Caregiver diversions

Longing for a Life

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Some days when I look at family pictures I find myself longing for a different life. I long for a life without Parkinson. Often it is a deep deep longing on those days when Cheryl is struggling and I understand she is struggling and I have no ability to help without making her feel helpless. Her dementia pattern seems to inhibit her from asking for any assistance or realizing that she needs assistance whether it is me holding her up so that she can steady herself or simply handing her a tissue to blow her nose or blot her mouth when the drool comes.

Care partners run out of gas too. On most days her memory seems to work for about 10 minutes. ( That may be a sarcastic quip.) On others the loss of the discussion is much shorter than that. On those days I become frustrated which manifests as a louder whiny voice and sounds like anger. It sounds like anger even to me. Cheryl responds with anger and I suddenly remember where her mind is. It is very easy to forget she is still Cheryl. Repetition helps her know what to do or where to go or what she thinks she needs to do. Nevertheless it can be frustrating.

I started writing this short essay a couple days ago when I was feeling down? lost? tired of it all? – defeated? – maybe all of these. Sometimes I just wonder what if?

I doubt that anyone dealing with a partner in life that has a chronic disease wishes for their current existence. Endurance and strength to get through it all is all I ever hope for.

Looking back on the past few years, the covid shutdown, the covid start-back-up, the lifestyle/work style changes to society, the meanness of social media politics, I realize that Cheryl and I do not have it so bad. I wish her dementia to be gone but it is not – except for the few moments early after she awakens. She will look at me with tired eyes and smile. It lifts my heart and soul when that happens.

I still wonder “what if?” I just do not let it control me.

Breathe in, breathe out, move on. — Jimmy Buffet

GULF SHORES, AL – JULY 11: Musician Jimmy Buffett performs onstage at Jimmy Buffett & Friends: Live from the Gulf Coast, a concert presented by CMT at on the beach on July 11, 2010 in Gulf Shores, Alabama. (Photo by Rick Diamond/Getty Images for CMT)

Picture stolen from NPR.

Carpe Diem.

The Devil Wears Prada

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It is a great movie about work/life balance. Meryl Streep, Anne Hathaway, Emily Blunt, Simon Baker, Stanley Tucci and others portray an exciting and treacherous existence in the environment of high fashion. Along the lines of Pretty Woman, Nigel (Stanley Tucci) helps Andy (Anne Hathaway) to get her act together and become indispensable to Miranda (Meryl Streep) the head of the magazine called Runway. Ultimately Andy realizes the life is not for her after she realizes how duplicitous Miranda is following an episode in which Andy has placed all of her loyalty and assumes a friendship that does not exist between the two women. She pitches her pager into a fountain in Paris and walks away.

That movie appeared on VH1 the other night as Cheryl and I were winding down in the evening. I have watched it several times before. It is very well done. And now it occurs to me that my working career was over in time to allow me to devote myself to caring for Cheryl. I like to watch movies and Cheryl and I have been doing that more in the evening. She seems to enjoy sitting quietly and watching while also looking at a magazine or messing with the Frameo that no longer receives pictures for some mysterious reason.

The storyline of movie has to be slow moving and serious and tell a story. The superfluous and loud comic book movies that seem to be popular do not interest her and they are hard to follow. I find them to be the same.

She is completely wrapped up in 80 For Bradley because she likes the four actresses involved in the story. I am constantly hunting for another like it to capture her interest. (We have watched it many times.) I am much too familiar with “80 For Brady”.

Last evening I found an old Tom Hanks movie “Big” was alive and well on MGM+ on demand. We watched that. A cute little story with a very young Tom Hanks. Cheryl sat and watched it all the way through. She sorted some of the Kleenex in the box next to her and lined the tissues up with the old CET Connect magazine that she was looking through while also half watching the movie. We talked on and off as her mind wove the movie story line into her memories of childhood. In all it was a calm and pleasant evening and she ran out of gas about 10:30 PM.

Perfect! She got to see the weather report so that she could forget it today. Winter is coming and so is Friday the first of September.

Carpe Diem.

It’s Hot

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The weather weenies all recommend the same thing  – it is hot, stay home if you can. It is snowing, stay home if you can. It is raining, stay home if you can. There’s a new strain of Covid called ny.g.78.5-17 circulating, stay home if you can. Canada is on fire, stay home if you can. The Indians have landed a lunar lander on the south pole of the moon, stay home if you can. The head of the Wagner group got his plane shot  down, stay home if you can.

