Love and Life

Physical and Mental

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These two aspects of the Parkinson Dilemma are frustrating from a care partner viewpoint. They are the source of laments and weariness. The grind can be debilitating in many subtle and unsubtle ways.

Physical disability is only recognized by Cheryl when she is so physically tired that she cannot stand up. And even then she fights the thought that she physically cannot do something. That something might be as little as getting up out of the chair that I put her in because I was worried about her falling. There must be a balance somewhere. So I help anyway without trying to be a helicopter helper and hovering about her space.

Her mental ignorance of her ability to do something – rare is the occasion that she will ask for help – is simultaneously frustrating and heartwarming. She wants to do it. If she starts it and I complete it she feels like she did it. (Ugh!) Her memory does not allow her to remember that I completed whatever it was. So I help anyway without trying to be a helicopter helper and hovering about her space secure in the fact that she will not remember and assured that it is unimportant for me to correct her when she tells someone – see what I did. (except when she tells the doctor.) Tee Hee!

Seize the day and make something new if things are not going your way. Parkinson is a progressive dilemma and in Cheryl’s case there is an element of creeping apathy. The meah factor appears as she loses interest in doing things – exercise, writing birthday cards, visits with friends, laundry, making cookies, taking down the Christmas tree and decorations and other things. A little push every now and then never hurts. She will not remember that it was not her idea if you are subtle with your pushes.

Today we will visit a cousin of hers who is in the hospital. She is uninterested in exercise class. The hospital will be a long walk so we will switch activities today. And then as we left the little lunch place and headed toward the hospital my son called with a request to pick up our grandson after school. More driving but out in the world today. We will go to the hospital tomorrow.

This is an old picture but it is how I see this woman, the love of my life, the place I am home. I see that smile less and less but sometimes early in the morning it peeks out of her face.

Carpe Diem even if you cannot.

Ago

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When we were young Cheryl was a very good seamstress. She impressed me by making me and the boys a couple of shirts. I have no idea of the amount of work, effort and skill it takes to make other items of clothing but the year she made us custom fitting flannel shirts for Christmas I was super impressed. I still have a couple. The rest overtime I managed to wear out and fray most of them beyond repair. I can tell you that there is nothing, nothing better than a well tailored shirt. If you have ever had a shirt made for you, shirts off a rack are never the same again. Although I never owned one I can understand why men could spend thousands of dollars on a hand made suit. No wedgies in your armpits or elsewhere.

Today for whatever reason she has decided the pillows need to be trimmed differently.  Here we are in Joann Fabrics. It is hard for me to understand what she is thinking. She has a hard time expressing her thoughts. It is overwhelming like a lot things these days. I really do not know how to help her.

The plan that I conjured was to get outside before the inclement weather turned up. Maybe a walk even though it is cold the wind is still. And afterwards we can have some lunch somewhere. It is Sunday and we have no plans.

But she found her stash of earrings when she was putting her clothes on. I was in full on waiting mode in my little office hide away hoping to not get frustrated and jump in to speed her up. This is January in Ohio and it has been weirdly warm for a couple weeks and that usually means the crap is coming. I became anxious and went back to check. She was messing around with her earring stash. I reminded her we were going to take a walk and have a little lunch somewhere. Oh yeah, that’s right said she. She came out of the bedroom with a bunch of her earrings in a box to take to the jeweler for repair that they did not need. I pointed out that it was Sunday and her favorite jeweler is closed today. She said maybe we could go sometime this week and I readily agreed.

Let’s go take a walk and get lunch. Okay she said.

That all went out the window as we got into the car and she told me about Joann Fabrics and pillows and fringe and trim and once seam binding. Happily I knew what all of those were but had no idea why she was telling me or what she had in mind. I had a lot of questions. I reluctantly drove toward Joann Fabrics instead of our favorite park to walk in. Switching from earrings to pillows left me dumfungled.

