized. We all looked at cards we hadn't seen yet; Peg pulled ones she wanted to write personal notes on; Teri did flowers, Mary did cards with money, I did mass cards and Jean did food. We have a card set aside for everyone but need to do some work on completing addresses. Sue came in later with a bunch of cards she had received...she will take care of those herself. We wrapped up at the cottage and dined on turkey noodle soup and ham and cheese sandwiches. Mary rode down to Dad's with Teri, Jean read her book and I tidied up. Bob came back later in the evening to visit while Sue was at school working on homework. Teri didn't have to work too hard to convince us to go to the Spruce for a nightcap when she got back from Dad's. It's been a busy day ... guess it's time to turn in.
September 23, 2004 - Helen: Jean walked to Padgett's to get eggs and margarine this morning...she didn't like my no breakfast routine. She made herself a ham and cheese omelet and was prepared to do the same for me but I just didn't have the appetite. It was about 9:30 am when we got down to Dad's ... the dryer had just arrived and we learned from Mary that Dad had a 10 am appointment with Dr. Balthazar. He has been hacking up some off color mucous and was easily convinced he should see the Dr. Mary was happy to see us so we could supervise the dryer installation while she drove Dad to Star Lake. A couple minutes later Bob pulled in with Teri right behind him. We visited on the porch until Teri left for Syracuse to catch her plane. The dryer works fine. Jean had a lunch date in Harrisville with a friend from Carthage. Bob took a load of food to his house and delivered Jim Rice's cooler to him on the way. I spent some time on the computer and lunched on more donated food...I'll do my best to keep the waste to a minimum. Andy headed to Hillside for lunch on the off-chance he would hook up with Dad and Mary there. Andy returned later and said Dad and Mary were picking up prescriptions at the pharmacy. Dad has an antibiotic, prednizone and a refill on his eye drops. He also had a cup for a sputum sample that he needed to get to the lab today. He took care of that with a coughing fit later on. Mary drove him to Star Lake once again to deliver it to the lab. When they returned Dad supervised cleaning out the refrigerator and freezer and stowing the leftover food. They packaged rolls and muffins individually and put them in the freezer. I worked on a chart for his new meds so he could mark them off as he took them...the instructions were a little complicated as the dosage decreased over a few days. Then we all headed for the Blue Spruce for dinner. Peg sat with us while we ate. Dad was eager to get home after dinner as he hadn't had a nap all day...or Mary either for that matter. Jean and I sat on the porch while I finished my wine. Jean headed for the cottage while I walked to Nice 'n' Easy to call Tom and see if they had today's Tribune Press. Mom's corrected obituary along with her picture is scheduled for today's edition. I was told it would be there tomorrow. Tom is still struggling with cats and can't wait for me to get home. I got a half-hearted commitment from him to make a stab at cleaning up their mess. We'll see what it's like when I get there.
September 25, 2004 - Helen: Here I am filling the time between flights in Chicago's O'Hare airport. I found the Chicago Bar & Grill in the food court; the high tables and stools are perfect for using the computer ... until the battery runs down ... and there are TV's all over the place playing football, of course. I'm between the G and H concourse because my flight's gate isn't listed yet. Let's hope I don't get lost in my "zone" and miss my plane! I saw Jean's Independence Air flight taxi out to the runway just ahead of mine. I thought I would see her on my concourse in Syracuse but she was on the US Air side. I will call Tom as soon as my plane lands and have him come and get us both. Jean will have a couple hours to kill in RDU ... luckily she has a good book with her ... let's hope she doesn't get lost in her "zone." Are we like Mom or what?!
Yesterday Jean slept in all the way to 9:30 am! She is giving her sinus infection a much needed rest. We got down to Dad's about 10:15. Everybody went to lunch at Hillside except me. I had too much macaroni salad for breakfast ... yes, macaroni salad! Instead I stayed behind and played scrabble on Mom's computer. I checked out the players of record ... Barb and Mom. Barb hadn't touched Mom's high score of 439, I believe. I felt the old competitive spirit stirring in my bones. Well, guess what, I didn't get near it either! Something to keep trying for. Story of my life. Mom's standards were something to keep trying for. What a woman. I felt her with me in a big way but had a smile in my heart and on my face. We are so lucky. Monica stopped in to show me the obit in the Gouverneur Tribune Press. Well, after all of Barb's persistence and hard work it wasn't any different than what appeared in the Watertown Times except that it had her picture ... what a nice picture. Monica said she would ask Charlie to laminate enough copies for everybody. We counted up all the adult type people, siblings, sons, daughters and grandchildren. If you get left out, let me know. I will see what I can do. Monica has been an absolute trooper. I don't know what we would have done without her. She didn't ask what we needed; she just did it. Bill Rice stopped by also. He had a menu for the Senior Citizens center in Edwards where he goes for lunch quite often. Dad has expressed an interest in joining Bill's group of cronies including George Hart and Kermit Jones. It will be a good place for him. Dad will be sorry he missed Bill. When everyone returned from lunch I continued on beating "Maven", the computer scrabble player, but still not getting near to Mom's high score. Peg came down with her incomplete Thank You notes. We located Mom's address book and figure she'll have just about all she needs in there. How will we keep track of people now. Mary made peas, potatoes and milk for dinner. She was very disappointed that Dad's microwave didn't behave like her own back in Mississippi. We had to nuke our portions and put the remainder back on the stove top to cook the potatoes through. It was gosh darn good when the potatoes were finally cooked. Dad has a couple servings in the frig for later.
When Peg phoned to say my friends, Terry and Colleen Friot, were at the Blue Spruce having dinner, I headed for Star Lake. I wished I had an appetite for stuffed haddock...it looked awesome on Terry and Colleen's plates...but my tummy was too full of peas, potatoes and milk. We got up to date on what was happening with them ... two daughters' weddings this year ... and me and St. Lawrence University. It was so good to see them. We sat and gabbed until after 9 pm. Andy went home ... he had driven Jean to Star Lake ..., Jean went to the cottage, and Peg came out to say good-bye before we finished. When I finally went to the cottage I did all that I could do to get the place buttoned up. We will call Dean Kerr to come and do his thing to get it ready for winter when I get back to NC.
