Author: AdjunctWizard

On the Importance of Sleep

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Chronic illness and sleep

As we travel this Parkinson’s journey the engineer in me is hunting for a fix for various things that arise. Lately the sometimes appearance of “Sundowner Syndrome” (SS) has me hunting for information and hoping for a solution. This Web MD article has some useful tips about how combat Lewy body dementia which can be a late stage Parkinson symptom. We do many of the suggested things such as, physical exercise, increased lighting and redirecting. Some actually seem to help.

Many if not most PD patients have trouble sleeping. I think Cheryl may be in the “most” category. These are just perceptions on my part but it seems she has about a three day cycle. On the third day she sleeps well at night. Poor sleep seems to contribute to SS.

Caregiver and sleep

The role of caregiver is a tiring one. One can spend much of the day assessing mood, movement, confusion and cognition. In the background of my thoughts is a constant “what am I missing” anxiety. In most cases it is a misplaced anxiety because I have become very good at ignoring my own needs and thinking ahead for Cheryl. — Oh, wait… maybe I forgot my own needs?

Stolen from the WWW – I like it!

Recently I began to think seriously about what I need to stay healthy both physically and mentally. In the summer and warm months I enjoy riding my bicycle around. It is a love left over from my childhood. When the kids where teenage I took it up again for a few years. About three years ago I did it once again. It allows me to empty my head. I listen to a book or podcast while riding and pretty soon a couple hours are gone and I have given no thought to Cheryl and PD. That is until this year, the year of the pandemic and the year of fear and misinformation.

It has not happened for a some time but approximately 3 years ago and about two years ago Cheryl had a bad episode with fatigue and meds. I took her to the hospital the first time and the fire department took her to the hospital the second time. Both cases where less than satisfactory experiences. Hospitals are not set up to deal with Parkinson’s patients. PD patients have very special medication needs. They have very specific medication needs. This year of pandemic quarantine and isolation and the free flowing misinformation and social media idiocy, whenever I rode my bike around my favorite path I was often worried about Cheryl. I was unable to let go and empty my head. I kept track of time. It was exercise and not relaxation. I became totally focused on keeping her out of any sort of hospital setting and as a result I was unable to dissociate from that thought train.

Even caregivers need proper sleep. On those days previous that I had ridden my favorite route without any thought of Cheryl and her well-being, I slept well. That total relaxation and refresh seems missing to me. I have asked my niece and friends if they would be willing to sit with Cheryl while I disappear for a bit of time. Time that I have come to think of as do-nothing time. I am developing a network of care for her and me.

Mindfulness and resting conscience

It is not sleep but a relaxation technique. Many folks are able to meditate and pray and give their conscience state to something else.

When I was a kid I attended a Roman Catholic school. There was a book called the Baltimore Catechism that we all spent time with. In it or may be with it us kids learned how to pray. This is from Wikipedia — Prayer is an invocation or act that seeks to activate a rapport with an object of worship through deliberate communication. In the narrow sense, the term refers to an act of supplication or intercession directed towards a deity (a god), or a deified ancestor. More generally, prayer can also have the purpose of thanksgiving or praise, and in comparative religion is closely associated with more abstract forms of meditation and with charms or spells. On social media and SMS messaging people tend to add little icons of hands pointing up — in the sense of “praying for you”.

None of those prayers written in the Baltimore Catechism do it for me nor do hands pointing up icons give me peace of mind. I empty my head as best I can and think about good times past and try to not dwell on those and long for their return. I try to empty my head of distracting thoughts about the future which tend to go toward death and wondering what that is like. I try to listen to my heartbeat and let go of anxiety about Cheryl’s care and stay in the present for her — not dwell on what unknowns may be brought by the future.

When I am able to do this the day looks fine.

Foggy or bright? — each morning I get up and attempt to discover how Cheryl is doing that day. Last evening for example we had dinner with our friend Jane who joined us for spaghetti and conversation. Towards the end Cheryl felt like she had to lay down and rest. Jane helped me clean up the dishes and she returned to her home across the hallway. When Cheryl returned her view of reality was confused. She wanted to know if we were ever going to return to “that other place.” We had a long conversation about where we live. It is as though she perceives two realities. She knows where we live but she wonders why we do not ever go home.

Foggy day

We later played Scrabble for a diversion and she went to bed. In the morning she seemed to have no memory of any of that confusion from the previous evening.

