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.
The previous post was self serving but I would like to have my old life back. I would like to have my young body back too. That is not going to happen anymore so wishful and wistful thoughts are not going to be helpful to looking ahead. Let me face forward and move on.
As hard as it is I want to try a new tactic. Much of my anxiety about Cheryl is fear for her failure and subsequent embarrassment. I project that on her. She is not concerned. She is talking about apple pie again. Today we bought more apples and she chopped them up to make an apple pie for Easter dinner.
Last night or perhaps the night before her confused head decided that she should call her sister Deb and chat her up about making an apple pie for the Easter gathering. As time moves on she seems more and more confused about what and when and who. I have explained that we are going to our daughter’s house for Easter dinner. Somehow that gets converted into Nancy and Jan and Deb.
Nevertheless I asked my daughter-in-law Mavis to come and help Cheryl finish the pie. She readily agreed.
The one who I could tease a little. The person who when I would toss a teasing barb at her would toss it right back and then some. Fifty plus years of marriage let you do that to each other. We had some great times. We had a lot of fun times. We always wish that the kids will have as great a time and Cheryl and I had along the way. We were never rich financially but there was always enough to make it work out. We were and are rich spiritually, socially, romantically and personally. I suppose that is what makes her mental state so disturbing and frustrating to me in this part of our life.
I can go back and forth, staying present and grieving what is lost to us. As I think of these things and reminisce I think of the song, “As Time Goes By.” There is a British TV show of the same name with Judi Dench and Geoffrey Palmer. It was one of our favorites. We rarely sit for long enough to watch any TV show. Any plot line makes little sense to her so she loses interest and gets up to go organize her office. It is her form of something called punding which is a useless and senseless activity that many in her situation do.
Cheryl was the one who was super organized. She kept the check book. She paid the bills. She was hawkish about getting and keeping and filing receipts for groceries and gas and any other expenses. She preferred to pay cash for stuff. If you did not have the cash in your hand, you did not buy it. When the kids were small we went to the grocery once a month and filled the larder. When it was gone you had to wait for it to come around again. There were some exceptions of course for milk and eggs and bread but generally you had to wait. The kids learned to be frugal. They were allowed to pick their own special things for school lunch and they learned how to make it last. Even when the children moved out to have their own lives we still shopped mostly once a month.
Cheryl knew how to use a screwdriver and still does but somethings that were second nature to her are now befuddling. How to open and what to do with an email. She once put all the family information into an Access database to print addresses for birthday cards, Christmas cards and anniversary cards. She knew how to drive that simple data system. She was used to putting together other databases and accounting systems for the clients she and others had in their small computer services company. It is hard now for her to wake up Microsoft Word to write a letter these days.
She was the one who did most of the household chores. I do that now and I do not mind doing it but she would if she could stand up long enough to do the laundry, make the bed, cook dinner, bake a cake or pie or simply vacuum the carpet.
Both her motor control and mental agility are greatly diminished and she is aware of those diminished abilities and it frustrates her.
She is the one who loved to hike. My favorite memory of this is a ten mile hike we once took in March many years ago. We hiked around a lake in a Kentucky State park. It was an eight mile loop and a two mile hike to the trailhead and back. We surprised some badge earning boy scouts about five miles from no where as we sat for a bit to enjoy the view and soak up the unusually warm March sunshine that day. It is a wonderful memory. We slept well that night.
She wants her old self back too. Who wouldn’t? Her sister passed way in the pandemic. Her sister also had Parkinson’s disease. Jan had other things going on that kept her from surviving the Covid wave in 2020. She still sees and talks to Jan. Tonight she sent her a text message. Tonight she does not understand that Jan will not answer but I might be the one who is wrong about that. Jan might answer. She often does – answer Cheryl when Cheryl talks to her.
Cheryl saw Jan at the table when we sat down for dinner tonight. I have no doubt that Jan was real to her. We discussed it. She decided to send her sister a message.
It is a powerful thing to see how strongly she was certain Jan would answer. It was moving to me. She went into her office to partake in a zoom meeting with some friends. She gave me her phone to hold in case Jan would call back or return her text above. These things sometimes break my heart. I try to keep them inside.
There is still time for new memories. I am sure of that. None of us knows when we are leaving this Earth. The best thing we can do is look for the good things, look for the humor in today’s situation. It is, however, difficult on some days.
An update after I published this about an hour ago. She came back from her Zoom meeting and remarked that she had not been out this late for a while. She wondered aloud how she would get home. I smiled and said that is the magic of Zoom, you are home. I gave her a tour of the condo.
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.
Sometimes while caring for someone with a degenerative disease, we have occasion to doubt ourselves. To think we are the wrong person for the job. To think God must have made a mistake – surely someone else could do better. After all, we are so imperfect. Our loved one is not getting better. (We knew […]
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.
