My search for grace and meaning during a care partnering life with a wife with Parkinson's disease and her often confused and maddeningly disorienting world.
My cousin Robert (Bob) was filling in the last leg of a family travel visit tour. He called a couple times when I could not answer immediately. But I called back a bit later.
We had lunch.
We met Marian.
It was a good day.
The whole Covid pandemonium has many families scrambling for visits and catch ups. I have been thinking about the same thing as well. Bob suggested that we gather somewhere. All of our parents are gone now. Some of our generation of the family is gone. Perhaps we should have a cousins gathering before it is a meeting of one or we have to gather in heaven.
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.
Are the heralds of Spring. In bright yellow against the budding green plants they shout, look at me. I am here. And dare the deer to eat them. When Mr. Sun comes out they shout their greeting louder.
I suppose they do not taste very good.
I Wandered Lonely as a Cloud By William Wordsworth
I wandered lonely as a cloud That floats on high o’er vales and hills, When all at once I saw a crowd, A host, of golden daffodils; Beside the lake, beneath the trees, Fluttering and dancing in the breeze.
Continuous as the stars that shine And twinkle on the milky way, They stretched in never-ending line Along the margin of a bay: Ten thousand saw I at a glance, Tossing their heads in sprightly dance.
The waves beside them danced; but they Out-did the sparkling waves in glee: A poet could not but be gay, In such a jocund company: I gazed—and gazed—but little thought What wealth the show to me had brought:
For oft, when on my couch I lie In vacant or in pensive mood, They flash upon that inward eye Which is the bliss of solitude; And then my heart with pleasure fills, And dances with the daffodils.
As we get older and this goofy damnable disease takes more from her I find that is more important to find those gems of experience and good times.
I did not realize how important that is to me and to Cheryl. Today was a pretty good day. I expected it to not be so. Cheryl slept little overnight.
Ordinarily when that happens she is tired and lethargic the next day or maybe that is just me. Today she got up and had some breakfast. She took a shower with no help from me. We went to exercise class.
I made dinner that evening. I made a Betty Crocker noodle thing that I had not done before. We had our neighbor Jane over to eat with us. Both Cheryl and Jane pronounced the recipe good, so, I will make it again.
At exercise class we were reminded that this evening the Parkinson Community Fitness is having a Beach Party theme party that evening. So after dinner and Jane returning to her condo, I reminded Cheryl of that and asked if she wanted to go. She said yes if it was not too late. It was not so we went.
At first she seemed iffy as the seven o’clock meds shook her well being for a bit but she came out of it okay and had a good time. As you can she by the picture, she had her smile on. We both had a good time and we even got to dance for a bit. (It was more like a sway. :-)) — Thanks to another Jane at PCF we have these great pictures on our Frameo electronic picture frame.
Cheryl and Paul, 2022
In both of these pictures, she has her smile on. Carpe Diem.
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.
Last night I took her home. It was all I could think to do to help calm her. She was certain that she was not home.
She announced that she wanted to go to bed. It was a little early but not unprecedented.
Cheryl became agitated and upset at about 8:30 in the evening and wanted to go home. I tried pointing out to her that we are home. She was argumentative and inconsolable. She got her purse and rolled her pajamas under her arm. We got in the car and toured the small town we now live in.
Almost returned to our street I said, almost home. When we get there it will be just in time for your bedtime meds. She replied, good. I am tired and want to go to bed.
When I left her in the bedroom putting on pajamas to go read for a while, she told me, drive carefully on the way home. In her mind I lived somewhere else. I replied, I will.
We have done this before with some success so it is not totally unprecedented.
I was looking forward to a long and agitated sleepless night. Fortunately I was wrong that night.
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.
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.
Adjunct_Wizard 