Order, Routine and Chaos

I have heard said that a police officer’s career is days of pure boredom punctuated with fifteen minutes of shear terror. As a caregiver to one with a chronic disease that tends toward dementia, the experience is similar.

This is a long story and I am not a hero to Cheryl. I let her down.

I lost it

It is August 26, 2022. Yesterday was a good day. At least it began that way. Cheryl slept a little later. I helped her get up at about 8:30 am.

Just a regular day was beginning. She had exercise class at noon. We came home to a leftover pizza lunch as was the plan.

She had been telling me about getting a new hanging plant at Pipkin’s which is a place that neighbor Jane talks about often. She also told me she needed new socks. I proposed we go do a little shopping in the afternoon and she agreed.

A trip to J. C. Penney ensued and we returned home via Pipkin’s garden store on Cooper Rd. As we pulled into the parking lot at home my pocket began sounding the alarm for her 4PM meds. She had been telling me that she was tired and wanted to lay down. I suggested she take her meds and rest for a bit.

There are too many distractions for a parkie in our condo-minimum. Cheryl first needs to check for messages on the phone (routine). These days only Hoxworth blood center leaves messages. Sometimes one of the Scam Likely folks will make a mistake and tell me how to save money with Visa, Discover and MasterCard or how to get better Medicare coverage. I am uninterested but Cheryl is worried someone might need her. The meds are ignored while messages are checked. The phone and message retrieval is an overwhelming puzzle to her. She winds up looking at her computer which is off. This leads her to notice the pile of old birthday and note cards on her desk from times past when she was organizing them. She remembers little of this so they are a new discovery. I reminder of her meds from the other room.

As I look back at this little episode I realize that it occurs often when we are home in the afternoon. She acknowledges the alarm on her phone and ignores the meds as she goes back to whatever distraction she has selected (order). I remind her to take her meds and hang out until I see her do it. She comes into the kitchen in response to my entreaty to take her meds. With that done I retrieved two frozen pork chops from the freezer to thaw for dinner. I explained that I intended to make pork chops, some roasted potatoes and broccoli for dinner. Perhaps I would make some tomato chopped salad also. She agreed that would be good and maybe we could eat on the porch.

I reminded her that she had wanted to lay down for a bit and retreated to the porch to read my book for awhile and let the chops thaw. I told Alexa to set a reminder for 5PM and continued with the adventures of Detective Sergeant McAvoy.

Alexa reminded me at five o’clock to get up out of the chair and prepare dinner. Coming in I heard Cheryl’s phone alarm reminding her to take her 5PM meds which is a blood pressure medication. When I entered the kitchen I saw that she had emptied the silverware drawer onto the counter and had several glasses of water set up on the other end of the counter. I wrongfully admonished her for getting at the silverware out and asked why she had done that. As she launched into her to meaningless explanation I should have calmed down and accepted it but I did not. I lost it which generated some rage in both of us. (chaos). I put the silverware drawer back together and began to prepare dinner.

She asked what she could do to help and I said that she could set the table outside on the porch. I reminded her that she wanted to sit out on the porch. She responded okay and went off to do something else. Since I was chopping potatoes and breading pork chops I quit paying attention to her while I was doing that. I realized eventually that she was going to set the table in the dining area and when I asked about that she told me that she would set both tables. She insisted that we would need more room for the kids. I must have been smoldering in the background because I flared up again.

The kids are not coming. No kids live with us. I said with louder than normal anxiety in my voice. And besides I only cooked enough for you and me. I put out place mats and plates and silverware and asked her to please sit down. The dinner was ready to come out of the oven and did she want water or a coke with dinner.

I busied myself with getting the food out of the oven and onto serving plates and bowls. When I started putting things onto the table she had wandered off to look on the back porch. She said David was here and I replied that he was not with more volume than was needed. We eventually sat down to the inside table. She served herself ½ a pork chop, some potatoes and broccoli. After she had put some gravy on her plate she started to get up holding the gravy boat. I took it from her and asked where she was going again. She was going to take some gravy to the kids. And I insisted that there were no extra people, kids or otherwise.

