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

A New Idea – Restaurant(ing)

A week and a half ago we stopped at an old Dixie Highway landmark called the Greyhound Tavern. We had passed it several times going to and fro when visiting her cousin Gerry in hospice. On our way home from our last visit with Gerry we stopped there at about prime gray hair eating time.

The reason was made up but we had a good time. Sherri had asked in conversation whether I thought the fried chicken at Greyhound Tavern was as good or better than the Purple Poulet where we had eaten a few weeks before. Well, everyone has their own personal likes and dislikes about comfort food. Cheryl’s mother made fried chicken and we ate it cold on a picnic in June in 1969. It was delightful. My aunt Johanna made fried chicken along with a lot of other stuff for Sunday dinner at her farm in Indiana. It was delightful. Long ago we had the KFC’s original recipe at the first place that Colonel Harland David Sanders opened in Corbin Kentucky. It has a little museum attached. It was delightful. (I have always liked original recipe.) But while I thought that the fried chicken at Greyhound was good, the chicken at the Purple Poulet was excellent.

While we were awaiting the arrival of our meal, we split the chicken since neither of us can eat half a chicken anymore, Cheryl said that we could visit various restaurants in Cincinnati and the surrounding area and eat lunch there. This is an excellent idea I replied. Let’s do it.

Today we did. Today’s choice was the Sweet Heart Cafe in Colerain township. We have been there before but it has been a year or so. There are actually about three stores operating out of this store front – a bakery, a cafe/diner, a clothing shop. It has a very unique ambiance and they make their own jams and preserves.

We brought home pie for dessert tonight or maybe the whole dinner.

A good list to start with.

Carpe – the diner – 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.

Physical and Mental

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.

When She’s Off

It is such an odd disease. Cheryl slept very soundly last night and because of that so did I. I do not remember awakening to visit the bathroom at all. I must have but I have no memory of it.

Today she seemed really good. She was struggling with a BM and I worried that she may be focused on that tonight. It is only 11:28 so there is still time but the “I need to go home” was strong. I tried another suggestion about asking where to turn and how to get here. She was not sure of the way. We got back from our little circuit. She was okay with being here. She told me to be careful when I went home. She pointed the way to Galbraith Rd.

She walked around the house while I garaged the car. She was still unsure of “home”. But it looked a bit like home to her. It seemed like I was winning. If I could have charted it, the pattern was more like the markets of the past few weeks – up, down, up, up, down – yadda yadda yadda. Hard to judge. Up? or off?

It was a constant running commentary to help her with PJ’s. I lied that I had reported where she was staying to her mother. I lied that her mom was okay with staying here. I lied that I sent and email message to everyone telling them where we were staying. I said, “I love you.” she replied, “I love you too, Jan.” She noticed her mistake. I ignored it. It is unimportant and she is very tired.

Eventually she succumbed to tiredness and laid down in bed.

The night is still young and the morning is not here yet.

Carpe Diem the connection to the addled mind inside.

Recurring Themes

There are days, and this may be one of them, when I wish for Cheryl’s physical Parkinson’s symptoms to be worse and her mental Parkinson to be less. She actually moves quite well with the C/L in her system during the day. If in the middle of the night she might get up to toilet once or twice she moves pretty well then too. She might be slow and slightly disoriented but at 3 AM I am too.

Late Autumn and Winter is the worst for her mentally. Last evening she stayed up very late; frantically organizing and reorganizing her papers and cards in her office. She eventually allowed me to help her to bed about 11:30 PM. I heard the clock strike midnight before she succumbed to sleep. She had been talking gibberish about the kids.

five repetitive themes

She is often confused as to who I am. I am that other Paul. I am Dad (as I was last night encouraging her to get rest before our big outing with Marilyn.) Some times I am Scott but if not she will ask, “Did Scott go home? Or, Is Scott here?” Some of this is simply aphasia and she cannot find a name in her head. (Me too, occasionally.) If I cause stress in her by insisting on something she will be very anxious about me being around. Insisting is always a bad idea but I often forget that. I try to hedge and let her decide she wants to – go to bed, eat dinner, have a cookie, have cereal for breakfast, etc. Often that works, often it does not. It can be frustrating when you are also tired.

“I want to go home now.” – She believes for a time often late at night that she is not home and wants to go home. Sometimes this delusion is overpowering and I help her find shoes and a coat and I drive her around a four mile circle and home. I reinforce the we are home thought by saying plainly, “we’re home now. I’m glad to be here finally.” That will reset her brain and she starts to think we are home. Sometimes it works only partially and she thinks – wow, this is neat. How did they get all our stuff here so fast?

Recently she has asked how we will get all our stuff home? Do we need to get some movers? I merely replied yes, I will call them tomorrow and set it up. — I wonder how long the “I will take care of that tomorrow” ploy will last. For now it does. She has not yet asked when I was going to call the movers in the morning while I am organizing breakfast.

“We are in Detroit” When Cheryl went to high school she was following the prescribed path to become a Franciscan nun. I met her originally in the summer between her junior and senior years in high school. When she was a freshman, a teacher she had realized she may have some potential in english or journalism and arranged for Cheryl and a couple of her classmates to attend a journalism workshop in Detroit for a couple weeks between her first and second years in high school. It made a deep impression on her. In many ways, when she talks about it, it was as though she traveled to a foreign land. And she thoroughly enjoyed every aspect of it. Her favorite TV show and the only one she really watches is a show called Bob (<3) Abishola which is set in Detroit. Watching the the show, she will tell me stories about Detroit but mostly I think she looks at the screen because some views will spark a memory.

“When are we going home?” Is her theme some evenings when she is sure we are in Detroit. I did not realize at first where she thought we were. I discovered this later through conversation. — I can respond, “We are staying here tonight and going home in the morning. Is that okay with you? It is late and would rather drive home in the morning.” Most times traveling along with this theme she responds with, “Yes that is a good ideas. We should rest first.” Once in awhile the Detroit delusion lingers until morning. It is often gone at breakfast.

It is time for office work — is usually a physical activity. In our second bedroom that became her office when we bought this condo she will spend time organizing. Or doing nothing. It is her version of punding. If she starts doing it at 9 or 10 PM there is no easy fix to getting her to be interested in sleep even when it is obvious to me that she is very tired. She takes a prescription to help her sleep as well as melatonin to help her fall asleep but her will is strong when she decides to – get this stuff organized. It breaks my heart to see her do this mindless activity. Last night I sat with her because the later she stays up the wobblier she gets but her confused mind will not let her see this in herself. In her brain she is a 35-year-old computer database analyst and the deadline is tomorrow.

These behaviors generally occur late in the evening. I sometimes succeed in not being Mr. Cranky Pants. This part of His plan sucks for sure. It is hard to be calm when the Plan has dumped on you and the previous night was smooth and uneventful.

Whiskey Tango Foxtrot comes to mind.

Carpe Diem.

We Had a Frank Discussion

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)