Last night was one of those sleepless nights for Cheryl. I think I am learning when she will have a sleepless night or sleep fitfully overnight or sleep for a bit and then be awake for a couple hours. And the next day she has no memory being awake or thinks she slept soundly.
She went to bed a little early at nine but she had complained of being tired at eight while we were playing Uno. I got her bedtime meds and we played another round of cards. (I am losing this marathon game.) She insisted she was tired, so, I helped her find pajamas and opened the bed. I kissed her goodnight and read my book for a bit. Nine o’clock is too early for me to go to bed.
I went to bed at about eleven and slept for about an hour. At twenty minutes or so after midnight, she was up. I thought initially for a trip to the bathroom but she was up with conversational gibberish about work and school and children. I left her to put on clothes and I put on a sweat suit to go read some more and wait to see if she needed my help. (Her motion is good and she seems steady with no hint of Parkinson in the middle of the night.)
When she came out of the bedroom dressed for work, I got her some cereal and orange juice. She also ate a piece of coffee cake. She wanted to look for the morning paper and pointed out to her that the paper would not appear for several hours. She seemed to accept that and sat back down to re-read the Sunday paper. After breakfast we played a couple more rounds of Uno. In conversation before and during our card playing I was able to convince her that we had no appointments today. After a while she decided that she was very tired again and we went back to bed at about 2:30 am.
In previous episodes like this I admit to being Mr. Cranky-pants. Rosie showed me a different way to respond to her at night. We both fell asleep quickly and the LOUD AND ANNOYING alarm clock woke me at seven for her morning meds.
I would like to report that she is okay today and I am rested but I am not. I am a little tired but coffee helps. She is still a little confused but not any more so than normal lately.
She has a rash that appeared a couple days ago. This afternoon I made an appointment with our primary care physician to look at it. Hopefully it is nothing other than hives. I wish I knew what new thing is irritating her skin. She does not complain about it. (Update: Shingles. She has shingles. In some people it does not hurt. Damn. Another reason to not get old.)
In writing this little piece I googled “a different way” in the hunt of an image to use as a header picture. This hip-hop song popped up DJ Snake. I am not a consistent listener of hip-hop music but much of it is very good and has a happy beat. This video is very creative.
A Different Way – DJ Snake, Lauv
Could you believe I could be different? I’ll be the difference, I’ll lift you high And I understand your hesitation Our reputation, it’s no surprise So let me redefine you And you can see the tide move Just like tears in the eyes do And when you’re feeling alone Oh, baby, I’ll be right here Between the sea and silence So breathe easy my dear You can find sunshine in the rain
I will come running when you call my name
Even a broken heart can beat again
Forget about the one who caused you pain
I swear I’ll love you in a different way
I know that love is so unforgiving
You’ve been a victim too many times
And I’ll be the thread, hold you together
I’ll be forever, will you be mine?
So let me redefine you
And you can see the tide move
Just like tears in the eyes do
And when you’re feeling alone
Oh, baby, I’ll be right here
Between the sea and silence
So breathe easy my dear
You can find sunshine in the rain
I will come running when you call my name
Even a broken heart can beat again
Forget about the one who caused you pain
I swear I’ll love you in a different way
Hey, hey, hey
I swear I’ll love you in a different way
Hey, hey, hey
I swear I’ll love you in a different way
Source: LyricFind
Songwriters: Edward Christopher Sheeran / Ilsey A Juber / Jonny Mcdaid / Lindy Robbins / Steve Mac / William Grigahcine
Cheryl went to high school with Rosie. Rosie went on to become a Sister of St. Francis. Cheryl went to the prom with me and four years later we married.
Yesterday after many scheduling issues we hooked up for lunch. Cheryl was moving very slow that afternoon. Rosie moved very slow with her and very gently held her arm into the restaurant and over to the table. In conversation, Rosie, the quiet calm and gentle person that she is with her own health issues, gently took Cheryl down a memory lane of remembrances from their high school years to their current time.
I slowed a bit and observed. Slow and gentle were Rosie’s movements, her companionship, her conversation. I learned something.
When we got home Cheryl rested for a bit.
I realized that Cheryl needs to go at her own pace. I always knew that she did but I did not always observe that pace or make myself slow to her pace. Cheryl’s pace is principally Parkinson slow with occasion spurts of Parkinson fidget and sprinkled with Parkinson frantic and a little normal motion and conversation.