Jean and I had breakfast at Hillside this morning and were down to Dad's by 7:45 am. Bob and Sue stopped by so we were able to good-bye them, Dad, Mary and Andy. We told Mary to be ready on 4 hour's notice to entertain us in Mississippi. Sometimes we can get $100 tickets when it is still hurricane season ... have to be able to live dangerously. I told Dad that I would become the new "pest" and call him every day for a while. He said good luck catching him at home. So, y'all send me updates just in case I'm not able to catch up with him.
September 28, 2004 - Helen: Jean and I arrived safely in Raleigh on Saturday. Kierstin and Sean picked us up and then we met Tom at Rick's cafe in Durham for dinner. The kids (5) were pretty wound up. By the time we got home all we had energy for was crashing into bed ... even though the cat mess was pretty evident. I do love cats. I do love cats. I do love cats. I spent all day Sunday cleaning and made a trip to Walmart for cat supplies...we're getting there. When I got back from Walmart, Rita and Crumb were there. Crumb didn't fly to New York for his Dad's procedure. He ended up being escorted off the Independence Airlines plane after vomiting from feeling so claustrophobic! We did get him to eat something with us for dinner ... he kept it down while he was with us. Tom-3 called to see if we made it back OK. He and his family had an adventure on 295 on their way home from his company's family event at King's Dominion. He managed to safely stop their van after blowing a tire. He said it was pretty scary trying to change a tire with 75 mph traffic flying by.
Getting up the next morning was very difficult. I was lame from cleaning and still very sleepy. I made it to work at the normal 8 am time instead of my usual 7:15 am time. I'll work my way up to it. When I checked my email I had a message from Audrey about the hematoma on Uncle Judd's leg. He went to the Dr. to have it checked out where it was lanced. I'll spare the description for those of you with weak stomachs. Judd says it feels better and doesn't hurt much as long as he doesn't stand on it too long. I phoned Dad about 10:30 am. He said he had just run out for a new supply of nitro patches. I guess that means he's driving again. He said he was doing find and didn't need anything. He said he wouldn't mind being checked up on regularly. Barb is working on 50th Anniversary videos for those who want one. Get in touch with her if you didn't get the email message about it. Nicky is working on the photo cds. Shannon Nulty had dinner with us Monday night ... her Dad was missing and she had just returned home from her boyfriend's. After dinner I got the rest of the cats treated for fleas and youngest ones combed out. They look a lot better already.
This morning Audrey emailed that Deb went down to help Dad get his drops in his eye. Dad was having quite a time with the dvd/vcr player. Bob will take him shopping for groceries tomorrow ... maybe Bob will help him get it straightened out. Audrey says he is doing really good and we shouldn't worry about him. Daryl will keep an eye on him.
October
4, 2004 - Mary:
I also have a few pictures of the funeral luncheon. Do you want those, too?
I'll probably have to ask Bill what is the best way to send them. I'm not
really computer adept.
I talked to him [Dad] briefly Sunday night around 9PM. Tried earlier but got
the
answering machine. Dodie and Jerry and Nora and Kevin and the girls had
been up for the day. They went to Harrisville for supper and then went home
from there. We had a bad connection. Dad could hardly hear me and I
usually have no problem making him aware of what I'm saying. Daryl was
there to put his eyedrop in so we cut it short. He did tell me Dr. B. had
given him 4 more Levaquin tabs to make sure the bronchitis was gone. Said
they must be gold lined. 4 pills were $15. Said his coughing was gone now.
He must be about finished with his eyedrops. Either today or tomorrow I
think is the last day.
October 9, 2004 - Jean: I spoke briefly with Dad last night. He was watching the Presidential debates and getting ready to do his nebulizer treatment. Diana had been over to clean and together they had made a big pot of soup. They put some of it in the freezer. Wow, he's getting domestic! He said he's getting fat. His new shirt and pants were getting tight. He thought maybe they had shrunk. Dr. B will have to put him on a diet. He sees Dr. B again on Monday. He had just finished the last of his eye drops, ready to see the eye doctor again on the 22nd. It was getting hard for him to talk because he needed his nebulizer treatment, so I ended the conversation.
I don't know about you guys but all those pictures on the website brought back some powerful memories. It was hard not to be sad and feel sorry for myself. Helen said she let me beat her at scrabble to cheer me up. I don't believe she let me win-it's just an excuse for her senility setting in. Thank goodness we have each other to talk to. It also helps to keep intouch with all of you.
Peg, I sent a copy of the first page of Mom's journal to Kaeleen hoping it would influence her. Thank you for sending copies to everyone. It was really insightful. I don't know if I could ever be as trusting and believing as Mom was. Maybe if I continue to go to church with Helen and Tom, it will happen.
October 10, 2004 - Peg: Dad is doing fine on his own for the birthday cards etc. I showed him where Mom's address book was yesterday so he is all set now. He seems to be doing quite well by himself. He is learning that he doesn't need to buy as much meat as he was or at least that he needs to put it in the freezer when he does. I went to cook dinner for him last night and had to throw out a piece of cod that he bought on Tuesday .. boy did it stink.
I also think he is going to purchase a new vacuum cleaner so Dianna doesn't have to keep bringing hers over. I told him a cheap upright with a hose attachment would be all he would need.
I think he is getting his own schedule down now, and I think he will do okay.
October 20, 2004 - Helen: I had email from Dick Rice today that said he was missing the updates on the Journal. It has been pretty quiet. So I took my first opportunity to call Dad and see what he is up to. He said he talked to Mary on the phone yesterday...Hey, Mary! Were you going to share with us? Dad says he's pretty much over his bout with bronchitis. He did have to have his blood pressure increased through that. He thought maybe Peg or Dr. B. irritated him and caused it to go up....nahhhh. He and Bob had lunch at Hillside today. Do you believe I asked him what he had for lunch?! ...a bowl of soup and a piece of pie. He says he has lots of soup stashed away in the freezer now so he can take it out and eat it whenever he wants. Annie is doing a good job with the cleaning and laundry. She cooks for him sometimes too. He said the temperature was in the 40's today - not too bad. Dr. Peterson changed his appointment on him this Friday. He has to be there at 10 am instead of afternoon. That was irritating to him. It will upset his schedule. He got one of the small bookcases emptied that sits against the chimney. He moved all the books to his stand where he used to have tapes. He's got most of his tapes boxed up now. I asked him what he was going to do with them and he said give them away. He asked me if I wanted a box full. I asked him if he wanted another cat. Then I told him that I would trade him a cat for a box of tapes. That wasn't a good deal for him. So I told him that I wanted a box of tapes just as much as he wanted another cat.