I get anxious when she ignores things that I want her to do so that she can get a good night’s sleep. And then I remember that I may not know all the answers. I take a deep breath and try to help her move slowly toward the bedroom at night.

The sun-downers thing that seems to be developing is different at each presentation. Sometimes it manifests as an urgent need to complete some task and mentally she is unable to finish – which makes her anxious – which makes her try harder – which makes her anxious – which makes her frustrated – and so on with a mental state that is almost manic. This may keep going even if I manage to direct her into bed. Her mind does not easily let go of the circular task/completion anxiety loop.

It made me think of Randy Newman’s song from Toy Story. I recently heard it on some news program.

You’ve got a friend in me
You’ve got a friend in me
When the road looks rough ahead
And you’re miles and miles from your nice warm bed
You just remember what your old pal said
Boy, you’ve got a friend in me
Yeah, you’ve got a friend in me

You’ve got a friend in me
You’ve got a friend in me
You got troubles, and I got ’em too
There isn’t anything I wouldn’t do for you
We stick together and we see it through
‘Cause you’ve got a friend in me
You’ve got a friend in me

Some other folks might be a little bit smarter than I am
Bigger and stronger too, maybe
But none of them will ever love you the way I do
It’s me and you, boy

And as the years go by
Our friendship will never die
You’re gonna see it’s our destiny
You’ve got a friend in me
You’ve got a friend in me
You’ve got a friend in me

– Randy Newman, Toy Story

She will always be my friend. I just want to be hers and give her a smooth path.

This is my prayer and lament.

Getting Mom to the Beach and other Things

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I started writing this story in 2005 and a little more in 2007. I wrote notes about my impressions of things as Cheryl and I took my mom and dad on a vacation trip to Myrtle Beach, South Carolina. Looking back through the distance of fifteen years is not as difficult as I thought it might be. As I read my old notes – I am a terrible journal writer – I can see the inside of the condo we rented in N. Myrtle Beach, my new Dodge Intrepid, the IHOP near Mom’s house, Dad’s brown pajamas, both of them in the back seat of my car, lots of images.

My notes are not so much a chronology of the trip as they are notes and impressions of conversations with my father, conversations with the person I chose to be with for the rest of my life and thoughts about the situation as it unfolded.

GETTING MOM TO THE BEACH – the full story.

I now spend most of my waking day and much of the night as caregiver to my wife of fifty years who is dealing with Parkinson’s disease. In some ways this trip was training for my role as caregiver. I didn’t know it at the time. Also at about this time 2004 to 2005 Cheryl first presented early symptoms of PD. We merely did not know the diagnosis then.

A Different Reality

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Where is this?

Cheryl awakens in a different place each day.  She thinks that multiple people bring her morning meds to her.  She sees multiple copies of her things. Why do we have so many bathrooms?, she asked me.

It takes a bit of time and a bit of routine for her to get a grip  on reality.  I promised to not tease her and always tell the truth. Sometimes her grip on the actual world around her is tenuous.

It makes me sad. This behaviour is presenting more lately. Mostly in the morning but sometimes we have talked about it at other times as she works through her perceptions.

Pick yourself up, dust yourself off and carry on.

The Importance of Being Confrontational

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We had dinner with friends last night. There was much alcohol. There is little to be said about that except that alcohol lowers inhibitions. Does it enable conversation? Maybe not but it does seem to promote confrontation.

Her candidate did not win. That became apparent early, right after the second bourbon. And as a retired junior college educator she was irritated with the state of education in a Covid-19 world. Life sucks but then there is bourbon so its not all bad.

But eventually after the acceptable amount of self-medication, it came out that she is worried about socialism for her grandchildren. I thought about asking what the term socialism meant to her but I quickly decided that would be needlessly confrontational or might seem so to her. With that in mind, I kept my mouth shut.

Socialism is scary thing for a capitalist. Because, from the dictionary – socialism is a political philosophy and economic system based on the collective ownership and control of the means of production; as well as the political and economic theories, ideologies and movements that aim to establish a socialist system. It seems a hard system to make work with out a lot of true egalitarian democratic decision making. My wife and I often do not agree on which restaurant to go to in a spur-of -the-moment decision to eat out. I find it hard to believe that the 10,000 people or so that it takes to run an oil production company for example could put their heads together to decide how much one should pay for a gallon of 87 octane gasoline that came out of their production line. It seems not impossible but certainly impractical. It also seems unlikely to me that we could ever get socialism ala China or Russia to work in this country of ours. Too many gun-toting NIMBY folks out there to allow that to happen.

