caregiving

Post Furniture Arrangement

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Oct 9 & 10 2022

I worry more and more about Cheryl’s odd evening behaviors. Quite often afterwards she “wants to go home”. It breaks my heart that she doesn’t know who I am in the evening. It breaks my heart that I cannot find a solution to helping her get out of those behaviors.

I think I have my own anxieties about helping her at home. I did in the Spring when she seemed to be “off on some cloud” about something in the evening. The dementia experts will tell you to confirm and acknowledge the weirdness. That can be really really hard to do. They do not use the word weirdness that is my word for it. I mentioned to my sister-in-law that I am too much of a linear thinker to simply acknowledge and acquiesce this behavior. Maybe I have too much background anxiety about what is next?

The term used for this evening behavior is sundowning(er) syndrome. The Mayo Clinic has this to say. And the National Institute for Health offers these tips to combat it.

It is great that healthcare providers and institutions recognize it as a thing and give it a name. It still gives me anxiety.

Tonight which is pizza Tuesday, it seems to be easing but whether it is or is not will not be known until an hour from now.

Carpe Diem.

It is an hour or so later and it is looking good.

4:20 AM update – 🙂 – there was a problem with the computer that drove her awake. (There was not.) It took a bit of convincing and me doing a pseudo-visit to the computer, she settled back down to sleep.

Hallucinations, Delusional behavior, The presence of others = Caregiver frustrations

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Today I spent an hour or so on the phone talking to my sister, Joyce. She called about 11 o’clock as I was finishing a loaf of bread dough. We talked for a long time as we usually do when she calls me or I call her. We talked about various things and caught up with each other’s activities.

Cheryl could overhear our conversation as I had put the phone on “trucker” (speakerphone) as I finished up my dough activity but eventually I turned off the speakerphone feature because it does not work well with her outside walking and me inside talking loudly.

Eventually we finished our conversation. Cheryl moved by me into her office to do her card thing. I could tell by her body language she was angry about something. I checked in on her. She was sitting in her office so I asked if she wanted the light on. She replied no. I remarked that she seemed angry. She said she was because her cards were all a mess.

Her delusional mind did not have a memory of her sitting at her desk last evening sorting and moving her cards around.

I did not have an answer suitable for her to be okay with so I kept my mouth shut.

Sometimes in the moment seizing nothing is a good idea to maintain namaste.

Carpe Diem.

Surrounded by Wonderful Loving People

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“Feeling blessed” – is a phrase I associate little with this disease of Parkinson but I am learning to understand the meaning of that phrase with respect to helping others and help from others. Cheryl used to tell her mother that there is grace in accepting help from others. (:-0) Once in a while I say this to Cheryl when she resists my aid.

It is easy to get caught up in “why me?” It is easy to not take note of all the kind and loving ways that people around you are willing to help in some small way. Most do not even hesitate. Wear your gray hair to the door of a restaurant and the guy coming the other way will hold it for you. Carry a walking aid or a cane to the same door and kids will jump up and open the door.

In our life with Parkinson we experience these small helps a lot. Cheryl wants to do for and help others even when they are helping her. There is goodness in everyone. Even when one is certain that the other person has not applied themselves and therefore did not achieve the expected benefit help is given without expectation of gratitude.

From the point of view of “little helps” everywhere often spontaneously offered to us, we are blessed.

Our friend Jane is a great help to me. She has organized a network of care around Cheryl and me. She has contacted many of the group of women that she and Cheryl used to play bridge with. Cheryl is unable to play bridge any longer. The game is simply too mentally taxing for her. We used to play Scrabble in the evening and I did not want to play because Cheryl would always, often anyway, kill me score-wise. With Scrabble and Bridge and other competitive thinking sorts of games, she excelled. Her math and logical brain rose to the challenge.

Jane and the rest have organized themselves into Wednesday visiting parties. Jane comes across the hall on Monday so that I can ride my bike or do whatever. Barb comes on the last Thursday of the month to take Cheryl to lunch. Cindy has been coming over on Thursday in the afternoon so I can go do whatever. I usually ride my bike in the warmer months. Linda has been coming on Wednesday but her sister is very ill and she needs to be with her. (She may not be with us much longer.) Jane is a blessing to us. As is Linda and Cindy and everyone of Cheryl’s friends.

Family …

My son and daughter-in-law have been a focus of my need to get Cheryl out away from our little condo on the weekend. David and Melissa are almost always available for a weekend visit. They live nearby in eastern Indiana. The drive to their place is such that I takes us through the fringe of the city into enough rural properties that here and there are planted corn and soybeans. It seems like a long trip to Cheryl. When we get home her reaction is much like coming home from a long trip.

A few evenings ago I invited a couple of Cheryl’s cousins for dinner. It was a great time. Steve and his wife Marisa sent an email just checking in on us a few weeks ago so I invited them for dinner. Cheryl insisted that I invite Lois who is another cousin from a different direction. 🙂 Lois, Steve and Risa did not know each other except through inference by family name(s). Lois and Steve are cousins to Cheryl but not to each other. Nevertheless the dinner was great. They found common reference by neighborhood. They physically do not live far apart.

