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.
Back in the pre-Parkinson’s days, Cheryl was a computer database wizard (witch?) or at least the guru for several companies that her consulting company serviced as clients. She spent a lot of time on her computer. Even in retirement she kept it up with church and other groups providing email news and other communications.
We play more scrabble these days as I try to pry her out of her office and away from her computer which has become more frustrating and confusing to her. Her other go-to game is bridge but that is hard to do with merely two players and her cognitive function failing. So, we have been playing scrabble more often. I offer it as an enticement to get her away from her computer. Many times it works. I hate scrabble.
She was (is) a good scrabble player. A good scrabble player does not worry so much about the words as the score. A good scrabble player is always hunting around for a word that goes into the corner for the TRIPLE WORD SCORE. A good scrabble player is always plopping a word on the double word score preferably one with a Z or Q in it.
I am a lousy scrabble player. I am always looking for the longest word I can make. The more pedantic the better it is. If a player asks – what does that mean? – or challenges its meaning, I am vindicated. Cheryl often beats me, maybe always beats me. I love her. I hate scrabble.
Her computer is becoming more confusing and the frustration has kept her from sleeping. Over time I have contacted some of the organisations that she was doing things for and suggested that they relieve some of the burden on her. It takes her more time and she worried about missing her own perceived deadline. It kept her from sleeping as she got anxious (a good scrabble word) about what she may have forgotten to do. The people she works with have relieved her commitment without grief. They understand her disease and how it screws with her head and her need to stay involved.
So I try to get her to play Scrabble more often. Last evening my lousy play was winning. I was ahead by 40 points at one point. I felt a bit guilty because she was struggling mentally and getting tired. But my lead kept shrinking. Was this a ploy? (one of my words) At the end she was ahead by two points but had many points left on the shelf. Aha! I had some too but fewer. I did the math.
She still beat me by 1 point. I hate scrabble but love her. She still has the killer gamesmanship in her.
Maybe we will try something that I can win at but on second thought that is not the point for me. I hate scrabble. I am not competitive.
Is there an online bridge group for parkies? Google search coming.
Saturday as we were pulling into the parking lot of church for the 4:30 service, Cheryl looked at me and said – you can just leave me off and I’ll get a ride home. Not knowing where that had come from I asked – why would I not stay with you?
She responded with – since you are angry you don’t have to stay. Me – I’m not angry. Why do you think that? Her – you were mad about the water.
She is right! I am angry about the water bottle I forgot. I try to take a bottle of water with us when we go somewhere. Occasionally she needs it. Most times not but I want the option. This time I had failed and angry with myself.
I had commented that we forgot water. I may have said simply – there’s no water. We drove church in silence as I was thinking about if there was enough time to stop somewhere and buy a bottle of water. I was mad at myself, not her. It showed in my voice. She thought I was angry with but didn’t say that until we got to church.
She thought I was angry with her. It was much of my conversation with her eating afterwards. We used to go to dinner somewhere after church before the covid thing. Covid-19 stopped that but on Saturday we were starting again.
It’s a small delusion. She interpreted my silence as being angry with her. I will try to watch for it next time and hopefully not beat myself up for missing it.
It has been fifty years since we wed on a HOT August morning. It has been fifty-four years since we first met on a blind date on a blue moon in August. Two skinny kids deeply in love with each other got married in 1970. Nothing but the future in front of us. Standing on the shoulders of our moms and dads.
Spring Grove Cemetery
We had a lot of faith in each other that day. Looking forward we could only see brightness, happiness and companionship. Neither of us could see fifty years into the future. We vowed our love to each other anyway. Here we are.
We were married in the summer of 1970. I was between the University of Cincinnati, newly graduated with an Associate Degree in Electronic Engineering Technology, and moving on to Miami University for a Bachelor of Science. We had rented an apartment in Oxford, Ohio. Scraped together a few sticks of furniture from various sources. Cheryl had gotten a transfer in her job with Metropolitan Life Insurance to the Fairfield office about 20 miles from Oxford, so, we would have an income to support us.
Tricky Dick was president. My commitment to the Selective Service draft was completed. I was enrolled in all the classes I wanted to begin at Miami. Cheryl owned a year old VW beetle that we could have because of her job. (MU had car restrictions at the time.) Life was good.
