Friday – A Weird One

It started like a normal morning I got up at 7:30 or so and left Cheryl sleeping soundly in bed. I put the last of yesterday’s coffee in a mug and told the microwave one minute. I woke up the Wordle on my tablet and went out to get the paper. Someone, perhaps our new neighbor brought them inside the front door. I picked up Jeanne’s paper and her mail. She is 98 and does not go out much or downstairs much. I carried her stuff up to the bag she hangs on her door for that purpose. I noted that she had not retrieved yesterday’s paper from her bag. (Maybe I will check on her later.)

I watched the news on hurry up speed up as I had prerecorded it when it came on at 7 AM. There is still a lot of things going on that I have no control over. But at our little group of condos, the decks are fixed, the roofs are on and the trim is newly painted. The landscape folks want me to accept the quote for scraping snow and putting out ice melter. Winter is coming.

I started thinking about Cheryl, winter, gloomy weather, sundown syndrome and care partner stuff. About 9:30 AM I went to see if she was awake and ready for breakfast.

I found her in that in between sleep and wakefulness that we all experience in the morning. Usually my right hip tells me (You are old buddy boy. Move your ass.) to get up and move around. Cheryl and I exchange small talk and teasing for a bit.

“Do you want a kiss on your ear?”, I say.

“No”, she replies.

“What about on this cheek?”

“Okay.”

“Scrambled eggs for breakfast?”

“Sure.”

“Toast with grape jelly?”

“Yes.”

“Want any bacon?”

“Not today.”

“I am going to get your rollie chair. I will be back.”

She is more comfortable these days with me scooting her out of bed and into a transfer chair. We go into the bathroom for a trip to the toilet, pills and then into the kitchen for breakfast.

On this day when I sat her on the toilet she began to shake, sweat and cry a little. “My arms really hurt.”, she said. She initially complained about the toilet seat being cold. I ignored that because she often makes that complaint. Her hands and arms were shaking violently and I held the glass and straw for her to take the meds that I placed in her mouth one by one. We have done this before but not with the shaking action.

I had been gently rubbing her left arm as I helped her take her pills and she asked me to stop. She told me her arms were hurting. I got her a nsaid pain reliever that had been prescribed by her doctor for occasional pain occurrences.

It is a little chilly in Ohio this morning and although our thermostat reads 75 F in the bathroom it seems even to me a little chilly. In the middle of moving her from the toilet to the transfer chair, I got her heavy fluffy ugly pink bathrobe on her. I combed her hair and rolled her to the kitchen.

Apple juice, scrambled eggs and jelly toast later, the shaking and sweating were gone. Her arms did not hurt anymore. She still reports a little pins and needles tingling in her hands and fingers. The meds seem to be working but this whole episode was new. It began after I had gotten her out of bed with no complaint and onto the toilet, also with no complaint.

A cold toilet seat seemed to start everything. And that is very weird. Maybe I need a couple of these snazzy covers.

Carpe Diem.

I Suppose it is True

One cannot be certain where the day is going when the person you care about most is dealing with Parkinson, memory loss and rapidly developing dementia. I have not spent much time away from Cheryl in my mind lately but Edie’s words made me think.

NEVER REGRET A DAY IN YOUR LIFE: GOOD DAYS GIVE HAPPINESS, BAD DAYS GIVE EXPERIENCE, WORST DAYS GIVE LESSONS, AND BEST DAYS GIVE MEMORIES.

— from Edie Kynard (a friend on Facebook)

The past few days are oddly jumbled up in my head. Yesterday we continued to track down Cheryl’s cousins-that-she-has-not-seen-for-awhile and had lunch. We picked up Lois and in keeping with our plan went to eat in a restaurant we had not been to before. Wild Mike’s it was called. Sort of a cross between a diner and a sports bar. In Cincinnati how you tell that is the place sells boneless chicken wings, real chicken wings, hoagies and hamburgers. It was a good time and we stopped in with Lois for an hour or so and Cheryl went through her family reunion book with Lois.