The Republican psuedo debate is on television tonight, stay home if you can.

A woman on the other side of the gas pump to me remarked they say the economy isn’t bad, making clear reference to the price on the pump. I thought, stay home if you can. I said, it’s hot though.

There are so many things for us to worry about, I am going to stay home if I can.

Hot outside, stay home if you can.

Carpe Diem.

Quiet Mornings

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I treasure the early morning these days as Cheryl’s disease destroys her mind.

Last evening – pizza Tuesday – I watched her interact or not with the conversation around the table. Reminiscent of family gatherings when she and her family was younger, there was laughter and loud talk, multiple conversations and talk of upcoming travel and other events. She seemed overwhelmed and at the same time comforted. It was like old times.

Her conversation was confused when we returned home. What time is Nancy coming to pick me up? Will Jan be with her later? I couldn’t hear what Dan was saying. When we have the next family reunion… Her chatter goes on and on. Dan was not there and Jan has passed from this life.

I mull over her conversation in my mind and wonder what if any of it she will remember. At about 1 am she awakened and wanted to go get the cookies out of the oven. I somehow convinced her that she was probably dreaming and we could make cookies tomorrow. After using the toilet we returned to bed and eventual sleep.

In the morning these days I awaken about 7 am and leave Cheryl to sleep undisturbed until 9:30 or so.

It is peaceful. I hear her gently snoring in the bedroom as I read and enjoy some coffee. Or write these little stories.

Carpe Diem.

Why

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Why do I feel like Cheryl has to try out restaurant restrooms like a small child who has been recently potty trained? Is it my imagination or the real feeling that she is has. She seems to ignore her bladder and her bowels until we get to somewhere that she may get trapped. She has no ability to think or plan ahead for toilet contingencies. And then at other times it is all she can think about.

Why?

Yesterday, the discussion was about some lesson plans and software development for the early computer program that she pioneered in the grade school our kids attended when they were small. We had come to a nearby park for a walk after dinner. She spoke of this as though it was on going. She had to get that organized.

On the way home from dinner in one of her favorite restaurants, there was a near disaster with urinary incontinence and no protection for it. This part of our life saddens me. She will not ask for help. She knows that she needs help but is either unable or unwilling or simply embarrassed to ask for it. When I offer unsolicited help she will become angry and anxious. I understand this completely and at the same time I do not understand it. An urgency in her head is organizing old birthday, Christmas and other greeting cards in her office. Taking a break from that for a bathroom break has no priority. Her “full” signal does not work correctly. By the time her body signals full to her brain, she is stuck because she forgot how difficult it is to get out of the chair. The bouncy motion she uses is not helpful. She will not ask for help.

Why

Tonight when we got to the restaurant she was looking around to see where a couple of our kids were. She thought that they were coming even though there was no mention of them coming or any communication of that sort. An idea jumped into her head from left field. In the afternoon lots and lots of left field thoughts appear. Why is this part of the plan?

Why?

Why in the afternoon? Or is it merely that I notice in the afternoon and it grates on me more after having dealt with her worsening dementia all day? Sometimes her memory is so short it is not unusual for her to forget the previous sentence. Where are we going? – can create great frustration in a caregiver (me) when repeated at two minute intervals throughout the day.

This essay started with me sitting in one of our favorite restaurants wondering if she would be able to get back through the ladies room door. As I now read what I wrote that day and think about where we are with this disease — we is an important part of those thoughts — my meditation drifts off into why do I think I know better? For that matter why do folks generally think that they have the solution to this dilemma or that conundrum and freely volunteer the solution? There is no answer to that last comment. I can, however, parse and control and limit my own contribution to living our best life with Parkinson.

Tomorrow we see a new doctor. Her calling and interest is palliative care with a chronic degenerative neurological disease. Cheryl’s movement disorder specialist suggested that she might be able to help. He also wrote scripts for PT, OT and speech therapy. She has been therapied by these people before. She lied to the PT folks last time when they asked if she tried the exercises that they gave her to do. I do not think her moderately cognitive impaired brain thought of it as lying. She thought about doing the exercises, that was enough.