Three kids
At the end of 1972 our first child was born. — a sidebar: We knew Cheryl was possibly pregnant in time for me to sign up for a second woodcraft class at MU. The Industrial Arts program had a great wood shop. For my project I built a cradle for the new little person. In this class Doc Foss showed a book he had that contained pictures of projects completed by previous students. On the pickup day when I came to get the cradle, he was photographing it for his book. (I got an A. Professor Foss was a grandfather.) Our first child is a science teacher and has four children now. Tempus fugit.
About two years later, our second child was born. — another sidebar: This one was in a hurry. It is common now for the father to be present for the delivery. Not so in the 70’s. I guess we were in the vanguard and Cheryl had all of our children without any anesthesia. Natural. With the first one all went well but took a long time. (A little whining here from dad who did not do much except wait and coach.) So, in preparation for the next big overnight test of endurance, I bought a new thermos, which I still had until 2012 when I dropped it walking into work one morning, filled it with coffee and took it with me to the hospital. Never had a need for the coffee. This kid came zipping out at about 2:30AM. On the way home from the hospital – just me, Cheryl stayed – I decided to try some coffee. Stopping suddenly for a traffic light I spilled a bunch of it down the front of me. HOT. Dam HOT! — Robin Williams, Good Morning, Vietnam. This child is now a mechanical engineer and has married the girl he took to the high school prom as I did. He has two children of his own.
We were fertile! About two years down the road our third child was born. I skipped the whole coffee thing remembering the debacle of our second child. Expecting another zippy birth, I left it at home. Our third child did not want to leave home. Hanging onto mom and not cooperating with the zippy thing, the third one took (I think) the longest to come out and say hello. This one now works for Children’s Hospital as a computer guru. He has two children of his own.
Cheryl had several jobs, me too
When I first started my working career, like my father, I believed that I could work for my employer Cincinnati Milacron for the rest of my work life. That turned out to not be the case. I left CM to work for Valco Cincinnati, left there to work for Cincinnati Industrial Machinery, got a M. Ed. from Xavier University in preparation for teaching high school science. Failing that career move, I taught as an adjunct at Sinclair College and the same at Southwestern College. I became a GED instructor at SWC and taught a basic math class. After a year and the Obama administration insisting that for profit colleges do a better job at helping students to find jobs, I could see my job disappearing and jumped ship to Armor Metal Inc. in the service group. My intention was to ride that horse into retirement and I did.
Cheryl during our early marriage spent much of her time raising the kids and continuing her course work in mathematics and computer science at University of Cincinnati in evening college. She graduated with a degree in Computer Science. Once the children were in school she worked for a time at the same school and ran the first computer lab. Later she worked as a computer consultant with M.B. Potter and Associates. She left there to work for Donahue securities and when they collapsed under the weight of a federal investigation, she worked for the Securities and Exchange Commission. F.D. Fund Choice bought the funds that she had been working with and she worked for them for a time. She left there to work the remnants of the General Protestant Orphans Home in Anderson township. She was RIF-ed from there and worked as a contractor again for a bit for Armor producing the manual documentation for some of the machinery they produced for the can industry. Her Parkinson’s was beginning to be more annoying after this so she retired.
Early in our marriage, Cheryl attending evening college gave me the opportunity to be alone with the kiddos for two or three times a week in the evening. This is the best thing that can happen to a young father. I think it makes one closer to the children. At the very least it makes Dad appreciate Mom’s daily activity.
Travel with kids
When the kids were very small we typically vacationed at one of the Kentucky State parks. We visited many over the years. Kentucky does a great job with their parks and they are very family oriented.
When our children grew and matured we took other longer trips. Some friends of ours sold everything in Cincinnati and bought a small motel about two blocks from the beach in Myrtle Beach, South Carolina. Over many summers we visited them and rented a couple rooms for a week or so and visited Charleston.
The rock, stick and bush tour consisted of Black Hills, Mt. Rushmore, Yellowstone, Jackson Hole, Jackson, Wyoming a lot of Nebraska and a 500 mile side trip to the confluence of America and then home. Two weeks and a lot of driving. In subsequent years there was an old house tour to Washington DC and Monticello that ended in Myrtle each for old times sake. Good family trips involve a lot of argument, fast food and eye-popping credit card bills but are worth it. And make great memories.
