In the midst of a pandemic, life and death which is a part of life, go on around us. Wally was 90 years old. He stayed at Wellsprings at Evergreen, a retirement community in Cincinnati, Ohio.
I didn’t know Wallace Comer very well in life. On the few occasions when I had met him, he was cheerful about life and his family around him. His niece married my son and it is through connected family that I met him.
On Monday, October 12th, my son sent a text message to me. “Melissa’s Uncle Wally passed away over the weekend. He pretty much decided he was done a couple weeks back and dropped off pretty quick.” … In another text message; “… He seemed like a guy who just wanted to quietly check out.” So our family is sad today. It is easy to let go when you are very old. My own father did just that at very nearly the same age as Wally. If you knew Wally in life, remember him. He is still alive to you.
Cincinnati – Wallace James “Wally” Comer age 90. Born May 21, 1930. Passed away in the early morning hours October 11, 2020 at Evergreen Wellsprings senior Facility. Survived by son, Josh Comer, Pittsburgh PA. Sister Mary Listerman, Erie PA. and many nieces, nephews, and good friends. Predeceased by sister Patricia Schneider and brother James Comer. Wally graduated from Elder HS in 1948. He served in Korea as First Lieutenant US Air Force 1952-1954. Graduated from the University of Cincinnati with a B.S. Degree. Extensive career sales/marketing and counseling. Worked for Proctor and Gamble, Quaker Oats, Foote Cone & Belding, and Hamilton County Rehabilitation Services. In retirement he enjoyed golfing, watching the Reds and visiting friends. Visitation will be Wednesday, October 14th from 10:00 AM until time of Funeral Service at 11:00 AM both at Mihovk-Rosenacker Funeral Home, 10211 Plainfield Rd. Facemasks and social distancing are required. www.mrfh.com
Wally, I did not know you well but rest in peace my friend.
This meditation has guided me through these last few months since I read it. I have edited it a bit for me personally. I try to read it and hold it in my heart each day. In an email from him, James Clear makes points about success, happiness, health, wealth and peace of mind. I try to use mindfulness as a way to reduce my own anxiety and understand what it is that any higher power may have in store for Cheryl and me.
Wealth is the purchases you don’t make.
Spiritual wealth is tied in no fashion to material wealth. Over time Parkinson’s disease has robbed Cheryl of her abilities to control and reconcile our check book. Through our entire fifty years of marriage she has done this family task. My interest was usually – how are we doing this month dear? Are we winning or losing? Her response was often – we are winning but it will be a little tight this month. She is frugal. Material wealth is not in our cards. Neither of us are risk takers. But over time if it is not important for one to have the latest, newest, nicest shiny new object enough material wealth accumulates to see one through to the end.
Spiritual wealth is more illusory. Spiritual wealth requires work. How can I do my best job to acquire more spiritual wealth, more inner peace? What sort of spiritual purchases can I avoid to gain or regain wealth spiritually?
Routine in life is calming to me. Routine provides a place for one to put your thoughts and displace the anxiety that arises from new PD behaviors. But lately, my routine is not my routine. New things seem to get added each week. Like laundry, which I never did in our previously un-parkinsons life. I have adapted to this addition. Friday is now laundry day for clothes. Monday is laundry day for the sheets. Wednesday was for towels and the like but I left this up to Cheryl because every now and again she would decide it was time to clean and part of that was to wash the towels. Over time with her parkie mind it became random. I suppose this is a new routine to be added. Service given freely to others, in my case, my wife, who needs my help provides an opportunity to gain spiritual wealth. Not purchasing the anger that arises from the constant tug of war between my way v. the previous (her) way can help with spiritual wealth. Remaining mindful of the mental fragility that comes with some PD patients may add to stress in a caregiver. Acknowledging that fragility, recognizing the tug of war, and then letting any stress or anger with the disease go often for me gives way to a bit of grief for what is to come and a calmness (acceptance?) of what is to be. This is a sort of meditation.
I think we all long for an easy road regardless of whether we are giving care to someone with a chronic illness or not. I know I do. I long for the pre-parkinson banter. The snide comments and the snappy comebacks would make us laugh. We spent fifty years becoming comfortable with that banter and learning how to push each others button and how to not do so.