For my part, I bought a caregiver call button from Amazon. My thought was that Cheryl could press her button if she really felt that I could help her – get up, find clothing, get socks, and a myriad of other small helps with which she is struggling (her mind says no she is not) but does not want to accept that she needs help with (see I did it again.) Her speech is so soft she cannot say loudly, “I need help” or I am not listening. With this doorbell she could press it when she needs help rather than me hovering around the bathroom door asking, “Are you doing okay?” She does have to keep the button with her. That is the next great solution to find.

Admittedly it seemed like such an attractive solution. Ugh!

Carpe Diem

Today – Is it Christmas?

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Yesterday evening when we went to bed she told me that today she wanted to put up the Christmas tree. My response was sure tomorrow is a good day for that. She slept undisturbed overnight.

Earlier after a breakfast of pancakes and fruit she told me that today she wants to put up the Christmas tree. We have a niece who has a party theme of “Christmas in July” around her newly rehabilitated back yard pool. (Jill lives five doors north of Sherlock Holmes. For those who read Sir Arthur you can deduce her address.) I have been keeping Cheryl apprised of the decorating progress as Jill has posted pictures on her Facebook Party page.

We went to Jill’s party last year. Of course we will go again this year. I will not remind Cheryl about her idea to put up the Christmas tree. I want to see if she remembers it for a longer period. (Overnight does not count. She often remembers her dreams from overnight.) And to be honest about it I do not want to put it up. Only I will be doing it and I have to rearrange furniture to do it.

So today I will live in terror of having to put up the Christmas tree. Or I could embrace it. The jury is still out.

Carpe Diem.

I Suppose it is True

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One cannot be certain where the day is going when the person you care about most is dealing with Parkinson, memory loss and rapidly developing dementia. I have not spent much time away from Cheryl in my mind lately but Edie’s words made me think.

NEVER REGRET A DAY IN YOUR LIFE: GOOD DAYS GIVE HAPPINESS, BAD DAYS GIVE EXPERIENCE, WORST DAYS GIVE LESSONS, AND BEST DAYS GIVE MEMORIES.

— from Edie Kynard (a friend on Facebook)

The past few days are oddly jumbled up in my head. Yesterday we continued to track down Cheryl’s cousins-that-she-has-not-seen-for-awhile and had lunch. We picked up Lois and in keeping with our plan went to eat in a restaurant we had not been to before. Wild Mike’s it was called. Sort of a cross between a diner and a sports bar. In Cincinnati how you tell that is the place sells boneless chicken wings, real chicken wings, hoagies and hamburgers. It was a good time and we stopped in with Lois for an hour or so and Cheryl went through her family reunion book with Lois.

This afternoon two of Cheryl’s friends came to visit for awhile. I went to the barber for a much needed tune-up. I enjoyed the camaraderie of the barber shop that I have been going to for 50 years or so.

In the evening I made dinner in the oven as rain was predicted and I did not want to grill out in the wet. We ate on the back patio waiting for the rain that never did come. Cheryl pronounced it good and ate most of it. We did not argue. We enjoyed a random conversation about plants and rocks and things in the woodsy area behind our condo. She told me about some kids in the trees that I could not see. I asked her what they were doing. Just hanging there she said.

And today, although it was not best, is a good memory. Tomorrow she said as I helped her to bed – I want to put up the Christmas tree.

Carpe Diem

Today Cheryl took my Breath Away

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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.

An Anagram for Heart

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I am happy to learn things wherever they come from. This morning working on the Wordle from the NYT I happily learned that heart is an anagram for earth. It makes me think.

I have often thought that I might have a touch of dyslexia. I have thought this ever since I learned what dyslexia is probably sixty years ago.

Early in our married life I would say that I have date dyslexia. By this I meant that although I knew exactly when Cheryl’s birthday is, I felt no urgency to react to the fact that my wife’s birthday was coming up in a few days. That is probably not the best example but it is one that I used often.

Maybe it is just numbers that somehow fascinate me. Even though they are in order I do not look ahead on the line.

Riding my bike today I stopped to take a picture of a plant that I did not know. A friend told me about “Seek” which is an app that identifies flora and fauna that you take a picture of. It works great when the fauna sit still.

Flora are easier. I found an American Black Elderberry. A quick search of Wikipedia revealed that The fruits can be used to make wine and jelly. I think there is a song that mentions elderberry wine.

One never knows where a snippet of knowledge will come from. The unripe fruit contains cyanogenic compounds but less so than apples. The Iroquois used the inner bark to treat toothache.

Enjoy the Earth around you.

Carpe Diem.

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

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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.