Travel without kids
We traveled without kids also to Minnesota, to Alaska, to California, to Florida, to Oregon, to Washington, to Maine, to Massachusetts, to Virginia, to North Carolina, to New York and Vermont. We traveled without kids to some of the same places where we had taken the kids to see them again quietly. The Parkinson’s has slowed travel.
Wonderful memories and great times and great food are a wonderful life.
Yesterday was an interesting day. (Also known as Monday, bloody Monday except that it was Tuesday.) It may have been the first glimpse of the future difficulties that Cheryl and I will have to deal with going forward in our Parkinson’s disease life.
Confusion
As a retired engineer I tend to think of things in a chronology, this then that then this and so on.
I have written some of these thought postings this way. This one is that way simply because I think in my mind I am unsure of the exact sequence of things. And remembering the sequence helps me to recall the conversational exchange and my emotions. I regret that I am not that great at pulling the sequence out of my head but when I do the rest of the story follows.
Jan and kids in bathroom
At about a quarter after six in the early twilight of morning my bladder insists that I get up to empty it. I find as I get to my seventy-first loop around the sun that my bladder seems to be on a three hour cycle. It is amusing to discover that I have kept a tally in the back of my head and can retrieve that at will. On this morning I got out of bed as quietly as possible because I could hear Cheryl gently snoring on her side facing away from me. I came back to bed and as gently as I could settled back into the warm comfort of pillow and blanket thinking to myself that the dammed alarm would go off in a half hour but maybe, just maybe, ten or fifteen minutes of unconsciousness still lurked in my future.
Cheryl sat up about halfway and said – Jan? Are Jan and the others gone? We have had similar conversations in the early morning twilight. I have become part of her dream and she does not always remember them. So, I responded – Yes, I think Jan went home. (Janice is deceased. She passed away about two weeks ago. She is very much on Cheryl’s mind.) Cheryl responded with – What about the others? Me – What others? Cheryl – Those little girls that were with her. Are they gone? Me – Yes they left too. They had to go home. It was getting late. Cheryl – Okay. Good.
She gingerly got out of bed making little moaning noises along the way. Her arms and legs often hurt her in the morning. Sometimes she complains of cramps. Sometimes she reports that they merely hurt. On this night it seemed to me that she had not spent much of the night twitching her arms and hands with dyskinesia, so I cannot associate her movement with muscle cramping and ache. She went into the bathroom and turned on the light after closing the door behind her.
A few minutes later she returned. She had left the door open a bit and the lights on. This is a new behavior, so I asked – Why did you leave the light on? Cheryl – Jan and those kids are in there and they need some light. Me – Oh. (as I rolled over to face away from the radiance of ten LED lights on ten percent power. They are amazingly bright in the early morning.) Are you coming back to bed? Cheryl – No. It will be time for me to take pills in a little bit. (A surprisingly lucid comment from someone who was just talking to her dead sister moments before.) Me – Okay. I’m going to lay here for a bit. She shuffled out of the bedroom.
I got up to disable the seven o’clock alarm and turn of the bathroom lights returning the bedroom to a natural twilight gray cast. I realized that the illusory idea of ten to fifteen more minutes of blissful slumber was lost so I got up too.
Our kitchen in our condo has no natural lighting, no windows. In an effort to counteract the dark I had installed two bright LED fixtures in place of the hanging fixture that I was always crashing into and the tiny ceiling fan above the front of the range that was merely annoying and never on. Cheryl turned on the lights and was rummaging around for her breakfast. She had taken her morning dose of pills. I made coffee for me and poured orange juice for her as she put dried fruit on her cereal. I found some cereal for me and went to collect the papers from the hallway.
Why are we here?
I opened the papers – the local paper that is now part of the USA Today network for her. She still reads the obituaries. She has done this for our entire married life. And she enjoys the comics. She reads them all and works many of the puzzles in the same section. The Wall Street Journal for me. I still enjoy the business stories and cling to the hope of becoming rich in the markets. I may have started too late to achieve this but I am an optimist who is often disappointed by market outcomes.
We are both eating breakfast unusually early. Over time our get up time has kept later and later until eight am is pretty typical. Most mornings now I get up at seven am with the alarm and get Cheryl’s first dose of the day. She takes them and goes back to bed for a bit. Today our breakfast discussion started with —
Cheryl – Why are we here? When did we come here?
Me – (uh, oh) We live here we moved here about four years ago. Do you not remember?