She became angry with me and left to get help. I sat for a minute or so and listened for the outside door to slam. It did not so I went looking for her. She had gone upstairs in the front hallway and I think became confused when she did not recognize the upstairs of our old house. I coaxed her down without her falling face first down the steps and suggested we go to the ice cream parlor for dessert. We ate dinner and I cleaned up the dishes.

Aglamesis’s for ice cream was a big hit. There were several little people there as always making swift work of their ice cream cones. She had chocolate chip and I had a two-fer dutch chocolate with choclate sauce and nuts and whipped cream. (I know but it was great.)

We went home and TV for a bit. And later as she became tired she was still agitated and worried about David. She kept looking for David. I suggested that we call David on the phone and we did. I did not give David any preamble but I did explain to him with Cheryl sitting there that she was concerned about his well-being. He talked to her for a bit and assured her that all was well.

After we hung up she said, “David is staying with David and Melissa? Well I guess they have plenty of room.”

Today that is all gone past but she did express a slight confusion about David staying with David and Melissa. Somewhere in the back of her mind was a mindfulness of her confusion and to her it was/is scary.

Sometimes it is very hard for the care partner to remain calm. I am still learning this.

Carpe Diem (even if you do not want to seize it.)

Janice in 2022

Tonight as she was going to bed Cheryl asked me some questions because she wanted to understand.

C – There is one thing that I really want to understand. So, I have a question.

Me – Sure. What’s your question?

C – Well I know Jan is in heaven so she doesn’t sleep here. Right?

Me – Yes that is right.

C – Well who sleeps there? she said as she pointed to my side of the bed.

Me – I sleep there.

C – Good. You sleep there?

Me – Yes.

C – Okay. Good night then. I love you.

Me – Goodnight. I love you too. I am going to unload the dishwasher and read for a bit. I’ll be in later.

This exchange left me speechless for a minute. Cheryl often thinks Jan is in bed with her. In the early morning hours she will call out to her. They slept in the same double bed as kids until Cheryl left to go away to high school. Even then they shared a bed in the summers.

When we got married she went from sharing a bed with Janice to sharing a bed with me. I had not slept with anyone when I was a child. I may have shared a room with my sister when we were very small but I do not remember.

Cheryl talks to Jan often. When Jan appears to her she is very real. A few nights ago she wanted to get her on the phone to talk about the upcoming Sunflower Walk/Run.

Tonight she recognized that Jan is in heaven. She has not recognized that for some time.

Janice

Carpe Diem.

I Want to go Home

A recurring theme in Cheryl’s head is “when are we going home?” I try at first to answer this by saying that’s good because we are already there. This rarely works. Sometimes it merely makes her angry with me.

The conversation is confusing when we reach this point. I can say to her, okay put on some clothes and we will get some lunch and come home. So, how would you find clothes for you in a place where you did not live? This is the first confusion but she accepts the fact that she has all her clothes here without accepting the truth of “home”. Even I am confused.

Later today, she is dressing now, we will go find some lunch somewhere and come home again.

Physical therapy is on the schedule for later this afternoon. Hopefully she will be tired after this activity.

Carpe Diem.

Laments – I Want My Old Wife Back and Maybe Our Old Life Back

The one who I could tease a little. The person who when I would toss a teasing barb at her would toss it right back and then some. Fifty plus years of marriage let you do that to each other. We had some great times. We had a lot of fun times. We always wish that the kids will have as great a time and Cheryl and I had along the way. We were never rich financially but there was always enough to make it work out. We were and are rich spiritually, socially, romantically and personally. I suppose that is what makes her mental state so disturbing and frustrating to me in this part of our life.

I can go back and forth, staying present and grieving what is lost to us. As I think of these things and reminisce I think of the song, “As Time Goes By.” There is a British TV show of the same name with Judi Dench and Geoffrey Palmer. It was one of our favorites. We rarely sit for long enough to watch any TV show. Any plot line makes little sense to her so she loses interest and gets up to go organize her office. It is her form of something called punding which is a useless and senseless activity that many in her situation do.

