love

What are My Goals?

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My sister said that maybe I should reevaluate my goals for Cheryl. I interpreted that as not specifically goals but what am willing and wanting to do for her care. Considering myself and my health in that same equation.

Hmm, lots to think about there. Recently I bought a new transfer chair to help me maneuver Cheryl around various places that I felt were too far for her to walk. My original thought was graduation and parties. We had some of those coming up.

It was a convenient method of transport so much so that I opted to take it to Florida on our little trip and not Cheryl’s super-walker from U-Step. In retrospect it was both a mistake and a smart move. I did take her “in house” walking frame. She had support at night and in our rental condo. A beach wheelchair was free for the asking we merely had to make a phone call to the life guards.

I pushed her across the street to get ice cream a couple times. that would have been a car trip if I had not had the transfer chair. — Convenient. Getting her into and out of the ladies handicap bathroom/stall — INConvenient. Live and learn mom used to say. We will keep using the transfer chair. It is how I get her out of bed to the toilet to the kitchen. It works great for that. I have not had any back issues. She does partially support herself.

I have started to think — actually I have for some time — I need to get my act together before I start helping her get her act together. In that instance I am not in a hurry for me and I can be calmer (I am still not good at that part.) at least while I am helping her. I have learned to anticipate her moves.

When we were at the neurologist earlier this week he asked if we would like to talk with a doctor associated with their practice that specializes in palliative care. We will see how this all plays out. Are we near the junction with another road?

Carpe Diem

A Little Surpising and Harrowing

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Parkinson is full of surpises.

Many maybe all of these surprises are attached in some form to the various meds used to stave off the effects of the disease. Many of these surpises are not Parkinson at all.

Cheryl falls over upon occasion and those occasions seem to be increasing in frequency. She always falls backwards. Always is a strong adverb simply by being superlative. Every time I have witnessed her fall it has been backwards. When she gets up from a chair and I encourage her to lean forward to put her upper body weight over her toes (nose over toes) she will only do that for the first short motion of standing her next thought is to lean backwards while pushing on the chair. She is afraid to commit to the motion of standing. There is nothing I can do to help. I will ask her if I can help. her usual answer is “No I think I can do it.”

No-I-think-I-can-do-it often causes conflict. Two things tug against each other my unwillingness to allow her to suffer in silence is pitted against her unwillingness to recognize she needs help in some situations or her unwillingness to give in to the handicapping disease. That is one third of her physical surprises – balance issues.

The other two thirds are urinary and digestive issues. Urinary issues are mainly overnight incontinance and a constant fear of daytime incontinance. This last is exacerbated by the inability to easily stand from a chair and her unwillingness to ask for help when her bladder reports to her brain that it needs to be emptied immediately.

Digestive issues are both physical – constipation and indigestion and mental – as in making menu choices or answering “What would like for dinner, dear?”

Parkinson is a complicated disease and that is complicated by the many this-will-cure-you charlatans out there providing help to the parkies who need it and would desparately like to be cured. Many charlatans are not on-purpose charlatans (I am willing to give them the benefit of the doubt), they merely have strong beliefs in something that has worked for them. Parkinson is not hopeless by any sense but it is degenerative. It is complicated. It requires more than a PhD from the university of Google to solve.

Hopeful

Carpe Diem

It is Important to Listen

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Research study questions are I opening (I know you think eye opening) but I meant I as in me. Before the pandemic pandemonium Cheryl agreed to participate in a longitudinal study on Parkinson’s disease.

There is an initial evaluation of mobility and mental agility. There is a blood test, urine test and stool sample test.

Much of the mental agility data collection effort is question and answer style. Several different instruments are used, one of which is the Beck Depression Inventory. As Cynthia (study tester) asked Cheryl the questions and marked her answers, Cheryl began to cry. Cynthia decided to skip the test. She did the same thing with the MOCA test. Cheryl could not draw a clock last time she took it.

As Cheryl was using the restroom I remarked to Cynthia that this might be the last time that Cheryl would be able to come and participate in Dr. Espay’s study. It was not that I thought she did not want to, rather, her mind is gone to the point that she may be of no help to them. Perhaps I should not impose on Cheryl’s desire to help others. A year from now she probably will not remember this visit.

The Beck instrument starts with questions such as:

1.
0 I do not feel sad.
1 I feel sad
2 I am sad all the time and I can’t snap out of it.
3 I am so sad and unhappy that I can’t stand it.
2.
0 I am not particularly discouraged about the future.
1 I feel discouraged about the future.
2 I feel I have nothing to look forward to.
3 I feel the future is hopeless and that things cannot improve.

… etc.

Cheryl teared up on question 2. In each question the participant selects the answer that they feel at the time. At the end a score is computed that evaluates the participant’s depression. Cheryl’s emotional level was strong on the second question and Cynthia stopped the instrument.

I had not realized how this disease was weighing on her emotions. As the disease progresses Cheryl needs more help physically. She relies more on me and others around her. She is very resistant to accept help from others constantly. She gave up driving long ago. A big part of her independence left her when she gave up driving.

It has proven to be a very emotional disease. Cheryl becomes angry with me when I help her “too much”. We have been together too long for me to ignore her needs. I help her anyway. She gets angry with me. I get angry with the disease and what it has stolen from us.

And then my heart melts.

Carpe Diem.