Cheryl – No. Not really.
Me – Does this not look like our house?
Cheryl – Yes, I guess so. We live here? We’re not going home?
My eyes well up here when I recall this conversation. It has been a few weeks but we have had it before. I am talking to a different person. She knows who I am but her anchor in reality is gone at this moment. Later her reality will be switched back on, I hope, but for now it is up to me to help her find her way back. It is the scariest thing that I have to do and I am at a loss as to how to help her. No amount of debate helps. Denial of her understanding merely makes her anxious and upset. Imagine that what you believe is upside down is right side up according to the person you trust most to tell you the truth. Are you loosing your mind?
A long discussion ensued. Within this discussion I gently tried to persuade her that this was our place and we did live here. For an hour or so it seemed that she believed me but was skeptical. Eventually she announced that she was tired and was going to lay down for a nap.
I awakened her at 10AM for that dose of pills. I did not want her to get out of sync with her medications today. This is a Tuesday. She goes to a physical exercise class designed specifically for parkies. As I helped her to sit up to take her medication, I talked about this fact. I usually do to assure her that if she wants to rest before class we have plenty of time for that.
I helped her to the window seat where she usually sits to put on her clothes. I must have looked as though I was going to leave again – I was, to take the water glass back to the kitchen – and she said to me – Don’t leave me with these people. And is David gone? He was right here in this chair.
Perhaps, the Parkinson’s motion causes a lack of sleep. The lack of sleep causes all these other symptoms. This will be a hot topic next time we see the medical folks.
I took the water glass back to the kitchen and talked loudly to her while I was away out of the bedroom. I came back and sat in the chair where David had been sitting so she could see me and not David. We talked for a bit and she said that she knew David was not there but she could see him. I asked if he was still here and she replied, no he was gone.
Sitting here now, recounting this episode, it occurs to me that it can be and probably is terrifying to someone to realize that they can no longer rely on their senses. That what you see may not be what you see must be disturbing.
She did get through putting on clothing and we collected all the paraphernalia for her class. Water bottle, pills, bag of Covid-19 safe exercise equipment, my tablet to read during the activity, cane, masks, purse, wallet, car keys, ad infinitum.
In the garage the car made a noise like ruh, ruh, ruh, and then click, click, silence. Car’s battery died. No class for today.
Lord, as we face this day together, please help me to handle each moment with strength. May my attitude be positive, my hands gentle when administering help and my heart full of compassion. Help me to understand that I do not know all the answers, that only she knows how and what she is feeling. Teach me to be supportive when necessary, to be the explainer when asked, or to be the leader if called upon by her to do so, but instill in me the patience, wisdom and empathy to determine which of those is called for this time. Please lift me up when I am down, show me the humor in awkward situations and nudge me when I lack understanding. (Do not make your nudges subtle for I am male.) Send me aha moments for us to grow through, messages from above for us to share and empathy so that I can step into her shoes and readjust my attitude. I’ve asked for a lot Lord, but the most important is my request for forgiveness when, in human error, I tread upon her heart. So please …keep my feet planted in solid faith so that I can sow seeds of kindness and not weeds of grumbling toward the many tasks at hand. (like a car battery) Fill me with wisdom so that when we walk this journey together we don’t get lost along the way. And please, please, please make this battery thing easy today. — make it be so, make it be so.
Carpe Diem!
Cheryl said, call Dan (her brother). So I did. We did not go to her Parkinson’s Foundations class. It is a series of exercises and movement with her behind firmly planted in a chair mostly so that her balance is not an issue. The occasional exercises that she stands for are behind the chair so that she has a firm anchor to grab. She enjoys these and the activity benefits her. It is as though she has had an extra dose of meds. Her mood is different. Her movement is better for a few hours. We often stop somewhere for lunch afterwards.
We sat out by the garage and waited for Dan to come. I got my bike out and replaced the saddle with the new one I had recently purchased. (For those of you who ride a bicycle for exercise know the importance of a good saddle.) I made various adjustments and rode it around the parking lot. We talked for a bit sitting in the shade of the building. (Carpe Diem.) She did not seem confused about where we were or why we were there or what we were doing. She seems to be back to reality.
Dan came with his magic car starter kit. Left me with his car and he took my car back to his shop to replace the battery. Good news! It was still under warranty. The new one was obtained with no payment necessary.
