Are Birthday Cards Gone?

Anna was looking for ideas about what to get her mom for her birthday in May of 2022. I suggested a box of blank cards to send for any reason. Cheryl has always kept greeting cards that are sent through the mail for fund raising purposes from various religious and chronic illness organizations. Some would be sent to her mom when Elaine was still alive. Some of these are still in residence in Cheryl’s office.

There is a small green box shaped like an old country mailbox near the phone in which these cards used to reside. They are no longer there but are spread here and there amongst other paper and chaff in her office. I had hoped that Anna’s present would take up residence in the mail box topped box but that did not happen.

In mid-April of 2022, I suggested that she should make a list of the May birthdays and we would make a trip to the store to get some cards to send. The idea of making a list is hers. She readily agrees with this idea but as her Parkinson took hold of her cognitive centers she is unable to do this.

A few months back her engineer husband suggested that rather than a list she should write each name on a post-it note and as she selected cards in the store, she could put the post-it note inside and she would know who the card was for. Later when she wrote the card and addressed the envelope she could note what date she wanted to mail it and stick it to the front when she sealed the envelope. That solution met resistance because of the NIH factor. (not invented here) But over time she adapted it to her way and used it for awhile.

In April I helped her make a stack of post-it notes with names and we went to the store for cards. Few of those cards were ever mailed to anyone.

In May I waited to see if there would be a panic mailing of cards. May came and went.

Our daughter-in-law Mavis’s birthday is the 1st of May. Hers was the only May birthday card sent. How do I know? In a previous month there was panic as Cheryl realized she had forgotten where she had put the stamps. I now keep track of the stamps. I often have written about her punding. Sometimes she will pund stuff into obscure places. We all do this – not punding – but set things down in obscure places. With PD it is merely harder to find out where it was parked. The stamps turned back up a week or so later after I had bought a new roll.

Cheryl’s birthday is in May also and her brothers and sisters often gather for a “sibs” dinner to celebrate such an event. These pictures are from that gathering at Gabbey’s cafe.

The birthday cards acknowledgement of the family birthdays seems to have been forgotten. It is probably another nuance to he loss of sense of time, calendar, day, week. Our son Scott’s birthday is the 6th of June. We were at our daughter Anna’s house on his birthday. Anna asked her mom whose birthday was today. Cheryl looked at her with a confused look.

I felt sad about several things. I have been writing significant events on a white board that I put on the table each morning so that Cheryl knows what is happening this day. I have not been writing down birthdays. She forgot Scott’s birthday. Of the few cards that I think she should send we forgot to send one to our son. A few other sad thoughts drifted through my head. But most of all I realized that she had lost the birthday card duty. She had forgotten it. This is a long time thing that she did for our family and her mother while Elaine was alive. This is a longtime activity for her. Her short term memory has been off or fading for sometime. I had gotten used to the fact that it is necessary for me to remind her of events constantly. (It is annoying but over time one gets used to it.)

Christmas, birthday, invitation, funeral cards are all gone. An actual paper card with a USPS stamp is how Cheryl learned to acknowledge things. She never adopted Facebook or any other social media platform for those.

Parkinson is a series of small setbacks. Sometimes it is so gradual it merely seems like life going by. It is easy to attribute all behavior changes to Parkinson, after all, he entered our lives about a dozen years ago and has made dramatic changes to how we now do things. Lot’s of older folks develop an apathy for life. They do not need Parkinson’s disease to help them. It is a kind of disinterest in life. Doctor’s have recently discovered this. Geriatric doctors ask specific questions about it when visited by their patients.

This topic about the birthday cards occurred to me in early May when no panic mailing of birthday cards or frantic searching of the black book or of the old address books that we had in our old house or her mom’s address book. It was a sudden occurrence in her behavior.

Could I be watching apathy creep out from behind the curtain? I will have to be alert to this behavior. So far Cheryl does not seem apathetic. She does have a fading memory. Are they the same?

Carpe Diem.

PT Goals

Ten meter walk – How fast does it take to go 10 meters? (36 sec) The metric system is everywhere except in American society.

This U-Step is  a great walker. Why don’t you use it inside? It is a great question from the physical therapist. When I first brought it into the condo it merely sat next to the dining room table until we went somewhere but in Cheryl’s defense there are a lot of close by things, chairs, tables, half walls, door handles and grab bars that she ignores the walkers during the day unless she is feeling very unsteady. We have had a standard looking walker for quite some time. She worries about bumping into things.

