Doctors Week is Tiring

This week for lack of a better description was doctors’ week. We saw both our personal care physician and Cheryl’s neurologist a movement disorders specialist. He made some minor adjustments in her meds schedule and added one new one to help with anxiety and perhaps some depression he detected by interviewing Cheryl.

Prior to these visits over the past couple days Cheryl slept poorly. This morning she is sleeping in. She was relieved last night when I helped to bed with the fact that we had nowhere to go today. We had no doctor visits. She did not have to be on her toes to answer questions about how she feels that could make her feel sad. I think she is very aware that she can cry easily and is unable to control that response. Her neurologist is very gentle and recognizes her disease’s progression in her body.

It was very hard to maintain her showtime persona yesterday and the day before. I am gladdened by the fact that it is over for a few months.

I helped her up out of bed and into the kitchen for breakfast but I was premature. She kept her eyes closed in the kitchen. She seemed uninterested in breakfast after all. I asked her if she wanted to sit in the lounge chair and doze for a bit. She did.

I talked to the physical therapy folk to schedule the PT recommended by her neurologist. Eventually she awakened as I put a pillow under her left side because she was drooping that way in the lounger.

I rolled her back to breakfast. She ate and looked at the paper. She did not work the puzzles.

I talked to my Portland sister. She often makes me rethink things. The doctor has diagnosed Cheryl with some mild anxiety and perhaps depression. The brain floats in a sea of proteins and chemicals. Parkinson messes with that. I do not always recognize my own needs as a care partner.

The next phase begins.

Carpe Diem.

Today Cheryl took my Breath Away

Allison is a wonderful young woman who has been cutting and styling Cheryl’s hair for some time. She had been operating out of a salon on the second floor of a business front in our old neighborhood for some time. Many years ago when Cheryl had foot surgery I asked her if she could come to our house and do Cheryl’s hair while she was stuck in a chair waiting for her foot to heal. Allison said of course she could. She had several clients that she took care of at their house.

Cheryl visited her in the salon for a couple years after her foot healed but eventually it became too much – the stairs. I asked Allison if she would visit us on a regular basis and a new relationship of service started.

As Allison was getting ready to leave and I handed her a check she said let’s set up a date for here next hair visit. I got out the calendar of all knowledge and we looked at August dates. Weeks-wise the next date would be August 23rd but that date interfered with something for her son Paulo. She suggested either August 30th or September 1st. I picked August 30th.

August 30 is the anniversary of the day we met. It was August thirtieth of 1966. It was a blue moon. Cheryl remembers that. I would to report to you that I remember it succinctly but I would be lying or at least making up stories about my youth. She remembers that it was a full moon. That fact caused me to look up astrological data to find out it was a blue moon. It is a blue moon this year too. I told Allison the story of our meeting.

After Allison left Cheryl talked about her death, something that every human is able to imagine. Cheryl said to me, “She is such a nice young woman. She didn’t mention that I won’t be here then.”

I replied, “What do you mean by that?”

She said, “I will be dead by then.”

I sat down to have a conversation but I was too dumbstruck to speak for a minute. I wanted to know where that thought had come from. She did not have an answer but she was adamant about it. “I’ll be here in spirit”, she said. (Wow. I thought.)

I don’t know what to make of that idea that she has or had for that moment in time this morning. What I do know is that I will be more alert to her needs for the next few weeks.

Carpe – blue moon – Diem.

Hoping against Hope

For many weeks about eight or so Cheryl has been aware of where she is at night. It all vanished tonight and I drove her around the reset block back to our condo and home.

A dark starless nightmare as I prayed the trip would take her mind home.

I found an old movie called “Nebraska” and we had been watching it for 30-40 minutes. Cheryl seemed to be following the story line. I believed that she was anyway. After forty minutes or so after taking her bedtime pills she announced that she wanted to go home. I clarified like always do with response- we are home. We went to church, then to a restaurant and came home to here where we live. To which she responded that she wanted to go to her “other” home. Her imposter syndrome had reared its ugly head.

I wonder what triggers this delusion. The movie dealt with early dementia issues in the main character’s father who read the clearinghouse sweepstakes mailer and believed that he had won a million dollars. He wanted to travel to Lincoln Nebraska to get his winnings. His son humors him rather than fighting his father’s delusional behavior and make a road trip to Lincoln. Things happen along the way as the story unfolds.

We have watched other movies and Cheryl merely announces that she is tired and wants to go to bed. Tonight she wanted to go home to bed. Tomorrow she will have no memory of this episode. I will not mention it. If she does we will talk about it. She will not mention it though. If she does it will be the first time.

Carpe Diem

A Little Surpising and Harrowing

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

Today is Odd

But I am glad it is over with.