After Dan left we went into our home. The day was heating up and the A/C felt good. Left to our own devices we both puttered away the afternoon. This is Tuesday – Pizza Tuesday! Cheryl went into her office to get some things done. She has formed a team to help raise money for Parkinson’s research and likes to keep track of how the team donations are going. (The computer has become more and more confusing to her so often I find myself helping her find the right screen to look at.) There is nothing that she has to do with this information yet but eventually it is her intention to send thank you cards to everyone. The thank you card is also a remembrance of our golden wedding anniversary this year.
I took some of this Carpe Diem time to poke a bit at this posting and get my ideas and chronology down. After an hour or so I decided to check on her and see if she was stuck on any computer screens. In addition to being confusing, occasionally her jittery motion with the mouse will cause mystery screens to open or she will fling some file into the background making recovery difficult.
I went into her office and she told me – Nancy is mad at me. I could tell when she drove by. Me – When did you see Nancy? Cheryl – Just now. Me – where were you? Cheryl – I was in my office when she went by. Me – She was in her car? Cheryl – Yes. She does have a window in her office but it faces the forest in the lot next door. There is no view of the street at all. And Nancy lives miles from us, not a long way, but it is unlikely she drove through our back garden.
… Alrighty then, the reality quotient dipped a bit into the red. But it is later into the afternoon and this is Pizza Tuesday. Our next door neighbor and friend Jane will be here to share. Cheryl always has animated and friendly conversation with Jane around. Jane is a godsend and very kind to us. After her 4PM meds, Cheryl went to lay down some more.
We had pizza. Discussion caused or, at least, helped with recovery of reality.
Jane is so encouraging. She could tell Cheryl was struggling a bit. She kept the conversation to pizza and the grandchildren. And at the end of our dinner and conversation it seemed that Cheryl was back again.
This was a particularly bad day for Cheryl wandering in and out of reality with a little bit of hallucination and delusional behavior. Up until now she has not presented all of these together.
As I finish this up a couple days later and reflect a bit, Cheryl does much better with a good night of rest. When we visit with the doctor in a few weeks I will steer the conversation toward this. Perhaps there is a helper med that will allow her to rest peacefully at night. (But not put her out so much that she misses the potty call we all have in the middle of the night.)
Parkinson’s pretty much sucks for the caregiver but especially for the caregivee. Carpe Diem, dude! Carpe the damn diem.
Direct speech cuts through the fog of PD but if it is done without thought it can sound hurtful to the parkie.
As Cheryl and I move farther down this road of Parkinson’s disease, it becomes more and more important for me to speak a little bit slower and more distinctly. Two things I have noticed recently tell me that Cheryl has a harder and harder time following conversation. The first thing I noticed is that more often after I have related a story to her, she will ask a question to clarify it that indicates she did not understand what I was talking about from the beginning but was too polite to interrupt and get a better understanding from the beginning. The second thing I have noticed is similar in that she is certain that she understands the story and at the end comments that the person – someone different than who I was talking about – etc.
To counteract that, I hereby resolve to take a deep breath more often and allow her to jump in if she has a question. The other aspect of that is that she has a difficult time following group conversations. Zoom meeting conversations seem specially difficult.
It will be tricky though. She perceives that I am angry when the expression on my face reveals that I am disappointed that she did not understand my comments. (Maybe I am because I realize I have gone on and on without letting myself detect whether she was with me or not. Or maybe I want to believe that.) I do try to not be angry. I do also miss the fact that we used to have animated discussions about a wide range of topics – political, religious, emotional, parenting. There are a lot of those in fifty years of a marriage. We cannot do that any longer, she cannot always follow my thought progression. And Cheryl, oft times, completely looses the thread that she was trying to explain and will give up mid-sentence.
I have learned to not ask questions while she is laying out her thoughts about something. I do not always do it. We have been married too long and she is one of the most intelligent people I know. I love her too much. We used to challenge each other in our thought processes. It takes little commentary from me to knock her thought train off the track. And when I do that she perceives that she is “being made fun of”. It saddens me and no amount of apology can remove my internal guilt for being a dumb ass and forgetting about her current situation. I should have kept my mouth shut so she could get her though out.
I suppose that a caregiver spouse is doomed to the fire of dumb-assedness occasionally and maybe even often.
