Great Unknowns

For the past couple days Cheryl’s watch has been missing. It is THE WATCH. As a routine each night we place the watch on what I call the little hat. It is actually a little ring holder that was given to her by Anna. She put her rings and her watch on it but a little more that a year ago I purchased for her a gold chain to wear her rings as a necklace. She had lost enough weight in her hands that her rings would fall off in the car or a chair or the restaurant. This last was the scariest.

But I have digressed. –THE WATCH – has been missing since at least Wednesday. Kathy came to visit on Wednesday. I first noticed that her watch was missing in action when I made dinner and Cheryl and I sat down to eat it. She is right handed so she wears her watch on her left wrist. I noticed it was not on her wrist but I did not say anything because sometimes she does not wear it. Later when we went to bed I noticed that it was not on the little hat. For a couple days I would surreptitiously search for THE WATCH.

About noon today as she was preparing to take a shower and I was searching, I found her watch. She often puts rubber bands on collections of random items in her office. Her watch was on a book shelf in her office near some items that had been banded together. My heart leaped for joy. (I have not been following my own rule of looking around her office to see where things might be.)

Lately, however, I have become anxious about Cheryl’s mental health. The watch story is not about that, it seems to me to be slowly worsening as time goes on. And I think that I am getting used to it. (That idea makes me anxious and adds a fear of not recognizing changes immediately.) My daily notes about bedtimes, falls and other behavior are no longer daily. I note falls and other anomalies. Bedtimes are between 9:30 and 10:30 typically. Her impostor delusion (a noted behavior) seems to appear if she is up later than 11 PM and disappears into her office to “work on stuff.” Last night was one of those nights. I drove her around a four mile loop in the rain as she anxiously gripped her purse waiting to get home.

She was okay with me helping to change her clothes and get into bed when we got back. She wished me farewell and safe driving home. I left the bed room and open and closed a few doors as though I was leaving. I took off my jeans and sweatshirt that I had put on over my pajamas to make the drive. I turned off the lights and gently eased into our bedroom as her husband coming to bed. It worked. I worry that one time it will not work. So far my fear is unfounded but I still worry because I do not have another plan except for sleeping in the living area on the pull out sofa-bed.

At one time in the past I asked her if she remembered any of that. I learned that a reminder in the morning of odd behavior is unwarranted and perhaps even stupid. Introspection of failed ideas is useful.

I still wonder (and worry) about her failing memory and confusion and general mental heath. And of course how to pay for it all should she need extra care that I am unable to give her. Maybe I need some counseling? Or something to ease my mind? Engineers spend too much time what-iffing the situation.

On the morning news the U.S. Congress spent much of the taxpayer’s dollars annoying the CEO of TikTok. That social media platform gets more time per average viewer that Facebook and Twitter. Alas when will we discover the unimportance of Facebook and other social media? … except as another form of 1960’s TV.

Carpe Diem.

Reflections

Sunday for me is a day of reflection.

As I loaded the dishwasher I thought of David our middle child. He and Melissa are not feeling well.

I thought about Anna as I started to write this. Perhaps I will call her later.

I sent a text to Scott and Mavis and asked about a do-over of our unsatisfactory Cracker Barrel experience. We were compensated by the manager with 4 free meals. Scott invited us for dinner instead. I volunteered dessert. It will be Cheryl’s favorite – pound cake. I cleverly ordered two box mixes when I ordered online from the Kroger near us. I rarely order from Kroger but I did the other day for pick up on Saturday.

Cheryl was worried about organizing an Easter party last night. She thinks Easter is tomorrow or next week. No matter how much I reassure her that it is not for a couple weeks yet she is worried about candy and small children and hard boiling eggs. I convinced her to sleep a little and we could do that in the morning. (I had hoped she would forget her anxiety.)

This morning as she was putting on clothes she made reference to those thoughts. I texted her sister Nancy since Nancy was part of Cheryl’s thoughts. Nancy came to visit for awhile. They talked for an hour or so.

Often on the weekend this road of Parkinson is disturbing for me. The dementia aspect of Cheryl’s Parkinson is disturbing for me. I wonder if there is a class or something I can do to feel more comfortable with helping her.

More reflection is needed.

Carpe Diem.

Anxious

What makes you most anxious?