This afternoon two of Cheryl’s friends came to visit for awhile. I went to the barber for a much needed tune-up. I enjoyed the camaraderie of the barber shop that I have been going to for 50 years or so.

In the evening I made dinner in the oven as rain was predicted and I did not want to grill out in the wet. We ate on the back patio waiting for the rain that never did come. Cheryl pronounced it good and ate most of it. We did not argue. We enjoyed a random conversation about plants and rocks and things in the woodsy area behind our condo. She told me about some kids in the trees that I could not see. I asked her what they were doing. Just hanging there she said.

And today, although it was not best, is a good memory. Tomorrow she said as I helped her to bed – I want to put up the Christmas tree.

Carpe Diem

Cheryl likes Cookies

Today is Snicker Doodle Day again. These are simple sugar cookies. I added a new twist and put in a teaspoon of almond extract into the cookies dough. (Maybe two tsp. next time) I also added a tablespoon of psyllium husk power for added fiber. Parkies need as much fiber as they can get.

This basic recipe comes from the Betty Crocker Dinner for Two Cookbook. Cheryl has been making these cookies for 50+ years. Her face lights up when I make them.

Carpe Diem.

Walks on the Beach and other Memories

Our selfie

When the children were small we began a tradition of making a trip to Myrtle Beach about once each year. The company that I worked for at the time used a pair of common vacation weeks which always landed at the end of July and the first week of August.

The company paid us salaried folks every four weeks called a period. The vacation weeks were the middle two weeks of the eighth period of the year. There were thirteen periods in a year and every few years a week was added to the thirteenth period to correct alignment with a normal calendar year. The Roman’s and later on the Pope would have been proud of Cincinnati Milacron.

Every year for 15 years or so our family went on vacation in the hottest part of the Ohio summer. Since my father worked for Milacron the memories of this vacation time goes back to childhood.

Cheryl liked to hike and walk. Not being an especially athletic person she substituted hiking and walking for any other athletic endeavor. At Myrtle Beach we would get up early hike the empty beach. It is where I first saw the green flash that occurs when the sun comes up over the ocean.

On other vacations over the years hiking was a big motivator. In every state park or national park or area that we stopped in walking and hiking was a major part of the experience. Maps were collected upon arrival and put to good use during the stay. In one Kentucky park our hike was about ten miles. It is without a doubt the thing I miss most with the onslaught of Parkinson. Her struggle to walk freely and move easily is disheartening. It was in many ways our main entertainment.

Conversation, discussion, debate, points won, points lost were all accompanied by a satisfyingly long walk. I think I miss those more than I can easily express.

Today my daughter and her husband took a long walk down the beach together. I was envious.

The hat

This time at the beach I am pushing her here and there. There are special wheelchairs for the beach and they are free. There is good ice cream across the road. I pushed her there too.

Carpe Diem.

Serendipity

One of our regular social gatherings is Pizza Tuesday. (Yes, I know it is supposed to be taco Tuesday.) Most times it is just a few of us, maybe 3 or 4. Occasionally Cheryl’s brothers and sister show up. Last evening in a moment of serendipity her cousin and many of his family showed up to celebrate their father’s birthday. Cheryl got a hug from her cousin that she really has not talked to for years.

Bob’s second wife died about a year ago and I took her to the funeral mass. We did not stay for the gathering after because Cheryl was not doing well that day.

Cheryl did not talk much to Bob. For one thing he was there to celebrate with his family in the big front room. For another although he may know of Cheryl’s on going battle with parkinson and dementia, he may not know how long it takes for her to get a thought out. Sometimes her thought is gone before she can vocalize it. I have been watching this for years. At home I merely wait.

Others have a hard time waiting so they want to guess what she is trying to say. Forming thoughts and then assembling complete sentences, keeping track of any names that need insertion is a hard task for Cheryl these days. I only help when I am very sure of who or what she is talking about and even then I can be wrong. Parkies can change topics in a heartbeat.