A Small Prayer
Lord, help me to understand that I do not know all the answers, that only she knows how and what she is feeling. Teach me to be supportive when necessary, to be the explainer when asked, or to be the leader if called upon by her to do so, but instill in me the patience, wisdom and empathy to determine which of those is called for this time. Please lift me up when I am down, show me the humor in awkward situations and nudge me when I lack understanding. (Do not make your nudges subtle for I am male.) Send me “Aha” moments for us (but specially me) to grow through, messages from above for us to share and empathy so that I can step into her shoes and readjust my attitude. These are selfish asks and I have asked for a lot Lord, but the most important is my request for forgiveness when, in human error, I tread upon her heart.
I added words to a prayer written by another caregiver Facebook friend that she wrote from a wife’s perspective. On my computer home page I simply call the file “ReadThisEveryDay.pdf”. I read it almost every day but not often enough during the day to remind me of transgressions.
[Image: Calvin and Hobbes] Hind sight is 20 – 20 but prescience is foggy at best.
God is in everything… Dolly Parton
She says this a lot. I have heard her. She merely blurts it out in the midst of conversation with an interviewer. She is a very upbeat and happy person.
How does one develop that attitude? Is it innate? Is it learned? Is it contagious? Happiness is contagious. Do something helpful and good for another and it stays with you for a long time. Is this why the ultra rich start a foundation to give their money away?
I have noticed that this seems to make some people of lesser means jealous. They may not be but it seems that some of the most vicious attacks on some ultra rich guy giving away his money in a fashion he so chooses cannot be explained any other way.
So how did Dolly become a happy person? She is satisfied with her life and comfortable in her own skin. She needs no more than that which she has.
Is everyone able to do this? I would make the case that they are able regardless of income level. Look inside yourself.
Me. What makes me happy?
Many things make me happy. Anything that is not stressful. I made a list.
Happy
Love
Trust
Esteem of self
Esteem of others
Caring for Cheryl
Seeing Cheryl happy
Seeing Cheryl untroubled
Riding my bike
Listening to audio books while riding
fresh air and sunshine
Empty thoughts while riding
waving to like minded people
conversing with other riders
Mindfulness, emptying the mind to feel the world
Routine and order
Reading – both novels and non-fiction
Understanding how physical things work
Stressful
Remembering everything to do
Remembering meds as Cheryl forgets
My sister-in-law who is able point out flaws in my viewpoint
Social media politics
HOA issues – I am president of the HOA
HOA maintenance stuff
Seeing Cheryl troubled about ability leaking away
Seeing Cheryl confused about simple things
Mind Puzzle
I am gladdened to discover that my happy list is much longer than my stressful list. I am emboldened to note that I have little control over the stressful list. I am excited to realize I can limit exposure to the stressful items.
It is easy to go through life looking backwards with regret. Or looking backwards and wishing for the old days. Time only moves forward. The future is impossible to perceive. Man plans and God laughs. Plan for every contingency and then buy insurance.
This is written over a period of several days. A series of notes about odd behaviors that seem to occur late afternoon into the evening.
Exhibiting oddly meaningless compulsive behaviors, she arranges and rearranges various papers. Talks about another topic while waving around an email printout of a hair appointment.
Talking to the kids in the room shining a red light in her eyes. “Just leave me alone until I get this done.” — woke me from the depths of my novel to find out to whom she was talking.
Stacking and restacking paper.
That was last night. This evening she exhibited similar strange behavior.
Reading and re-reading various things she has printed from email.
Anna to the rescue. I sent a text message to my daughter and asked her to call her mother. Sometimes that bumps Cheryl out of her circular confusion. And then she magically came out of it.
We played Scrabble. This is a game that Cheryl dearly loves. Even with the Parkinson’s she is still good at it. I also turned on every light to make it brighter in our condo. She was in the midst of beating me when our daughter called. Reprieve!
In the morning we had a small conversation about when we were going home. We were home. I pointed that out and asked how she slept. She replied – not very well. This place does look like our condo though. Are any of the kids here? Me: No. Only us here today. Cheryl: That’s good. I’m tired I think I will lay down for a while. She went back to bed and slept for a couple hours.
I am starting to think that her meds may be screwing with her sleep patterns. Her devotion to her office and email in the evening she defends by saying – it is the only time I can get anything done.
