It occurred to me this morning as I was reaching for the Cheerios that lots of tiny things have changed in our life together. Not all of them are Parkinson changes. All can seem associated with Parkinson. I will stop using the possessive and leave Parkinson by itself.
Starting with Cheerios, Cheryl rarely ate Cheerios until recently. The why of that thought is unknown. It may or may not be a parkinson. Before Cheerios she was a huge fan of Life cereal. So much so that I was buying Life cereal in the four box collection from Boxed Up online. For several months perhaps a year and a half it was Life cereal, some dried cherries on top and orange juice. Then it suddenly switched to Frosted Mini-Wheat cereal but only for a couple weeks. Sticking with the heart healthy ideas I bought some Cheerios for myself on day as I passed through IGA shopping for the other things on my list. They were quickly adopted by Cheryl as a breakfast option. Cheerios is the current choice virtually every morning now.
A Partial List of Changes:
dementia and support
Me and tea
showering and hygiene
keeping track of meds
Daily chore responsibility
handholds around the house
Emotional response to songs
Falling and fainting
and on and on…
As these changes occurred in our life together I did not take notice of them, I merely rolled with it at the time. I admit to being initially annoyed and sad to see something change away from what it was. Old people like to keep things as they are. The past tense is disappointing but the Beatles broke up in 1970. People move on.
Parkinson symptoms are treated with powerful mind altering chemicals. It is the doctor’s call as to what will help. It is the care partner’s call to observe and listen and respect and help with those drugs. The doctor is global and strategic. Day to day caring is tactical, down-to-earth and immediate.
Scott was here last night to be with Cheryl while I visited my stock club meeting. The fourth Monday of every month is the meeting of our little stock club. We started this little club in 1984. Over time we swelled to 20 members but the past few years attrition and death has shrunk our number to eight. And over the past few years the meetings are more social than business. Where else can eight old men get together and trade war stories about getting old, fortunes missed, grand children achievements, the proper temperature of beer for drinking, Parkinson’s disease, prostate problems, cataracts and hearing issues, but in the backroom of a local watering hole near a railroad track? It is always fun and over the years I have rarely missed it.
Before I left for the meeting Cheryl’s stomach was bugging her a bit as happens occasionally after her 4 pm meds. When I returned I asked her if she had eaten anything. She said yes but behind her Scott shook his head no. She answered my question how she thought I wanted her to answer it.
Eventually about 11:20 pm we went to bed. Over night she was fidgety and got up at 2:30 a.m. to make a list so she would not forget something. I sat her at the kitchen table with subdued lighting and with paper and pencil she worked on her list.
Her list is a business memory. I sat with her and about 3 a.m. she decided to sleep some more and finish later on. Buzzing around in her mind these days is the thought of creating a database of birthdays for the people in her family. Many times and in many instances she has started this task. Just like engineers this thinking starts with a pad and paper. Often sketches are made to indicate data flow and information input. Just like an engineer Cheryl’s notes switch back and forth from cursive to printing. And although she had an urgency about this activity in the very early morning hours, she had no ideas about what it was or what it was for in the daylight hours.
She seems so fragile to me in the morning lately. She is still working on the remnants of some dream as she awakens. This morning she got up and went into the bathroom. I got up also and put clothes on, got some coffee for myself and turned on the CBS news to see if any new wars developed or any movie stars got divorced overnight. About 20 minutes later I went back to check and see if any help was needed or if there were any special breakfast requests. She was seated on the closed toilet waiting for someone to bring more toilet paper. I showed her where the extra rolls were and asked if she wanted cereal for breakfast. Yes was her reply. I returned to the living area.
About ten minutes later I went to check again and she told me she was still waiting for someone to bring toilet paper. The thirty minutes of database design time in the middle of the night messed up her waking pattern.
More and more she seems to have a slow switch from early morning confusion to present. I have not found a solution to any of this confusion and delusion. I listen to her conversation and make a lot of rapid decisions about how to respond. If it seems like she is getting ramped up about someone coming (that I know is not) I try to gently steer her toward the correct thinking. If she is getting fired up about having a family gathering I merely agree with her plans.
On this particular morning she was concerned about whether David was going to show up any minute to cook the Thanksgiving turkey. It took several repeated conversations about date and time but eventually she seemed okay that Thanksgiving day was not today. Over several hours she came to the conclusion that she should take a shower and get ready for her exercise class. Over those same several hours I planted various seeds of the idea about taking a shower and looking for exercise clothes to wear.
Me and how I feel – It is wearying for the care partner to both console and encourage and direct and deflect her delusions and my own background anger (too strong a word – disappointment?; discouragement?; vexation?) with her brain and how it is operating with PD. My question – Why can’t she have the movement issues without the mental disability? (God are you listening? Why her? She has always been a sweet person. Why did you dump this crap on her?)
Observations about my reaction to her needs – (Shit! Not again. This is the same conversation we had 15 minutes ago. whiskey tango foxtrot.) How can I help dear? Cheryl – you can’t help. Perhaps not but let me hold your purse for you while you get out of the car.
Is this genuine love? … To have and to hold from this day forward, for better or for worse… Those where part of the original agreement. Too late to back out now. She looks so sad and distraught when she realizes that she needs me to help her up from the chair because her scoocher is busted. It is heartbreaking.
There is absolutely nothing that goes fast in our life anymore. Do I miss it? My immediate reaction is NOT.
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.
This company wants me to buy a device that pretty much tells me I am not dead yet. I already know that. I run to the store and run to the library and run to the doctor fairly often. I am pretty sure I am still running okay and not dead.
Many people, probably most, spend a great deal of time running here and there. It is ingrained in us. We chide each other if we are not active. But instead of running what if we took a deep breath and stopped to look around at God’s wonder of Spring and the renewal of life. It happens every year. It is truly amazing.
Breathe and notice the world. Run for exercise and health but do it outside where He can show you His wonder.
Stephan T. Patsis is a favorite cartoonist. His signature work, “Pearls Before Swine” is the cartoon in the comic section of the local newspaper that I read first when my wife hands me the funnies and says, “There are some funny funnies today.”
You have to choose to be happy. The goat who is somewhat intellectual and thought provoking tells rat. An absolutely true statement from a smart goat. One does choose to be happy and no one else can make that choice for you.
And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be. And whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy. – Desiderata by Max Hermann
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.
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.
It’s the fragment, not the day It’s the pebble, not the stream It’s the ripple, not the sea That is happening Not the building but the beam Not the garden but the stone Only cups of tea And history And someone in a tree
A powerful thought from a master poet and songwriter.