I drove to Joann Fabrics and later after we had absorbed enough of the ambiance, we went to a close by Cracker Barrel for salads and pillow talk. This was a soft talking day and Cracker Barrel was a bad pick for quiet conversation but they did have a nice wood fire going near where we were seated.

Later when we got home she showed me the green pillow that she had been talking about. I think she made this waiting for one of our kids to get big enough to be born. I do not remember which one but this pillow has been in our household for several decades.

Carpe the sewing project Diem.

A Nice Dinner

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We went to one of our favorite places to eat dinner tonight. Friday night with my girlfriend, best friend, lover, mother of our children and life companion. It was a good time. Christmas decorations are everywhere. People are visiting and gathering for the holidays. Bacall’s Cafe was loud. It was full of us old people chatting and eating and drinking and gathering. We were all catching up with each other and the world.

It seems to me that the smaller local restaurants have better service. Those restaurants seem to provide employment to the youngsters in the neighborhood.

Friday night has a special atmosphere. It always has for us. When we were younger and still working full time for others, it marks the end of commitments for the week. Often Cheryl and I would meet for a quiet dinner somewhere. Just us and our conversation was a special time to relax and take stock of things. When the kids were small Friday was often chaos. But those years passed by too fast and it was just us again.

These days I think that it is important to stay with her in her remembrances. If she wants to talk about long ago I try to stay with it. But I also try to gently steer her to the present if she has strayed far off the road. As we were driving to the cafe she asked me where I wanted to celebrate my birthday next week. — Her deceased father’s birthday is next week and her brothers had been talking about meeting for dinner somewhere to commemorate that event.

I am still on a learning curve with this sort of conversation but I calmly reminded her who I am and reiterated the conversation about celebrating her dad’s birthday. I switched the conversation to where do you think we should go? She switched it back to I wonder where Dad would go if he was here. And we went down that road for a bit until we arrived at the cafe.

AHA: Preserve any routines you can. Embrace any memories she has. Calmly help her find her way back to the here and now. Emphasis on calmly and watch the pitch and tenor of your voice.

Date nights are not always for the young. We had a long wandering conversation about the place we were eating. We talked about other places we have been. We talked about family. She had a coke. Years ago it would have been a glass of rose or white zinfandel. I had a gin and tonic. Years ago it might have been a nice single malt scotch. As we have aged we both like sweeter things. It was a good time.

As we were getting into the car for the drive home, one of her old time friends, Donna, called my phone. I almost did not answer. Robo-calls are annoying. Donna had gotten my number from one of Cheryl’s friends that she had met in church. She called to get together for lunch one day after the holidays. A new conversation about Donna happened on the way home. We will have lunch somewhere in a couple weeks.

Carpe date night Diem.

We Had a Frank Discussion

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We had an open and frank discussion about me, my death, if it was okay to date, how I died or was no longer here, Capgras Syndrome, how it was that her mom died, and other topics. I explained “impostor syndrome” and that I was not dead. it took a lot for me to not openly cry as I began to understand her terror at not knowing what was going on around her.

We talked about our love for one another. I told her I would never leave her alone or as best I could not let her miss anything important. We talked about memory and how scary it is to not know what is next.

She was anxious about being home but not thinking she was home. In the midst of that our upstairs neighbor, Joe, bought me a couple cans of beer. A couple days ago we were discussing an article in a local magazine about the best microbreweries in the area. He had found some of the stuff that won.

Cheryl added Joe into the discussion about how she and he were working on the same project at the house. We went around and talked about going home and Joe had brought her home last night. I said that when she woke up she was home? Even though when she went to bed last night she was not home? Yes she said.

I explained to her once again that we were home even though she was unsure that we were home. (Another nuance of Parkinson dementia). Capgras can occur with things and places also. In Cheryl’s case it happens with time.

She knew she was home now.

She seemed calmer afterward. It wore her out and she went to bed early and was okay with me helping her to bed.