October 21, 2004 - Mary: Talked to Dad last night. Sounds good. Interrupted him getting his snack (Cheerios) fixed. He hadn't put the milk on them yet so I actually got him to talk for about 28 minutes. That must be a record!!!! Usually I'm lucky if he makes it for 15 minutes. It's turned cool. In the 40's most all day. Bob has been hunting but got really cold and was ready for coffee when he got to Dad's. Dianna had cleaned for him on Monday while he went to Tripp's. She went with him to Tripp's on Tuesday. Didn't go to do any shopping -- just stopped for milk at the little quick stop outside of Edwards. Prices high -- can't remember what he said he paid but over $3 for a gallon. $3.80 I think he said. Don't think he'll stop there again. He said he's been rearranging stuff. Emptied the book shelf by the chimney, boxed up some tapes, just general puttering to keep himself busy. Still having a time with the DVD player. Says his forgetter works real good. I know about that. Next time I call I'll make it when Andy is here so maybe he can talk him through it again. He still has his instruction sheet. Manages to do it right sometimes but then forgets how when he goes to do it next time. I think I'm related to him. I still get confused at Mike's because his is set up a little different from ours with surround sound, too. That means another remote and of course the twins waiting while I try to figure it out. I usually try to convince them to watch a VHS tape -- less complicated. Old brains are definitely challenged in the electronic field -- at least mine is.
October 22, 2004 - Helen: Yesterday was Marti's birthday. Hope she had a good one. Had email from Audrey with news of Sue & Judd. "Judd and I got back yesterday [10/20] about 4:30 and we were really tired. Our friend Marcia and Don had us over for a nice spaghetti dinner and it tasted really good. We came home and left the car until morning cause we showered and crashed. Judd had an appointment with his PA down here and she took off the old bandage and cleaned it up and sent him to a surgeon to check. We waited about two hours for him and he told us just to buy saline solution and keep it wrapped and change it twice a day and see him in two weeks. He can take a shower without wrapping it in plastic. He did say it would take well over a month to heal."
October 24, 2004 - Helen: Quoting email from Murray LaDuke: "For many years after we moved from Fine in 1958, we we[nt] back to visit frequently, but since my sister-in-law Ruth Durham died six years ago we had not been to Northern NY until this past August when we returned for Jerry Durham's wedding. I must confess I have not maintained much contact with relatives and friends recently over the years.
Earlier in August, I had heard from Hester about your mother's illness and we visited her, as well as Joe and Monica. Joe introduced me to your web site and I have visited it a number of times since. While my information technology knowledge is limited, it seems like a great job to me. My liberal arts background is very weak, as well, but the ballad is beautiful and a great tribute to your Mom.
Until a few days ago, I had not
noticed I was in a picture among the "Candids".
The lady in the picture with your great-uncle Dan and I is Mary
Manning from Hermon, NY. The house in the background is the house in which
I was born and at the time of the pciture was occupied by my maternal grandparents,
Edwin and Mary Dowling. They had both suffered strokes and lived next door
to my family so my mother could help look after them. They both died in the
very early 1930s. It was the height of the great depression and Mary Manning
was employed to stay with the Dowlings. As I recall she earned board and room
and $1 per day. I think she was widowed, but cannot recall for sure.
Your uncle Dan was a life long batchelor and called on the Dowlings and "Mary" with some regularity. While neither were yougsters, my mother thought a realtionship might develop.
My Best Wishes to you and your family. Murray LaDuke"
Audrey Hall: We
have been very busy at this camp, as usual. Last week, was the State Annual
Meeting, for New York State Federation of Home Bureaus, Inc. It was held at
the Holiday Inn, New Hartford this year. It has always been held in Syracuse,
being the central of the state. The facilities there have gotten very bad
the past few years. Food really bad. Being 1st vice of the State, it is one
of my duties to make all the arrangements for this meeting. I took it upon
my self to move it to Utica.
It was a very big success, everyone was very pleased with the Holiday Inn.
So we will continue to hold the Annual meeting in New Hartford next year and
hopefully years after.
A banquet is held at 6 p.m. After
the meal, I was installed as the President of NYS Fed. of Home Bureaus, Inc.
2004 & 2005. I was very pleased to have Daryl and Angie, drive down for
my SPECIAL TIME. David was unable to attend, as he is working in New York
City for the time being. I have been a Home Bureau member since 1956, now
that is a very long time to belong to an
organizaton. It is my second family, I like to say.
Daryl & David have been very
busy getting their new storage bldg. ready to move up to the sugar bush. They
have made it from an old, hugh gas tank. David did all the welding, it has
a floor, a big shelf, electric lights. They will use it to store, vacuum pumps,
vats, piping, fittings, all the
things they use for sugaring. Sure will save a good many hrs. not to have
to move all these supplies home after sugaring and back up when it is time
to get working on lines. They plan to build a shed roof off one side to make
more room.
Sure seems strange to have Little David in college. Kenny, is the only grandkid still in high school. He won't be for long as he will soon be 16. Where does the time go to. Ang's daughter, Lacey is just waiting to be call for corrections training, hopefully in Nov. Her son, Kelly was very sick and couldn't start college this semester, so patiently waiting for Spring to start.
Ang was up today and we made 19 Scarecrows. She takes these to her work and sells them. With being gone all summer I got way behind in making things for her. I sew all week and she comes up on the weekend and we put together. Makes for a couple nice days, us gals get together and play.
It was so nice to hear from so many on internet. Thanks to Helen for the BEAUTIFUL jobe she does as webmaster. The site is very nice Helen. I think it would be great just to have the newsletter come via the site. It is so nice to be able to click and hear from so many.
We have had to MANY FROSTS here, now. Seems like every morning the ground is real White. Sure better than looking out to see the other White stuff, which will be coming soon.
Daryl has started back to Bob's,
each morning at 6 a.m. and again in the evening. The eye Dr. says he needs
to have drops twice a day for the next month. Bob has toast and a glass of
milk all set out for Daryl in the morning. Most evening he has cookies and
milk. Now that just does Daryl's
SWEET TOOTH right up good.
Guess this is all the news from this camp for tonight. Everyone keep writing. Try to make the font a tad bigger.