We do use it when we go anywhere away from home. The wheels track in what ever they got pushed through elsewhere. I do not care about that. It is old carpet on the floor. It cleans up good when the carpet cleaner folks show up. It is just another maintenance item for the budget. I can encourage her but usually it sits by the dining room table. – This goal is use the walker more for safety.

Sit to stand – scooch forward, lean forward… like a rocket ship… push up off the arms of the chair. Stand to sit – lean forward and reach back, hold the chair and sit. The PT person provided this as a recipe for standing up. I have helped her with this at home but when we start it from a sitting position I can she her become anxious about making a mistake and “getting up wrong.” I am unsure about how to help her past this feeling.

Balance 7/56 — I took this note but I am unsure of its meaning now. I think it is intended to mean that of several tests for balance (56) Cheryl has a poopy score for balance. She has to think about balance. In most of us it is an autonomous function.

Difficulties with balance and walking are linked to the brain changes that take place with PD. For people who don’t have PD, balance is automatic, a reflex. But Parkinson’s affects the basal ganglia (a part of the brain essential to balance). To compensate, the brain assigns another brain area — an area used for thinking — to take over. The thinking part of the brain, mainly the frontal cortex, can’t control balance automatically. The result: for many people with PD, balance becomes less automatic.

https://www.parkinson.org/blog/research/Walking-with-Parkinsons-Freezing-Balance-and-Falls

more exercises

Stretch – lay like a T shape raised knees over to one side back to middle – one side then the other.

Sit on a chair – Reach up open the chest – bring arms to horizontal – twist trunk to one side and then the other with arms outstretched.

Carpe Diem and many trips to the PT experts. Next up – Occupational Therapy.

I Want to go Home

A recurring theme in Cheryl’s head is “when are we going home?” I try at first to answer this by saying that’s good because we are already there. This rarely works. Sometimes it merely makes her angry with me.

The conversation is confusing when we reach this point. I can say to her, okay put on some clothes and we will get some lunch and come home. So, how would you find clothes for you in a place where you did not live? This is the first confusion but she accepts the fact that she has all her clothes here without accepting the truth of “home”. Even I am confused.

Later today, she is dressing now, we will go find some lunch somewhere and come home again.

Physical therapy is on the schedule for later this afternoon. Hopefully she will be tired after this activity.

Carpe Diem.

Boosted against Covid

In my never ending battle to keep us safe and healthy and because Cheryl kept pressing me to do it, I scheduled us for a second booster shoot for the covid virus yesterday.

I got some chicken out of the freezer for dinner and helped her get moving in the morning. The morning was busy for me because it was my last care partner class. From that I have a mountain of valuable information about various service providers for the future. We are not there yet but in a few years we will be.

Linda appeared a little early and we chatted for a bit and then I was off to class. When I returned Cheryl had gotten cleaned up and dressed herself. I think the big new bed is giving us better rest overnight.

Our appointments at Walgreens were scheduled for 4 PM and 4:10 PM. We got to the store with plenty of time to fill out forms and prove who we are. Except for me. I had forgotten my wallet and ID. (Alas and drat!) As Cheryl came down the aisle pushing her U-Step walker I explained that I had forgotten my wallet. I asked her to sit down near the pharmacy desk and I would return in a few minutes. This Walgreens is about 5 minutes from our house. I zipped home and back to the store. When I returned she was sitting in the chair filling out a form on the clip board that the pharmacy assistant had given to her. Ordinarily this small task would have been confusing and incomprehensible to her. She had even found her ID and previous covid info in the purse of many pockets. I am beginning to understand that much of her confusion and mental fog of late may merely be poor sleeping patterns.

It is hard to overemphasize how important good sleep and rest is. The big new bed seems to help. One less Carbdopa/Levadopa CR seems to be beneficial also. She seems brighter during the day and not so inclined to pund around in her office at night. She is sitting in her recliner with me to watch a show or read a magazine article more during the past couple weeks.

She had plenty to eat at dinner. She even complained that I had not made gravy to go with the chicken. It was a normal (mostly) conversation during dinner between two people who had been married for 53 years. (Smiley face here) Later in the evening she felt a little chilled. I went to recover her sweater from the backseat of the car where it had been warming in the 90 degree heat for several days. We sat for a bit longer and then she got ready for bed. She returned and we watched the PBS show NOVA for an hour and we went to bed at 11 PM.