I guess I am trying to work out how to explain these behaviors so that the doctor can make sense of it. He and the nurse practitioner do listen to me. I am grateful for that.
Every day is a winding road. – Sheryl Crowe … truer words were never sung.
I will forever treasure this picture. Last year in Cincinnati, Janice (seated) came to help Cheryl with a fund raiser for Parkinson’s disease called The Sunflower REV it up for Parkinson’s. In this particular picture — once in a while I get a good one — they both have their smiles on. The single most disappointing thing about Parkies is often-times they loose their smile. They look stiff and glum.
Janice passed away early this morning. She had contracted Covid-19 from somewhere and the combination of diabetes, Parkinson’s disease, Myethenia Gravis, maybe a little COPD did not allow her to recover from the infection. We will miss her greatly.
She and her husband chased jobs to Florida many years ago. Next year they would have celebrated 50 years of marriage together. When the covid pandemic turned off our plans for a Golden wedding anniversary celebration this summer, they were quickly modified into a joint celebration next year, when, hopefully it would be safer. Alas, it is not to be.
Covid-19 is a peculiar virus. It is a predator that seems to be culling the society of the weakest and most vulnerable.
It is all part of His plan, but, today I am disappointed in Him and any plan that He has. Mere humans cannot understand God’s plan for us all. I cannot find solace and comfort. Not yet. It is too soon. First my Brother and now Cheryl’s sister. It is too soon. The loss is too strong. Perhaps later.
Visit in October of 2019
In the fall last year Cheryl and I visited my brother who was recovering from illness and one day we drove across the state to have lunch with Jan and Bill, their son Justin and Cheryl’s cousin Mary Kay and her husband Jay. This picture is from some Friday’s somewhere in Florida.
The trip was taxing to Cheryl. We drove. It was my choice to do travel that way. It allowed us more flexibility. I felt that I could abandon our plans at any time based on Cheryl’s mood, physical well-being or whatever came up. We stopped often and spent no more that six hours on the road each day.
McDonald’s respite
In a previous life I used McDonald’s as rest stops. Even if I was not traveling on an Interstate highway, their restrooms are generally pretty clean and the staff is generally friendly. Their corporate policing of properties, even franchise properties, is their reputation. They lose business if it is not up-to-snuff.
Today, after the news of Janice’s passing, I was elated that we had taken the opportunity to go and visit. We had not done so previously. I am saddened by the fact that we had not done so previously. It would have been easier pre-Parkinson’s. Life, employment and other unimportant things got in the way, so, we did not visit until last October.
I am gladdened by the memories. An animated lunch conversation and a visit to see Justin’s blow up decorations for Halloween were the highlights of that day.
Booowooohaha – scary all hallo’s eve – not so scary with the sun out.
Our house is sad today. Janice is with her mom and dad. There is a gap in the family that cannot be filled yet. It will take time and love to fill that gap.
When my brother passed away a couple months ago, I felt this same gap. I have been calling my sister more. There is only the two of us left from our original family.
Since Cheryl’s mother passed away two years ago her family started random gatherings of the siblings for birthday celebrations. The baby is now sixty years old. Cheryl has taken upon her mother’s activity of sending a card to children, grand children, cousins, nieces and nephews for birthdays and anniversaries or simply to say congratulations. She is a valuable resource as to what to celebrate. This is a good thing that they have started before any of them has passed away due to illness. Now the first one has died. Even though covid makes it dangerous for some to gather, perhaps it is time wear our masks and celebrate Jan’s life.
I am glad that I knew her. She was a wonderful loving mother to Eric, Kevin and Justin. A loving wife and caregiver to Bill her husband. A generous and loving sister to Cheryl, Nancy, Debbie, Dan and Ken. She was a loving and generous grandmother to Brandon and Olivia.
As I started this post I mis-typed weariness as wariness and realized that although this Covid-19 business makes us both weary, wary is also an apt feeling. The news about it has become another weather report but the constant update of numbers and deaths and governmental tug-of-war has made us wary of going out to do necessary errands.
I have become adept at ordering things online and as carryout from local restaurants. All the while wondering if something that can only be viewed with an electron microscope is lurking on a surface waiting to kill me.
In a way Dealing with Parkinson’s disease has been good training for Covid-stay-at-home. We are weary of it all. Everyone has to die of something. My father years ago expressed the thought that he was not too worried about dying but he was interested in if it would hurt. The doctor replied, we have good stuff for that.