She did not seem really very tired or ready to go to bed at what I think of as her normal ordinary bed time of 9:30 – 10 PM. I tried to exercise what I had observed earlier in the day and suggested we play a card game or work a puzzle for a while. She said let’s play Uno. We played with half the deck. She shuffled the cards and asked, Does everyone get seven? I said yes and she did not deal any extra players. Uno for those who do not know has a simple theme. Follow the color or follow the number. She could do that for about an hour or so. She began to notice on her own when she could not tell the difference between red and green. She declared herself tired about 11:30 PM and we got ready for bed. She slept soundly for several hours — all at her own pace.
Rosie taught me something. Let Cheryl set the pace. And if she is not around, think about letting God set the pace. Life is peaceful at Godspeed. Life at warp-speed requires quick reactions and having your shields up at all times.
In our support group meeting we start with a topic or group of topics that are put together by a committee that meets the Saturday before out scheduled time. A partial list of these is below.
Our meetings are never very formal. Some of us, the core group, will kick off the discussion by talking about the topic(s) on our list. I count on John who is one of the core group and a retired teacher to keep us on track but it is okay if the conversation wanders off into the weeds because sometime people need to just talk without worry and fear to a group that understands and empathizes.
How do I (care partner) know when to help and when to let him or her do things alone?
What thoughts or actions help you cope? Why do those work for you?
What are a care partner’s typical feelings during the day?
How to manage stress; as a caregiver, as a PD patient
Tom and his wife Joyce attended the first meeting that Cheryl set up a few years ago. Tom was in the early diagnosis stage of Parkinson. They came to no other support group meetings but remained on the email list. The initial meds dose surely worked to initially relieve most if not all of his symptoms. It did for Cheryl too about fifteen years ago. But lately his unsteadiness became worse and he had had a fall with more than incidental injury. Mostly though physical therapy Tom and Joyce came to the previous meeting and came to the meeting on Monday evening.
Tom spoke to the second list topic about coping. He remarked that his doctor said in conversation that instead of focusing on what you have lost, focus on what you have gained. Tom said he was still working on that but I thought the idea is an excellent way to grow and change and stand up to the challenge of Parkinson and his damnable disease.
So often we focus only on losses. It is the basis of all grief and sadness. It promotes anxiety and worry. It takes a lot of time. It is a stresser. It is the source of most news stories on television. We are attracted by tragedy and loss.
As a thought experiment I felt the need to look inside my own thoughts and make a list of gains and losses, not necessarily from the beginning of this life with Parkinson but as they come to me as I write this. I am not dealing with symptoms physically as Cheryl is but it affects my life with an intimacy I did not intend to sign up for when we married many years ago.
Below is my list so far:
Gains:
a greater knowledge of how much is lost to a person that has dementia.
circular repetitive conversation
consideration to how things are said (tone and volume)
new friends,
simply meeting with new people that are not friends,
different view of walking paths,
empathy and concern for others,
end of life planning,
new found cooking strengths,
exhaustion,
unwanted attention,
unwanted advice and opinion and solutions
meditative thoughtful discernment,
new socialization,
family closeness,
family envy,
party envy,
care for spouse, growth in knowledge
patience and resilience, less “flying off the handle” in various situations
how to deal with fainting spells
how to deal with falling
how and when and who to ask for help
inner calmness
close attention to safety concerns.
close focus on safety,
slow walking, not strolling, slow walking
knowledge of skilled medical care;
prayers and kind thoughts from total strangers
Losses:
mobility and spontaneity;
spousal conversation that is not tainted with cognition failure
implied requests or “helpful” comments (instead of, “it looks cold outside” say, “please put on a jacket”)
consideration to how things are said
confidence in the future;
ease of travel;
disinterest in end of life;
spontaneity of exercise;
patience
inner calmness
I may add to these lists as life goes on. Somethings appear on both lists because they are both. Somethings on the gains side are not always good things. Somethings on the losses side are good things. Perception is everything and nothing.
Three O’clock in the Morning is a novel by Gainrico Carofiglio. A story of a teenager who makes a trip to France with his estranged mathematician father to be cured of his epilepsy and ends up learning about his father in an intimate way during two days without sleep.
“Who were epileptics?” I asked, realizing that this was the first time I’d managed to say the word.
‘Just to give a few examples: Aristotle, Pascal, Edgar Allan Poe, Dostoevsky, Handel, Julius Caesar, Flaubert, Maupassant, Berlioz, Newton, Moliére, Tolstoy, Leonardo da Vinci, Beethoven, Michelangelo, Socrates, Van Gogh.”
I processed this information.
It’s strange how the same thing, exactly the same thing, can make us feel so different depending on how we see it, the mental context in which we put it.
Ever since I’d been diagnosed with it, epilepsy had been, as far as I was concerned, a stigma, a sign of inferiority, a disgraceful blemish that had to be hidden. After Gastaut’s words, after hearing that list of geniuses who had all apparently had a problem similar to mine, my inner world now turned a hundred and eighty degrees, as if moving from darkness to light. I had felt like a reject, and, all at once, for the very same material reason, I felt almost one of the chosen, a member of a special category of superior beings.
