caregiving

PT Goals

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Ten meter walk – How fast does it take to go 10 meters? (36 sec) The metric system is everywhere except in American society.

This U-Step is  a great walker. Why don’t you use it inside? It is a great question from the physical therapist. When I first brought it into the condo it merely sat next to the dining room table until we went somewhere but in Cheryl’s defense there are a lot of close by things, chairs, tables, half walls, door handles and grab bars that she ignores the walkers during the day unless she is feeling very unsteady. We have had a standard looking walker for quite some time. She worries about bumping into things.

We do use it when we go anywhere away from home. The wheels track in what ever they got pushed through elsewhere. I do not care about that. It is old carpet on the floor. It cleans up good when the carpet cleaner folks show up. It is just another maintenance item for the budget. I can encourage her but usually it sits by the dining room table. – This goal is use the walker more for safety.

Sit to stand – scooch forward, lean forward… like a rocket ship… push up off the arms of the chair. Stand to sit – lean forward and reach back, hold the chair and sit. The PT person provided this as a recipe for standing up. I have helped her with this at home but when we start it from a sitting position I can she her become anxious about making a mistake and “getting up wrong.” I am unsure about how to help her past this feeling.

Balance 7/56 — I took this note but I am unsure of its meaning now. I think it is intended to mean that of several tests for balance (56) Cheryl has a poopy score for balance. She has to think about balance. In most of us it is an autonomous function.

Difficulties with balance and walking are linked to the brain changes that take place with PD. For people who don’t have PD, balance is automatic, a reflex. But Parkinson’s affects the basal ganglia (a part of the brain essential to balance). To compensate, the brain assigns another brain area — an area used for thinking — to take over. The thinking part of the brain, mainly the frontal cortex, can’t control balance automatically. The result: for many people with PD, balance becomes less automatic.

https://www.parkinson.org/blog/research/Walking-with-Parkinsons-Freezing-Balance-and-Falls

more exercises

Stretch – lay like a T shape raised knees over to one side back to middle – one side then the other.

Sit on a chair – Reach up open the chest – bring arms to horizontal – twist trunk to one side and then the other with arms outstretched.

Carpe Diem and many trips to the PT experts. Next up – Occupational Therapy.

And Last Night was Bliss (Again)

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The ups and downs of this Parkinson thing do not seem to allow for planning, comfort and looking-forward-to-ishness. I imagine it is the biggest headache we care partners have to deal with day to day.

In addition to the fact that Cheryl can be great one moment and in the next she can be off in the weeds punding or hunting around for something that does not exist or merely worrying about something that is days into the future, she sleeps fine several days in a row and then one night is up. If one does not have Parkinson one can still have sleepless nights occasionally. Parkinson merely makes it more annoying. But, holy cow, it can be really annoying and not only for the Parkinson person.

The previous night was miserable. She did not sleep until about 3 am. Last night she laid down at 11 pm and did not move from that position until 7 am when the LOUD AND ANNOYING alarm clock went off to signal TIME FOR MEDICINE. That is what it displays in two inch high bright green letters after it raises its brightness level so that it is visible on the moon.

I got her the meds. She took them and laid back down for a bit to allow them to work. I put the Kleenex box in front of the message to the lunar astronauts. I felt rested.

I went to turn on the “news” and was shocked to learn that there were sexual hi-jinks going on within the Southern Baptist Convention. Hoping for more news about the Pirates of the Caribbean star Johnny Depp and getting instead the fact that Hunter Biden was, as a husband, a stinker as told in a new tell-all memoir by his ex-wife, I turned it off to do the Wordle. Ho hum.

She got up a little later and put the big new bed back together.

We are up at the regular time with no extra laundry today.

Life is good.

Carpe Diem.

How Many Things Change

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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.

Another Lunch with Friends

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A good friend of Cheryl’s from church organized another luncheon with her and another mutual friend today.

Back in the bygone days of younger kiddos and the everyday working world, Cheryl was part of the group of women (mostly) who decorated the church for various holy days or other events in the church calendar. Often Cheryl’s job was to clean and press and arrange the alter cloths just so. The group would spend an evening or Saturday decorating the church for the occasion.

These days are gone for her and the decorating committee and St. Ann’s sodality has thinned over the years. Today however Cheryl and Barb are hooking up with Diana, the team leader, who has moved to a retirement community with her husband on the other side of town.

It gave me time to experiment with banana bread and fool around with other things. Maybe even blog a little.

Carpe Diem.

More AHA Moments – Boats

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Cheryl told me she is scared to be on her brother’s boat.

Recently Cheryl’s youngest brother invited her and the rest of her living clan and clan-in-laws for an evening ride on his pontoon boat that he moors in a small man made lake near his home in southern Indiana. I am always on the hunt for things to do with her that let her socialize a bit out of and away from our little condominium living situation.

Since Ken’s text message came to me on the family text chat, I told her what he proposed. Cheryl responded with, “I will think about it.” This is a phrase that she learned from her mother as a small child and she has used throughout our fifty years of marriage and many times during our child rearing years. Roughly translated it means “NO” or “no thank you.” But being the polite person that she is, she does not want to hurt anyone’s feelings, she rarely says no directly. (She also learned this from her mom.)

