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.
It is the day of the Sunflower Rev it UP for Parkinson’s Walk/Run. Cheryl and I thank all who participated, donated and simply is there for Cheryl when she needs help.
It is not too late to donate: https://secure.qgiv.com/event/2sriufpw/ — Cheryl’s team name is SMILE. Because “Mom always told us to smile.” And how can you not smile after saying whoopadidee!
This year was the first year that Cheryl and I did not get up early and head down to the riverfront. Alas as her disease progresses it is not to be on some days. This was one of those. Thanks to all who participated.
SMILE – $2483.00 for UC Health Parkinson’s Research
One of my favorite words is Luddite. It is a pejorative. Luddites are resistant to technology and change. Buddhism and Hinduism share the doctrine of Anicca or Anitya, that is “nothing lasts, everything is in constant state of change”. Imagine a Buddhist Luddite. There is a guy with a serious mental health issue.
Difficulties of life while supporting a person with any sort of chronic disease tempers one’s world view. I have come to decide that change in perspective is necessary for a healthy mind, a calm mind, a sane mind.
I have decided to make three changes in my day that I hope will adjust my personal perspective. In the morning spend an hour writing. It is quiet. Use the time wisely. In the morning spend fifteen minutes doing some exercise. In the evening read for an hour. Stephen King has a new book.
I do some of this currently. Generally I read for an hour or so before I go to bed but after I help Cheryl to bed. It is quiet in the late evening. Cheryl usually needs time to settle down. If I go to bed at the same time as her I tend to lie awake listening to her squirm and rub and pat the bed and generally fidget. Often while reading I find myself listening carefully to hear if she is moving. If this happens I realize that whatever reading material I have is not holding my interest and attention. It is time to sleep.
For awhile in the morning during the early summer I had a series of chair yoga (old out of shape people yoga) exercises that I did in the morning. The whole series took about 15 – 20 minutes. Somewhere in June I lost interest and quit but exercise is boring and doing exercise because someone told you it is good for you is uninspiring. I do not simply believe ideas that others expound. I look for some validity elsewhere first. Perhaps I need to mix it up and find my groove. I am still working on that aspect of it.
Write in the morning during the early hours while Cheryl is still sleeping. Make it a routine and perhaps I can finish my book. My it a routine and perhaps I can inspire myself. I have started three different book ideas. I have to select one and push it.
A fourth thing not mentioned above is go back to working with students in the program I am involved with at a local community college. It is a fact that communication with others without dementia can be a relief from the miscommunication that occurs in our every day life. Four hours is about long enough for me relax and not think about Cheryl. It is a break. I think I need that.
It is later in the year. The sun goes down earlier in the day. Cheryl’s brain wanders off into some odd places when it is winter gloomy outside. Our condominium is one the first floor of a two story building. We are in the back and the windows face east with a view of an overgrown woods. It can be a bleak landscape view in the winter. In the summer it fills in close enough that there is no view of the sunrise. Garages line the front so that there is no view to the front and the typically magnificent sunsets we can view from our hilltop. But it is a one floor plan which is perfect for Cheryl and her bad knees. it is, however, dark in the winter and on a cloudy summer day much like viewing the world through cataracts.
And there you have it, my first morning of writing and thinking.
I did not mention previously that I have greater expectations of myself than anyone else around us. I tend to focus inward and make all things that go badly my fault.
Fault is something that a catholic education will drill into you. Recognizing that humans are weak in many ways is something catholic education ignores.
“… And if you should fail in this, humble yourself, make a new proposition, get up and continue on your way.” (Padre Pio)
I expect Cheryl to do things that she is incapable of and respond with anger when she cannot. My anger is better described as frustration. As I leave her thinking she is headed in the right direction, when I check on her later, I find that she has wandered off in some new direction. Instead of washing her face, she is cleaning the sink.
I expect others or hope that others will see our dilemma and voluntarily help in some way. Those people who do are very few in number. They are a joy to be around.
I do not expect anything from strangers but they open doors or hold the door or jump up to open the door. It is a small thing but useful.
Friends and family are all helpful in their own way. They all have lives. They all have other interests. It is self centered of me to expect them to think about us.
As we travel this road of Parkinson and related dementia changing expectations is necessary. If you do not make adjustments all that can be found is perpetual disappointment.
Perpetual disappointment leads to cynicism. Conversation becomes sarcastic. The sarcasm is wasted on dementia patients. They will only detect the underlying anger.
Cheryl uses her left side successfully only when she concentrates. Perhaps specific marching encouragement will help – left foot, right foot, left foot, and on.
If I change my expectation for her walking, perhaps I can help her improve.
If I change my expectations of family and friends perhaps I can find more happiness and less disappointment.
