Dog, Cup, Rainbow

Like many old retired folks we have a Medicare advantage plan. When I investigated these a few years age I came to the conclusion that the United Healthcare plans offered through AARP seemed to be appropriate for our needs. There have been several adjustments and realignments over the past several years and I am not in any way an insurance expert but so far the system has worked for us. United Healthcare has a feature that sends a nurse practitioner once a year to visit to check their clients if they want to participate. Participation is voluntary. Cynical me wonders what benefit the insurance company receives from visiting it clients but practical me says there is some benefit otherwise they would have no reason to pay a skilled NP to drive around the countryside to visit clients. There is no altruism in corporate america. I agreed to a visit by Whitney on Thursday of this week.

UHC Housecalls (Whitney) came to visit that day. We went through all the medications that Cheryl takes for Parkinson and my few meds for high cholesterol and too much eyeball pressure. There is a modified MOCA test – draw a clock, remember three words while drawing the clock. The normal blood pressure, heart rate and lung listening happens as in any wellness visit. There is also a clip on gadget and an app that runs on Whitney’s laptop that produces circulation information. Good news we are both alive! And one of us could remember the three words.

In addition to Whitney coming to visit, so did Nancy, a friend of Cheryl’s from church. In fact Cheryl has had a different someone come to visit every day this week. It has been busy and that tires her out.

Cheryl was showing signs of exhaustion on Wednesday. In the evening about 11:30 pm she needed to go home. I was heartbroken that night and tired myself from the time change. The impostor (Capgras) delusion seems to appear about once every two weeks. I put her in the car and drove her around the block. I am usually terrified that this time it will not work. This night it did (still).

Today it was hard but busy. Writing this on Thursday, I wrote that I forgot her pills at 1 pm.  Damn. That will mess up her mobility and her mind. Later on Thursday I noted — it is almost 8 PM and I think she is back to her normal for now.

Cheryl could not complete the modified MOCA test on Thursday. Today, Friday, she went to lunch with her friend Barb. The week of visits, no matter how well intentioned, is over.

Tonight we went out to get dinner at one of our favorite little restaurants. St. Patrick’s Day pub crawls where in full swing on Friday night. [Éirinn go Brách] The food was good and the crowd was raucous and loud. St. Pat showed up on the second day of March madness.

Carpe Erin Diem.

Scary Morning

Thank god for day light saving time.

I could not wake her up. Never mind that it was the first day of the idiot time change. We did not have to travel to have the powers that be declare it to be an hour different than it was.

Cheryl slept poorly two nights previously. I was excited to get her to bed without too much fuss. I could tell she was tired, very tired. At dinner she was hallucinogenic. She spent some time discussing dinner with a little brown haired girl who was inside her head and did not answer when she she asked questions.

With her walker I got her to the toilet and sat her down. I thought that perhaps we might not make it. I changed her clothes with no help from her. She would not or could not open her eyes. I dug out the transfer chair to roll her to the table in the kitchen. I got her to take her first meds one at a time. She was awake but not awake. Breakfast was a non-starter for awhile. I rolled her to her recliner and got her it it.

I turned on one of the Sunday morning newsy shows I saved on the cable box. I turned it up so she could hear it. And I watched her for a bit. I left her seated in recliner and did a few chores like dress the bed.

She was awake when I came back 30 minutes later. She was watching the show.

As the day goes on she relates periods of delusional thoughts. And as we talked about those things she has begun to exhibit lucidity.

It is a very very strange version of the disease of Parkinson that Cheryl has.

Carpe Diem.

Tonight for the First Time

Tonight at dinner for the first time she carried on a conversation with an apparition that she saw at the dinner table.

I invented a new recipe – Macaroni and cheese with chicken – she liked it. She even raved about it. Then she proceeded to discuss this casserole with a small brown haired girl that she saw at our kitchen table. We have a small kitchen with no external lighting so when I changed the ceiling fixtures a couple years ago I selected a couple of flat square LED fixtures that produce 5000 lumens each. It is bright. There was no child with us. There is very little shadow except directly under the small table we have there. I know the girl had brown hair because I asked. I asked Cheryl not the girl.

Cheryl asked her how she liked it. And then responded, “So, you are not going to answer?” after she had waited for a bit. To Cheryl this girl was very vivid. She did not look at me and recognize the astonishment on my face. For several minutes she quizzed the little girl about the food.

Eventually the little girl left us. I did not ask where.

Cheryl did not invite her for ice cream. We had that for dessert.

Cheryl did not sleep much last night. Her hallucinations are strong when that happens. It has been a very weird day. I tried to keep up with the strange conversation. Some stories are made up out of whole cloth. In “What Rose Forgot”, a novel by Nevada Barr, the writer describes that Rose’s memories fell into her head like rocks from a skip loader or similar analogy. In Cheryl’s case chunks of old career work experience, high school and her early computer system help with the grade school our children were in, sort of commingle in the narrative. A simple “ah huh” or “no kidding” keeps the narrative developing as we drive to somewhere.