This writing prompt magically appeared from Word Press. What makes me the most anxious is the fact that some new symptom or behavior will appear with Cheryl’s Parkinson and I will not be able to help her. Coupled with that fear is the anxiety that little techniques that I have developed so far will quite working. And lastly I will have to give in to the fact that I can no longer care for her myself.

Shaking off The “What Ifs”

Every once in awhile I get the what-if-I-did-this-instead-of-that in life blues (mood, meditation, discernment). They have been strong for the past couple weeks.

I suppose this winter has gotten me down more than previous. Cheryl seems more and more mentally frail as the PD/dementia progresses. I think that bothers me more than I want to admit to myself.

She has not seen the woman who lives in the corner of our bedroom for several weeks. Cheryl thinks her name is Jean but she is not sure of that.

The what-ifs instill a background anger. It is a sort of smoldering why-isn’t-there-a-fix mood. Perhaps it is time for me to find a shrink.

Therapy for me is to find a novel that captures and keeps my interest. I have never been one to stick with it if the story has wandered off into the weeds. Recently I read “A Man Called Ove” by Fredrik Bachman. It spoke to my heart and kept my interest. Ove was pretty down after his wife passed away but many of his neighbors kept inadvertently messing with his suicide plans and the story goes on from there.

Typically I read for an hour or two before going to bed in the evening. If Cheryl is awake when I come to bed I notice that she does not sleep well through the night. I let her sleep later and then feel guilty all day while I am getting her back onto her med schedule. And it creates anxious stress in me as I keep track of her medications more closely until she is caught up.

The medications only seem to work sorta.

Parkinson does seem to be endless and that starts to get me thinking about the What-Ifs again. There are no take-backs in this life but wow does PD suck.

I am hoping that she will get her earrings in in time for us to go for a walk in the sunshine today. I would help but that merely causes a spat. So far it is not looking good.

Carpe Diem. (And then she appears.)

This Morning

She was weepy as she toileted this morning. I asked her what she was thinking about. Could she tell me why she was so sad?

She had been worried that she would not wake up. I did not know what to say to her. I think the tears were relief that she had another day. (I have not dreamt of my own death.)

The tears were still coming during breakfast. Her sense of impending demise was strong. I hugged her for a bit while getting her juice and coffee cake. She seemed to relax and she focused on the newspaper. I went to watch the TV news and work the Quordle.

Later as she was getting dressed, she thanked me for taking care of her last night. I had to turn away and focus on my chores for Friday. I told she was welcome before I started to tear up.

Somewhere in the recesses of her cognitive brain she is pondering the future. It seems as though she does not see very far into the future. She has a much better vision of the past and sometimes the past is current to her.

And it rises to the surface upon occasion.

I think that the hardest part of this damnable disease is the rollercoaster of feelings, emotions and moods. I have written this before but it seems like one minute after a sane normal conversation exchange the train will go off the rails.

Today is developing into one of those. It is hard to keep the caravan moving in the same direction.

Moments ago when I asked if she wanted her bedtime pills, she responded , what for? It’s daytime.

Carpe Diem

It is February

February is a melancholy month. Thinking back to childhood, it is the coldest month. In four weeks it will be March. March is the first happy month. The world is waking from winter.

February is like the early morning. The care partner gets up quietly so as to not disturb the early morning peace. He stretches and puts on a sweater. He makes coffee. He opens the shades to see the sunrise. (Shifting person lets me step outside of myself.)

Cheryl is sleeping late. Early in the day yesterday she was showing signs of her impostor delusion so I got her out of the condo.

She is upset with the passing of her cousin Gerry. Janet, Gerry’s sister, called yesterday to report the news of his passing. We talked on the phone for a little while. I put the phone on speaker so Cheryl could hear and participate. All of us reminisced for a bit. After Janet hung up, Cheryl got up to get dressed. In that interval she became the person in charge of Gerry’s celebration of life. She decided she needed to pack for the trip. I helped her for a bit.

On the fly I conjured a tour of the countryside. I was not sure of where other than simply out. I sent a big long text to her brothers and sisters so they would be aware of her mental state if she abruptly called them.

We visited her mother’s grave. We had talked of this for a couple weeks. She often loses the fact that her mother has passed away. I struggle with ways to gently help her understand that I cannot take her to see her mother. For a moment yesterday she seemed surprised to read her mother’s name on the stone. It broke my heart to realize that this is the thing she cannot remember, her mother’s death. Cheryl and her Mom were very close. Her dementia was at the very beginning about five years ago when her mother passed away. I suppose I did not realize at the time that she had shoved this knowledge into a place where it was not easily retrieved. Gerry’s stay in Hospice and our visits to see him bought back a flood of childhood memories.