The nightly covid-19 weather report corrupts my interest in the evening news programs.
Cheryl’s sister is laying face down in a ICU bed in a hospital in Florida. The prone position is used to increase oxygenation in the lungs. It is better when laying face down.
The ventilator tube has been reintroduced into her trachea to help her breath for the second time in as many weeks. She is deathly ill with covid-19 and the extra complications of Parkinson’s disease, myethenia gravis and diabetes. The machine is breathing for her according to my brother-in-law and the machine is giving her pure oxygen. It makes us wary of answering the phone.
Over the past 10-15 days Jan was in the hospital, out of the hospital, in a different hospital, back in the first hospital, tested positive for covid, a wearying experience for her I have no doubt. A wearying experience for her husband who is in the position of caring for their autistic son on his own and providing comfort to a boy who is not sure of the world around him. And unable to visit, care for, provide comfort to his very ill wife. She is sedated. The rest of the family, three sisters and two brothers, wait. Wary of answering the phone. Wishing we could be in Florida. Staffing shifts in the hospital. Sitting with Jan and Bill.
Somehow prayer only seems to enhance the stress. But it is all the family has.
A good news thing is no other member of the Florida bunch has covid-19. Only Jan picked it up from somewhere.
As soon as one feels down about their own situation and how miserable it is, boom-chukka-lucka, someone with a worse situation appears to humble one’s outlook.
Parkinson’s disease can make you crazy but often other folks get deathly ill.
Tea or no tea today? A morning cup of tea after the bowl of cereal breakfast and taking time to work on the puzzles in the newspaper was/is her favorite morning wake up. This is changing. It is more random less routine.
Get ready for church on the wrong day – this past Sunday after three tries, we made it. We did not get up at 2AM to get ready for church at 10AM. On Saturday we visited our son and his family. That activity left Cheryl exhausted and ready to sleep when we arrived home. Perhaps the moral of the story is a good nights rest and my assurances that she had plenty of time to take her pills rest and take the 10AM dose slightly early allowed sleep without anxiety?
Blank stares at the computer screen… The screen that used to be second nature is now often befuddling.
Old messages on the cellphone – seem confusing because dates are confused and not meaningful. A year ago I had the brilliant idea to get Cheryl a smart phone so that her brothers and sisters who seemed to communicate often by group chat could read their messages directly. She has long been a email communicator. Initially she adapted well. As time went on I realized that not only was she reading old emails as though she had just received them but she was doing the same with old text messages. Sometimes emergency responses were sent back to a five month old text.
Her sisters have adopted the use of several emoji hieroglyphics that are meaningless to Cheryl. This particular one — 🤷♀️ — a little girl with her hands up at her shoulders which could be used for “dunno” or “whatever” or a woman shrugging her shoulders in frustration is particularly meaningless to Cheryl while it is particularly meaningful to her sister.
Cute little whatever girl.
I think of the new smart phone now as “almost a good idea” and recognize that I made a mistake. Her sister has either wisely or unconsciously returned to the practice of sending the messages on the chat about another sister in Florida who is very ill with the Covid-19 virus to me. I interpret those to Cheryl. Cheryl seems comfortable with that. I leave out all the emoji icons that seem to clutter up the chat line and frankly mean little to me either.
Poor sleep patterns produce a late morning and long naps. It is a situation that feeds on itself. Sleeping late produces poor sleep at night which causes napping which produces poor sleep at night and on.
And the morning question, Where are we? worries me the most. When Cheryl describes this it is an out of body experience. She knows that the furniture and decorations are much like hers but cannot make the connection that she is home. It too seems to occur after poor sleep that she has awakened early from. In the morning twilight her brain is confused. Two days age she asked, Can you tell me were we are? (Tears came to my eyes before I could stop it.)
She forgets the why or who of things on the bulletin board. Below is information about our grandson showing an amazing growth spurt over 24 months. Seven months or so ago when this was posted on the bulletin board we talked about it extensively. We talked with the parents, with the neighbors, with friends. On this day seven months later she asked, what is this for?
Forgetfulness is more prevalent than merely that which accompanies old age. It explains many new behaviors. The information about our grandson above is just one of them.
Parkinson’s is physically annoying and then you forget about it.
Adjunct_Wizard 