October 26, 2004 - Audrey: Yes, your Dad is back on eye drops. I haven't heard why yet. Daryl says they are a different drop; they are clear this time and before they were milky. I was at Hillside last Friday for dinner, when he, Peggy and Annie came in. He was wearing his fancy sunglasses. I told him, he saw my car and put them on. I went over and sat to talk with them for a bit while waiting for our food to come. I ask him what was wrong with his eye. He said the Dr. told him he hadn't been wearing those sun glasses and that hasn't helped the eye. We tried to tell him that could happen. Guess he has to learn his own way, as he always did. His eye to me still looks like it won't open all the way. He seems to be squinting with that eye I think. Anyways gives Daryl something to do in the evening while I mess on this computer.
Daryl said he was going thru pictures last night when he got there. He said he was moving stuff around and giving some things away.
It was a bit warm here today, seemed good. Now if the damnable lady bugs would just go away. Probably not till it snows. Guess this is all the news from this camp for today.
November
6, 2004 - Peg: I
took Dad to Watertown November 3rd to get new glasses, when I checked with
him day before yesterday he still hadn't received them but they should be
coming soon. We picked out the first pair he tried on, imagine that, they
were also the cheapest. We also bought a new Bissell Vacuum cleaner an upright
with a hose attachment, that it working much better for him than the rainbow.
He let me give the rainbow to Cora Condrin as hers had gone up on her last
spring and she wasn't able to afford another. We also bought a new portable
phone we thought the other one had gone up since Mary had just bought a new
battery for it, but come to find out it needed to be standing up in the charger
to charge it properly. Bob told us that after we had already bought the new
one. We still need to work on him to put it next to his chair so it would
be easier for him. We also received a notice from Hospice that they were having
a fall candle light memorial service on November 10th in Watertown, but Dad
has decided he doesn't want to go because it is so far and late at night.
Dad has been moving things around in the house and was anxious to have Mom's
clothes out of the closet and drawers so Dode and I went through everything
day before yesterday. I took some things and so did Dode and then we boxed
up the rest in plastic storage containers and took them up to Helen's cottage
so that the rest of you can go thru them when you come home to see if there
is anything you would like. I also started to talk to Dad about her jewelry
box etc. I don't think he knows what to do with all of that stuff. I think
when he is ready we probably will do the same thing. If he wants it out of
the house we can bring it to Helen's or here and let everyone go thru it or
if you know of anything in particular that you would like, let me or Dad know
and we can set it aside for you or send it out to you. I just don't want to
be the one to decide.
Dad seems to be doing okay for the most part, but he does forget a lot ( what
time he needs to be somewhere, taking his pills, who he has talked to etc)
I don't know if it is anything to worry about yet or not it is really hard
to tell. He is still getting out everyday for lunch and or dinner and letting
me know when there is mail for me to look at, but he seems nervous all the
time because he thinks he is going to forget something really important. I
try to go down every other day and Bob usually sees him everyday except the
weekends now that hunting season is open. I think he is very lonesome but
trying hard not to show it. Dode and I are going to try to get something done
with his head all that flaky stuff is falling in his eyes so that Dr. Peterson
commented about it the last time he was there. I think Dode will come up Saturday
the 13th and apply Vaseline to his head for overnight and then comb it with
a fine tooth comb and then wash and rinse it good so that he can start using
the special shampoo and have it do some good. That is if he will let her do
it. For some reason he doesn't like to shower and wash his head very often.
Things at the Spruce are very very slow, Clark and I will have to make some
hard decisions real soon. I have heard that Phill and Trish and kids will
be coming for Thanksgiving and also Julie and some or all of her kids weather
permitting. I still need to hear from Nora & Kevin and then I'll be able
to determine what everyone can bring. I hope this finds everyone healthy and
happy. I love you all so very much!!
November 10, 2004 - Helen: I called Dad last night and was lucky enough to find him home. He said they had a little bit of snow but it was only going to drop to the 30's that night and be a beautiful day the next day. He goes back to Dr. Peterson on 11/23. Right now he is still doing the regimen of a drop in the morning and one at night. Daryl Hall is coming over each morning and night still to put the drops in his eye. He's an early riser and Audrey isn't so he enjoys Dad's company first thing in the morning. He had lunch at Hillside today with Peg and Bob. Yesterday he, Bob and Annie Folsom went to Tripp's and met Tee and Dick. Tee is doing fine. Nancy Casler is home now and getting stronger. He said he also saw Howard Rowand with one of his daughters at Tripps. Howard is probably about the same age as Dad and had quite a few kids too. Dad said he isn't doing the lunch scene at Edwards Senior Citizens yet. He wants to get his eyes all squared away and then he'll drive there to meet Bill Rice and other friends. He sounded pretty good and happy to visit.
I had email from Annie Marsh. She was stealing a couple minutes between students to say Hi. She says she is so busy right now she is almost frantic. She hasn't been to Fine in a couple weeks but wants to get up there soon. She can't wait for the Thanksgiving break.
November 30, 2004 - Helen: Happy Birthday, Dad. Jean and I called him earlier but he was not home. Hope he was enjoying his birthday doing something fun. We enjoyed our Thanksgiving down here. I was feeling especially worn out, and all the cats I have in my house certainly restrict what I'm able to do with regard to a dinner party, so we decided to go out for Thanksgiving dinner. Jean heard about this buffet place in Burlington from her co-workers. It was certainly a winner as far as I'm concerned. We ended up with a total of 11 people - Me and Tom, Jean, Erin & Pete, Rita & Crumb, Sam & Nikki & Mary, and Pat. We highly recommend Occasions. It is designed for special events, receptions, etc. The food was fabulous, only $10 apiece, includes, salad, beverage and dessert. We had turkey & gravy, ham, Southern fried chicken and roast beef. There were no potatoes when we got there, but I bet there were earlier. There were also no pies left, but with assorted cakes and banana pudding, who needs them. Afterwards we all went home and played board games. We talked to the folks at the Blue Spruce during the evening. We weren't able to keep Dad on the phone for long. With all the noise we could hear over the phone, we were not surprised.
We have been trading a lot of email lately. Are there any objections to putting it on the website under a "News" heading? I'm looking into password protecting our web page. That should make you feel better about it. I'll keep you posted.
December 23, 2004 - Julia Marsh: Merry Christmas to all family on the Cahill-Shene Web site! I hope you all are well and have a good holiday. We in Florida are enjoying a green Christmas as usual - the weather isn't the greatest (rather cool and damp), but certainly more comfortable than the below 0's we had for so many years up north. The only bad part is that we are so far from other family members.
I was so good to see so many of you when I was "up north" in September. Such a sad occasion, but we all came away with some good feelings also. We will all remember our very special Lucy Helen, and I's sure she is smiling on all of us from above.
