Three O’clock in the Morning is a novel by Gainrico Carofiglio. A story of a teenager who makes a trip to France with his estranged mathematician father to be cured of his epilepsy and ends up learning about his father in an intimate way during two days without sleep.
“Who were epileptics?” I asked, realizing that this was the first time I’d managed to say the word.
‘Just to give a few examples: Aristotle, Pascal, Edgar Allan Poe, Dostoevsky, Handel, Julius Caesar, Flaubert, Maupassant, Berlioz, Newton, Moliére, Tolstoy, Leonardo da Vinci, Beethoven, Michelangelo, Socrates, Van Gogh.”
I processed this information.
It’s strange how the same thing, exactly the same thing, can make us feel so different depending on how we see it, the mental context in which we put it.
Ever since I’d been diagnosed with it, epilepsy had been, as far as I was concerned, a stigma, a sign of inferiority, a disgraceful blemish that had to be hidden. After Gastaut’s words, after hearing that list of geniuses who had all apparently had a problem similar to mine, my inner world now turned a hundred and eighty degrees, as if moving from darkness to light. I had felt like a reject, and, all at once, for the very same material reason, I felt almost one of the chosen, a member of a special category of superior beings.
“Please sign your drawing,” Gastaut said, in an almost formal tone. I signed it, and it seemed natural to me, as if I were signing a contract with my new life, which was starting at that moment.
He stood up, shook hands with us, repeated that he would see us again in three years and walked us to the door.
— from the novel.
I found myself reading it at three o’clock Monday morning. At 2:30 am Cheryl was awake and longer able to sleep.
She ate a doughnut and some cereal. She drank some orange juice. I read my book for a bit. How appropriate, I thought. We did the Wordle. It was four in the morning. We went back to bed at four.
I was awakened by the EXTREMELY LOUD AND ANNOYING alarm clock at seven. I fetched her pills. She took them and we returned to bed.
At 7:30 am she arose to get dressed for school. I got up and finished the story. Not a crime novel which is my usual genre. I did not remember that I had finished the Wordle.
She wants to do it herself. We had a tough for me conversation this morning about issues we trip over as travel the annoying twisty road of Parkinson. It started out as, you know I can still do stuff.
This was a response to me speculating about learning to make my own piecrust instead of buying a commercial piecrust. I will take the path of least resistance every time I can. There are enough things to staff, organize and worry about. If someone has already made the piecrust, I am good with that.
I buy salad in a bag too. Dump and go. Chop a tomato and it is salad. Dressing is in the fridge.
She remarked that she could make a pie and that she knew how to make piecrust. Naturally I forgot about what I have been attempting to practice on a daily basis. I started to enumerate the negatives. I caught myself before I got too far into the ditch along side this partially paved macadam thoroughfare.
It is Lenten season. Instead of chasing some carryout fish fry from our parish we had the makings of tuna casserole. An old time favorite from the Dinner for Two Cookbook by Betty Crocker (You can still find one if you poke around.) Remember Betty Crocker? She is my go to for a lot of things. That seemed like an easy thing and she likes it. I said why don’t you make the tuna casserole and we can have the leftover pie for dessert.
We attended a discussion in the afternoon about newer drugs used to treat Parkinson’s disease and when they are used and how they worked. When we returned I attended to the laundry and then busied myself with work for my job at our local community college where I teach part time.
She announced she was going to start on the tuna casserole. It was three pm. I spent the next hour listening and worrying and occasionally sneaking a peek into the kitchen twenty feet away. After a few misfires on her part she got started with minor aid from me. She put all the ingredients into a Corning ware bowl and mixed it. She used to know how to start the oven but that knowledge and skill has been lost to Parkinson. I told her which buttons to push and it clicked on.
I went back to work on my project but gave it up for a bit when the oven played its happy tune to announce it was up to temperature and waiting. I went in for the oven placement of the casserole. She put it in but I worried while watching. (Maybe I am a worry wart.)
I suppose there is a good mechanical engineering reason for oven doors to open as they do. I have not seen one built so that door opens any other way but down. A standard range winds up with the door about a foot off the floor so that the person reaches down into the oven from three feet away. It looks to me like a disaster waiting to occur. I hovered nearby as she put the casserole into the oven and then put on oven mits to get something from the fridge.