It is a great movie about work/life balance. Meryl Streep, Anne Hathaway, Emily Blunt, Simon Baker, Stanley Tucci and others portray an exciting and treacherous existence in the environment of high fashion. Along the lines of Pretty Woman, Nigel (Stanley Tucci) helps Andy (Anne Hathaway) to get her act together and become indispensable to Miranda (Meryl Streep) the head of the magazine called Runway. Ultimately Andy realizes the life is not for her after she realizes how duplicitous Miranda is following an episode in which Andy has placed all of her loyalty and assumes a friendship that does not exist between the two women. She pitches her pager into a fountain in Paris and walks away.
That movie appeared on VH1 the other night as Cheryl and I were winding down in the evening. I have watched it several times before. It is very well done. And now it occurs to me that my working career was over in time to allow me to devote myself to caring for Cheryl. I like to watch movies and Cheryl and I have been doing that more in the evening. She seems to enjoy sitting quietly and watching while also looking at a magazine or messing with the Frameo that no longer receives pictures for some mysterious reason.
The storyline of movie has to be slow moving and serious and tell a story. The superfluous and loud comic book movies that seem to be popular do not interest her and they are hard to follow. I find them to be the same.
She is completely wrapped up in 80 For Bradley because she likes the four actresses involved in the story. I am constantly hunting for another like it to capture her interest. (We have watched it many times.) I am much too familiar with “80 For Brady”.
Last evening I found an old Tom Hanks movie “Big” was alive and well on MGM+ on demand. We watched that. A cute little story with a very young Tom Hanks. Cheryl sat and watched it all the way through. She sorted some of the Kleenex in the box next to her and lined the tissues up with the old CET Connect magazine that she was looking through while also half watching the movie. We talked on and off as her mind wove the movie story line into her memories of childhood. In all it was a calm and pleasant evening and she ran out of gas about 10:30 PM.
Perfect! She got to see the weather report so that she could forget it today. Winter is coming and so is Friday the first of September.
Cheryl has two therapy sessions today. One is occupational one is physical. As we pulled into the south portico I realized that it was jammed up with four other vehicles and all are equipped with mobility equipment ramps. I stopped short and helped Cheryl up the curb to her walker that I placed on the walk.
My third thought after damn it is crowded, why are all these people here now and in my way was I guess we do not have it that bad after all. As I helped Cheryl walk past one van the ramp came out of the side door and settled onto the walk next to us. I thought how convenient. A crippled woman was sitting in a battery powered mobility chair. She said, “Hi!” as we walked by. I thought that looks way more difficult to deal with. I wonder what his morning is like as I looked at the guy helping her.
Tomorrow is our 53rd wedding anniversary and the day after that the anniversary of when we met. It is also a blue August moon as it was in 1966. It makes me wonder how often blue moons occur in August. We met on a special day. This year the same celestial event happens. We have had and continue to have a special life. (Follow-up — only once between 1966 and this year. According to the internet of all knowledge.)
So far we do not need a battery powered chair for Cheryl to get around. I do have a transfer chair for when she is not moving well. I bought it as a convenience to me.
The weather weenies all recommend the same thing – it is hot, stay home if you can. It is snowing, stay home if you can. It is raining, stay home if you can. There’s a new strain of Covid called ny.g.78.5-17 circulating, stay home if you can. Canada is on fire, stay home if you can. The Indians have landed a lunar lander on the south pole of the moon, stay home if you can. The head of the Wagner group got his plane shot down, stay home if you can.
The Republican psuedo debate is on television tonight, stay home if you can.
A woman on the other side of the gas pump to me remarked they say the economy isn’t bad, making clear reference to the price on the pump. I thought, stay home if you can. I said, it’s hot though.
There are so many things for us to worry about, I am going to stay home if I can.
My mother always hated Monday. Even after she was long retired from her working career she would refer to Monday as Bloody Monday. I never understood that attitude.
This Monday morning Cheryl is sleeping in the other room. Quiet after she had been up concerned about strange thoughts just before midnight. She was worried about when Jan and Nancy were going to pick her up. Jan has passed away. Her thoughts are often very jumbled up these days.
Yesterday evening she was very anxious about our nephew Mark and his girl friend Jill. This was brought on by us driving past the FedEx terminal near where we live and Cheryl asking about Max working at FedEx. I responded with the fact that Mark, our nephew, worked for FedEx. I asked if she meant him. She said yes, I think so. And this launched her into several hours of on and off conversation about him and his girlfriend Jill (I quit correcting her ideas) and birthdays and presents and on and on.
After awhile it is very hard to deal with random nonsensical conversation.
I convinced her we should practice her voice exercises. We shouted MAY, ME, MY, MOW, MOO for several minutes. And tried to make AH last for ten seconds. Parkies do not breathe deep. In Cheryl’s case she often has very little air behind her vocal chords.
We rounded out the evening by watching 60 Minutes on CBS and then the movie “80 for Brady” (for the 53rd time).