From Sunday’s Gospel–MT 21:28-32; ‘What is your opinion? A man had two sons. He went and said to the first, “My boy, go and work in the vineyard today.” He answered, “I will not go,” but afterwards thought better of it and went. The man then went and said the same thing to the second who answered, “Certainly, sir,” but he did not go. Which of the two did the father’s will?’ They said, ‘The first.’ … after this Matthew wanders off into the weeds talking about tax collectors and prostitutes.
This is an odd gospel reading. The first kid responds as a teenager might — nope, not today pops. I’m hangin’ with the guys. Then he changes his mind. He does not apologize. He just goes. The second kid is a liar. Families are complicated. The first child is a reluctant helper. The second child is an asshat. I do not know where Matthew is going with this story and he does not tell us. He goes off into a ditch about the less desirable elements of any societal group.
Greater spiritual wealth is gained by doing for others without grumpiness about it. Lesser spiritual wealth is achieved by doing only. Spiritual wealth is gained in both cases. It is human to grump occasionally. Don’t beat yourself up about it but do not be a liar. Liars are below prostitutes in the social order and they are asshats.
Happiness is the objects you don’t desire.
I desire very little in life. It is a low bar but as long as the money and I run out at about the same time, I am good with that.
Health is the injuries you don’t sustain.
Exercise and eating your veggies add up to relatively good health. Stretching when you get “on in years” is a must. If it hurts, stop! Physical therapists will tell you that over and over. All good advice.
Find some sort of exercise that you can enjoy and stick with it. If you want to body build do it. If you are a runner, do it. If you are a dog walker, do it. If you are a stroller, do it. If you can do yoga and like it, do it.
Take care of your mental health. If you spend a great portion of your day caring for another or others, take time for yourself occasionally. When your grumpiness takes control it is time to go out and find balance.
Do not hurry your relaxation.
Peace of mind is the arguments you don’t engage.
Taking extra meds to fight side effects brought on by the Parkinson’s meds. It is an argument that is unwinnable even without the loopy logic of PD. Stay away from there.
Cheryl first; me second. It use to bug me a bit that she would schedule my time without warning after she quit driving. I became a built in Uber driver. I actually referred to myself as the driver — as in — Do you want to join us for dinner? My reply — Don’t ask me I’m just the driver.
Do not do that to yourself as a caregiver. You are in this too.
Someone else is using my pads. Virginia is making some sandwiches. She is taking care of the baby left here. … it seems that more and more Cheryl is slipping into her own reality. Trying to correct her thinking about what is real and what is delusion merely creates heartache and anxiety.
Avoid the bad to protect the good. — Stay off Facebook and avoid political crapola in your life.
Success is largely the failures you avoid.
Failure can be turned into success if one takes the time to learn from that failure. Life is rarely a straight line.
Thoughtfulness, meditation and mindfulness help to bring peace of mind. These are all different names for prayer.
In a previous story I reported that THE CHAIR did not come as predicted on the tenth of September. I have since learned of other fat fingered fumbles one encounters when there is human involvement.
Between the attempted delivery of the incorrect chair on Thursday September 10th and my third attempt at acquiring information about delivery of the correct chair September 20th there was a furniture buyers convention at an undisclosed location. Woo Hoo! Party time with some work. I get it. I have been there. But there is a internal structure flaw that shows within Furniture Fair’s receiving and ordering system.
Mistakes happen when humans are involved. The incoming inspection department, if there is one, missed the fact that the Prestige Power Recliner was not powered. That is an easy check to make because the buttons to operate it are on the side. The manual chair has nothing at all. The incoming inspection merely requires looking two places; one look at the order sheet to read “Power” and one look to the right side of the chair itself. Alas, that did not happen.
Since incoming inspection was flawed and no report was made to the buyer it has been eleven days before manufacturing in Mississippi knew of their mistake. Longer in fact because an email to their customer service website (Southern Motion) revealed they had no knowledge of the mistake.
The customer – me – was not disappointed with the furniture store until the customer discovered through conversation the compounded error. In fact I was not disappointed with the manufacturer. After all shit happens. One just fixes it and moves on. But there was no reaction from the receiving department. Alas. And there was no reaction by the buyer group because they were away discovering new things to buy.
