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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.

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.

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.

Middle of the Night Comments

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Did you see? Dad changed light switch. It has a little knob to make the lights brighter.

Pretending to be a sister, I replied, it’s nice isn’t it?

Cheryl replied, yes it is.

Sometimes in her sleepiness she calls me or refers to me as “Dad”.

Death and Dying and Left Behind…

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My sister died in 2008.  I have written about her before.  She was our baby sister.  I will always think of her as my baby sister.

She died of complications to pneumonia.  It is hard to breathe with pneumonia.  Not breathing well contributes to low blood oxygenation.  Effectively one drowns from pneumonia.  Laura had myelodysplastic syndrome.  It did not kill her.  I was her blood stem cell donor.

During Laura’s treatment it was discovered that she was allergic to virtually all the antibiotics they gave her as a prophylaxis. The treatment for pneumonia is antibiotics.  The solution for MDS is kill off the bone marrow and as a result the patient’s immune system.  The antibiotics given during this process put her in a coma for six weeks.  The doctors supposed that she had veno occlusive disease, a liver problem with a low survival rate. She did not have that.

At the beginning of her treatment before I donated my luekoblasts to her, a nurse and social worker and I discussed the possibility that my blood cells which came with my immune response could actually attack her and kill her.  The discussion centered around, how did I feel about THAT.  I was certainly not excited about the fact that I could kill her.  Presented as my call.  A moral dilemma- Laura will die if I do nothing; Laura may die (sooner) if I do something.  Looking back from the distance of thirteen years my reaction is the same – tears come to my eyes. [I had to stop.]

I remember thinking that I should ask Laura if it was okay if I killed her. I did not. This procedure is presented as do this then that then this and … you are healed. I suppose that they discussed with Laura the survival rate. She did not survive. I will always be somewhat skeptical of doctors and cancer cures. The fact that she died specifically of pneumonia is a distinction of no import. I was there when she took her last breath. I will never forget the silence.

My brother died this year in May. He was my big brother. I have written about him too. He was six years older than I less nine days.

He followed his dream job to Florida many years ago and from that job he went to others always in Florida. His last job was a coder/programmer for a subcontractor to Microsoft. He was a smart guy or at least that is my perception from little brotherhood. Every time I turn on my computer I think of Bill.

Families are complicated. One wants to believe that there is a close personal connection between siblings in the family but that does not always occur in life. Gaps in age, education, life choices, geography and beliefs tug at simple family ties. Our family is no different. We held no animosities but we did not live in each other’s lives.

Our parents Virginia and Robert died about eight years apart. Dad passed away in 2007 about a month before Laura. Mom passed away in 2016. Every time I throw away a box from Amazon or Boxed Up, I think of Mom. I hear her voice, “Paul, don’t throw away that box! That’s a good box.” Mom kept a lot of crap in boxes.

I think of Dad in various situations. He was what we would call today a hacker. When I was a kid our basement was full of old electronics. When he retired he became enamored with computer equipment. He spent a lot of time futzing with computers and programming them. Visual Basic and he were friends. He was always working on something called his Bingo Program. He occasionally journaled too but although I inherited all his computer stuff I have not found any of his writings. I think of him when I write random comments in this blog/journal of mine.

Now it is only Joyce and me. We talked yesterday for about an hour. We did not talk about anything special. I called her merely to hear her voice. It has been thirteen years since our original family group started dying off. For some reason it is important that I hear her voice more often.

She mentioned in our conversation that she is not very excited about turning 70 this year. (Wow has it been that long?) She sent me the picture below many years ago in a birthday card. Laura is in the middle. In her note she wrote – I’m so glad you are my brother. I am so glad you are my sister, Joyce.

Remembrance of occasions and enjoyment of those fade with time. I have often pondered why I remember some things and have absolutely no memory of others. What we were excited about on this occasion is lost in my memory. Joyce found the picture and sent it to me. Obviously it is Christmas time. I am swallowed up in abject joy and laughter. No memory at all about it. I am grateful for the picture of us.

Life and death? — Dad was not afraid of dying. He said as much to the doctor when he was given the news that an X-ray photograph of his abdominal area revealed a mass on his colon. I do not fear dying. I worry that Cheryl will be provided for after I am gone. I wonder if Laura would have lived longer if she and I had not exchanged blood cells. I wonder if she would be alive today if her doctors had simply been smarter about what was going on in her body. Maybe she would not have spent six weeks in a coma. … could have, would have, should have.

Laura told me about a month before her death that my stem cells had taken up residence in her bones. Our life experiment was working. I speculated – how do they know? Her response was – I think because they can look in there and see little X’s and Y’s. Yes, I imagine they could detect those somehow.

In the background of the conversation between Joyce and me was a thought like, I should have asked him (her) that when Dad was still alive, when Mom was still alive, when Laura was still alive, when Bill was still alive. As I talked to Joyce I thought about how short our time on Earth is. Seventy years seems like a long time but it is not. I thought about how fragile our existence here is. At this time in our life a virus threatens lives. Ask those questions. There may be little time to get an answer.

Other morose thoughts — In his late years, Dad would not hesitate to tell you that he was older than his father. Dad’s father died when he was 82. In Dad’s mind he felt that he would live to be 82. As he got closer to that age, he resigned himself to the fact that his life was almost over. He was not worried about dying. His only concern was, would it hurt? I think that was his only fear.

Pain is the only thing that makes me uncomfortable about death I believe that I do not feel pain as others do. I understand Dad’s point of view about pain. I wonder if it hurts to drown. I wonder if it hurts to die of pneumonia. Does a sudden massive heart attack hurt?

Death causes a gap in the family. I have become very aware of that gap in our family. Joyce and I are closer. I believe we are. It is just us now.