I am starting to wonder where she has gone in her mind. She has exhibited several unusual behaviors over the past couple weeks but I disregarded them to simple tiredness from her current PT schedule. Physically she seems to be moving worse so none of this seems to me to be helping her.
A few days ago she sat in the rocker in our living room and stared out the window at the bushes in the overgrown lot behind us for two and a half hours without moving. She did not speak during any of this time.
She puts together random collections of pieces of paper and photographs. Some of these I have taken out surreptitiously of her circulation and put them on my desk to look inside her mind. I think it may be scrambled but occasionally I find little gems.
These pictures of Dad were attached to one of Cheryl’s lists of stuff: Moeller; Dr. & Mrs. Fred Kraus; Jeane Krause; Mr & Mrs.; Barb Kalb; Find Barb’s Christmas card; when I find the list compare the list to current addresses for all; Lists <-> Krause, Torbeck, Driscoll, Weisgerber, Welch; Make a list – Cheryl Torbeck, Cheryl’s friends… None of this has anything to do with these pictures which were probably collected for my father’s funeral in 2007. I am glad I found them.
Maybe one day I can find her mind for her and give it back to her.
This particular symptom of Parkinson’s disease is really annoying to me. Cheryl is doing speech therapy and when she does the exercises she is easy to understand. Today she is out in public and moving her lips with no sound coming out. Today for some reason it is making me on edge. I tried my old technique of making her mad at me. That did not work today, but maybe it will work tomorrow.
I miss our conversation. These days with her worsening dementia the conversation can be meaningless and totally random or it can be meaningful and loving. Her brain chemistry is a mishmash. She is easily distracted by small things around her. Although menus are a challenge we used to be able to discuss various menu options and whittle them down to one or two. lately that has been an incredibly hard struggle only made worse by her soft voice and my inability to understand more than every third word.
The Parkinson’s Voice Project is a charitable organization that has done a lot of work in this area. They train speech therapists with a program designed specifically for parkies.
The program only works, however if the parkie will do the exercises and practice speaking. If she will not or cannot or is mentally unable to plan time for these exercises their helpfulness is lost. Imagine a person dealing dementia reading the exercises silently to herself. It can make you cry or grit your teeth in frustration. My small experience with teaching presented some of these same frustrations. It has been ingrained by many generations of poor teaching technique that it is bad to make a mistake. Boo boos are embarrassing. Why do we teach kids this? Why do we remember it as adults and still shy away from errors? When some get this despicable disease of Parkinson many will not help themselves because they are embarrassed to make a mistake. It is ingrained in us from early childhood.
It is a task to watch her struggle to walk. She will not ask for assistance or help. One has to brave the storm and help anyway. To me as her principal helper, it is frustrating.
We went to the physical therapist and the occupational therapist today. I suppose I was hoping for some magical solution to Cheryl’s interest and attitude towards exercise. I suppose I was hoping for a story end like the tale of Lazarus. (“Rise up and walk!”)
He suggested to her that she practice by taking big steps and for exercise stomp down on the floor to emphasize a marching motion. He suggested that she practice getting out of and into a chair– nose over toes. Bend forward to stand up. Bend forward and stick your butt out to sit. When you are up – grab your walker. Practice this often and muscle memory will kick in. When we were home she complained of pain in her back. Her core is weak.
He politely suggested that I should coach her to put her feet in the right place and lean forward to stand up. Her has no idea how much friction that coaching causes. (You are always telling me what to do!) I do tell her to lean forward and stand up. I usually put my hand on her back to help her and steady her as she rises. She leans on me pretty hard. She might say stop pushing but if I remove my hand I find that she was leaning hard backward on me and she can easily stumble back and lose her balance. I ignore her complaint mostly and apologize later when I am sure she is stable.
I learned an important nuance today from Justin the physical therapy guy. He had never met Cheryl before so part of the visit was him looking through her records and asking various questions about this and that. He asked about falls. Everyone new asks about falls. I replied that Cheryl falls a couple times a week. She usually falls backwards and it seems to me that it is getting worse. She tends to lean backwards when getting up from a chair. If she passes by a stable solid piece of furniture that she has grabbed for extra support she hold onto that as long as possible even to the point of leaning backwards to maintain contact. Justin told me that is pretty typical for folks with balance issues. (Huh. I was under the misguided illusion that parkies tend to hunch forward. Cheryl never hunches forward.)
I know that there is no magical solution. But I can hope.
Just like I can hope her voice will get stronger with speech therapy.
Just like I can hope for the occupational therapist to be useful to her.
The palliative care clinic is focused on improving her sleep. Part of that is controlling her constipation. If she sleeps well she does better during the day. She can remember who I am for example. She will remember to eat. Perhaps she will quit losing weight.
There is no cure for this debilitating and degenerative disease.
Adjunct_Wizard 