We ate about an hour ahead of when we usually eat but time and calendar and sunrise and sunset seem to have less meaning for her. It is time for us to start eating dinner at four pm like the rest of the old folks.
Some days things just seem to go better with pie. If you want to lift your spirits a bit, make a pie. Whatever kind of pie you want, just make one. You can buy a pie of course, and that will settle the need for a sugary delight, but if you want to ignore the world around you for a while, make your own pie. It might turn out ugly but it is yours and it will taste scrumptious.
I have been down on myself for a few days. I think I worry for the folks in Ukraine. I do not know anyone in Ukraine but it is kind of stinky that a short guy with big army and navy can just drive over the fence and poop on the short guy without a big army and a navy with only one boat. That situation just sucks.
This is an ongoing conversation in our house. Cheryl struggles enough with day to day things. She fears for those mothers and children showing up at the Polish border behind the reporters that flew there in order to record the history of the short guy beating up the other short guy. From the news reports it looks as though the partisans are taking root in Ukraine and in Russia they are taking a nap. The world markets are yinging and yanging around and today I paid $4.999 a gallon for 12 or so gallons of gas to fill up my car. It was the first time I have spent more than $50 to fill up a car. That situation just sucks.
Time to make pie and eat it.
This particular recipe guidance is a favorite one. As you can see specific types of apples and the resulting pie has been noted by Cheryl. When she drug me down the cooking road a couple years ago I picked up what we call the “Big Green Cookbook”, so called because it is about two inches thick and has a green cover, to learn how to do pies. This book reads much like my grandmother’s cookbook that is a collection of church ladies’ recipes entitled “Culinary Cullings” from a farming community in Rich Hill, Missouri.
“6 apples” but no reference to general size. “1/2 to 2/3 cup”is the same as writing some but not too much. It makes me smile to read these measurements. (1 recipe plain pastry — but no hint about where to find that.) I have modified and added to the instructions myself. Since it is unspecified I use dark brown sugar with my teaspoon of cinnamon. I also add a couple tablespoons of tapioca. I got this last one from my mother who learned how to make pie from my grandmother. I think I got my bravery to adjust ingredients and try new spices from Mom. She was pretty damn good cook and liked to have a gin and tonic while doing it. Perhaps I will try a gin and tonic with my next pie.
So today is PIE day. A little early actually because the math enabled folks celebrate 3/14 as pi day. But I digress.
For a short time this afternoon I have bumped Cheryl off of her worries and anxiety about world idiots.
After the pie got to the condition shown above I went of to find the big round Tupperware pie saver we have owned since about 1975. Gone. I was worried that Cheryl had put it in a special place so that it would not get messed with by the little girls that live in her head. I put out a text query to the kids and found out I had left it at our son’s house. I probably took a pie there.
Recently I read a book entitled – Dementia Reimagined by Tia Powell MD. It was a disappointment to me personally because I believe that I judged this book by its title. I was hoping for some sort of expert thoughts on how I can deal better with my personable anxiety, emotion and smoldering anger with Cheryl’s disease of Parkinson and her accompanying dementia. I was hoping for; when this comes up, do this. Life is not that easy but my engineer training wants to make it so.
Dr. Powell’s book is a good argument for changing the way government programs, insurance companies and the like perceive and fund help for those with dementia. I know that the funding albeit private or public is screwed up. A few months ago I met with a lawyer to discuss end of life issues especially since I felt certain that Cheryl’s chronic illness would eventually bear a heavy toll on our family finances. He asked why I still lived in Ohio.
All states are different.
No Help There
That does not really help me. These tips on dementia (copied from a website somewhere) do seem to be useful:
Always approach from the front. – or do that as much as you can. When I first read this it was not meaningful to me but I have noticed that Cheryl startles easily. Her startle reflex shows itself at seemingly random moments. If we are traveling somewhere in our car, she will react to other drivers with jerky motions or a surprised little noise from her lips. I used to point that out to her and she reacted with both embarrassment and a little anger. I have learned to ignore these little things but it is hard for me to do.