Cheryl has a lot of her mother’s traits. She does not want to put anyone out. She does not want to offend anyone. She can be angry with me as could her mother when she thinks that is appropriate, as when I am being pushy. She does not want anyone to stifle their good time by worrying about her welfare. She is okay with isolating herself to (her perception) benefit others. She enjoys the presence of small children even if the small children are unsatisfied and complaining about it. She enjoys the presence of big children and wants to be a part of their life even if the big children are uninterested in letting her in. She likes big family gatherings.

Most recently she has a new special Parkinson’s patient walker to help her move around with steadiness. After her appointment with her MDS neurologist on her birthday several days ago, I ordered this for her. In the picture is her new U-Step. I should have gained my AHA here since I just ordered this over the phone three days ago. (I am buying her a stabilized walker and suggesting we go on a boat that will wobble every time someone moves.)

U-Step walkers are designed specifically for folks with PD to give them a strong base to walk with and against

But, getting back on track, she said to me that she is scared to be on Ken’s boat. That is the first time she has ever expressed that to me.

AHA MOMENT – Occasionally these pop up and I cannot always understand her needs. Prescience is not a strong trait of mine. But imagine for a minute, here is a person with balance issues and I am promoting going on to a less stable surface than she is used to. She can lose her balance and fall backwards when changing positions in our living room. Our building is built on a slab. It is hard to get a more stable surface. AHA (you moron).

Ken caught on pretty quick and proposed dinner tonight on the deck at Willie’s restaurant next to the puddle (his term for the man made lake.) Tonight is anything goes pizza Tuesday. Willie’s fits into the anything goes part of pizza Tuesday.

We will go tonight and take the new walker for practice and hopefully greater stability.

Carpe Diem.

Once in a while the road seems straight even when it is not.

…

Complaints

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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.

Slowly They Recognized

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Slowly the kids recognized that Dad was not going to ask for help.

Is it a loving husband thing? Is it a lifelong engineer thing? Is it arrogance? Is it and internal belief that only I can do it? – which is, maybe, arrogance. What is it about Cheryl’s PD that causes me to reject all offers of help?

Is it concern about interference? I know I felt some of that when Mom was still alive. Even though I was not at Seasons or Bridgeway Pointe every day, I felt I knew what was best for my mother. Conceit?

Slowly dad began to recognize that he was rejecting help freely offered.

It is not all about the caregivee. It is hard for the caregiver to recognize that things change. Relationships mature even when the relationship is mature and those in it are mature. (Aha!)

Occasionally the roles of giver and givee reverse without warning or announcement. Perhaps acceptance of the reversal satisfies more than a rejection of it. Perhaps dad needs nudge toward acceptance.

Slowly, ever so slowly, dad will change. Maybe.

Feeling Groovy / not Groovy

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How do I feel today? I write little scribbles here because it is a kind of therapy. If I find a little story in my head and I think I can tell the story. I do. I do not concern myself with who reads it. It is written for me.

Lately I have been listening to Simon and Garfunkel albums. Songs from old vinyl and from Alexa. This is the music of my high school years. For whatever reason, recently, it has become the background song track of my life.

It strikes me as interesting how many of these songs I know the lyrics to. It is also remarkable how that can lift my spirits. The 59th Street Bridge song just went by and I asked Alexa to repeat it. That is a super cool feature. It reminds me what a wonderful and amazing world we live in!

Feeling groovy about that!

Covid-19 virus, kungfu flu, Chinese virus, novel corona virus, whatever you choose to call it or slander it with, it has caused virtually everything to stop. In retrospect, Parkinson’s is good training for that. Much of our “running around” life went away with Parkinson’s disease. Lots more planning is involved.

The sound track plays “Bridge of Troubled Water” and makes me mindful of how much more intimate and involved our life has become as Cheryl deals with her symptoms and I help her to do so.

When you're weary, feeling small
When tears are in your eyes, I'll dry them all 
I'm on your side, oh, when times get rough
And friends just can't be found
Like a bridge over troubled water
....
Sail on silver girl
Sail on by
Your time has come to shine
All your dreams are on their way
See how they shine
Oh, if you need a friend
I'm sailing right behind
Like a bridge over troubled water
I will ease your mind
... Bridge over Troubled Water  - Simon & Garfunkel

These words, I did not copy them all, are a perfect description of the role of a caregiver. I actually teared up while Paul Simon (Alexa) was singing a moment ago. He makes me think about the importance of this job that was given to me above all my objections.

But not feeling groovy about that.

The first thing I remember
When you came into my life
I said I'm gonna get that girl
No matter what I do
Well I guess I'd been in love before
And once or twice I been on the floor
But I never loved no one
The way that I loved you
And it was late in the evening
And all the music seeping through
... Late in the evening - Paul Simon

I guess your journey through life can be happy without love for another. I am not wired that way. Each day with Cheryl is a new and valuable experience. More and more I recognize that to be an undeniable truth. It is, however, very hard to watch her deterioration.

But, all in all, Feeling Groovy. This is a great way to express my current state of mind.