Last Night She Slept

Nice. But she has slept for about ten hours so far. I know that everyone sleeps for different amounts of time and Cheryl has been struggling to sleep well the past two days but I worry about the changes in her sleep pattern.

And at the same time when I look inside my own self and think about it, I cannot change how she feels. I cannot change how the disease progresses in her metabolism. I can make her comfortable.

Recently Cheryl Hughes wrote about quality of life and what that means to her and her husband while he was still alive. She makes some good points but I ponder about my view of quality of life is something that I have projected onto Cheryl.

Perhaps on some days she needs twelve hours of sleep. Perhaps on other days she will need a mere four hours. (Those days will be tough.) As her care partner I hope that I can understand that nuance and help her rather than being angry. Angry is a label I place on feelings of anxiety, worry, concern, and empathy for her as her body deals with this debilitating debacle.

It may be all for naught. Recently we got our second covid booster. Perhaps she is reacting to that shot. Neither she nor I had any real reaction other than a sore arm with any of the shots so far. It is simply not understandable what is Parkinson and what is not. It is easy to blame the parkinson when most things are simply old age. Her sometimes in and out dementia inhibits how she tells me what she is feeling. I attempt to be patient and understanding. Sometimes my attempts fall sort.

Are you gonna help me sing?

Some people live their dreams
Some people close their eyes
Some people’s destiny
Passes by

There are no guarantees
There are no alibis
That’s how our love must be
Don’t ask why

— Toto

She is slowly waking up in the bedroom. A new day dawns. I have Alexa playing music by Toto. They were on CBS Sunday Morning today. Perhaps I will get to ride my bike today.

Carpe Diem.

Last Night was Peaceful

Last night was the first dose of donepezil which may help with Cheryl’s confusion and dementia issues. It has two main side benefits (effects) in addition to the myriad of others that seem related to any drug regimen. The side effect I am most concerned with is insomnia. I will be watching for this closely over the next few nights as her body adapts to the medication. The drug literature suggests a two week or so adaptation period. I am hopeful today.

The dose in this series of pills is 5 mg. The intent is to discover the patient’s tolerance for it. The dose will be increased over time. If one eats a little bit of peanut butter each day when one is little, one will not develop an allergic reaction to peanuts. If you eat a little bit of dirt each day as a child you will develop a tolerance for a lot of things later in life but your parents will go through a really annoying diaper period.

Nevertheless last night was peaceful. One trip to the waterproof room and no extra laundry in the morning. Seven AM meds consumed on schedule. Breakfast of yogurt and Pillsbury refrigerator rolls rounded out the morning.

Exiting “news” today from the world’s largest advertising company Meta formerly know as Facebook, new tools are available for Instagram whatever that may be. (I am old.) All the major stock market indexes plunged (not fell) into bear market territory. The Fed is wondering out loud about where to set interest rates. Nervous investors are placing their bets. Bitcoin aficionados are moving their money so quickly the major exchange called a halt. (Think of all those computers mining bitcoin settling into stasis.) Ho hum. And it is going to be hot today on the east coast where all the news comes from. Stay hydrated!

Another day begins. Cheryl seems to be moving well. She can try out our new grab bar that was installed yesterday on the wall near the shower to help with getting in and out of the shower. I have no control over the things that CBS has decided is news today, so, although I am mildly interested, I do not spend much time on it. Cheryl is quietly watching the news after eating her Pillsbury refrigerator rolls and yogurt with OJ.

The Wordle today was easy. I got it on the first guess. Today life is good.

Carpe Diem.

How Many Things Change

It occurred to me this morning as I was reaching for the Cheerios that lots of tiny things have changed in our life together. Not all of them are Parkinson changes. All can seem associated with Parkinson. I will stop using the possessive and leave Parkinson by itself.

Starting with Cheerios, Cheryl rarely ate Cheerios until recently. The why of that thought is unknown. It may or may not be a parkinson. Before Cheerios she was a huge fan of Life cereal. So much so that I was buying Life cereal in the four box collection from Boxed Up online. For several months perhaps a year and a half it was Life cereal, some dried cherries on top and orange juice. Then it suddenly switched to Frosted Mini-Wheat cereal but only for a couple weeks. Sticking with the heart healthy ideas I bought some Cheerios for myself on day as I passed through IGA shopping for the other things on my list. They were quickly adopted by Cheryl as a breakfast option. Cheerios is the current choice virtually every morning now.

A Partial List of Changes:

  • cars
  • house
  • travel
  • motivation
  • dementia and support
  • bicycles
  • relationships
  • Morning routine
  • Sleeping routine
  • Sleeping
  • Memory
  • Intimacy
  • Me and tea
  • showering and hygiene
  • keeping track of meds
  • adjusting meds
  • Exercise
  • Daily chore responsibility
  • Plumbing
  • handholds around the house
  • Emotional response to songs
  • Financial maintenance
  • Falling and fainting
  • Writing
  • and on and on…

As these changes occurred in our life together I did not take notice of them, I merely rolled with it at the time. I admit to being initially annoyed and sad to see something change away from what it was. Old people like to keep things as they are. The past tense is disappointing but the Beatles broke up in 1970. People move on.

