My search for grace and meaning after a former care partnering life with a wife who suffered from Parkinson's disease and dementia giving her a confused and disorienting world.
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.
I found this old letter in among other pictures from my mother. I have a couple plastic tubs of “Mom and misc.” Recently I was looking through these looking for something else.
For awhile I thought about Dad and our relationship. I found in my memory stories that I have about him.
When you think about people who have died, they are alive again. At least for a little while they are here with us.
When the day seems overwhelming keep your voice down. The people near you will detect your disgruntlement by your body language. You need not add your voice to the show.
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.
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.
I have saved a lot of old crap. Like most people I suppose have saved from the earlier part of their lives. Always with the intent of “doing something” with that letter, that picture, that article, that thing.
A few months ago I found a bag of that kind of stuff in my armoire crammed in the back of a bunch of other memorabilia. My diplomas and certificates and other ATTAboys are stuffed into the same place near socks and pajamas. My sister refers to these as little treasures.
In this particular bag left over from Waldenbooks (remember them?) I found a collection of old letters written by Cheryl to me in high school. These are not love letters. She is merely writing to tell me about her day. In the example I show here she has continued her letter on the next day, so, it is two letters.
Six pages of handwritten conversation as though I was there or at least on the telephone with her show several concepts of interest. The first thing to note is that her cursive when she was seventeen is written as though it is on lined paper even though there are no guidelines on the stationary. The second thing I noticed as I re-read her note was how she must have taken to heart practicing her craft in grade school and high school. The letter is dated and located and each page is numbered so the reader is not confused.
Not as much emphasis is placed on American standard cursive as it once was when we were children. Many of the MEME-ers on Meta believe this is appalling. I think it merely shows progress in education.
These days Parkinson has stolen her cursive from her as well as other things. Her ability to think in a straight line is gone. Cursive writing is just another item greatly diminished in our new life. And handwritten notes seem to be a thing of the past as we leap into the SMS message days. I have been chided by others for not responding to text messages rapidly. I notice that my smartphone service does not always provide a little chirp when a message appears and I am okay with that.
That last thought sent off to contemplate the idea that voice phone calls except from Mumbai are mostly none existent.
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.
When I make the bed in the morning, lots thoughts run through my mind. I imagine that everyone does this or at least everyone who makes the bed consistently. I recognize that not everyone dresses the bed in the morning before work or other chores. These days it is often a necessity.
I once remarked to my sister-in-law as we traveled to our pizza Tuesday destination or some other dinner destination and she asked Cheryl, “Is this a good day?” that it is a good day. There is no extra laundry. As this disease moves on occasionally there is extra laundry. That there is none does not equate to a good day so it was just a stupid comment. Uncalled for as I looked back on it this morning while getting the extra laundry in the mixed load started.
Laundry is one of those chores I never did before this disease. It crept into my life four or five years ago. Now I am defensive about my methods and organization of it.
But what started me down this meditative road this morning was not laundry, it was the thought of a good day.
A week or so ago on the family chat text session, Ken remarked that he could get pizza delivered to his slip where he docked his pontoon boat at the lake he lives near. I texted him late in the evening to ask if he was up for pizza Tuesday and early in the morning he said he was. Her face lit up when I told her that Ken was coming for pizza Tuesday.
A few days ago I asked her brothers and sisters to spend more time with Cheryl or simply call on the phone to chat. It is something she really enjoys. It is also something that is difficult for her to do on her own with her current diminished cognitive ability. Tonight her brother is coming to share pizza.
She probably will not remember he is coming until she sees him.
And Ken being Ken was already there when we got to the restaurant from the occupational therapy session this afternoon. Her face lit up again. He slipped into the back of the booth we selected across from Cheryl. They talked about family. Cheryl occasionally struggled to find a word or a name. Ken waited. They talked more about old times that had occurred in this very restaurant when it had a different name.
It was a great visit. Cheryl thanked me for the great evening. I thank Ken for his patience and gracious support and understanding of his sister’s struggles.
Last night or maybe the day before Cheryl asked me whether we would have to get another booster shot. Covid-19 has drifted into the background since the death of E ii R and other news. I replied that no doubt someone was working on a new shot to address the specific variation of the virus in the same manner that a new flu shot is developed every year. We will ask Lauren when we see her in December.
Her commentary and question about the current covid vaccine challenge was mixed in with other comments about the many old Christmas, birthday and other holiday greeting cards that she has rediscovered and placed in a small basket crafted by my dad’s deceased sister Alberta. I still marvel at Aunt Bert’s skill. Cheryl marvels at all the cards that in her mind just appeared in the mail. Most are years old but they just came today.
Sometimes she replies to the messages contained inside each card on the card itself. Later when she reads her own reply, perhaps days later, it is new information.
Dementia is at least memory loss and everything is new and fresh. I have not been given that gift. Everyday is a new day even if it is Groundhog Day.
Adjunct_Wizard 