Again - we wish you all a Merry Christmas and the very best in the coming new year!
LOVE TO ALL - JULIA, BOB, PAUL AND JOHN
December 27, 2004 - Peg: Just to keep you all up to date, Dad went to Dr. Baltazar today a couple of days before his scheduled appointment. A couple of days before Christmas he started having a runny nose, then Christmas Eve he was sounding kind of hoarse, and Sunday when I went down to see him he said he was coughing up the yellow stuff so I called first thing this morning and they told me to have him come right over. Bob took him over and she checked him, started him on levequin, predisone, and clortrimerol (to prevent thrush) he also needs to go have a chest x-ray and she wants to see him again on January 6th. He says he feels fine he just is coughing up that awful stuff. They also had problems with Dad's car on the way back and weren't sure they were going to make it home. Bob thinks it might be the fuel pump that John wanted to replace when he did the gas tank, so Bob drove it up to Little River and left it for John to look at when he gets the time. So the car will probably be in the shop for a week or so and Dad will have to depend on a ride from Bob or me to get where he wants to go. It's just as well the car isn't there then he won't be trying to go somewhere with it and get stranded in this cold weather. I'll let you know if anything more serious develops.
January 21, 2005 - Helen: Paul's esophaghectomy at Duke University Hospital went well this morning, starting at 9:30 am and finsishing about 1 pm. He is to be in recovery for up to 3 hours. Virginia will be able to see him for a short time during that period. I just spoke to Barb at the hospital about 3 pm and they hadn't come to get Virginia yet.
They took his entire esophagus and the upper part of his stomach as the tissue looked really bad. There was no sign of tumor or cancer. We assume all will be sent for biopsy.
Paul will have a swallow test next Wednesday. If that goes well, his intake will increase.
I arranged to have today off so I could be with Paul and Virginia. Unfortunately I have been chasing a bug (or two) all week so decided it would be best to stay away. The doctors are most concerned the first 4 days that Paul not get pneumonia. They recommend that any potential visitor who is the least bit under the weather stay away. I will wait until at least Monday before I try to see him.
Thank you all for your prayers and support. Paul will need them and more over the next few days. Address cards to:
Paul Shene
3129 Duke North
Duke University Medical Center
Durham, NC 27710
New! phone: 919-681-3129
Patient Condition Information
919-684-2410
I will post updates here as I learn more.
January 21, 2005 6:22 PM - Helen: Barb phoned from the hospital about 5 pm to say that Paul was awake and talking. She thought he looked awesome ... a lot better than she expected. He had been lying there wondering where everybody was. I guess the "clerk of the floor" was giving Virginia a hard time and some mis-information about being able to see Paul. Anyway, everyone was able to go in and see him. Paul was cracking jokes and seemed just fine. He said his incision is very sore. I goes all the way from his belly button to his sternum. Then he has another on his right? (or other right) shoulder. He feels thirsty, but of course can't have anything by mounth. He feels like he needs to cough but doesn't because everything is so sore. He said when he swallows, it feels the same as it did before. Rita and Crumb had already left as they had to pick up Chris. Sam and Nikki were getting ready to leave and Don was on his way. Aidan will stay with Rita and Crumb next weekend. He has stayed with them before so he will be in familiar territory. Virginia will be staying right at the hospital through the weekend.
January 22, 2005 10:00 AM - Helen: Virginia called from the hospital this morning to give an update on Paul. He is much more subdued this morning and is in a lot of pain. He hasn't wanted to talk to anyone. He was supposed to get a chest x-ray this morning but he was in too much pain to get out of bed. They will come back later with a stretcher. The plan for today is to have him walk. Virginia is unsure whether that will happen. Maybe the nurses among us can reassure us that this is to be expected? Paul does have a phone in his room. Virginia welcomes anyone to call. But today, Paul most likely will not want to talk to you. Phone in Paul's room: 919-681-3129.
2:00 PM - Helen: Virginia just called with another update on Paul. His caretakers finally settled on fentinol for pain which is doing the trick for him. He feels much better now. He was down at x-ray for his chest x-ray, managing to get on the stretcher OK, and said he would try to get up and walk when he got back. This news is very encouraging after his rough start this morning.
6:17 PM - Barb: Don and I went to the hospital this afternoon at about 3:00 PM. Paul was awake but visibly in a lot of pain. Virginia did most of the talking for him. He was aware we were there, but kept his eyes closed and didn't try to talk too much himself.
Virginia said that he had a good early afternoon. Sometime after she called Helen this morning, Paul got a dose of a stronger pain medication that first helped him sleep, then kept him feeling pretty well for a while after he woke up. She said he did get up and walk a few steps down the hallway and back and was eager to talk. When the pain came back it was pretty severe through the lower abdomen. He was breathing pretty shallow trying to limit his own movement.
When we got there they had just paged the nurse to get more pain medication. He was rating his pain a 7 on a scale of 10. I suspect it may have been worse than that. What little he did try to say was faint and hard to hear. He was definitely hurting, but putting on a tough face. While we were there, he got more pain medication that worked within just a couple of minutes and he was sleeping very soundly when we left. They promised to adjust the dosing of his epidural so that his relief would be more constant.
Virginia will spend the night in a recliner in his room again tonight. Definitely not the most comfortable arrangements for her, but Paul really wants her there since when his pain is bad, he has a hard time telling the doctors what he needs from them.
Keep us posted on Marcus, Marti! We're praying he is well enough to come home soon!
January 23, 2005 11:45 AM - Helen: I talked with Virginia on the phone this morning about 10:30. She told me about Paul's bad spell yesterday when Barb and Don were there to visit. When they did get his pain medication adjusted it lasted all night. He is feeling better this morning and Jean and I were able to talk to him on the phone. His voice was very strong but he doesn't sound like himself yet. He is full of praises for the team who did his surgery, especially his doctor. Duke is the place to go for this kind of treatment. He said he wasn't the least bit hungry and I wouldn't bother him by telling him about the wonderful breakfast Jean made for us ... broccoli and swiss cheese omelets! If some of you reading this are not on the email chains, Marti & John's Marcus is in the hospital with pneumonia. We hope the little (?) tyke gets well soon.
