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 Great Time

We went out with friends to a new restaurant. We had to be seated on the second floor. There was a ladies room on the second floor.

What a relief it was to us both.

Not the most appropriate opening to a story about going out to dinner with friends but parkinson makes the very small things in life into major obstacles. Those need not be obstacles but they can win out in the “Is it hard? v. Is it easy?” tug-of-war that enters the discussion whenever any social activity happens.

I have written about women’s restrooms and some of those experiences. This is not a blog post about that. This is a story about how truly graceful are friends that Cheryl and I have in our life and have had for half a century. It starts with an email from Jan in early December proposing that we gather for dinner somewhere for our annual holiday gathering. Cheryl used to refer to this group as the defunct bridge group because although we used to play bridge at our gatherings, over time we simply gathered for a meal and socialization.

Jan suggested a few dates in January and suggested collecting at her house or a restaurant somewhere. I immediately voted for a restaurant somewhere for two reasons; it puts the eventual clean-up in someone else’s bailiwick, it gets Cheryl into a social situation were she does not believe she is a burden to anyone. (Grace on Cheryl’s part, she does not want to be a burden.) And besides, Gary and Jan go to restaurants that we might never pick just because of unfamiliarity. She picked the Purple Poulet in Newport Kentucky.

In a later email after Jan had confirmed the reservation, she wrote that we would be seated upstairs and asked if that would be a problem to anyone (grace – Jan did not single us out). I did not respond to her email because upstairs by itself is unimportant. It does tell me what equipment I might need. It also tells me that I need to call the restaurant to understand restroom facilities which I did not do. (no grace for me) Somehow with our narrow life activities, I never got around to calling the Purple Poulet and asking about ladies restrooms. I am not shy about that idea merely incompetent in this instance.

Yesterday was January 20th, the day that had been previously selected for our dinner gathering. Sherry called to ask if we would like to come to her house late in the afternoon for a drink and we would leave from her house to go to the restaurant which was a thirty minute drive through the center of town. (Grace on Sherry’s part for offering extra time to socialize and catch up.) Sherry has a sister who also has parkinson as a part of her life. Her sister is living in an institutionalized setting but Sherry spends a good amount of her time there. Cheryl is comfortable in conversation with Sherry and Sherry understands Cheryl’s difficulty with mobility and mental agility.

After I accepted Sherry’s invitation, we discussed restaurant steps, parking arrangements and restrooms facilities and, oh bye the way, if steps and restrooms were a problem, why did I not speak up? (She left out – you fool!) Sherry is too polite for that last part. She did start dialing the phone. Pretty soon it was all settled. We would meet at her house and ride to the restaurant in Gary’s GMC Acadia. (Grace to Gary and Sherry.) Sherry suggested that if the Ladies was downstairs which was my fear, we would just deal with it at arrival. (More grace to Sherry – her words – I’ll just tell Cheryl I have to go and we’ll go together when we get there.)

I managed to get Cheryl to Sherry’s house before everyone so that I could put our car deep into her driveway and out of the way. I was successful and the evening was all set. Denny and Katy arrived a few minutes after us. Gary and Jan arrived shortly thereafter. Sherry had drinks and snacks. For an hour or so we were surrounded by just friends not Parkinson. What a relief it was to us both.

It is not often that we acknowledge the kindness and graciousness in our life. There is no excuse for that. Many explanations but no excuse. This group of friends surrounded us with love and kindness and helpfulness and grace. For a few hours we, Cheryl and I, could just be. (Thank you, all.)

About the Purple Poulet; I linked their website to the first mention of them above. For me at least and I think Cheryl would agree it was a great dining experience. The restroom on the second floor was marked Ladies on the door near our table but was in fact a well appointed handicapped restroom. I have been in many. I know.

The steps turned twice and had handrails on both sides. If there is no elevator the next best thing is handrails on both side of the steps and a gentle slope to the stairway. Up is never a problem for Cheryl. Down, however, is a perceptual problem as well as a physical one. A short gentle run of steps is much less intimidating than a long or steep straight run. (grace to the stairway designer.) I have not gone down a set of steps with Cheryl forward for many years. (Sherry managed the walker while I was helping Cheryl manage the steps down – grace to Sherry.)

We both had their chicken. On their website they claim “The Best Fried Chicken by Southern Living” – It was the best fried chicken I have had in quite awhile.

This morning Cheryl is still sleeping. I am not but I should have skipped that second glass of Robt. Mondavi that I allowed myself because I was not driving to and from the restaurant. (no grace to me – grace to Gary for driving)

Carpe – the best fried chicken – Diem.

And surrounded by grace is another reason to stay connected.

Grace to you, Denny, Katy, Jan, Sherry and Gary for letting us simply be us.

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.

Waiting

It seems to me that I spend a lot of time waiting for the next thing. I started this about a week ago. I did not know where to go after the first line. But late last night after I finally convinced Cheryl to lay down I realized that sometimes I am waiting for life to smooth out for a bit.

Care partners often do not realize how important it is to have relief.

I wait to find out if Cheryl is going to organize her office.

I wait to find out about if we are home or if we need to fix that by driving home.

I wait to find out if getting to bed is next or if this is a late night.

Things are more mysterious at night and I am tired and on guard against argumentative discussion.

Last night we drove around to get home again. Because I was bored I picked a different circuit. That was a mistake on my part. I realized my error after I turned and she said, “This is not the way.” Oopsy. Now she is concentrating on landmarks which caused me to start a running commentary about streets and where were. Luckily she came with me and said we have to turn left at the light.

One more street and we were looking at home.

Carpe waiting Diem.

From Luke

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.

A Nice Dinner

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.

You Don’t Know

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

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.