We were up again at 1 AM until about 3 AM. I am going to blame the booster shot. I was having difficulty also.

Today we slept until after 9 am. She seems rested. I know I am. It is off to the doctor today for our semi-annual wellness check. I feel well. She seems well.

Carpe Diem

Who am I?

Last night was a peaceful night. Cheryl laid down in the big new bed at 10:30 or so. I finished up a couple things and joined her at a quarter ’til 11. It was a restful night. I awakened to go to the toilet at 6:30 am and so did she. Cheryl laid down again but I got up.

At about eight I went to check on her. She was awake laying in bed. The creaky door had startled her. I apologized for wakening her from her dreamy state. As I closed the door to return to the living room this conversation ensued;

Cheryl – Who am I?

Me – You are Cheryl.

Cheryl – And who are you?

Me – I am Paul. We’ve been married for about 50 years.

Cheryl – Well, happy anniversary!

I do not know what to make of this conversation. As I left the room she added, I love you.

I can understand that in the early morning hours she is a little more confused than normal. She is still tired. I do not know how well she slept. I can report that the couple of times I got up overnight she was in the same position. She moves little when she sleeps during the night. At about 5 am she was having a conversation with someone in her sleep but she often has these conversations. I do not always hear them.

We will see what the day brings. So far, my youngest son has invited us to dinner on Father’s Day which is Sunday.

Carpe Diem.

So Is It Okay To?

I am currently attending a class for care partners. It is put on for us folks dealing Parkinson’s disease interlaced with dementia and Alzheimer’s disease in our care givee. We have spent a lot of time on taking care of ourselves and making sure we are healthy mentally and emotionally as well as physically. It it easy lose track of those things when you become very involved in the day to day care of another.

Time away from care giving is very important but is it okay to change the social situation a bit and let people in that are in a similar place in their lives?

The idea of a support group meeting allows this to happen but there is a different social dynamic in a casual lunch, friends collected in a bar to solve world problems or gathered for card games with casual conversation. Support groups tend to try being informational rather than random conversation. Support groups that are attended by both the chronically ill patient and their care partner tend to be awkward somehow. If the care partner should feel the need to vent and whine a bit, they will feel embarrassed to do that.

Is it okay to change the social situation a bit and help the Parkinson person participate with you and others.

Admittedly it is a different dynamic. The caregiver has the social burden of not correcting their partner in conversation. Dementia does that to conversation. I want to jump in and save her from embarrassment. What if no one did that? To an outsider it might sound like a game of post office gone bad. So what?

If Frances was elected president then pumpkins would cheaper at the store. That’s true. That’s true and the police are trying to find new shoes for their cars. Those lights on top can fall off and the car hurts from that. Is there any ketchup for the ice cream? Did she bring extra napkins. I see a bug. Where is Scott? Is he coming? I have noticed that more and more people are married to our children. How many kids do you have? I have about fifty. Did you put up the sick people’s sign on the car? I need to make a list so that everyone knows what they are bringing to Thanksgiving dinner next week. I need to call Sr. Janet and remind her that the kids did not give us any raffle tickets.

And on and on. I used to jump in and help her with correct thinking or at least keep her from making embarrassing phone calls. The range of mismatched topics is endless and for some reason our kids turn up in it a lot as children. I also realized at some point I felt embarrassed. Cheryl did not. I stopped thinking seriously about it.

I actually think of this often. When Cheryl is out with her long term friends, people that she has known for many years but has not seen much over the past few, she puts on her “showtime” mantle and converses. When she returns home she is often exhausted from keeping that going. What if the social occasion did not require any sensate being to understand the conversation? What if there was no sense of or in it? Would she be less exhausted?

There are many things to ponder. Carpe Diem.

Last Night was Peaceful

Last night was the first dose of donepezil which may help with Cheryl’s confusion and dementia issues. It has two main side benefits (effects) in addition to the myriad of others that seem related to any drug regimen. The side effect I am most concerned with is insomnia. I will be watching for this closely over the next few nights as her body adapts to the medication. The drug literature suggests a two week or so adaptation period. I am hopeful today.

The dose in this series of pills is 5 mg. The intent is to discover the patient’s tolerance for it. The dose will be increased over time. If one eats a little bit of peanut butter each day when one is little, one will not develop an allergic reaction to peanuts. If you eat a little bit of dirt each day as a child you will develop a tolerance for a lot of things later in life but your parents will go through a really annoying diaper period.