January 24, 2005 - Marti (writing on 1/23): Marcus is doing a little better, but his oxygen saturation levels are not quite high enough on room air to get out of the tent yet – hopefully tomorrow. I’m guessing that they’ll keep him 24 hours after getting out of the tent. He’s definitely eating much better and acts much more playful and annoyed about being stuck in the tent. I’m home with Jenny tonight for the first time since Marcus went into the hospital. Neither John nor I has a lot of leave time from work, so we’re taking turns this week staying with Marcus while the other goes to work. My turn to go to work tomorrow….. Jenny’s not feeling well now – I’m afraid she may need to see the doctor tomorrow too, if she doesn’t sound better in the morning. She’s been really great about staying with Nora and staying with John’s brother – doesn’t seem to mind at all. She just kisses us and says “Bye Mom & Dad!” Thank God for that!
Well, I’m turning in early tonight. Gonna let Jenny snuggle in with me tonight so we can watch a little bit of a movie before we fall asleep. I really miss her.
Thanks for all of the thoughts & prayers. We’ll keep you posted! By the way, we’re in room 311 at Oswego Hospital (349-5857) if anyone wants to visit.
1:25 PM Marti: Hi everyone! Marcus was discharged from the hospital this morning. John said they took him out of the croup tent late last evening and the doctor saw him this morning & released him. He is like a brand new baby today! He’s still not eating as much as usual, but he’s happy and playful – I think he’s really happy not to be flat on his back any longer! He just wants to be held and played with all the time.
Thanks for all of your thoughts & prayers!
8:14 PM Helen: I talked to Paul on the phone this afternoon about 5 PM. I wanted to let him know that Jean and I would not be out to see him until tomorrow, 1/25. I'm still a tad disease ridden ... my opinion. He sounded wonderful. What a difference a day makes. They finally settled on the right pain medication for him to use along with the fentinol ... I can't remember the name; I wrote it on a piece of paper which I left on my desk at work. His doctor's partner was in to see him today along with his entourage of students and interns. Paul said he walked quite a bit today on his own. He didn't expect to see Virginia at all. She went home last night so Aidan could go to school. She woke this morning to frozen pipes. She spent most of the day getting them unthawed. But she was successful and she and Aidan were in to visit. Paul was especially happy to see Aidan. I suggested to Paul that he use this "down" time to keep a journal. There's a good chance that someone in the family will benefit from his notes and observances. He still says Duke is the place to be for this type of surgery. He is eager to talk and is definitely doing much better.
January 25, 2005 - Helen: Jean and I went to see Paul tonight after work. Jean picked me up in front of my building at 5 pm and we had a quick dinner at K&W Cafeteria. Neither one of us remembered to bring the driving directions with us, but luckily are collective memories were enough to get us there without getting lost. It was a pretty easy trip from Chapel Hill even with pretty heavy traffic. We chose to take the hallway over the tram on the way in and found Paul's room pretty easily after a quick consult with the person on the information desk. Paul saw our reflections in the door window glass as we were coming down the hall. He was happy to see us, wide awake and looked awesome considering all he has been through in less than a week. His room is very small. Barely room enough for his bed, 2 chairs, and small bathroom in one corner. He does have a window in a corner just big enough to hold it. His bed looks like something from a futuristic science fiction movie. It has all kinds of cables, buttons, switches and led screen, outlets, etc. Very impressive. Without much prompting Paul showed us his incisions...wince! He was stapled back together. An acquaintance from work, Beal, came to visit while we were there. He is a very charming man with a very thick southern accent. I thought he was saying his name was "Bill" but it is really "Beal." Paul said he was totally without pain at that moment and felt very good. He had two bunches of flowers and a few cards, books, etc. He said both Aidan and Virginia were sick so he told them not to come to see him. Before we left, Barb and Don came for a visit. They planned to walk the halls with Paul after we left. On the way back to the garage we took the rapid transit system. It is similar to the cable cars you see at airports only on a smaller scale. There are only two cars - one goes east to the old hospital and one goes west to the parking garage. We were back home by 9:15 and could have got there sooner if Jean didn't have to take me to my car in the Park'n'Ride lot. It will be an easy trip from Graham out on 85 to 147. We are pleased with how Paul is doing.
January 26, 2005 - Virginia: Just wanted to let you know that Paul passed his swallow test today and had his first glass of water since surgery. They are working on getting him disconnected from his array of fixtures. I am hoping by the time I get there tomorrow, he will be disconnected, so that he can walk around without his IV tree. Tomorrow he should be able to have jello and juice and other liquids, and Friday soft foods. He looks better everytime I see him, I still wince at the size of his incision on his belly, much larger than either of us had anticipated.
January 27, 2005 10:21 AM- Virginia: I just talked to Paul and got some not so great news. He talked to Dr. D'amico today. The doctor said that there was cancer in his esophagus, but I think just on the surface. I don't think it had gone to the 2nd layer of his esophagus, but until I talk to the doctor I will not know for sure. Paul, I think was so blown away by that news, that he could not really ask any questions. I asked him if he would need chemotherapy and he said no, not that he knew. He said the doctor may keep him until Sun. or Mon. I am going to the hospital shortly and hopefully talk to the doctor myself. I am still at home because Aidan had a fever of 102 last night so I brought him to the doctor because he has had a cough for about a week. He has bronchitis and impetigo and the doctor put him on antibiotics.
5:22 PM - Barb: I
just called Paul's room and talked with him directly. He sounds great. He
said the doctor told him that the cancer did not make it through the first
layer of the esophagus, so his chances of remaining cancer free for life are
better than 95%. No chemo or any further treatment is necessary.
He's been drinking fluids all day and said other than feeling bloated from
being constipated, everything is settling fine. His doctor wants him to stay
in the hospital through Sunday or Monday because he wants him on solid food
before he leaves.
He's talkative and eager to take calls from anyone.
7:01 PM - Virginia: I have been on vacation since last Friday, but will return to work tomorrow. Paul has been eating jello, chicken broth and juice today with no problems going in, only problems coming out the other end. He only feels uncomfortable because he hasn't had a real bowel movement yet. I didn't get to speak to his surgeon today but as far as we know, the cancer was only in the first layer of his esophagus, and had not penetrated through to the next layer of his esophagus. The doctor said that he could say that he was 95 percent cured just by taking out his esophagus, but couldn't say 100 percent just because there was cancer found on that first layer. The doctor wants to keep him now until Sun or Mon just to make sure of how his food is going down and slowly progress him to real food. Thanks for all your prayers and thoughts.