“Please sign your drawing,” Gastaut said, in an almost formal tone. I signed it, and it seemed natural to me, as if I were signing a contract with my new life, which was starting at that moment.
He stood up, shook hands with us, repeated that he would see us again in three years and walked us to the door.
— from the novel.
I found myself reading it at three o’clock Monday morning. At 2:30 am Cheryl was awake and longer able to sleep.
Bummer.
She ate a doughnut and some cereal. She drank some orange juice. I read my book for a bit. How appropriate, I thought. We did the Wordle. It was four in the morning. We went back to bed at four.
I was awakened by the EXTREMELY LOUD AND ANNOYING alarm clock at seven. I fetched her pills. She took them and we returned to bed.
At 7:30 am she arose to get dressed for school. I got up and finished the story. Not a crime novel which is my usual genre. I did not remember that I had finished the Wordle.
It produces a reaction in me close to anger. I do not understand why. Anger is not quite right. Disappointment and some sadness with a little depression mixed in is a better description of the emotional mix. The only constant in life is change. However, that does not mean we have to like it.
In Matthew’s Gospel 21 (28-32) there is a story (parable) and I thought of it as I reacted to Cheryl’s idea. The parable in Matthew is about a owner of a vineyard who had two sons. He asked (told) his first son to work in the family business. He replied that yes he would go but he did not. When Dad talked to the second son the kid replied, nope, not today. I am hanging with the boys. He later relented and went to work for his father. It had not been more than a couple of weeks since it was read at mass.
That second son’s reaction was much like mine when Cheryl told me a confused story about Dan and Lynette. She though that Dan was a the Hospice of Cincinnati facility visiting with Lynette who was dying. He was not but I did not talk to him as I should have. My first reaction was similar to the second son. Nope. Ain’t doin’ it. I have no good memories of that hospice facility that is where my father died.
I gave in and took her to see Dan and Lynette. I put whatever little dinner preparation I had started back into the refrigerator for later. I made the five minute drive to the Hospice facility.
Cheryl was having a good day. We ran some errands and took a walk in the park. We had lunch at one of our favorite lunch diners. Our activities were all spontaneous. It was one of those sixty-five degree early March days. It would have been perfect if there no breeze at all but it was an okay breeze of five knots or less. It was very sunny. When we returned I told her about Dan’s call on Saturday. She did not return with the hostility that I expected as I had not told her right away. (This kind of news makes her upset for days.) She did react by calling Dan back to talk and find out what was going on.
When we got to Lynette’s room and I realized that Dan was not there I called him. In our conversation Dan explained that Cheryl kept asking where he was and did not seem to understand he was not there at Hospice. I asked him if he wanted to come. He does not see well and does not drive at night. He said yes he would like to do that and maybe we could get something to eat.
We drove across town, picked him up and came back to visit Lynette. She was unresponsive when he was there as she had been when we were there forty-five minutes earlier. Dan is a pretty quiet guy but he was a little beside himself. After a short visit watching Lynette’s irregular breathing we went to get something to eat. Dan insisted on paying for dinner.
We talked a lot while we were eating pizza at one of our local pizzerias. Comfort for a friend is something for which one must always find time. I have no explanation about my initial reaction other than it was about me. I had planned dinner and had comfortably settled into my chair to read before I had to get up to make dinner. I had no intention of comforting someone who was grieving that evening. Cheryl had been very upbeat and happy all afternoon. I was feeling pretty good myself.
Kindness to others earns grace. If only life was easy. This occurred on Monday. Late Tuesday since I had heard no more from Dan, I sent him a text and asked how things were and if I could help.
This is Wednesday and Lynette is deceased. Dan called late last evening to tell me that Lynette had passed on today. It is a sad moment for us both. Cheryl was asleep. I did not wake her with bad news last evening. This morning as I was going through my litany of what was happening today, I told her about Dan’s call. She was confused for a bit. She will ask me about it later.
One of life’s little twists just happened. Fate/karma/luck/the angel Gabriel – whatever brought me back into their lives on the last day of Lynette’s. Time for a little meditation and maybe prayer and reflection.
Cater was the answer to Wordle today. I am a little sad today. Lynette was good people. The only person I knew who knew how to tat lace. She had lots of crafty talent. She was an executive chef and a good cook. Dan is retired away from the “front of the house” in restaurant parlance. The restaurant business is where they met. Lynette was a very special person and I think I am better for knowing her in life.
May Lynette rest in peace without pain and dementia. Carpe Diem.
Adjunct_Wizard 