On another topic when I called to talk to someone at the Furniture Fair organization to ask about what was next I was always referred to the original salesman. That always seemed odd to me. I was pretty sure that other than the original sale he was no longer directly involved. At the store itself there was a clerical staff backing these sale guys up. I was pretty sure that when he entered our order it was merely going to the purchasing staff. He would not have been involved in the ordering, shipping, receiving and delivering process. At the outset he explained that the typical order to delivery time was 8 – 9 weeks and the pandemic had slowed that a bit. A very honest synopsis of the eventual process. When he was unavailable I was able to speak to the store manager. Nice gentlemen all, but why were they involved in my dilemma? Their whole role seemed to be to look in the computer and tell me nothing was happening. The girl who answered the phone line could have told me that nothing was happening.
Customer perception is one of inability to react to errors. The back office must be chaotic at best.
The day that we had these conversations, generally speaking, Cheryl was having a pretty good day. When she is in this “pretty good day” mode she remembers many of the funny little conversations we have had in the middle of the night if I ask about them. It is as though she can step away and talk about what she was seeing or thought she was seeing . Her cognizant brain is able to view her in-cognizant brain’s thoughts and interpret them as not quite right or even odd.
We were walking on our 1-ish mile loop
We were walking on our favorite one mile (not quite but close) loop near Mill Creek. She tells me – you know when I get up at night and some times I go into that closet by the bathroom where my pads are and get a new one because it seems like I leaked a little? I have pads in there. Do you know where I mean? Me – yes. The closet by the bath tub you mean? (I am not sure where this is going.) Her – yes. That’s the one. Well, I saw a lot of clothes in there that looked like mine. How did those get there? I don’t remember putting those in there but I’m pretty sure they are mine. At least they look like clothes that I have. (Insert a puzzled loving face here. Most emojis do not work.)
… Patience, wisdom or empathy — which one of those is necessary now? I just go with the flow most times because I am unsure if she is standing outside her thoughts or reliving them. I said to her that we put our clothes in that closet when we moved into our condo. And when I do the laundry I hang your shirts and pants in there if they need hanging so maybe I put them in there when you were not looking.
She responded with – I have no memory of moving. (Oh, poop.) She goes on to tell me – I remember looking at the condo but I really don’t have much memory of the day we moved. She phrased that in a fashion that indicated to me that she knew we had moved to a smaller place about 4 years ago but was simply fuzzy about the details. Four years ago she did not seem to be struggling mentally. I could have not noticed at that time because her mother was still alive and she was making a daily trip to Bridgeway Pointe where her mom was staying. Our life was busier then. Her main complaint was her knees which in my mind was the main reason we moved. Our condo is a flat one floor two bed-roomed affair with a small den that I have taken over for my man-space. There are no steps in or out.
She continued with – If you are looking for my clothes there’s some in there. At least they look like my clothes. Me – yes, I think they are. There are some in a tub too. Those are your winter things that are saved away for the season. Her – yes there are. Now at this point I am thinking she is coming to believe that her clothes are hanging in the closet. But then she says – I am not sure where your clothes are. Me – that’s okay I will look for them when we get home. They might be in my armoire. I will look. She seemed satisfied with that and we walked on talking about other things that were sky and weather related.
Early one morning the clock in our bedroom which is electronic and looks like the image above did not alarm at 7AM as it usually does. I woke up anyway at about a quarter after 7 and went to get Cheryl’s meds for 7 that day. I helped her up to the bathroom and after she took her meds and was heading back to bed for a bit she said – I don’t understand how do you know what clock to use. Me – I use that one to get up for your seven o’clock meds. It’s a little off. (I was thinking of the wind-up in the living area which bongs out the hour all day long.) Her – is it eastern time? Me – yes it is.
It was my mistake thinking she was comparing the clock’s displayed time to the gongs from the living room clock. No such thing. What she was really telling me is that this clock is confusing to her. About now it displayed 7:22AM or so because the alarm did not sound at 7AM. She did not recognize that the first dose of meds were a little late but she did recognize that the time was wrong. She could not make that connection.
Admittedly when I bought the clock I thought it would help her understand the time of day. In the picture above it displays “Morning”. it also says things like early morning, evening, afternoon, late afternoon and so on. I turned these messages off because at first she would say – what does that mean? Early morning? It is dark out. It seemed to be too much information so I turned it off. I said to her – yes it is eastern time. The whole daylight savings thing is confusing to her and an unimportant imposition by the deep state agency called NOAA. (smiley face.) It occurs to me that I could “spring ahead” or “fall back” at 2AM. I am often up about then for a potty break about then. I do not think the time police get up until about 6AM.