Carpe Capgras Diem. (but what a miserable fucking disease.) (sorry)

More on Parkie Time

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There is lots of discussion about apathy and Parkinson. This morning I decided that Parkinson merely enabled Cheryl’s brain with a different sense of urgency or importance. Perhaps I needed to embrace that.

Last night as I coaxed her to bed her impostor syndrome was strong. We drove around for a few minutes and looked at the Christmas decorations while we “drove home”. It usually works and she thinks she is home. It did not work completely that night but she seemed to accept the fact that she was very tired and needed to rest. She went to bed with pajamas on the bottom and her normal daytime shirt on the top (just in case).

In the morning she slept late. When I woke her and got her going I pointed out that she had about two hours until her exercise class started, so she had to move it along unless she did not want to go. She refused to be speeded up and responded that I have been late before. She thinks exercise is important and wants to do it and enjoys it once she gets started. I know that it helps her too. But my sense of urgency and lateness is much different than hers.

I shifted my schedule to agree with her parkie time. My urgency evaporated along with my stress associated with getting her moving.

Small adjustments reduce stress

Carpe late Diem.

With This Ring

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With this ring I thee wed. It was a long time ago and I do not remember the actual wording of our vows as I slid the wedding band on her finger. Lately she has the delusion that her wedding band belonged to her deceased sister Janice and was give given to her by her mother for safe keeping. Last evening she told me that she wanted to give it to her sister’s granddaughter.

Stories and delusional narratives like this that she makes up out of whole cloth disturb me. And, at the same time, they are very interesting to me. They are a kind of window into her confused mind.

In the past few months, Janice, is on her mind a lot. She talks to her in her sleep. She talks to her in her head during the day. She will find an old photo of Eric or Kevin and remember Jan. At night if I awaken her when I visit the bathroom, she might say, “Jan, what’s going on?”

She mixes up her sister Nancy with Janice. Nancy was very close to Janice in life. That thought mingles the two sisters in her current mind.

Occasionally she will say to me, I should call Jan and see how she is doing but I don’t know her number so I’ll call Mom first. With people dealing with dementia and confusion the experts say to go with the conversation and accept what the delusion may be at the moment. I do mostly but I avoid promotion or continuation of a mistruth. I respond with, “Think about Jan for a minute” and she will say, “oh, yeah she’s gone isn’t she?” To which I respond yes, she is but you can still talk to her in your head. You can say Hi to your Mom too. (I always worry that it will make her sad. It does not seem to do that. She seems calm with the fact that she remembers her mother and sister’s passing.)

She brought me this photograph last night that she had found in her office. Her little note “Hoo? is this” made me chuckle. I still have that Hilton Head hat and occasionally wear it in the summertime. That is her shoulder off the left of her posty note. I have a gray mustache but Cheryl’s hair is still brown. I put it on my desk to look at and remind me where we are on this road.

I have no idea who took the picture. the print date on the back is June of 2006, so, it is pre-parkinson and his damned disease.

After we had been married twenty-five years we gave each other new wedding bands to commemorate the occasion. The inscription reads Cheryl to Paul 8-29-70/95 on mine. (This is so I would not forget our wedding date. We met on the 30th of August, so, I always have had a little mental confusion about the date.) Twenty-five years down the road her fingers were more robust as were mine.

Our 25th commemorative bands are larger. About a year ago she complained that her wedding band would simply fall off her finger and she wanted to get a chain to put it on to wear around her neck like a necklace. I took her to the jeweler and we found a chain. She later discovered her original wedding band and found that it fit again after losing Parkinson weight. She has been wearing it for many months.

In the past couple days she believes it to be Jan’s wedding ring.

Carpe Diem.

Janice

And Just When You Think

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…. that all is going great something misfires.