She no longer drives a car having given up her license several years ago.
I have noticed that she will jump if approach her while working on something in her office which causes her to face away from the doorway so that she does not see me coming. I am not moving quietly when this has occurred but I may be mistaken about that idea. I may be more stealthy than I think myself to be. We are both older. Our hearing may not be as acute as in our youth.
Watch your body language and tone in addition to the words you use. – frustration or surprise at the immediate situation may easily be interpreted as anger. This is the hardest concept for me personally to deal with. I am concerned for Cheryl’s safety and I also hate to clean up messes. I apologize a lot and she apologizes a lot for making a mess even though I tell her that no apology is necessary.
I recognize that I am perceived as angry by her when one of these situations occurred. The aweshit reflex is strong in students and practitioners of engineering. So far I have been able to tone it down to oh-poop but it is a work in process with some small progress. I keep telling myself it is anger with this disease and what it has taken from her. I cannot tell you if there is truth to that statement but I keep repeating it to myself quietly at night when a combination of sun-downers and dreamy illusions and hallucinations creep into her perception of the world.
Sometimes I merely lose it, however. I can be mister cranky pants in the middle of the night.
Smile and wait until they acknowledge your presence before touching them. – Hugs are always welcome but Parkinson’s patients may be unsteady, so be prepared to steady her and accept some weight change. Hugs are always smoother from the front than from the rear. (see startles above)
Regardless of acknowledgment touching, hand holding, hugging are preferable to distance. The combination of Parkinson’s and dementia are frustrating, depressing and scary. Cheryl has expressed this to me often in moments of perfect lucidity. Those moments are still there. Savor them like fine wine or life as it used to be.
Validate their point when they are upset even if they are wrong. – and be aware that it is not important to correct anyone’s perception of things. Never start a response with; you are wrong, dear. … and continuing with the rest of it.
Let’s face the fact that “you are wrong” is a manifestly stupid way to start with no dementia present. Relax and take a deep breath and decide between two things, is it important to correct her perception or do you merely have a need to be right. Try, yes, that could be true… and go from there if concepts are way off and you want to help her find the way back. Or just ignore it, after all, her memory is not very good any more. She will not remember that you are right but she will remember that you angrily corrected her.
Say you are sorry at the first sign of their frustration to keep situations at a minimum. – I say I am sorry a lot because I am sorry that I tread on her heart. This disease is frustrating for us both.
Cheryl sees a nurse practitioner a couple times a year. Maureen is pretty practical when it comes to nuanced care partnering. These are her words;
I get lots of questions on how to deal with dementia. I could give you a list of resources to look up on the internet, workshops to attend, books to buy. All of that takes time which most of us have too little of. A great caregiver website, caregiving.com, offers these 5 tips for dealing with dementia.
PRACTICE PATIENCE – This can be incredibly difficult to do. Try to remember when you were dealing with your children when they were young, especially the toddlers. You probably had more patience then, than now. Remember those days of taking a deep breath before saying something. With practice, it will get easier.
PROMOTE PHYSICAL HEALTH – This is for both the care giver and the care receiver. The care receiver can benefit from practicing chair yoga, dancing, gentle stretching. Since the pandemic there are abundant resources on You Tube which can be helpful for both the care giver and the care receiver. A walk outside in the fresh air can help clear the mind for the care giver and give a person a brief respite.
USE PHYSICAL TOUCH – Touch is a powerful form of communication and connection. It can also be a valuable expression of reassurance particularly to someone living with dementia. All of us need a hug now and again. My own mother would remind me I forgot to kiss her good night!
FIND RESPITE – If you’re focusing most – if not all – of your time, energy, and resources on caring for a loved one with dementia, you may find you cannot sustain doing so over the long-term. With proper self-care, you can relax and recharge, manage caregiver stress, and become a better and more effective caregiver. Consider sitting on the porch and reading a book, a brisk walk, a cup of Starbucks, an ice cream cone, a massage, a warm bath with soothing scents. These things need to be done regularly in order to maintain your own health.