Cheryl talks about Lois a lot and her mom Aunt Jean (great aunt). In her childhood she got a lot of hand me down clothes from that direction. Lois is a couple of years older. I may have mixed up the story a little. I am merely trying to track down some of these childhood stories before the people in them are gone. Marian and Tom, Steve’s mom and dad, are gone from this world. Their family is younger. I remember Steve as a boy coming to some of the long ago family gatherings at Sharon Woods Park. Lois is the last, I think, of her family. Her sister Maureen we used to see occasionally at Macy’s in Kenwood doing her supervisor shtick. She is gone.

As we move on and Cheryl resides mentally in her childhood, I have taken it upon myself to reconnect with these people. Many of whom I do not know personally except by my wife’s stories. And her memory is failing her in bits and pieces and fits and starts. I think it is becoming more urgent for me to do this and I do not know why I feel the need to do this other than it brings her great pleasure to talk and reminisce with her cousins. Her most pleasurable stories seem to revolve around the many large family gatherings and smaller group visits.

On my never ending journey to help Cheryl experience the best of her days even though Parkinson is trying to steal the memory of them from her.

Carpe Diem.

One More Thing

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There is always one more thing to do, one more chore to accomplish, just one more job. The unpaid but highly rewarding job of care partner is filled with unrelenting detail and a never ending series of little jobs. The list is long. New things are added often.

Take some time to reflect. Cheryl’s creeping dementia does not allow her learn new things or compensating techniques easily. And she may not learn them at all. She might learn the reverse. Always be encouraging even as you as care partner become discouraged.

Carpe Diem

Enjoy the rest of it.

Whatever it may be.

Help where you can. Sometimes she will refuse the help. Help anyway.

Double Carpe Diem.

It was a Good Breakfast, Dear.

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It is important to try making it into a nice day. A few weeks ago another Cheryl wrote on her blog – just let it go – or words to that effect. As we move further down this road of Parkinson I find ways to simply make life more enjoyable.

Cheryl likes egg bread. It is a memory from her childhood. My mother always called it french toast. I do not know what the French call it which sent me on a quest for knowledge from the internet of all knowledge. They call it pain perdu and that translates into lost bread. French toast (pain perdu) is always better if it is made with stale bread. It is better in my opinion if it is made from stale sourdough bread.

This morning I coaxed her awake with the thought of french toast with blue berries and a little whipped cream. This is a picture of mine. She was already eating hers when I decided to take this picture. She had slept late today but it is a good day.

French toast (aka eggbread)

“It was a good breakfast, dear”, she said to me as I was loading my plate into the dishwasher. We have no real plans for today. Perhaps I will take her for ice cream later in the afternoon. Perhaps not. We will just go with the flow today.

Carpe Diem

Reminders

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Today I have taken notice of the necessity to remind Cheryl what she is doing and where she is going. On this particular morning I have reminded her that she was going to change clothes for exercise class three times so far. Once she is away from other distractions I relax a bit and wait for the next reminder time.

Today’s list of events

Starting sometime in May after I was into my care partnering seminar I started to post the days events on this handy piece of white plastic left over from some project. I read an article that gave some tips for helping those who are struggling with dementia. It spoke of using a small erasable white board to post events somewhere. There is one on the wall of every hospital room I have been in for twenty or more years.

I had this and it works for me. I even had dry erase and wet erase markers leftover from my teaching days. They were not dried up yet, so, I was set for awhile. Since May I have had to order more markers. This one is near the end of its useful life.

The family calendar became less and less meaningful overtime. Cheryl is no longer able to discern what week or day is applicable to today. I started transferring the days events onto this board the night before I went to bed. She reads it the next day and looks through the newspaper. Even though the date is printed at the top of the newspaper she cannot relate it to the date for today.

Dementia, confusion and memory loss is annoying to be sure but the silver lining is every day is new and fresh.

Carpe Diem.

A Never Ending Search

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Breakfast

In my never ending search for a good day for Cheryl, this morning I went to a little donut shop near us and bought a dozen from Maggie. I had not purchased donuts from Maggie for some time.

Linda was coming over today to sit with Cheryl. I was intending to ride my bike around Lunken and the Ohio river trail. I asked Linda what kind of donuts she liked last night. The chocolate iced ones are hers. I sent this picture to her in a text this morning. She appeared early.

The donuts were only hours old. Ron makes them overnight.

Donuts used to be $11 a dozen with coffee. Today they were $14 a dozen without coffee. That is twenty-seven per cent more for you math weenies out there. It might be more considering the coffee. Inflationary pressure has finally come to donuts. Gasoline prices are down. Donuts are up. Darn.

I went to ride my bike. When I had returned Natalie was almost finished cleaning our little condo.

I made chicken Parmesan for dinner. We went to a little ice cream shop for dessert.

