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.
Today it occurred to me as I cleaned the Kleenex lint from the washer and dryer for the nth time, it was doing no good for me to lodge a complaint with Cheryl about putting tissues in her pocket. It also occurred to me that although I beat myself up about missing the tissues in her pocket, I will probably often miss one once in awhile.
Dementia is not a specific disease but is rather a general term for the impaired ability to remember, think, or make decisions that interferes with doing everyday activities. Alzheimer’s disease is the most common type of dementia. Though dementia mostly affects older adults, it is not a part of normal aging. (from the CDC)
Drat and alas. Drat, she cannot remember to do it. She cannot remember my complaint either but will detect the disappointment in my voice and probably interpret it as anger. And alas, I will occasionally forget to look in all the pockets.
I will forgo the complaint process. It is not useful anyway. I merely causes us to pick at each other. (Forgo was the answer to the Wordle a couple days ago.)
There is absolutely nothing that goes fast in our life anymore. Do I miss it? My immediate reaction is NOT.
Max throwing his fast ball
I like how the young people emphasize comments by using ALL CAPS. That enables their fast comments about most anything that strikes them.
FAST however is gone from our life with Parkinson. Planning and thoughtfulness and SLOW are the current buzz words in our life.
I have noticed as I get older (I am Old) and drive my wife with PD to various exercise or other social activities that many drivers – not necessarily young drivers – move through traffic fast. What is their hurry?
Even when I am feeling as though I am late for something, I ponder what will be the result if I am later than I expected to the destination – mass, restaurant, exercise, whatever. The end result is similar to removing one’s arm from a bucket of water.
Wouldn’t it be great if there is a manual for living? Wouldn’t it be great if there is a book that tells one how to do everything. Wouldn’t it be great if there is book that tells one what to do different when something goes wrong? It would be like an appliance troubleshooting page in the operator manual.
But life is not like that. It would be great if it was but it is not. I am ecstatic when I find one of these charts because any problem I have is rarely on the chart.
In my working career I occasionally helped to create charts like these for industrial machinery but there is no such manual or chart for life. There are however lots of pious platitudes. Social media platforms are full of them.
This last one with the turtle has become my mantra of a sort. Forward is forward. Progress is progress. With chronic degenerative disease one can maintain hope for a cure, that being said, it can be more useful to accept the situation and play the hand that was dealt to you. (My very own platitude.) Forward is forward.
The title of this blog post is the name of the poem posted in a discussion group. Zella wrote earlier this week… “I thought my husbands poem might be suitable for Parkinson’s Awareness Day!” To which LAJ responded… “I thought it was going to be about a caregiver who thought their husband didn’t like them anymore, […]
As Sue thought, I thought this was going to be about the care giver. It is not. It broke my heart. I have watched Cheryl struggle with opening many things. And I heard Parkyboy talking in the background.
When engineers look for a solution to some dilemma, they often spend a lot of time observing the problem.
Many thoughts can arise. Many questions seek answering. But ultimately the dilemma is slowly broken down to component problems and individual solutions to small problems are sought out. An engineering education teaches this process. An engineering education does not teach solutions for Parkinson’s disease and related issues. Those are discovered along the way.
“There’s someone hanging upside down in the trees in back”, she told me. There is a scrub tree growing in the weedy lot behind our condo. It has a crotch near the ground and branches into to smaller trunks as it grows toward the light. The bark is a light color almost khaki in color. To Cheryl it looks like a kid standing on their head. Perception is off a bit and her creative brain describes a different interpretation.
In that moment she pushed me into interpreting things and objects differently. Are painters able to do this spontaneously? Are story tellers able to imagine a different reality? Are engineers stuck with what they see and touch with little imaginative creation? It intrigues me, the imagination and story telling part. I have often thought that if I could get into her head I could help but maybe I would merely be steering her toward my reality and away from hers.
There are many changes that I notice in her behavior. She can easily ramp up an anxiety about indigestion. It is not apparent to me what specific foods cause distress. Milk products and foods high in milk and sugar seem to give her a hard time. Tomato sauces and beef with a high fat content also distress her stomach. The engineer says figure that out and do not eat those. (Easy Peasey) The average time to relief is an hour to an hour and a half.
I have not discovered any silver lining in these stomach episodes. It is challenging to distract her from focusing on how her stomach feels although occasionally I can get her to sip lemon ginger tea which settles my stomach and does not add caffeine. After a severe episode she is typically awake much of the night. This happened last night.
After it became obvious to me that there was no way for her to calm down and sleep some more, we got up. I got her a bowl of cereal and some orange juice. She sat and worked the puzzles for a bit. I sat with her and worked on the crossword. I ate a banana and drank some lemon ginger tea. I asked her if she wanted to watch TV for a bit to see if she would get tired. She agreed and I played a couple of episodes of Steven Colbert. I can no longer sit up and watch his show so I record it for later. We watched a couple shows. Fortunately he was funny and Cheryl laughed here and there.
Today she is not in tip top shape of course and she fell over backwards in the kitchen. She is understandably fuzzy headed even though she slept until about 9 am. Maybe one day she will keep her hands empty when getting up from or down into a chair. But my wishes and encouragement which she interprets as anger go mostly unheeded.
On the drive to exercise class she asked if I slept well. I asked her if she remembers being up for a large part of the very early morning hours. She said no. The fact that she does not have a memory of being awake is not uncommon. I asked her if she specifically remembered watching Steven Colbert’s late show. She remembers that slightly. She apologized. She apologized for something that she has no control over and that frustrates me to no end.
There is no reason for her to apologize. It is not her causing undue commotion. Parkinson did it.
Watch out for kids hanging in the trees. Carpe Diem.