REDUCE WORKING HOURS – If you are still working full time, care giving becomes a second full time job. Consider scheduling a meeting with your human resources manager to propose temporarily working from home, flex-time opportunities, job sharing, and/or even paid leave due to your caregiving demands. You may be pleasantly surprised by the accommodations your employer is willing to make.
Maureen is a wonderful practical person. (I also wish she was not in our life because then there would be no disease of Parkinson or dementia.)
Every morning at 7AM the extremely LOUD, BRIGHT AND ANNOYING alarm clock sounds its happy tune to remind us that it is time for Cheryl’s first dose of various meds. My job is to get up and find them. I get a glass of water and bring them back to the bathroom. All of this disturbance usually awakens Cheryl. I help her get up and shuffle into the bathroom to the toilet and then to the counter to take her meds.
Her fingers may not be working well in the right-after-get-up time. At 7AM and a little, she dropped one on the floor. I got her to take the rest of her meds and eased her back to bed. I laid down too after finding that the little white pill she dropped was to combat her orthostatic hypotension which is low blood pressure associated with Parkinson disease. I put this pill with her vitamins that she took later while eating breakfast.
She takes midodrine to combat the hypotension. Generally it seems to work. This morning when she took it separate from her other meds but with her vitamins and shredded wheat, she became lightheaded and fainty feeling. When one checks out the link I have provided, one finds a wearying array of side effects, all of which or none of which are associated with other meds that she takes.
This morning she fainted while I was talking to her. She was looking gray in the face at the time. I helped her to the floor and propped her legs up on a chair. I sat on the floor with her for a bit until she felt like she could sit up. I outweigh Cheryl by about a hundred pounds or so and to me she feels pretty light. I also forget that we are the same age and that means neither of use is twenty-two anymore. Nevertheless I help her up by positioning a chair nearby and she pulls herself up or I get behind her and lift her straight up with my legs. I probably should not lift her but she really does not weigh much in my mind.
It has been awhile since Cheryl fainted while eating breakfast. A couple years ago it was sort of common and occurred maybe once every other week or so. It was so commonplace that I staged a pillow from our couch in one of the kitchen chairs to put under her head for a bit while she was laying on the kitchen floor recovering. Thinking back on it, it crept into our lives so gradually that the two old people living this Parkinson life thought little of it other than, oh crap another new thing to deal with.
A casual mention in conversation to the medical team in a visit a couple years ago caused Maureen to give me the “stink” eye look which said to me, when were you going to mention this? I realized fainting is not a good thing or even a thing that we should merely deal with over time. She gave Cheryl a prescription for midodrine and instructions to take two when you get up and two more during the day spread out. Later this was adjusted to one in the morning, one mid-day, one no later than three hours before bedtime. I now had a use for all seven boxes of our meds organizer.
I found this a couple years ago on Amazon. Ours has black lettering and I created a chart to stick inside the lid.
A pretty long story but in addition to this little blog of mine I have started a little log of anomalous activities and the surrounding circumstances. The doctors and nurses are not looking at Cheryl every day. That is on me.
Cheryl does not drink coffee. She never has. I do. When I make a pot of coffee I ask her in a teasing fashion, do you want some coffee? I made a pot. She says, nope. No coffee for me thanks. it is a conversation we have had for fifty plus years. I love her. Sometimes she will ask for something else; tea, juice, Coke and I will get that for her instead. She seems to be back in this time and place now. Earlier she was not.
This morning that seemingly innocent exchange stuck with me. Her early morning sun-downers syndrome was staying with her and the sometimes accompanying hallucination was staying with her. It made me nervous. I had purchased a couple apple strudels from Marx Bagels the day before and kept them aside for a breakfast treat. Lately she is only interested in doughnuts for breakfast. That part of the breakfast was okay but she kept offering some to someone named Tim. Tim who? I asked as I had not heard that name before. Tim Fiebbig, I go to school with him, she said.
She thought the strudel was okay but she was hoping for doughnuts. I told her that if she really wanted doughnuts I would get some but do not leave until I get back. I zipped out to a nearby UDF for a couple doughnuts and some coffee. Back in a record fifteen minutes with three doughnuts and fresh coffee. While I was gone she sat with Tim in her office to chat until the doughnut man returned. She broke one up into little pieces and offered it to Tim.