Nevertheless last night was peaceful. One trip to the waterproof room and no extra laundry in the morning. Seven AM meds consumed on schedule. Breakfast of yogurt and Pillsbury refrigerator rolls rounded out the morning.

Exiting “news” today from the world’s largest advertising company Meta formerly know as Facebook, new tools are available for Instagram whatever that may be. (I am old.) All the major stock market indexes plunged (not fell) into bear market territory. The Fed is wondering out loud about where to set interest rates. Nervous investors are placing their bets. Bitcoin aficionados are moving their money so quickly the major exchange called a halt. (Think of all those computers mining bitcoin settling into stasis.) Ho hum. And it is going to be hot today on the east coast where all the news comes from. Stay hydrated!

Another day begins. Cheryl seems to be moving well. She can try out our new grab bar that was installed yesterday on the wall near the shower to help with getting in and out of the shower. I have no control over the things that CBS has decided is news today, so, although I am mildly interested, I do not spend much time on it. Cheryl is quietly watching the news after eating her Pillsbury refrigerator rolls and yogurt with OJ.

The Wordle today was easy. I got it on the first guess. Today life is good.

Carpe Diem.

Donepezil aka Aricept

A mild mannered drug used to treat confusion in patients with dementia. Often the only chemical of consequence for treatment of Alzheimer’s disease. A little humor there. The previous choice was rivastigmine which Cheryl could not tolerate.

We’ll see. I am fearful of giving her some thing else that is going to make her feel like crap all day long. The slow movement and mental confusion is somewhat easier to help her with than persistent nausea. Rivastigmine did that to her.

We are starting this drug on the thirteenth of the month. That cannot be good.

Carp drug Diem.

How Many Things Change

It occurred to me this morning as I was reaching for the Cheerios that lots of tiny things have changed in our life together. Not all of them are Parkinson changes. All can seem associated with Parkinson. I will stop using the possessive and leave Parkinson by itself.

Starting with Cheerios, Cheryl rarely ate Cheerios until recently. The why of that thought is unknown. It may or may not be a parkinson. Before Cheerios she was a huge fan of Life cereal. So much so that I was buying Life cereal in the four box collection from Boxed Up online. For several months perhaps a year and a half it was Life cereal, some dried cherries on top and orange juice. Then it suddenly switched to Frosted Mini-Wheat cereal but only for a couple weeks. Sticking with the heart healthy ideas I bought some Cheerios for myself on day as I passed through IGA shopping for the other things on my list. They were quickly adopted by Cheryl as a breakfast option. Cheerios is the current choice virtually every morning now.

A Partial List of Changes:

  • cars
  • house
  • travel
  • motivation
  • dementia and support
  • bicycles
  • relationships
  • Morning routine
  • Sleeping routine
  • Sleeping
  • Memory
  • Intimacy
  • Me and tea
  • showering and hygiene
  • keeping track of meds
  • adjusting meds
  • Exercise
  • Daily chore responsibility
  • Plumbing
  • handholds around the house
  • Emotional response to songs
  • Financial maintenance
  • Falling and fainting
  • Writing
  • and on and on…

As these changes occurred in our life together I did not take notice of them, I merely rolled with it at the time. I admit to being initially annoyed and sad to see something change away from what it was. Old people like to keep things as they are. The past tense is disappointing but the Beatles broke up in 1970. People move on.

Parkinson symptoms are treated with powerful mind altering chemicals. It is the doctor’s call as to what will help. It is the care partner’s call to observe and listen and respect and help with those drugs. The doctor is global and strategic. Day to day caring is tactical, down-to-earth and immediate.

Carpe tactical Diem.

Shower Mats?

Cheryl fell in the shower this morning. Slid down the wall is probably a better description. I heard no thumps. It is always our discussion – I’m going to take a shower. Okay, I will listen for thumps. Thanks. And then she goes to the big bathroom to get cleaned up. Today I thought I heard her futzing with her walker but she was occasionally bumping the shower door as she tried to reach the hold bars to pull herself back up.

I ordered a shower mat from Amazon. I told her from now on we put the bench in there with it. A few weeks ago I had the plumber put in the really fine hand held shower head in preparation for this day. Several times I have suggested that she use the bench. Resistance to infirmity is great. No bench she insisted up until now. I will insist but I want her to maintain as much independence as she is able.

The shower floor does not seem slippery to me but I could be wrong.

One foot in front of the other. One step at a time.

Carpe Diem.