This morning after a remarkably good sleep, Cheryl got up and took a shower. She spent a lot of time getting cleaned up. She finally came into the kitchen looking for breakfast about 10am just as her alarm went off signalling the next dose. I asked her if she wanted cereal or something else to eat. She asked, Are there any donuts? (I have to start making some and experimenting with freezing them so they are readily available for breakfast.)
UDF donuts
I got donuts from the UDF store about a mile away. She likes their “kettle danish.” Two have been enough in times past so I purchased two. She is generous with food and offered the second on to me but I did not accept it.
I signed her up her April PCF classes and noticed the hands class teacher is back from Florida. She wants to go to “hands” class. This class has been on line while the instructor has been in Florida for several weeks. That style class really does not work for Cheryl.
Where does “April Fool” come from? I like this explanation I stole from India.com. It is not hard for me, a catholic, to believe some past pope guy started this nonsense.
It is believed that Pope Gregory XIII was the one to be blamed. He ruled the new calendar to start from January 1, instead of the previous celebration of the new year at the end of March or April 1. Though, the change in the annual calendar was brought into practice by France. But across Europe, the people continued to follow the Julian calendar. And those who failed to register the use of a new date and ended up celebrating New Year in April have been marked as ‘Fools’. Hence, a particular day for fools came into being.
Punding certainly can be challenging to recover from during lucid episodes.
In our latest distressful activity, she has lost part of the equipment she uses for a pedicure. I have no doubt that she had it in her hand when she decided to do something after its last use. And it became “organized” somewhere. I may be wrong but we will see. She says that people move her stuff around and sometimes hide it.
Gone now to that special place so that it would not become lost.
Perhaps a trip to the local Walgreens will help. Maybe I will buy two kits.
She asks me if we are staying here tonight. It is a repetitive theme in her thinking and confusion. Not knowing any better I try to answer her honestly and without any teasing (which she does not understand anyway). Looking at my old notebooks and blog posts it seems that this particular confusion and some others, who I am, for example, have a cyclic appearance.
That was last night. This morning she wants to pack a suitcase for college. The idea that she needs to get ready to go off to college is totally new. The college she wants to go to happens to be the one I am a graduate of and our grandson has been accepted into for the Fall semester. These facts are probably all tumbled up in her head and sort of explain her confusion.
Another interesting nuance is conversing with me as though I am an acquaintance, someone she has not spoken with for some time. We are catching up. We spent most the of the day talking in the third person as though acquaintances. It was a warm late winter early spring sunny day so we took a walk in the park. We talked about many things. We talked about the weather of course. We talked about how far you used to be able to see across the little creek we were walking next to. On the other side of the creek is a concrete and asphalt reclamation business with mountains of paving to crush and recycle. It once was a smaller pile of refuse.
We talked about children. She told me about hers and asked me about mine. She was amazed and intrigued by the fact that our children had the same names. It seemed that the only difference was that her children were in their teens and twenties and my children were middle aged. (smiley face here) It was unimportant to her that these teenagers had children which were her grand children. These conversations were hard to follow but I was able to ask questions and find out more like any good friend would. Most of the time I was able to keep the tears out of my eyes as we created a memory of a good day for her.
She suddenly switched topics and talked about what to do about Thanksgiving dinner. I gently pointed out that it was barely March and Thanksgiving day plans were several months away. Undaunted she replied that it would be here quicker than you think. There is a lot of truth to that last comment. I have noticed as I get older the year goes by quicker.
I promised to get right onto organization of who does what. I fired off a text message to our family text-party line and got positive responses from everyone. Our daughter volunteered to host.
She writes uplifting and spiritual thoughts in a weekly email newsletter she calls “Sunday Paper”. Today she writes about changes in life. She struck a chord in me but probably not in the way that she intended.
This Parkinson thing is a dramatic change in our life. Maria uses as her focus a friend that is moving far away and talks of pivoting toward the future. What struck me is Cheryl is moving away inside. Not purposely of course but this morning the conversation centered on location and space. She believes inside her head that we are far away from home. She asked are we going home today?
Home is a concept different to everyone. I told Cheryl as I always do when she asks this, we are home. We live here. Sometimes I go into more detail and tell her when we moved. She has a puzzled look on her face when I tell her those things. Sometimes I regret moving out of our big old house in Pleasant Ridge when we have these conversations but I have no basis for regret. She is confused now and most likely would be if we were still living in the big old house.
To me home is not so much a place as a situation. If one “googles” home the famous web search returns thousands of pictures of various houses in various places but a building is not home. Those houses may or may not be home to others.
Cheryl is where I am home. Our life was unimaginable to me when we got married 51 years ago.
On this snowy slowly warming February Sunday I am reminiscing about life and home and the twisty turny path we all follow though life. And that is my concept of home.
She sometimes thinks that we are not home. I am as long as I am with her somewhere.
A boy, a fox, a mole and a horse – great book for meditation
These days Cheryl is certain that we are not home and wonders when we are going home.
In the background she knows she is home.
But maybe not. Cheryl has lost most concept of time. Calendar time, Day of the week, hour of the day, time until the next event, how much lead time to get dressed or ready; all of these time conceptions are gone. She becomes angry with me reminding her how much time she has left. Maybe I am doing it wrong. She talked (and talks) in implication and inference but my conversation is direct. When she says she is going to do something I assume that she going to do it and I will reminder of her conversation, even help steer her toward her goal that seems to anger her sometimes. It is not my intent to anger her but merely to remind her what road she started out with and keep her on it to completion.
Little girls seem to come and go. The woman who takes care of the little girls seems to come and go with them. Others seem to move her stuff around. And then daylight returns.
Adjunct_Wizard 