In an effort to understand where she was in her mind I quizzed the siblings. This was (is) an elaborate illusion for Cheryl to set up a chair in her office so that she could converse with Tim her imaginary friend from her childhood. She did not seem puzzled that he was in her office. I hoped that it would pass and left her to talk to Tim for a bit. After a conversation of several minutes she came back out and sat with me to watch the morning not-so-newsy news program on CBS.
It is later in the day as I write this and she is still struggling a bit with the images and memories. Those seem to be easing and she went to shower and put on clothes. She seems to be back.
Some is, no doubt, grief caused by family circumstances. Paul Welch, our son-in-law’s father passed away yesterday. He had Parkinson’s disease/ Lewy body dementia also. An incredibly aggressive version apparently because he was only diagnosed about two years ago.
As we head down this road of Parkinson, it is helpful for me to understand what she is remembering. I am often unsure of what to do with that information. Sometimes I turn it into a conversation about that time in her life and let her reminisce for a bit. Sometimes it works and she gently realizes that she is reliving a memory. Sometimes it does not work.
It is a twisty-turny journey. My training many years ago as an engineer has been poor preparation for this time in my career. Spiritually it is a challenge. Engineers want to fix things. This appears to need a total redesign by the Chief Designer.
These days Cheryl is certain that we are not home and wonders when we are going home.
In the background she knows she is home.
But maybe not. Cheryl has lost most concept of time. Calendar time, Day of the week, hour of the day, time until the next event, how much lead time to get dressed or ready; all of these time conceptions are gone. She becomes angry with me reminding her how much time she has left. Maybe I am doing it wrong. She talked (and talks) in implication and inference but my conversation is direct. When she says she is going to do something I assume that she going to do it and I will reminder of her conversation, even help steer her toward her goal that seems to anger her sometimes. It is not my intent to anger her but merely to remind her what road she started out with and keep her on it to completion.
Little girls seem to come and go. The woman who takes care of the little girls seems to come and go with them. Others seem to move her stuff around. And then daylight returns.
I am not a huge sports fan, so, should I write or should I read? On that day I elected to read after hanging the new calendar on her office door, putting away most of the Christmas decorations and helping her finish a batch of cookies. It was a pleasant two hours of downtime before preparation for church.
Church was sadly uninviting as the pastor is out with illness due to covid. We are back to socially distanced mask wearing in a gathering of perhaps eighty people in a building that holds 450 but has not experienced that level of participation for many years prior to the whole pandemic pandemonium.
So today is January 9, 2022. I checked with Cheryl and it is time for the three kings to go back to the orient. But the storage area is actually slightly west of where they are displayed this morning. Balthasar, Melchior, and Gaspar (or Casper) are their names according to Western church tradition. Balthasar is often represented as a king of Arabia or sometimes Ethiopia, Melchior as a king of Persia, and Gaspar as a king of India. So, maybe, the fact that the bucket and the storage area is west makes little difference. It is a much shorter walk than the guy going back to India.
The past week has been a bit of a trial. Cheryl has been having trouble sleeping through the night. It is a common issue with Parkinson’s disease. As a consequence during the day she is easily upset, occasionally moody, somewhat apathetic, quick to anger and often fatigued. The rivastigmine was making her nauseated so it was discontinued. She has been taking quetiapine (Seraquel) and in working with her nurse practitioner we are slowly changing the dosage and timing of that to help with sleep. It is an annoying process but it seems to be working sort of.
Last evening we made blueberry muffins for Sunday breakfast today and for awhile she sat with me to watch our used to be favorite CBS Sunday Morning show. She has not sat and watched this show with me for any length of time for many months. It used to be our Sunday morning activity after returning from church.
Times change and I suppose I am attempting to preserve as much of the routine as possible while we travel this Parkinson’s journey. I do miss watching various pieces with her and commenting about it.
As her memory, creeping dementia and other odd behaviors appear it is incumbent on me to not correct her or even explain those behaviors to others. Her friends all know what she is dealing with. I do not have to remind them. People will show kindness or not. Total strangers can be remarkably kind and generous. Maybe because Cheryl navigates with a cane in her hand.