The written world and its words are a jumble to her. She told me that Mom would stay here until she is cremated. I drove her to another part of the cemetery where our niche is located waiting for our cremains. I do not think she understood that she had become her mom in her thoughts.

I let that go. I decided I was trying to fix an impression that did not need correcting. Often in her conversation she is a child, her mother, my wife and mother to our children and occasionally I become Dan, David, Scott or, in the very early morning, Janice all within the same five minutes of conversation. She wondered aloud if the cemetery office would know where Gerry was to be buried. I replied that Gerry was going to be cremated per his request and his remains interred in the parish cemetery in Kentucky. Oh she replied.

I started a conversation about where to go for a walk when we left the graveyard. She said we could go to Mom’s house and then corrected herself to say, “where Mom used to live.” Internally I smiled. It seemed to me there was hope. It is February and we are in Ohio.

I suggested lunch first, so, we discussed various places nearby. We landed at one of Ohio’s claims to fame, Bob Evans’s Farm Restaurant. There are a bunch. One was close by and it was the one she would take her mom to occasionally. While waiting for our food we chatted about various topics. I sent a text to my son David and asked if he would be home in the afternoon. We had forgotten our pie plate and the carrier and I thought to retrieve it. He lives far enough from us that Cheryl would get a sense of “going home” from his house.

When we arrived at David’s house a neighbor’s garage was on fire. It was several yards and a street away but it added a certain amount of urgency to getting in David’s driveway and added a discussion of events totally unrelated to Gerry’s death. Melissa made fajitas for dinner.

It was a good outing. Cheryl was exhausted when we got home. Later this week I may probe her memory of her mother. (or not.) This was a long rambling story about a day that made me anxious about her mental state which seems to be deteriorating quickly some days and some days not.

On this morning, the day afterward, she did not open an eye until I awakened her at ten o’clock. She had not changed position from when I got her into bed at just before ten the previous evening. She did not stir when I came to bed an hour or so later. She did not stir overnight when I made my usual couple trips to the bathroom. It seems as though she sleeps more lately but sometime she is agitated about something in the evening and when I ask she is unable to vocalize her thoughts.

Dementia and Parkinson’s are miserable companion diseases. (And they both suck.)

Carpe Diem.

Water

Dementia has many different aspects, one of which is belief that one has taken in liquid when one has not. Coupled with the anxiety about urinary incontinence and urinary tract infections, it is hard to convince her to drink enough liquid. Water alone is boring.

It is more and more apparent that dementia, memory loss and aphasia combine as a perfect storm to make it hard for her to tell me what she is feeling and what I can do to help.

Today we are caught between a UTI and anxiety about incontinence. The inability to move quickly to the toilet when needed is not providing any added benefit.

There must be some better way to deal with it all.

Carpe (dammit) Diem.

A Capgras Night

When impostor syndrome rears its ugly head in the darkness of night it terrifies me.

I became Scott at dinner time. I realized that when she asked me where Mavis was. I answered truthfully which confused her.

She has developed a story in her head about us owning a different condo unit and moving to this one recently.

She tells me that the paint job is great.

She wanted me to walk her home. We walked out the rear garage access door around the building and in the front door though the lobby past Jane’s door and in our front door.

She seemed to recognize her place. As we came in she said she wanted to visit Jane. We came into our condo and I helped her with her coat. I hung it in the closet. She wanted to visit Jane.

I helped her over to Jane’s condo and quietly told Jane that Cheryl was unsure of where she lives. Jane is a wonderful friend and recognized that Cheryl was in crisis. Cheryl stayed with her for just a few minutes – maybe twenty. She told Jane she was very tired and needed to rest.

Jane helped her back across the hall and told me that tonight and on previous occasions Cheryl remarked that she was very tired.

When she got in I asked her if she wanted her bedtime pills and she readily agreed. As we sat and watched TV for a bit while the pills took affect she asked me again where Mavis and Zachary were.

Now she is resting in bed about an hour early.

In this case Jane seized the moment and was available to help.

Sometimes friends carpe the diem.

Sadly this seems to be getting worst and I without knowing what to do seem to be doing the only things that can be done.