There appear to be many a broad brush with which to paint the political landscape and in a brain storming session (committee meetings and hearings) various factions shout at one another without conclusion. The color of Socialism does not seem to stick to us.

What is the purpose of government? Any government’s job is to provide for the common good. If the populous is good and kind and empathetic to one another there is little need of a government.

A home owners association (HOA) is a microcosm of government. It is a truly democratic organization for managing the money and facilities for the common good of all. Hard stands appear when groups of people talk about money. HOA expense items are the same each year. Those service items increase in cost. The basic items are: utilities, waste removal, alarm system, administration, insurance, landscape and building maintenance. Unknowns are saving for a rainy day and disaster relief. It is prudent to budget for all of these. Home owners associations are socialist in most respects. Everyone pools their resources for the common good. Everyone in the HOA has access to all common elements, such as, parking areas, lawns and if such items exist, pools and recreational facilities. Nevertheless, few participants readily volunteer to pay more from year to year for the same. A small HOA can meet in person to transact business but even then not all want to participate.

Village and city governments quickly be come too large to transact business in a democratic fashion. We are used to selecting representatives by vote to exercise and express our interests for us. We accept their decisions as our own. If the populous gets dissatisfied they can vote them out.

Some confrontation is good for discussion. It breaks folks out of their own biases and ideas to understand the side of the discussion they did not before. There are at least two sides to every issue. Many times there are three or more.

Twelve sides

Looking at all sides of an issue or least as many sides as practical before making a decision takes patience and understanding. Passionate debate is useful.

So what does any of that have to with socialism? Nothing. But it points out a flaw in execution. Is there such a thing as representative socialism? There is representative democracy. The U.S. is one. Is there such a thing as representative capitalism?

Perhaps there is a middle ground. What is the purpose of government? In all of our dissension, is it possible to find a common ground? Something that allows capitalism to flourish but protects the rights of the little guy? Something that allows the business community to flourish but provides a safety net for those who cannot compete in an unfettered market?

Unintended consequences compete for partisan attention. The swamp is real. It is populated by asses and elephants. There is not room for socialist asses or elephants.

Everyone stay calm. Read about Sisyphus.

Another new thing 😙

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Dishy is not done

So, in my never ending battle against loss of mental acuity and cognitive decline I bought a pumpkin bread mix. I thought it would keep her cooking small things. She tried one tonight and although I have not sampled it, it looks and smells delicious.

After baking and knocking it out of the loaf pan, she washed the utensils she used and since the dishwasher was running she placed all in the dish rack near the sink. Here is the new thing… after running the garbage disposal for a bit and rinsing the sink down, she turned off the disposal and the switch next to it which turns off the dishwasher. I should add; in mid-cycle.

An hour or so later I walked into the kitchen for a different reason after finishing up with the laundry. I was still in full-time chore mode so noticing no noise from dishy I assumed the cycle was completed and unloaded it.

It wasn’t until I started to push the racks back I noticed the water in the bottom of the dishwasher. 😁 I closed door and noticed the switch was off. I flipped it on and the dishwasher happily restarted as if nothing had happened.

Another thing to check on. I need to make a checklist. It works for pilots. Maybe it will work for caregiving… and unloaded dishies.

I can’t find my…

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Parkie Reasoning

Both of these control where things are placed by people who do not have Parkinson’s Disease (normies). Both of these control where things are placed by people who do have Parkinson’s Disease (parkies).

Is there an easy caregiver solution to the frantic search for …( name item here)? Nope! Unless you carefully watching what movement occurred immediately prior to the loss of (name item here) you should search an area with the most light.

Add some humor to the search. PD sucks and stuff is lost along the way.

Constant Analysis

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I spend a lot of time thinking about…

language

What people mean when they say things. I have never been good at interpreting other meaning from written words. In verbal conversation there are extra sources of information. Facial expressions, body, vocalizations and tone add subtle differences in how the message is delivered. Words are words.

Twitter and Facebook are confusing because people write as though they are in the same room talking to you about something. Talking about something they are passionate about, they are able to recognize they are not in the same room talking and write in ALL CAPS to indicate emphasis. Most do not recognize that old teletype machines printed in all capitalisation. Sometimes the emphasis is lost.