Parkinson symptoms are treated with powerful mind altering chemicals. It is the doctor’s call as to what will help. It is the care partner’s call to observe and listen and respect and help with those drugs. The doctor is global and strategic. Day to day caring is tactical, down-to-earth and immediate.

Carpe tactical Diem.

Unsolicited Advice

Oftentimes my immediate reaction to unsolicited advice is to ignore it because I assume that the advisor has their heart in the right place. Pushy people can insist that I’m doing it wrong but it is possible to listen past this and hunt for the useful nuggets of information.

Today Jane apologized for jumping up to find Cheryl a different cup to put her soft drink into at the pizza store last Tuesday. It was both unsolicited and surprising. I ignored it and when she came back with a coffee mug I poured part of Cheryl’s drink into it. It was a good solution and Jane’s apology and later her admonishment when I said that it was unnecessary reminded me that I am not the only solver of problems. Jane’s background is special education with kids that have special needs and although Cheryl is not on of those, some of the same rules apply.

For quite some time now I have been merely moving Cheryl’s giant plastic glass of soft drink away from any gyrations that occur with her hands as she engages in conversation. It never occurred to me to merely request a smaller additional glass to put her coke in. Something that was easier to deal with. AHA (dammit I missed that one.)

Carpe Diem.

The Caregiver Helpbook (3rd Edition)

Subtitled: Powerful Tools for Caregivers

So what can the Care Partner of The Year 2021 do with all of this wonderful knowledge? In an inadvertent fluke of fate and its fickle finger Patty send me an email with the information about a Caregiver’s Class put on by Catholic Charities of Southwestern Ohio. I am all for being as educated as I can about how to take care of Cheryl better by taking care of myself.

Being an engineer and amateur scientist I thirst for knowledge. That is corny but true. The problem with that statement overall is that there is no complete solution to Parkinson’s with dementia added. There is not even a partial solution. Cheryl’s sister hopes for a cure. I do not hold that same hope. That being said, the situation is not hopeless. 

I bought a book called “Dementia Reimagined”. I was hoping for a cookbook style answer manual. It was not that at all. It is an incredibly tiring tome about public policy and where it fell into the dumper over the years. Engineers are always hoping for a cookbook for their situation. When this happens, do this. Alas there is no such manual for life situations as defeating as PD with dementia.

But back to the help-book, It seems as though many of the ideas I have discovered on my own or others have told me about I merely have been ignoring them. Early in the book it talks about developing goals and achieving them. These are not care-giving goals. These are goals that allow the care-giver some relief.

Initial focus is on setting a goal or several goals and development of a plan to achieve it or them. The goals discussed are relaxing activities for the care giver. So, it is something you want to do. It is also something that is reachable and realistic. Something you can accomplish in the near term.

  • What do you want to do?
  • How much of it do you want to do? (more specifics)
  • When do you want to do it? (timing helps to plan)
  • How often do you want to do it? (repetitive relaxing activity)

This same technique can be used to plan any sort of activity, of course, but the book’s focus is care partnering and care partner health. Additionally this portion of the text asks the maker of promises and planning to predict the probability of achieving your activity. There’s an implied deep need here. Something that you may really feel like you want to do but have little chance of achieving. A life lesson in the manner of understanding that not all wants are achievable. (How driven are you to get to your goals)

The next portion of the focuses effective communication and recognizing emotional and stressful situations. Two forms of communication discussed are assertive and aikido. A comparison of these styles of communication is Assertive:”stand tall” vs. Aikido:”standing with” This portion of the book takes me back to my educational psychology classes and discussions about defusing confrontational situations.

  • ASSERTIVE
  • setting limits
  • asking for help
  • advocating for another
  • making difficult decisions
  • dealing with difficult styles of communication
  • AIKIDO
  • defuse emotional situations
  • help others feel understood
  • reduce anger
  • balance emotions to allow dealing with others

As I go through the rest of the book I will report anything else of interest to me.

Carpe Diem

Complaints

Today it occurred to me as I cleaned the Kleenex lint from the washer and dryer for the nth time, it was doing no good for me to lodge a complaint with Cheryl about putting tissues in her pocket. It also occurred to me that although I beat myself up about missing the tissues in her pocket, I will probably often miss one once in awhile.

Dementia is not a specific disease but is rather a general term for the impaired ability to remember, think, or make decisions that interferes with doing everyday activities. Alzheimer’s disease is the most common type of dementia. Though dementia mostly affects older adults, it is not a part of normal aging. (from the CDC)

Drat and alas. Drat, she cannot remember to do it. She cannot remember my complaint either but will detect the disappointment in my voice and probably interpret it as anger. And alas, I will occasionally forget to look in all the pockets.

I will forgo the complaint process. It is not useful anyway. I merely causes us to pick at each other. (Forgo was the answer to the Wordle a couple days ago.)

Carpe tissue Diem.