From the link above:

What you can do first

With any of the neuropsychiatric symptoms of dementia, such as Capgras, we always try behavioral and environmental interventions before medications. The following can help family members manage:

  • Don’t argue with the belief. That just makes the person angrier and more convinced they are right.
  • Go with the emotion. Acknowledge your loved one’s fear, frustration, and anger.
  • Change the focus or redirect your loved one. Try to distract them with an activity, music, or a car ride.
  • Agree to disagree about this belief. Remind them that no matter who you are, you love and care for them and are there for them.
  • Be creative. In some cases, the caregiver accused of being an impostor may be able to leave the room to get the “real” person, then come back in and no longer be perceived as an impostor.
http://www.michiganmedicine.org

I have not tried the last one but I might. This is the first time I tried walking her home which seemed to sort of work (but only sort of).

Cheryl takes donepezil.

Carpe Diem (another good link)

As much as I want to make a silk purse out of a sow’s ear this impostor syndrome thing is scary stuff. And it breaks my heart that God is putting her through this. The saving grace is that she does not remember these episodes.

(Update – Cheryl has reported a burning sensation when she urinates. Perhaps this prompted this particular episode.)

The Evenings are Hardest

With all of the memory, confusion, delusion and dementia issues that have come up in our life with parkinson, evenings put me on high alert for hints about where she is mentally.

Last evening was particularly troublesome and at the same time interesting about where her mind was. For the previous couple days she occasionally would tell me how much she liked this”place” better than the other one. When I probed a little bit I discovered that she seemed to think that we were trying this condo out before we bought it. last night she asked if we were going home tonight or if we would wait until tomorrow. (Carpe Diem!) I told her that I did not want to drive all the way home tonight. I thought it would be better for me if we slept her and left in the morning. She agreed that it would be better to get a good night’s rest before driving back home.

A different discussion started about what to take with us and when to pack. I suggested that we wait until the morning because any dirty laundry I could easily pack in a garbage bag. I would not have to be neat about packing. She said, or you could wash it in the morning before we leave. I readily agreed. There were two or three story lines going at the same time. There were condos in two different places, here and at home. But we were going there tomorrow.

It became important to inform her sister Nancy that we were coming home tomorrow. I sent a text message to her sister informing her that she might get an odd phone call in a little bit and to just go with it.

Cheryl decided to water the plants so that they would be okay while we were gone for a week. (Nice, we were coming back.) I kept my mouth shut and helped to fill the little measuring cup we use to water the house plants. The story was still unfolding as the evening went on.

It looked as though Nancy was off the hook for the phone call and I informed her about it. Cheryl shifted gears and called her other sister Debbie. (Smiley face) I did not see that coming.

I helped her dial the phone to talk to Debbie and scrabbled to text Debbie about what was happening. I was not fast enough and opted to talk over the top of Cheryl to quickly explain the purpose of the call. Deb caught on quickly and smoothly adjusted the topic to their cousin who was in the hospital and probably soon moving to a close by hospice facility. They talked about that for awhile.

When she hung up I informed her that I had texted Nancy and told her that if Nancy needed more information about where we were or our other travel arrangements she could ask Deb. Cheryl replied that she had just talked to Deb and that would work. (Another smiley face) She did not remember that I was in the room while she was talking to Debbie.

I better call Anna and tell her too. When our daughter Anna answered I said over Cheryl, “Just go with it.” Anna did.

It was a busy hour and a half with phone calls and plant watering but all was well an hour or so later when we went to bed. She got up once to visit the bathroom and eventually got up for blueberry pan cakes and orange juice at about 9 AM.

NOVA was a repeat anyway.

Carpe sundowner Diem.

A great sunset picture from the LA Times.

Longing for a Different Life

There are days when I long for a different life. This is one of them.

She did not sleep well last night.

She was more incontinent than ever before.

The shear repetition of care partner activities tends to grind.

Dementia can be debilitating. Those struggling with dementia do not know it.

Memory loss too. She becomes more frustrated as the evening wears on.

Conversation is tough. There are bright spots as stories are made up on the fly.

Delusional behavior is stressful for the deluded and the helper. Deluded minds have a different reality.

I suppose yesterday I was very tired. When she does not sleep, nor do I.

There was extra laundry in the morning and sometimes one needs to goof off.

There were extra things to do that day. I do not always feel like doing extra but it is still there to do.

It is relentless and constant. Relentless and constant.

So yesterday I longed for a different life and I do so every few days but yesterday it seemed worse somehow.

?

Carpe lament diem.