Different events in my own life cause me to remember stories from the Bible sometimes. The Bible is full of stories. This story from the new testament, Matthew, I think, talks about two sons reaction to something that their father has asked then to do. The first kid says, Yep. I will be there. And then he does not go. I suppose he goes off to hang with his bros. The story teller does not tell us. The second kid says, not today, Pops, I am hanging with my bros. But after his father leaves he goes and does what his dad asked him to do. The elephant in the room is, which kid did the right thing? The first kid outright lied to his father. What an asshat he is. The second kid did the right thing but was grumpy with his father initially.

It always strikes me that there is not a lot of lead in to this story and the following paragraph does not seem to segue into the story about the tenant farmers killing the owner’s son. But I have digressed.

Cheryl slept poorly overnight. When we saw her neurologist he made some adjustments to the meds that are supposed to help with her dementia and memory issues. This was the second night that she had taken the new dosage. She told me at one point her mind was racing. She eventually fell asleep somewhere between 2:30 and 3 am. I did anyway and she did not disturb me awake.

In the morning I let her sleep late by turning off the 7 am alarm. I started to tease her awake at a few minutes before 10 am. She eventually got up at 11 am. While I was waiting for her to get moving, I did a few things that had to happen:

  • stuffed envelopes with the ninety or so Christmas cards we send out each year and added a little newsy note like the rest of us that only communicate once in awhile.
  • wrapped some of the presents we purchased for the grand children and for some unknown child whose request was hanging on the giving tree at church last week.
  • balanced the check book because I forgot to do it on Friday
  • paid the property taxes because the escrow account said this was the day
  • helped her get out of bed and into the bathroom for meds and the the toilet
  • got her breakfast going and helped her out of the kitchen to get freshened up for the day
  • helped getting the shower going and made sure she was okay to take a shower by herself
  • rubbed the magic stuff in her hair after her shower and hair shampoo
  • made the bed

And on and on – making this about me in my head. It is easy to forget and add up this huge column of pluses and equate that with one unsought request. (sad face) Cheryl in the midst of all of this activity as she was combing her hair said the garbage needed to be removed from the small receptacle next to the toilet the receives last night’s protection and the occasional Kleenex tissue. It did not I insisted in a volume and timbre that was unnecessary.

So what does all that have to do with the Matthew mystery story. The first kid could have said, yes, I will be right there. I have this other thing to get rid of first. Is that okay, Dad? (Any reasonable father would have accepted this first step to rid oneself of the prior commitment.) The second son could have taken a deep breath and gone to do what his father asked. (He was apparently intending to do it anyway.)

I for my part could chosen either one of these two reactions to Cheryl’s need to have the garbage removed. I could have said I will do that in a minute but I need to finish this thing first without the snippy response or I could have merely removed the trash right then. I did remove it a little later. There was no reason for me to feel put upon.

Before that silly reaction by me all was well. Then suddenly something misfired.

Oh well. Carpe Diem.

Happy Birthday, Joyce

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Holy cow. For two old people we look good.

I talked to Joyce yesterday and wished her a Happy Birthday. She and I are last of our family still awake in the natural world. She sent me these pictures of her and I sent her a picture of me. Her friends went out to celebrate her birthday and she got to meet Santa.

I sent her a text message early in the morning and wished her a happy birthday. We are the middle two in our family. Our younger sister and older brother are both gone now. It is just us. She called me back when she was walking her Mexican rescue dog. We talked about everything and nothing while she walked her dog. I commented that the crows were far away this morning and she told me it was cold in Portland so her ear phones were under her hat. She sent me a picture.

I think it is important to have family around. When our brother passed out of this life a couple years ago in the beginning of the whole covid pandemonium from something else not covid, it left another hole in our family. When our younger sister passed away from cancer in 2008 she took part of me with her. I had been her stem cell donor. Dad died the year before our sister. Mom died a few years later. Now Joyce and I are left.

We both have the same Carhartt hat. How warm is that?

Happy Birthday, Joyce.