Fast

There is absolutely nothing that goes fast in our life anymore. Do I miss it? My immediate reaction is NOT.

Max throwing his fast ball

I like how the young people emphasize comments by using ALL CAPS. That enables their fast comments about most anything that strikes them.

FAST however is gone from our life with Parkinson. Planning and thoughtfulness and SLOW are the current buzz words in our life.

I have noticed as I get older (I am Old) and drive my wife with PD to various exercise or other social activities that many drivers – not necessarily young drivers – move through traffic fast. What is their hurry?

Even when I am feeling as though I am late for something, I ponder what will be the result if I am later than I expected to the destination – mass, restaurant, exercise, whatever. The end result is similar to removing one’s arm from a bucket of water.

Nothing. Maybe a couple drips on the floor.

Carpe Diem – FAST

A Manual for Life

Wouldn’t it be great if there is a manual for living? Wouldn’t it be great if there is a book that tells one how to do everything. Wouldn’t it be great if there is book that tells one what to do different when something goes wrong? It would be like an appliance troubleshooting page in the operator manual.

But life is not like that. It would be great if it was but it is not. I am ecstatic when I find one of these charts because any problem I have is rarely on the chart.

In my working career I occasionally helped to create charts like these for industrial machinery but there is no such manual or chart for life. There are however lots of pious platitudes. Social media platforms are full of them.

This last one with the turtle has become my mantra of a sort. Forward is forward. Progress is progress. With chronic degenerative disease one can maintain hope for a cure, that being said, it can be more useful to accept the situation and play the hand that was dealt to you. (My very own platitude.) Forward is forward.

Carpe Diem.

Why don’t you like me? — Standing up to Parkinson’s

The title of this blog post is the name of the poem posted in a discussion group. Zella wrote earlier this week… “I thought my husbands poem might be suitable for Parkinson’s Awareness Day!” To which LAJ responded… “I thought it was going to be about a caregiver who thought their husband didn’t like them anymore, […]

Why don’t you like me? — Standing up to Parkinson’s

As Sue thought, I thought this was going to be about the care giver. It is not. It broke my heart. I have watched Cheryl struggle with opening many things. And I heard Parkyboy talking in the background.

Carpe Diem.

A Different View

When engineers look for a solution to some dilemma, they often spend a lot of time observing the problem.

Many thoughts can arise. Many questions seek answering. But ultimately the dilemma is slowly broken down to component problems and individual solutions to small problems are sought out. An engineering education teaches this process. An engineering education does not teach solutions for Parkinson’s disease and related issues. Those are discovered along the way.

“There’s someone hanging upside down in the trees in back”, she told me. There is a scrub tree growing in the weedy lot behind our condo. It has a crotch near the ground and branches into to smaller trunks as it grows toward the light. The bark is a light color almost khaki in color. To Cheryl it looks like a kid standing on their head. Perception is off a bit and her creative brain describes a different interpretation.

In that moment she pushed me into interpreting things and objects differently. Are painters able to do this spontaneously? Are story tellers able to imagine a different reality? Are engineers stuck with what they see and touch with little imaginative creation? It intrigues me, the imagination and story telling part. I have often thought that if I could get into her head I could help but maybe I would merely be steering her toward my reality and away from hers.

There are many changes that I notice in her behavior. She can easily ramp up an anxiety about indigestion. It is not apparent to me what specific foods cause distress. Milk products and foods high in milk and sugar seem to give her a hard time. Tomato sauces and beef with a high fat content also distress her stomach. The engineer says figure that out and do not eat those. (Easy Peasey) The average time to relief is an hour to an hour and a half.

I have not discovered any silver lining in these stomach episodes. It is challenging to distract her from focusing on how her stomach feels although occasionally I can get her to sip lemon ginger tea which settles my stomach and does not add caffeine. After a severe episode she is typically awake much of the night. This happened last night.

After it became obvious to me that there was no way for her to calm down and sleep some more, we got up. I got her a bowl of cereal and some orange juice. She sat and worked the puzzles for a bit. I sat with her and worked on the crossword. I ate a banana and drank some lemon ginger tea. I asked her if she wanted to watch TV for a bit to see if she would get tired. She agreed and I played a couple of episodes of Steven Colbert. I can no longer sit up and watch his show so I record it for later. We watched a couple shows. Fortunately he was funny and Cheryl laughed here and there.

Today she is not in tip top shape of course and she fell over backwards in the kitchen. She is understandably fuzzy headed even though she slept until about 9 am. Maybe one day she will keep her hands empty when getting up from or down into a chair. But my wishes and encouragement which she interprets as anger go mostly unheeded.

On the drive to exercise class she asked if I slept well. I asked her if she remembers being up for a large part of the very early morning hours. She said no. The fact that she does not have a memory of being awake is not uncommon. I asked her if she specifically remembered watching Steven Colbert’s late show. She remembers that slightly. She apologized. She apologized for something that she has no control over and that frustrates me to no end.

There is no reason for her to apologize. It is not her causing undue commotion. Parkinson did it.

Watch out for kids hanging in the trees. Carpe Diem.