Many years ago I was teaching math as an adjunct for a for profit community college style school operating in the city center in an old bank office building. The CIO who was located in New Jersey sent out an old policy memo about corporate computer usage, the student records database and other topics. The memo itself was full of misspelled words, grammatical errors and IT WAS PRINTED IN ALL CAPS. It was a plain text file (.txt) not associated with any word processor. I accepted the fact that it was corporate policy and therefore worthy of close scrutiny. But it was attached to an email to ALL in the company. I also understood based on my background that this policy paper had probably been written long ago – pre-Word or Wordperfect – and as such had not been proof read since. Many in management positions have a hard time with others, translate underlings, correcting their work product.

Many in the faculty room between classes checking email were giggling. The English teachers in our little school, especially so and some of us math teachers were amused. Language that is to say written language in policy statements should be precise otherwise ambiguity results and the policy for good or bad is ignored.

In a previous job with a boss who was also a friend, I would correct his errors and return his memos to him privately. It was something between us and over time he would give me his stuff to proof read. Sometimes I commented on the policy itself but usually I merely corrected misspelled words, grammar and adjusted sentence structure to enhance readability. This experience made me comfortable enough to suggest to the CIO in New Jersey that he should consider importing old policy memos into Word and enabling the spell and grammar check features before sending them to ALL. I also highlighted many of the grammatical and spelling errors and saved that to a second – AdobePDF – file and replied to his email but not to ALL.

He replied to me with, I do not like your attitude. I did not and still do not have any attitude about his mistake. People make mistakes even highly educated people. In my reply I pointed out that it is very hard to derive attitude from an email and if he needed any further assistance I would be happy to help. He did not reply to my offer.

more

I suppose I gained this propensity to read language in a precise fashion from my father. Early in my working career I worked with my dad at the same company. Once early one morning we were to have a meeting about a project we were both involved in. I arrived early for the meeting coffee in hand. On the green chalk board at the end of the conference room was my father’s handwriting. Printing actually, Dad rarely wrote anything in script, it said – Gary Dean is two four letter words. This sentence was so “my father” that it made me laugh out loud. Dad dearly loved puns and double meanings. Mr. Dean was Dad’s immediate supervisor and I suppose unfamiliar with Dad’s humor. He displayed displeasure with anyone scribbling on his board before the meeting began. The rest of us giggled.

I read for enjoyment. The best authors are able to make me see what they imagine in their mind as they write. The funny ones are a treasure.

I Got Really Angry Tonight

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Luke’s Sunset

Angry with her confused state late in the day,

Angry with her actions during it,

Angry with my reaction to her actions,

Angry with the disease and what it has taken from her,

Angry that I let my emotions show,

Angry that I directed some of my anger at her.

Angry that I trod on her heart.

Just angry with my inability to fix things.

Parkinson’s disease sucks and it makes me angry. And scared.

Scared for what the future holds.

Nostalgic for our past experience.

Disappointed in my inability to be present.

Totally and honestly present and

Mindful of the beauty of this day.

Unconcerned with the morrow or the past.

Accepting of new relationships and hopeful for new connections.

Searching for clues to doing better.

Hoping for some glimmer of light of

a new dawn.

Night Time Conversations

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Elevators and pills?

It is an odd conversation. Made more odd because it was quarter after six and I was in the middle emptying my old bladder for the second time that morning. Standing over the commode about halfway there, the door pops open and Cheryl looks at me for a moment then backs away and closes the door most of the way. I finished up and flushed the toilet.

As I came out of the bathroom, she asked me – you will have to show me how that works sometime. I replied – do you mean the toilet? No, she said. That elevator thing that you came out of. You will have to show me how to work it. Where does it go?

It just comes up from the pill area, I replied. Good! Can you get my pills for me? I’ll take them but I have to go first. She passed me and closed the door to the bathroom.

I got the morning meds from the kitchen. It was not too early. This was the day after the “fall back” idiosy that we have perpetrated on ourselves to get more golf daylight after work. Parkies have a problem with the shift. It is easier in the Autumn but it is still there.

The next day

It had been our usual (for these days) night. She headed to bed at 10PM after taking her night time meds. She laid for a while with an icepack on her head and eventually gave me the icepack to return to the freezer after several trips to the bathroom.