January 28, 2005 - Virginia: Paul's bowels finally seem to be working again and he had oatmeal for breakfast and may graduate to other foods tonight. They now say they will be discharging him tomorrow around lunchtime. He now is experiencing back pain near his kidneys, which they think may be just muscle strain. Thanks again for your continued prayers for him. We really feel thankful for all the family and support that we have from everybody.
February 4, 2005 - Virginia: Pictures of Paul's incisions.
February
9, 2005 - Helen:
I missed talking to Paul last night on the phone while we were out getting
our pictures taken for our church directory. Jean talked to him and said he
has lost 25 pounds. He gets really thirsty because he isn't able to drink
as he eats. He only has
room enough in his stomach for about a cup at a time. He is having to learn
to eat all over again. He hasn't had much energy yet. He visited his work
place to pick up some flowers that were sent to him there. He gets his staples
removed tomorrow. Crumb spent last weekend with him just hanging out, watching
movies ... the two crips.
February 14, 2005 - Helen: Tom made use of his rain check for Richard Petty Driving School Saturday in Charlotte. He had the 2nd best time in his group! Erin and Pete went with us and they each did a "Ride-Along" at 165 mph around the track for 3 laps with a professional driver. I heard someone say that "DW" was somewhere about but none of us saw Daryl Waltrip. I'm not giving away any more details. You will have to talk to Tom, Pete and Erin.
I was suprised yesterday by a Happy Birthday phone call from Dad. He really sounded good. He said he didn't have the right birthday card for me so decided to phone instead. He didn't talk long as he soon got out of breath. He said he was due for a nebulizer treatment.
Bob and Sue are coming for a visit next week. They will make reservations at the Hampton Inn near Paul where some of us stayed when we were here for Nikki's wedding. We will plan a get together for Friday night before they take off for home on Saturday.
I don't have any current information on how Paul is doing. I feel like I've lost a week of my life while messing around with wireless networking and trying to get it to work with my RoadRunner connection at home. I have it nailed now! Bye for now. Happy Valentines Day.
February 23, 2005 - Helen: Bob, Sue and Eric arrived late last night (actually early this morning) after driving all day from New York. I was operating under a "Harry Potter spell" so I did not pull myself out of bed to see them. Jean said they were really tired and anxious to get to their hotel. Jean is taking tomorrow off so she can spend some time with Erik. The gang will be getting together at Paul's on Friday evening for a "brown bag" dinner. Paul's is the most centrally located and he will be able to take a nap if he gets tired. Tom and Allison and the kids came out last weekend. They arrived on Saturday in plenty of time for go-cart fun. Jean went and got the Thompson girls so they could all play together. We topped the evening with a bon fire and toasted marshmallows. Jean was dragging after driving the girls back home to Clayton.
February 24, 2005 - Mary: Just
a quick note. Went to the GI doctor yesterday to get the results of my last
EGD. Everything is great -- no sign of any dysplasia and the Barretts is improving.
Have to continue the Prevacid 3Xs per day, Carafate 4Xs per day, and Pepcid
Complete at bedtime. He also gave me a couple of samples of a drug I've never
heard of. It's Zegerid 20 mg. It's a powder that you mix with two tablespoons
of water and mix till dissolved. Drink that and follow with a glass of water.
Dr. Z. said it has sodium bicarbonate in it and I
should keep it on hand in case I'm bothered with any heartburn/reflux. He
says it's very effective and will make symptoms subside completely in 15 to
20 minutes. Just thought you all would like to know about it in case you'd
like to ask your doctors about it. I haven't had cause to try it but he
assured me it is very effective. Think I'll try to find it on line and read
more about it. I just got the samples with no further info attached. Haven't
heard anymore about twin escapades. I guess no news is good news.
Helen: I talked to Paul and Bob on the phone last night. He and Sue and Bob spent part of the day playing golf. Paul said he did really well and swinging the club didn't cause him any discomfort at all. Bob left his score card with the cart...you can talk to him about that! They went out to dinner together and said that Barb would be stopping by later. Jean met Kierstin in Durham so she and her crew could spend some time with Erik. We are looking forward to our get together on Friday night.
February 28, 2005 - Peg: Clark has been having trouble with his legs lately, more than normal so I mentioned it to Dr. Baltazar the last time we were there. She made an appointment with Dr. Gosselin (he works with Dr. Minaert, the surgeon who did Clark's first vascular surgery)) as Dr. Minaert is off with a bad neck. Dr. Gosselin scheduled Clark for an MRAI (an MRI of the arteries) which he had a couple of weeks ago. We went back for the results last Wednesday. Clark has a blockage in his left iliac artery, it is located right at the get go, the top part of the artery as it leads to his left leg. On the MRI it looked like it was about and inch or so long and pretty well occluded. He is scheduled to have an angioplasty on Monday March 7th. We go for his pre-op testing this Thursday and he has to be at the Medical Center at 9:00 am on Monday the 7th. They will keep him overnight and then release him on Tuesday. Dr. Gosselin said this is almost a text book case for an angioplasty, I sure hope so. Please keep us in your prayers. I will let you know how he makes out.
March 2, 2005 - Marti: Hi everyone – I just got back from a doctor appt. I have been spotting some today, so after calling nurses 3 times, I freaked out and demanded to be seen today. She said I’m not actively bleeding now, but she also said my uterus doesn’t feel quite as big as she thinks it should. I have a sonogram scheduled for tomorrow morning….. I just have a bad feeling about this… I’d appreciate your prayers for this little one, whatever the outcome! I’ll keep you posted….
March 3, 2005 - Marti: Hi everyone. The sonogram showed that the baby died after 8 wks 5 days. I’ve decided to let nature take its course, rather than schedule a d&c right away. They said if nothing has happened within one week, they’ll do the d&c anyway. John and I have taken the afternoon off to just rest together. Tomorrow, he’ll take the kids to the sitter and return to work. I’ll be home cleaning the house and just getting some alone time until everyone gets home.
Thanks to everyone for all of your prayers! Makes me feel better to picture Mom holding our baby in Heaven.
March 13, 2005 - Peg: Clark's procedure went very well [3/7] and other than having a hard time getting released the next day (2:30pm before he saw the doctor) things are back to normal. Clark is his grumpy ole' self and back to doing everything he wants to. I thought I sent an email to everyone letting them know, but Mary called yesterday and said she didn't get one so maybe I just thought I typed it and sent it. The mind is the first to go.