Carpe Diem.

You Don’t Know

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You do not know when you will learn something important. This seems especially true when care partnering with a dementia patient. Once in awhile I get a glimpse of how much Cheryl is struggling with her surroundings and may or may not understand what is happening around her.

Her friend Cathy came to visit her yesterday. They sat and talked about various topics. I left for a bit to do some grocery shopping and pick up a book from the library. When I returned we all chatted for a little bit as I finished cooking some goetta and packaging it for consumption later.

Cheryl experiences something called Capras syndrome. I only learned the name for what she seemed to be doing a few days ago. Knowing the name for something is not reassuring. My engineer head wants to know how to fix it.

A person with Capgras syndrome irrationally believes that someone they know has been replaced by an imposter. In some cases, they may also believe pets or even inanimate objects are imposters.

from Medical News Today – https://www.medicalnewstoday.com/articles/320042#symptoms

Usually this occurs late in the evening and she does not know who I am. Sometimes though she does not know where she is and has a strong sense of being in the wrong place. Yesterday when Cathy left she was unsure of the ending and as the afternoon went on she expressed the thought that she did not like staying in someone else’s house when they were not there. She thought we were at Cathy’s house. I did not catch on to her confusion until much later in the evening.

This site has information for professional care givers but I find their information useful. https://www.scie.org.uk/dementia/after-diagnosis/communication/conversation.asp The discussion about finishing a conversation is something I will pay more attention to when we have visitors.

Finishing– Just as you prepared to start a visit and conversation, so you must think about how you will bring it to a close. If you are leaving the person’s home, make sure you say goodbye. You should not leave the person thinking you are still in their home, perhaps in another room. This may cause confusion or anxiety.

Ensure you have their attention, smile, and let them know you enjoyed your time together and the conversation. Shaking their hand or touching them is a common gesture which gives them a strong clue you are leaving. Leave them reassured and let them know you look forward to talking again. If you are likely to be speaking to them very soon, for example later that day, say when you will return and leave a note close by indicating when the next visit will be.

from http://www.scie.org.uk

I do not do this as well as I probably should this many times a day. Sometimes she will come to look for me.

(For visits and visitors) When you are leaving the our home, make sure you say goodbye. Cheryl may think that you are still here, perhaps in another room. This may cause confusion or anxiety later. Ensure you have her attention, smile, and let her know you enjoyed your time together and the conversation. Shaking her hand or hugging her is a common gesture which gives her a strong clue you are leaving. Leave her reassured and let her know you look forward to talking again. She may want to accompany you to the outside door in our lobby area and check for mail.

Touch someone. How simple of a gesture. How much she is reassured.

Carpe Diem.

Black Friday

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This is a term associated with the Friday after Thanksgiving Day. (2022) We had been at Anna’s house. Anna hosted. Almost everyone was there. Cheryl sat at the end of the table near Anna. Anna read a wonderful prayer. I sat at the other end of the table near Scott and Gavin. A great meal surrounded by family was enjoyed by everyone.

Today – black Friday – Cheryl was a little down this morning after breakfast. She talked about not understanding what was going on about her yesterday.

She did not remember that she had forgotten being there last night as we went to bed and I talked about the meal and conversation at Anna’s house. — Last night as she was crawling into bed she asked about going to Anna’s house for Thanksgiving dinner. Without thinking I responded with we were there all afternoon. Do you not remember having dinner at Anna’s? Luke had really long hair. She became upset. She could not find that memory and it seemed that for a moment it terrified her. (I knew immediately I had made a terrible mistake of assuming she knew.)

She talked about “losing her mind” this morning. She talked about her granddaughters who were sitting all around her not understanding the surroundings. We had another moment were we sat for a minute to recognize the changes in her memory and cognition. (I am losing her more and more and she recognizes that and it makes us both sad.)

Thank you Lord for the moments we both still have. Even if we cannot remember.

Carpe Diem.