Over night she got up to go once or twice but returned to bed with out any confusing conversation until about 5AM. — some of this is fuzzy to me — She went into the bathroom for a bit and seemed to be having a conversation with someone. (Not unusual – she talks to the spiders before executing them.) She came back out and told me there was a woman in a pink bathrobe that needed to use the bathroom first. I got up and went into the bathroom and removed her pink bathrobe from the door where it was hanging into the closet and closed the door to the closet. I returned to the bathroom and said – she is done now. It is all yours.

She used the toilet, brushed her teeth and returned to bed. I asked about the teeth brushing and she said her mouth did not taste very good. Now her breath was minty fresh. I told her so and she replied with – I love you.

About two hours later at 7AM the incredibly loud and annoying alarm clock brightened itself and loudly pronounced – Time For Medicine! I got up to fetch her morning meds. She got up and went to the bathroom after I set her medicine on the bathroom counter and helped her out of bed which is another normal routine these days.

Afterward she did not come back to bed. Often we lay in bed until she starts to gently snore and I get up quietly as possible and let her nap for a bit or she gets up after about thirty minutes to return to the bathroom. This time she stayed up. I asked – are you coming back to bed? She replied – no, I think I will put some clothes on. I did not probe any further but should have done so.

I got up and fetched the paper, made coffee and settled into the chair I cannot decide about keeping. I turned on the TV to catch up with the boring political news of the day. This is election day. The TV news is like the pre-game show from hell. … it is a nice day outside but the lines are long at the polling places… reports the guy standing outside a poll in New York City down the street from a boarded up Macy’s. Cheryl came out of the bedroom dressed up to go to church or some other gathering requiring an upgraded look.

Do you know who is picking me up?, she asked. I replied – no one yet. You should have some cereal for breakfast. (I was hoping that she would wake up.) She ate a bowl of cereal.

Afterward she went back to the bathroom, I thought, for a second time. As she came back out she said again, I don’t know when they are picking me up. I replied that no one was picking her up to go anywhere. This, of course, did not register as she was convinced that someone was picking her up to go somewhere. When I asked for that detail – where she was going – she replied, I don’t know but they will when they pick me up. She remained agitated and got her keys and went out into the front hall. (I thought she was checking for mail at 8AM.)

She returned and said, there’s no one out there. Do you know when they are coming? I coaxed her over to her chair (The Chair) and got her to sit down. I moved the rocker over so I could sit and look straight at her. And then I explained again that she was probably dreaming when she heard someone tell her that she would get picked up soon to go (wherever). I repeated this message and the one that we where going to her exercise class at noon today and, oh by the way, this is pizza Tuesday. Some of that sunk in through the fog of confusion because she asked again. I’m not going anywhere? No, not yet I replied. To your fitness class around noon, I continued. I look pretty good don’t I, she said. Yes you do. You look very nice, I replied.

I brought her some tea. We watched some more of the pre-game election news madness. She remarked that her watch agreed with the clock on the mantle but the news person had reported a different time. I told her that we were watching a recorded program – a benefit of cable – and we were watching it on a delay of about forty minutes. Oh, she replied and I could tell she understood. She was slowly becoming present.

At 9:30 AM she announced she was going to put on jeans and rest for a bit. I took her the ten o’clock meds at ten. She went to the bathroom and returned to bed and slept for about thirty minutes.

… 11:09 AM — she is back! But tired. She ate some yogurt and drank a little 7-Up.

Changing time zones is one of the more moronic ideas of the twentieth century carried into the twenty-first. China has only one time zone. Think about it and look on a map.

Cyptoquips and Word Jumbles and Sudoku

Her favorite games in the newspaper are these. Even though she may have episodes of confusion, she still works these. They require both logical and expanded thinking – references to puns, etc.

Parkinson’s disease is puzzling and it sucks.

The Chair ARRIVED!

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It came! AND the power package worked. There is nothing more to say. The joy on her face when she sat in it for the first time says it all.

Happy chair owner

Thank the lord and the heavens above. The Chair has arrived. It has been pronounced good and comfortable.

During this process I watched Cheryl get into and out of a sitting position. In her PCF class they do this as an exercise. A parkie seems to need two things to help with this. The chair needs to be steady and sturdy. No rockers, swingers or swivelers allowed here. We had a plain wooden rocker which is also less than satisfactory for getting up and out of. This chair is taller and solid. I tilts and reclines but has no other movment.

Swivel chairs are a really bad idea for a parkie.