It was another good day.

Carpe Diem.

Organizational Techniques

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This is such a good story I am unsure where to start. Had I been more alert to how Cheryl treated this book I could have foreseen the difficulties that eventually came to her and became much of my daily life. But seeing how she treats it now is unimportant and I flatter myself into believing I could helped her if I had been paying careful attention at the beginning.

About three years ago – certainly prepandemic – Cheryl was struggling with her birthday card organizational techniques. She had several old books of names. One of these was left to her when her mother had passed from this life to the next. When a new month was approaching she would collect these to her in her office in the evening to make a list of folks whose birthday was coming to buy cards.

When her mom was still alive she would take Elaine to the Dollar Store to buy cards to send out. She took this over in time for her mother and eventually kept it up after Elaine passed away. She did this, of course, in addition to her own birthday card list. So, one evening I noticed she had several old handwritten books that she was looking through to discover whose birthdays were coming next month.

She had entered much of this same information into an Access database that she had created during her working career to help her and her mom keep track of things in an organized and businesslike manner. Cheryl was an extremely organized business woman. The most disheartening thing for me to watch as this disease progresses is her loss of organization and control. If the disease was merely physical it would, I think, be easier to deal with.

Nevertheless I put on my engineering hat to help with different methods to enhance and at the same time add ease to the organization of the birthday cards. In a second career as a high school science teacher which never completely panned out, I discovered a wonderful organizational tool that teachers use and might very well be adaptable to Cheryl’s needs. Teachers use a weekly planner to help with organizational tasks and as I discovered with my small experience, to keep track of how far behind you are with the course material. Usually these are dated with the year but at Staples I found a wonderful version that in addition to having only two days per page was lined and printed in a 8.5 by 11 format had no year printed. It could be a yearly calendar of birthdays, anniversaries and other information without concern for the year or day of the week.

The doomsday algorithm would give you the day of the week. Look it up. It is pretty neat.

She had been struggling with organizing the birthday cards. I suggested she use this yearly planner. In the store, she agreed that it could be a useful tool to organize the activity. I was proud of myself for finding such an elegant solution to her dilemma. Being the ever helpful hubby I produced from her Access data a list that I could put into Avery’s online printing tool and produce the information for the dates that were known. New information would come along with use and could be added by hand as the years evolved.

Almost a good idea but my idea therefore NIMBY and NIH reared their ugly heads in unison. And I, not to be defeated, began to defend my method to a woman who spent her working career in computer databases and systems analysis, as she, slowly crept into memory loss, confusion and dementia. What a hoot! I completely and totally missed the AHA when it went by about two years ago.

How to help without helping? I continued for many months to reconsider and think about how to make the Big Black Book useful to her. In her old multi-book system she looked at a single page to discover who had a birthday that month. An index my engineering mind shouted at me. You forgot to make an index. I thought about that for awhile and realized that the planner was organized by month, not day-of-the-week, not year, only day of the month mattered. It was self indexing. I was at a loss as to how to fix her thoughts.

I quit concerning myself with instructing her on how to use it. I just rolled with her confusion.

Over time the preoccupation with getting out the birthday cards dissipated. Other thoughts of how to help her organize it left me. I became an observer. She always tells me, if I don’t do it myself I can’t improve. She is right. I am merely her aide.

Carpe Diem.

bump-n-run

It Seems Counter-intuitive

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Cheryl has some dementia which is a nuisance with her decision making process. Any attempt at speeding her up doesn’t seem to work well. She merely gets angry and frustrated with her husband. And it is hard for her husband to not speed her up. That must be fifty-two years of helping getting in the way of care partnership. (Smiley Face)

This morning I tried to move her along without being pushy. Yes, I can be and have been pushy.

She wakened several times overnight to go to the toilet. I got up to help her once. So, when the seven am medication alarm went off, she ignored it. I got up to remove that annoyance from my ears and get her first dose of stuff for the day. When I returned her snoring indicated disinterest in arising for the day.

I laid back down to see if she would stir again. When I awakened it was eight am. I must have been tired also.

Eventually I left the bedroom to make coffee, get the papers and turn on the news to discover which part of California is on fire. An hour or so later I kissed her awake and she asked me when church started. I told her that she had exercise class at noon. I left to drink more coffee and to listen to the interesting fact that no toilets could be flushed in Mississippi. I returned for another gentle nudge and she got up.

I suggested scrambled eggs and toast for breakfast and she readily agreed. I continued with gentle nudges and quit concerning myself with whether she would be late for her class. She was not late.

The exercise classes she takes at Parkinson Community Fitness are a benefit to her so I make every attempt to get there on time but today I tried a not pushy technique. I call today’s strategy “bump and run.” I would engage her and nudge her thoughts and then leave. I came back a few minutes later for another bump and run. It worked and neither of us was upset when we left.

Today’s class was led by Paige and Jenna. Jenna’s notes are here. The rowing person is excited to do the exercise.

Carpe Diem.