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.
It is the Fall of the year. The time to transition to walking from bike riding. Yesterday I started to do just that. It is cloudy and damp and hot for October but I enjoy walking through several neighborhoods near our home. I will still ride. I bought some kit to hopefully extend my riding into late fall and winter months but today I walked.
In the picture above, someone who lives here enjoys decorating for Halloween. I think I will return in December to see if they have the same enthusiasm for Christmas.
Wildlife abounds
Older folks walk looking down for trip hazards. At least I do. This little guy was getting ready to cross the walk I was on when I happened upon it. As you can see this tortoise has decorated itself for Autumn and blends easily with the oak leaves nearby. I almost missed it but it was startled by my passing and turned to go the other way.
And more Halloween decorations.
Bush Jack-o-lantern
Neighborhood walking is entertaining. It appears that I walk about a third of the distance that I ride. Hmm.
The path and stats
Keep moving all you caregivers! Find something that appeals to you and keep it up. Your health and the health of the one you care for depends upon your own good health.
This is not my writing but Edie captured my thoughts with this post on Facebook. She and her husband are in about the same place as Cheryl and I with Parkinson’s Disease.
“Accepting what is… Choices and Avoiding The Sting of Defeat…”
There isn’t a day that I don’t Experience either a “slap myself on the forehead” moment, err on the side of caution, spout off an opinion or best of all, make my fella laugh or smile.
Some days are just rough. They’re tough!
Others? Well…there are good times; a smile across the room, a look of total understanding and the knowledge of who we are currently (and who we once were together. We’re still one.
This is a tough week for me personally. Our 45th anniversary is Saturday, Oct.24th. Tommy has been clear headed lately with some delusions.
A while back he mentioned several times that he wanted things to be “like they used to be” with our family. Life evolves and nothing remains the same.
As we all know life is not static. We’re a close family, but the grands have grown up, moved away and their parents are busy too. We used to have UFC Fight Nights, BIG holiday gatherings etc., and even no reason to get together functions. We gathered often and now? Not as much. Parkinson’s causes loneliness.
PD has changed all of us in various ways. We’re each caught in the midst of love, losses and our own feelings and responsibilities in life aside from Parkinson’s and Dementia. It’s inevitable. It happens.
We’re all worse for the wear because it’s a ruthless disease. But making, (hopefully the right) choices, accepting the realities of PD and Dementia, and preparing proactively for change has helped me to avoid the sting I mentioned at the beginning of this post.
Our CNAs have given me the “breathers” that I have long needed to separate myself from too much of anything that could bog me down when I’ve been up to my ears In either a struggle with Tommy, a medical issue, the VA or my own emotions. As caregivers we have lists of to do’s a mile long that threaten to swamp us.
While I’ve been planning our family gathering for our immediate family members, I’ve pulled out photos of us throughout the years, and of course…I cried.
I cried because I love Tommy passionately. I miss him, but I accept him as he is too. I do love him even more today than yesterday. Some days we get on each other’s last nerve too!!!
I cried because as much as I have tried to keep PD and Dementia out of our lives, it has, like a bee being threatened, taken a bite out of us and stings like crazy!
When I finally came to terms with accepting the transition from normal to cognitive issues and delusions, I had another epiphany. I came across a photo of one of the Santorini stones I paint. Painted in the body of the bee are the words, “Let It Bee.” Lord knows, I’m trying!
Moving forward. My menu for Saturday consist of Tommy’s favorites and the carrot cake is my favorite. The wine, Moscato-Asti is our favorite.
I pre ordered (from local businesses) everything so I wouldn’t have to prep or cook. I’ll decorate the cake with a topper that says “We Still Do” and edible FALL leaves. I’m excited and a little off kilter too.
Having the family near will be centering for us both.
The menu is planned and is “enough”. It will be truly complete when our group comes together with gratitude around the Kynard House table.
I wish you all could join us! I’ll post pics later.
Edie and Tommy
We too celebrated a milestone anniversary this year. We have been married 50 years. Sometimes I am disappointed that our retirement activity is centered around Parkinson’s Disease and other days I have come to understand that it may be the reason for being.
Our children organized a wonderful celebration. For that I am very thankful.
50 year cake
Anna also put together this collection of snippets of various sources.
We were young and skinny then.
… 50 years later here we are. Happy 45th Edie and Tom – May the sun always be shining on you and your family.
Someone posted this quote from Sir Hopkins on Facebook and it passed through my news feed today. There is a Beatles song — Eleanor Rigby — that popped into my head. … ?? …
I have lots of things to ponder. I told Alexa to play the Beatles. Music from a time when Cheryl and I were young. Their music is soothing today. Alexa selected “Let it be” for the first one to play.
Black Bird … calling in the night.
This past week or so we have added two new drug therapies to Cheryl’s meds. They are working and they are not working. In a previous post, I described quetiapine for sleep. It seems to help. Melatonin helps with falling asleep. Seraquel seems to help with remaining so. Although we have had some odd episodes in the bathroom at night, it seems that she is actually asleep during these. At least, she has no memory of these in the morning.
Good Day, Sunshine!
Morning conversation often starts with her inquiring how I slept. We talk a bit about anyone that we may know or a family name that shows in the obits. And the past few mornings she has gotten up before me and had her bowl of cereal for breakfast. Sometimes she asks about overnight. Sometimes I tell her gently in my effort to determine if she has memories of anything overnight. I think the quetiapine is working. She will get up for bathroom trips but she comes back to bed. I know. I get up and go to the other bathroom. I think we are on the same schedule. (smiley face emoji here)
Yellow Submarine — similar shape to Ondansetron
Ondansetron was prescribed for Cheryl’s repeated feeling of nausea after she takes her medicine. She has been taking it for a long time and apparently her stomach has become intolerant of the meds. Zofran was originally developed for those dealing with chemotherapy. It seems to be working well. Although she still lays down in the evening after taking meds at seven, she does not complain of nausea, she complains of fatigue. And that only for a short(er) period of time.
As a caregiver, I often find myself focused on observing Cheryl’s behavior and asking her questions about how she is feeling in that very moment. From her point of view, I am probably exhausting. From my point of view, I cannot help it. I love her so much and it tears at my heart to see how this crazy despicable disease has changed her life, mind, cognition and even her personality. Nevertheless I have to keep reminding myself to take time for myself whether that is exercise – walking or riding – or reading or journaling (now). The quote from Anthony Hopkins struck a cord with me. Another way to say it is, “Stop and smell the roses.” One cannot put too much emphasis on taking time for oneself. Balance between giving care and taking care is a delicate thing to achieve.
Alexa just played “Help” by the Beatles
Ask for help before Parkinson’s sucks all the air out of the room and the day is lost. … Oh bla dee oh bla dah … life goes on! [and Eleanor Rigby is playing again]
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.
Wallace Comer
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.
a foggy day
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.
Which clock?
our bedroom clock
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.
Everyday comments
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.
Captain of Team SMILE
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.
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.
Adjunct_Wizard 