For the rest of this morning she was tired. And the same throughout the day. It is as though the whole discussion about time wore her out somehow.
Who is eating with us? Sometimes phrased as – Is (name) here too to eat? Or similar. Is everyone eating? — she will ask when I get her out of her office to eat the dinner I have prepared.
While she is working on her birthday card list or Christmas card list the people that she is thinking about become real to her. Occasionally she will talk to them. She will ask questions and talk about what she is doing.
With the pandemic pandemonium we have had many Zoom meetings – She will ask; Where will they all sit? Do we need more chairs?
Carpe diem – I attempted sourdough bread today … a bust on the first experiment. I guess I was hoping the starter would react like real yeast in a jar. Nope!
Maybe in a week after I can find a better name for the starter other than “Larry the Loser”. Maybe “Jack it Up” or “Spring Forward.” (another smiley face)
Cheryl wrote the following email to a friend to explain the history and background of whoopadiddee:
Last year was the first time that I and members of my extended family decided to participate in the fund raising for the Sunflower REV IT UP festivities. I had been attending the yearly symposiums for at least 10 years. I thoroughly enjoy the symposiums… I sincerely hope that you bring those back when the COVID-19 virus goes away. I always learn something new regarding Parkinson’s Disease… and I always meet many kind and generous people. Anyway, last year, my sister, Janice, was suffering more than usual in her battle with PD. So her youngest son decided to bring her to Cincinnati so that she could take advantage of all the activities and, perhaps learn some things that would help her. Janice and her family lived near Tampa, FL, so this was not an easy trip for her. But Jan stayed with our other sister, Nancy, and we all took turns helping with transportation, food, etc. When it was time for the symposium, some of the younger people in our family (we have a real large family and extended family — and all but a few of us live in the Greater Cincinnati area). Well, suddenly many of the younger family members… especially teenagers and young adults… disappeared for a short time. Now I’m going to pause here for a minute to give you some additional data. A few weeks before the symposium, I received a couple of phone calls from my daughter, Anna. Anna is a high school teacher and she is very talented. Another part of this story is the fact that my beloved Mother died in April 2018. So behind the scenes, Anna was asking all kinds of questions and being very secretive. For instance, Anna wanted to verify that her Grandma’s favorite was bright red (it was). Anna asked a lot of questions — she has always been that way. Finally, I could stand it no longer and I asked Anna what she was up to.My Mom always liked to take pictures, especially of her grandchildren and great-grandchildren. We all knew this. We celebrated Mom’s birthday every year, and we rented a hall in the St. Bernard Municipal Building for this celebration. Our Dad died of lung cancer when he was only 54 years old, but many of our cousins, aunts and uncles from Dad’s side of the family as well as from Mom’s side of the family came to Mom’s party every year. So we had a big celebration for Mom’s birthday every year. We usually had over 100 guests at that party. And when she was still feeling pretty well, she would go around the hall taking photos of her family. At the time of her death, Mom had 6 children, 20 grandchildren, 30 great-grandchildren, and several great-great-grandchildren. Of course, there have been several more babies born in the last few years — I’ve lost count! Now, back to the t-shirts. Anna took the information that I gave her and went to a t-shirt shop and had those t-shirts made. Torbeck was Dad’s last name — so that explains the name on the back of the shirt. Now for the Whoopadiddee! As any good photographer knows, you need to get everybody to smile for the photo. So when my Mom was ready to take a photo, she would yell (or she would get someone with a loud voice to yell) “ONE… TWO… THREE… and we would all yell Whoopadiddee! And it worked every time, because it’s hard to say Whoopadiddee! and keep a straight face. So there you have it!! I think it’s a great story and, best of all, it’s true. I loved my Mother and I miss her every day. As a side note, last year, when we were distributing those t-shirts, a channel-5 reporter, Richard Chiles, was walking around Yeatman’s Cove with his photographer, looking for a story. As he came upon our group, he asked us about the t-shirts, and we explained. He thought it was a nice story, and it became part of his report that day.So you just never know what might happen when you begin to tell family stories… There you are, Allison. You might have a use for our story some day. It’s all true.
In her own words, this is Cheryl’s story of the whoopadiddee. I often tease her about writing an epistle instead of an email but that is her style.
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.
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.
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.
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.
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.
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.