Cheryl woke up super early for her these days. She was awake a little after seven this morning. I have to admit that I was a little disappointed because she had been awakening at 9 am or so. I began to treasure those first couple of hours from about 6:30 am until 8:30 am or so. Those are mine to do whatever I want to. Do the Wordle, chair yoga for old people, Quordle, blog a bit or think about life and drink some coffee. It is my time. I would check her and listen for her gentle snoring from the living area while I read or watched the early morning news shows. It was my time so when she was awake when I came by her side of the bed, I was disappointed and also elated that she was awake.

Early after she had a bowl of cereal for breakfast she had a short bout of diarrhea. Not a serious issue and as she typically is constipated as are others with Parkinson in many ways it was a welcome change. Not the loose bowels but the relief coming with movement. It made me want to figure out what she had eaten the day before to occasionally fit that into her diet.

The whole episode which I handled badly, got both of us upset. There seems to be no gentle way to clean her backside while she is struggling with balance issues. She kept complaining I was hurting her while I intended to be thorough all the time I was thinking about UTI’s, so, I complained right back to her about holding still. I apologized profusely afterwards.

After this episode in the front bathroom she went to the big bathroom to get further cleaned up. I suggested that she take a shower to top off my handiwork. I should have kept my mouth shut. She might have showered if I had not mentioned it. But I did not keep my mouth shut. Alas.

I left her to do her thing unaided. She actually was moving pretty good and seemed fairly stable. I checked on her about an hour later and she was dressed.

When I came into the bedroom though she reported that there was a bird flying around the condo. She had been chasing around the room. I told her that whatever she did it must have worked because I did not see the bird anymore. (I may not have told her that in a calming voice. I get nervous and upset when she is seeing things.)

The rest of the day was filled with wandering demented conversation about nothing. Occasionally she spoke about her childhood memories. She wanted to talk to her Aunt Jean and at one point carried on a conversation out loud with her deceased sister Janice’s picture. She said she wanted to talk to her mom and I suggested that we visit the cemetery.

We left to visit the cemetery. During the ride to the graveyard a discussion of George Ward and where he is buried ensued. George is a friend that I went to college with 50 years ago and he passed away maybe 15 or 20 years ago. He married a friend of Cheryl’s who we still have lunch with every few weeks. There is no telling where that thought originated in her head. It just pops up as do many odd and off-the-wall thoughts.

Back home before we went out to eat, I asked her a question about food and she told me two people were talking (in her head) so she could not hear what I said to her.

As I backed away from the garage and lowered the door she told me that the little girls in the garage were upset to be left there in the dark. I lied and told her the light would stay on after the door was down. The girls would be safe there while we ate at the restaurant.

How do I feel?

Exhausted. Carpe Diem.

The Day You Are Born and The Day You find out Why

The two most important days in your life are these two days.

I was watching a piece on the Sunday morning news magazine about a man who studies burrowing owls out west. He made the comment that I used for the title.

Makes one think. I have been thinking about it all day.

I have written many times before that I think my purpose for existing is to take care of Cheryl. I imagine that thought is prevalent in any long marriage relationship. We are partners. These days she needs a little more help than she did a year ago.

Many years ago I was the one who needed a little more help than I needed a year previous.

It is a partnership.

Carpe Diem.

It is Important to Listen

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.

Home Now

We are home now and I have been thinking about it all. it was a great trip. Are there things I could have planned better? You betcha but we adapted and got through it all.

A few things that I would do differently…

And before I left I updated the Linux Gnome interface and for the first time in a year or so turned that computer completely off. Gnome is broken. That computer operates like an old DEC PDP 11. I have a project to keep me busy for awhile.

Carpe Diem.

81 Miles to Home

In my former life as a teacher of control topics I had the students set up an electronic timer to reach its goal at 10 seconds and 30 seconds to teach the point when you are waiting 10 seconds to is a long time and 30 seconds is “forever “.

From my view in the back seat the miles to go display is not fast enough. What is it about progress displays that make us wish them to go faster? The electronic timer had no display. It also taught patience.

61 miles now. Urgency is calling me. We are close to home and I can feel stability and familiarity drawing me in. It was a great beach trip.

Black hat
Us beaching
Early morning beach
Setup
Patience almost done

Carpe patience Diem.

Driving home

I’m Still Standing

Two days to get home. One night in a motel with a less than ideal handicap bathroom. We will get through it. Keep a positive attitude!

Music on the radio is “My Life” by Billy Joel. A great old song.

This morning as we drove away from the overnight stay, “I’m Still Standing” comes up on music list. How apt. Cheryl and I had a less than peaceful experience last night but we are still standing.

Carpe Diem.