March 15, 2005 - Marti: Hi everybody – Just wanted to let you all know that I had another endoscopy done this morning. The dr. hadn’t wanted to do it while I was pregnant, so figured I’d call & get this done now, giving plenty of time to get the results before we’ll want to try to get pregnant again. The preliminary report is that she saw no ulcers or erosions this time. She did take multiple biopsies of the lower esophagus as she had planned. Should find out results at my next appt with Dr. Satterlee on 4/6.
We’re all doing fine otherwise… Kids are growing and growing and growing!! And I can almost feel Spring in the air!! Not sure if it’s too soon to hope……. Take care! We love you, Marti, John & kids
Helen: I took a personal day yesterday and accompanied Erin to her endoscopy. She has been having some pretty severe stomach issues over the past 3 weeks. I'm happy to report that she has no erosions, ulcers or esophagitis. She does have a small hiatal hernia...big surprise. With the kind of pain and discomfort she has described to me I don't think this diagnosis gets to the root of her problem. She has been checked for gall bladder disease [sonogram] and was given an all clear. Do those tests ever fail? She will have the blood test sometime this week for H-pilori...probably should have done this first. I think I have gotten her to agree to do a "symtoms diary" to record all incidents and the food she has consumed. She recently found out she is allergic to Aleve ... and most likely not the copaxone she was taking for MS. She is scheduled to see her neurologist in August ... unfortunately he is scheduled so far out she feels she is better off to keep the existing appointment. I suggested to her that it is time to talk to "the nurses." Not that they are smarter than her doctors (I don't know, they could be!) but they definitely know this family better! We hope we get to the bottom of this soon.
Pete is also suffering these days with back pain. He thinks he pulled a muscle that runs along his spine...one of those long ones. Like any male he avoids the doctor at all costs. So the two invalids take turns taking care of each other.
March 20, 2005 - Helen: Just checking in. Jean and I went to see a couple of movies last weekend. We had to pickup her car from the garage where it was in for repairs, so why not. We saw Hitch with Will Smith and Diary of a Mad Black Woman with Tyler Perry. Both were a lot of fun and made us laugh our heads off. Good therapy for two old ladies. Noel, our "drop-off" dog, is going to have puppies. Anybody interested? We also have 2 cats that are big with babies on the way. Make that 1. Mama Kitty, the female siamese, already had her litter. On of them ended up on the patio stones at our back door. Mom was busy chowing down with the other outdoor kitties and the little one, with eyes still closed and umbilical cord still hanging, was on its back with feet in the air yowling its head off. We brought it inside and I put it inside my shirt to get it warmed up. It eventually settled down. We didn't have anything appropriate to feed it so we tried to give it water. When I put a drop on its mouth it made its way in. The next day Jean went to pick up her grandkids and stopped at the Vet in Carborro on her way to get some formula. I kept the kitten warm with a heating pad while I did my chores. By the time Jean got back, Mama Kitty had come looking for her lost one so I gave it back to her. I hope she takes better care of it.
Tom had his share of excitement on Friday. We listened to the weather report before he left for worked so we knew that people were being advised to avoid the beltline for a couple hours because of ice. Tom was careful but we can't say the same for everyone else on the road. He was able to slow to a stop on the ramp to 540 behind a couple other cars that spun out. He no more than got stopped when someone ran into him knocking him into the car in front of him. His truck got banged up on the front end and the back end but he wasn't hurt at all. One woman in the car ahead of him was taken away in an ambulance. She was conscious but couldn't move. I was able to watch the progress of the cleanup from my web browser at work. There was a helicopter hovering over the scene sending pictures of what was going on. That was pretty neat. You really have to get Tom's version of the story with all the details. I'll leave that to him for when he sees you.
May 31, 2005 - Helen: Peg called us this evening to say that Dad is in the hospital. He did 3 nebulizer treatments this morning and was still unable to catch his breath. He called Bob, who called Dr. B. who said to take him to the emergency room. It was decided to admit him for a couple days in order to get his breathing straightened out. Dr. B. said his medicine would probably have to be changed. Peg assured us that his condition is NOT life threatening at this time.
June 1, 2005 - Helen: When I got home from work Tom told me we had messages from Rita and Crumb. Peg had called them to say that Dad is doing better and probably would be discharged from the hospital tomorrow.
June 2, 2005 - Helen: I talked to Peg tonight and she said that Dad was discharged from the hospital this afternoon. Dodie and Jerry had come up to see him so they were there to take him away. The PA wants Dad to be checked up on 2 or 3 times a day for the next few days. He will continue on prednisone and levoquin for a while yet. Dad, Dodie and Jerry had dinner with Peg &Clark at Hillside. Dodie and Jerry got Dad settled in at home afterwards. Peg said he is doing a lot better.
June 21, 2005 - Helen: When Tom and I finally got back home on Father's Day we had a message from Barb saying that Dad was taken to the hospital by ambulance early that morning. Nora and Kevin were visiting with the girls and were there with him. When I called Peg for an update she had just come from the hospital and said that Dad was doing a lot better. He has a little pneumonia this time and will be in the hospital for at least a couple days.
Peg: Dad went home from the hospital this morning around 10:00am, with prescriptions for levaquin and prednisone again, also with an increase in his blood pressure medication and a different med for his diabetes until he sees Dr. Baltazar on Tuesday, June 28th. She (Dr. Wright) also gave him a script for a stool softener and miralax as he has had some problems there too. I have a phone number to call to set him up with life line if he is agreeable to it. I will be talking with him about that this afternoon. She also wanted public health to visit at least once to make sure he is doing okay with his personal needs. (He didn't sound real crazy about that, but I guess he agreed to it.) I talked with Dr. Wright about the possibility of keeping Dad on a low dose of steroids to help his breathing and she agreed that it would be a good idea as he responds so well to it. She suggested I talk to Dr. B about it as she would need to monitor him quite closely if that happens. He was doing very much better and was anxious to go home this morning. I will try to keep you posted if anything changes.
June 29, 2005 - Helen: I'm getting excited about going to New York. I think we're ready - even have all the animals covered. Haven't seen much activity in email, etc. Must be everyone is saving the gab until we get together. I have arranged to work from home tomorrow ... technology is really great sometimes. Then I can man the washer and get work done at the same time. We will head North after work tomorrow - hopefully on the road by 5 PM. We'll stay over in Hagerstown at our usual Motel 6 that gives the discounts to AARP members. We may make a quick stop at the Phil Nulty's in Cortland and be at Camp O by dinnertime. See y'all soon.