In church tonight I noticed that she looked at the same page of the church bulletin all through mass. Somehow I could tell that the words were meaningless to her. It saddened me.

Carpe Diem.

Pieces of a Life

Cheryl has in her office files a phenomenal amount of random keepings of the pieces of her life and ours together. In her current state of Parkinson she will look through, take out, put back and reorganize these as she sees fit on certain days.

Pieces can come out of the office and land on the dinning room table for perusal and examination. A few days ago a real estate listing for our previous house appeared on the table papercliped to a receipt for home owners insurance for the first month that we lived there in 1980. If only I had been more interested in preserving the history of our small family I might be able to help her with discussions that begin “remember when… ?” I am disappointed in myself when I cannot help her. Much of that, for me, is lost in a fog of work, kids, school events, soccer games, parental worry, ( et al. ) none of which was collected in my memory with great detail.

I was adult then. Why can I not recall details like she can even through the mist of Parkinson? – although she has lost other memories.

Yesterday we went on one of our trips to a new place for lunch. She seemed to be doing well mentally and physically.

Tuesday we visited with her neurologist (MDS) which meant that Monday night through Tuesday morning she slept little. She was anxious to not miss the appointment. The rest of Tuesday and much of Wednesday was used up with recovery from lack of sleep, showtime for the NP, meds adjustments, pizza Tuesday with extra participants and simply mental fatigue.

These days her mind seems to have focused on Easter, so, much of our luncheon conversation centered on hard-boiled eggs, jellybeans, artificial grass and other items associated with Easter and Easter egg hunts. She ate her usual BLT and I had another sandwich with fires. We shared the fries. The Mason Grill was one of my favorite lunch places when I worked in my other career as engineer and Mr. Industrial Fixit guy. She remarked as we ate that she used to bring her Mom to this place and her Mom liked it. She reminisced about her mother and taking her to lunch when her mom was in assisted living.

Last evening she went to bed at the normal time and got up a few minutes later because her mind was racing around Easter services at our parish. She is unwilling to accept my premise that I will not let her miss anything important. I tell her this often. (In the background she recognizes that presence at church gatherings is not a high priority for me.) She sat at the dinning room table which has lately become her center of operations and read the church bulletin. She was very still staring at the bulletin for December 22, 2022. (I imagine inside her head her brain was struggling with Christmas : Easter : Christmas : Easter in a parkie way.) Words, dates and times lose their meaning in the evening.

I read my book for awhile longer and we went to bed at 11:15 or so.

Today I could not arouse her until 10AM. She was in the same position that she started in at 11:15 the previous night.

Another day passed.

Carpe Diem

More Food Therapy

The trips to restaurants continue.

On Wednesday March first which is the first day of Spring in my mind and always will be, we went to Ruth’s Parkside Cafe.

At 2PM in the afternoon there is little activity. There were a couple other gray hairs there enjoying the nice weather. The weather has been pretty mild this winter. There is a line in the “Bob hearts Abishola” show on CBS where Bob blames global warming on Al Gore because before him we were just enjoying the really mild winters in Detroit. It makes me laugh but I kind of agree.

The daffodils in the back are in full bloom. They are early this year.

Cheryl had a BLT bagel. I had a red bean burrito. The Cafe has an eclectic menu. For dessert the waitress was apologetic because they were out of pie so I selected gooey butter cake and two forks. I have linked a recipe that I found for this delightful dessert. It was the highlight of our day. Cheryl talked about the cake all the way home.

Carpe the restaurant Diem.

And Tonight We had to Go Home

Sometimes I can convince her that we have come home and we have not left the house.

On other days and nights that is impossible. No night is the same. On this night we had to go home.

I gently got her in the car. I was proud of the fact that I did not get upset. As we drove around the block about 2 mile per hour below the speed limit – the ride is longer that way – I kept up some chatter about various things. Some stories about upcoming events on our calendar.

As we drove in front of our regular Pizza Tuesday spot, she told me about being there last Friday with Paul.

As I turned the corner to climb the hill, I asked her if she knew the way from here. I got no response. As we got to the top of the hill and she began to recognize some land marks she said, “I live on the other side of all that.” (She was headed home in her mind.)

As we got close to our driveway entrance I said, “It’s good to be home. Isn’t it?” she responded, “Yes, it is. I’m tired.”

Dementia, Capgras and Parkinson were in full cooperation this night.

I fear that this little drive around the block reset ploy will not always work. That makes me anxious.

Maybe God will provide me with another plan.

Carpe Diem.

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.