Last evening, however, was special and when we got home she wanted to do two things. Get Bob’s telephone number so she could call him and talk. And sit outside for awhile and watch the clouds go by to expose the moon and the planets. Venus is very bright and the moon is several days past its crescent phase. Watching the night sky lately seems peaceful for her.

I asked her siblings for Bob’s phone number. She now has his phone number for when she wants to call him.

As we left the restaurant her brother, as he often does, said to me thank you for taking care of my sister. My inner thought to him is I love her dearly and we made a vow to each other fifty years ago. What I say to him is “you’re welcome” and that bothers me sometimes. Some day I will pour my heart out to him. He is a good and kind man.

Carpe pizza Tuesday Diem

Photo by Kasumi Loffler on Pexels.com

Cheryl only likes pepperoni on her pizza but last night was a bruschetta night.

Scrambled Eggs

This was a strange morning so far.

Cheryl was interested (it seemed to me) in going to bed at the normal time about 10 PM. I helped her through all the normal changes and toileting. Afterward I sat up to read but could not wrap my head around the story I was reading. I came to bed at 11 PM.

After I laid down and got comfortable she started talking to someone. I thought at first she was talking to me but listening I realized she was having a conversation with whom – several people – she was seeing in her head. She has had these episodes in the past but not for some time. Last night and early morning her hallucinations were strong. At least three people were in the room – Nancy and a couple of smaller children and Zachary. They talked about church topics. They talked about playing. they talked about what was best to eat. They talked about books and stories. They talked about breakfast.

After an hour or so of this I got up. I must have gotten used to her murmurings and fallen asleep for awhile but I awakened at a little after 1 AM and could not return to blissful slumber. I got up and pulled the sofa-bed apart with the intention of sleeping in the living room for a couple hours but that did not work out as I heard her moving around shortly after I got up to switch rooms.

When I reentered the bed room she was perched on the edge of the bed trying to get up in her hop-hop mode. I helped her up and she needed to put her imaginary earrings on the dresser in our bedroom.

I suggested to her sleepy, dreamy, hallucinatory self that she sit on the toilet while we were up and she did that. I changed her overnight incontinence stuff and while I was doing that she saw imaginary wetness on the floor as well as several imaginary insects moving about. We captured the imaginary insects after getting off the toilet and searched for more. Afterward she announced that she wanted scrambled eggs and ham. I sadly reported that we were out of ham and I would have to go to the store the next day and fix that but I could do scrambled eggs and toast. She was okay with that modification.

I made her scrambled eggs at 2 AM.

After she ate we returned to bed. I did not hear the living room clock strike three but that may have been because I stopped its pendulum while I was laying on the sofa-bed earlier next to it counting the ticks and the tocks.

It is 10 AM and she is still sleeping and I am wondering how long to let her sleep. We plan to meet one of her friends for lunch today at 12:30 or so. And what should I offer her for breakfast. This day is starting out very hard for Cheryl and very slowly.

Carpe the breakfast Diem.

Like a Bunch of Random Boulders

What Rose Forgot is a novel by Nevada Barr. Rose, the main character, is struggling with mental illness and memory loss brought on by some unseemly characters in her family. Her granddaughter helps her through the dilemma that she finds herself in. But one line early in the novel stuck out – memories fell into her head like random boulders from a bucket high up all jumbled with no relationship to each other.

Cheryl’s conversation, especially in the evening, is much like that. Kathy came to visit her today and I noticed that her conversation and memories are like that during the day also. Kathy ignored any incongruities if she knew they where there. Had I been sitting near Cheryl I would have had to correct her memory of people and events. It is really, really difficult for me to not jump in to the conversation to fix things.

But I am getting better at it.

I am not certain that I got the quote right but the image is there. Random chunks of memory come into Cheryl’s head. It makes me sad. Sometimes she realizes that this is happening.

Tonight when we came back from getting ice cream at our favorite ice cream store, she went off looking for her Mom in our condo. I did not stop her or correct her impression. And, to her, perhaps, Elaine was there.

I am in pursuit of her calmness of mind. And I admit it makes me anxious.

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.

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.