Bittersweet

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THOUGHT FOR TODAY: The bitterest tears shed over graves are for words left unsaid and deeds left undone. -Harriet Beecher Stowe

This TFT came via Anu Arg’s newsletter to me this morning and when I read it two thoughts occurred to me. The first observation is yes but more importantly talk to the people you care most about and listen to them. The second observation is that I have been getting Anu’s newsletter since he started it in college about 1994-ish. Long ago and several email servers back. He and I share a love of words and their meaning both old and new. Today’s word is chirk. An old one that means cheerfulness. (Such a contrast to the TFT)

The Last Day

Today is our last day at the beach in Florida. Is it bittersweet? Tomorrow morning we will return home to our regular daily life (sweet). Am I reluctant to leave this Florida beach (bitter)? No I am not. It was/is however a nice change of pace.

Florida is hot. The humid air sticks to you like Luke Skywalker does to Mark Hamel. Fine white sand is everywhere. Tile floors although easy to maintain feel like a NHL practice rink just before the Zamboni comes out to a parkie unsteady on her feet. Those are a couple of the nuances that did not dissuade us from taking the opportunity to come here with Anna’s family. The experience was sweet. Going home will be sweet as well. No bitterness here.

Cheryl made it through all of the little inconveniences that come with being away from home and slightly off schedule for several days. Her schedule is very different from the rest of us and especially me. I suppose that I should be more cognizant of that but I am not. I am always hopeful that her disease interlaced with dementia will cure itself and we can move on with our life, run around and travel, drink fine wine, keep a schedule, make love again, just simply be. And that makes me forget where she is and where we are. Alas.

Red flag day

There is only sweetness coming when we get home. This vacation adventure with our daughter’s family has been hard on Cheryl but she does not seem to know it. She only knows that I am angry when she is doing something different than I am trying to get her to do. The page I have here about Dementia alludes to a lot of those little daily frustrations that I have observed. I should read it more often. Daily, perhaps?

… talk to the people you care most about and listen to them. Even when they are suffering with dementia and memory loss, she is still in there. Thanks, Anu. I often forget about that. The bitter can overwhelm the sweetness.

Carpe Diem.

Clear and Calm

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Clear and Calm

The water is calm. The air is clear. It is a new day. Pizza Tuesday is here.

Every morning I spend a few minutes finding my center. Many call it prayer and I suppose it may be that for some but for me I think of it as centering.

Each day brings new experiences unlike the previous or the next. Starting in the center allows for movement in either or neither direction. One can go with the flow as the kids say.

This trip to the beach with family is centering me more than I originally thought that it could. Before we left I worried over small details and ultimately let go of some. Of course now that we are here I see a few details that should have occurred to me but did not.

Had I centered on Cheryl and her needs, I might have thought about some handy things that I have used to help her. I should have brought with us a couple more handicapped useful devices. I bought her transfer chair not realizing that her U-Step walker is just as important to her mobility. She needs her manicure kit to keep track of her finger and toenails daily. A handicapped toilet seat would have been a wonderful thing. (At home we have had seat height toilets installed. The toilet seat height is within an inch of the height of the transfer chair seat which is becoming more of the care partnering experience. )

But centering on her disease shifts the mood of the vacation holiday. It is a delicate balance between understanding and helping.

Centering myself at the beginning of each day provides a perspective and I deal things as they come up, not as how I want them to be or wished them to be.

Carpe Diem.

Remarkably Quiet

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The past couple weeks have been remarkably quiet.

I am either becoming used to the odd late night behaviors and reacting to them in a calm sane fashion or they are simply unremarkable to me and seem commonplace.

At the very least I should be thankful to the Almighty that we are in a place that does not drive me to my blog to write about and discern my own feelings and emotions.

At various points in our lives I imagine many of us feel this way. As summer approaches it is time to slow down and enjoy the world’s awakening.

One grand daughter is graduated from university and is on a long awaited tour of England, France and Italy. Cheryl’s sister is off to Italy with her gentleman friend Gene. Another grand daughter graduates from high school in a few days. Our daughter’s family is enjoying their new boat on this bright sunny May Sunday afternoon. Cheryl’s brother is on his boat. He posted a picture this morning on Facebook.

Cheryl seemed to have slept well. I made her current favorite breakfast of scrambled eggs and bacon with grape jelly toast. She seems to be getting up later as time goes on.

Today we will take a walk somewhere in the sunshine.

Carpe Diem.

Birthdays

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Birthdays are a big deal to some. Not so much to others. Cheryl got several cards from friends through the mail.

This vase of flowers magically appeared on Cheryl’s birthday with Natalie when she came to clean. Her sister Nancy had sent flowers for her birthday and Natalie selected them.

In the evening we went to a little cafe nearby to celebrate Cheryl’s birthday with our daughter, granddaughter and her brother. As I was putting Cheryl’s walker out of the aisle in the crowded little restaurant, a woman seated by herself remarked that I was a good husband. She had watched me guide Cheryl into the booth near the window. I told her that I try to take care of Cheryl as best as I can. She told me her husband had passed away a few years previous and she missed him greatly.

When I paid our tab for dinner I paid for her dinner also.

Carpe Diem.

Happy Birthday, Cheryl

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Today is Cheryl’s birthday. She is not sure how old she is and that is a good thing in many aspects. When I remind her, her answer is, “Really?”

Tonight we will go to dinner to celebrate. It was a spontaneous decision on my part. Some of her family will come too. With parkie’s many decisions are spontaneous. One has to determine how the day is going.

Her sister Nancy sent her some spontaneous flowers. Our niece, Natalie, brought them with her when she came to clean our condo today.

Spontaneity is the spice of life and living in the moment is something we all need to do more often.

Carpe Diem!

And Happy Birthday!