Cheryl was the one who was super organized. She kept the check book. She paid the bills. She was hawkish about getting and keeping and filing receipts for groceries and gas and any other expenses. She preferred to pay cash for stuff. If you did not have the cash in your hand, you did not buy it. When the kids were small we went to the grocery once a month and filled the larder. When it was gone you had to wait for it to come around again. There were some exceptions of course for milk and eggs and bread but generally you had to wait. The kids learned to be frugal. They were allowed to pick their own special things for school lunch and they learned how to make it last. Even when the children moved out to have their own lives we still shopped mostly once a month.

Cheryl knew how to use a screwdriver and still does but somethings that were second nature to her are now befuddling. How to open and what to do with an email. She once put all the family information into an Access database to print addresses for birthday cards, Christmas cards and anniversary cards. She knew how to drive that simple data system. She was used to putting together other databases and accounting systems for the clients she and others had in their small computer services company. It is hard now for her to wake up Microsoft Word to write a letter these days.

She was the one who did most of the household chores. I do that now and I do not mind doing it but she would if she could stand up long enough to do the laundry, make the bed, cook dinner, bake a cake or pie or simply vacuum the carpet.

Both her motor control and mental agility are greatly diminished and she is aware of those diminished abilities and it frustrates her.

She is the one who loved to hike. My favorite memory of this is a ten mile hike we once took in March many years ago. We hiked around a lake in a Kentucky State park. It was an eight mile loop and a two mile hike to the trailhead and back. We surprised some badge earning boy scouts about five miles from no where as we sat for a bit to enjoy the view and soak up the unusually warm March sunshine that day. It is a wonderful memory. We slept well that night.

She wants her old self back too. Who wouldn’t? Her sister passed way in the pandemic. Her sister also had Parkinson’s disease. Jan had other things going on that kept her from surviving the Covid wave in 2020. She still sees and talks to Jan. Tonight she sent her a text message. Tonight she does not understand that Jan will not answer but I might be the one who is wrong about that. Jan might answer. She often does – answer Cheryl when Cheryl talks to her.

Cheryl saw Jan at the table when we sat down for dinner tonight. I have no doubt that Jan was real to her. We discussed it. She decided to send her sister a message.

It is a powerful thing to see how strongly she was certain Jan would answer. It was moving to me. She went into her office to partake in a zoom meeting with some friends. She gave me her phone to hold in case Jan would call back or return her text above. These things sometimes break my heart. I try to keep them inside.

There is still time for new memories. I am sure of that. None of us knows when we are leaving this Earth. The best thing we can do is look for the good things, look for the humor in today’s situation. It is, however, difficult on some days.

An update after I published this about an hour ago. She came back from her Zoom meeting and remarked that she had not been out this late for a while. She wondered aloud how she would get home. I smiled and said that is the magic of Zoom, you are home. I gave her a tour of the condo.

Carpe Diem.

Comedy and tragedy are roommates

– Gilbert Gottfried

Teasing. Do You Want Some Coffee?

Cheryl does not drink coffee. She never has. I do. When I make a pot of coffee I ask her in a teasing fashion, do you want some coffee? I made a pot. She says, nope. No coffee for me thanks. it is a conversation we have had for fifty plus years. I love her. Sometimes she will ask for something else; tea, juice, Coke and I will get that for her instead. She seems to be back in this time and place now. Earlier she was not.

This morning that seemingly innocent exchange stuck with me. Her early morning sun-downers syndrome was staying with her and the sometimes accompanying hallucination was staying with her. It made me nervous. I had purchased a couple apple strudels from Marx Bagels the day before and kept them aside for a breakfast treat. Lately she is only interested in doughnuts for breakfast. That part of the breakfast was okay but she kept offering some to someone named Tim. Tim who? I asked as I had not heard that name before. Tim Fiebbig, I go to school with him, she said.

She thought the strudel was okay but she was hoping for doughnuts. I told her that if she really wanted doughnuts I would get some but do not leave until I get back. I zipped out to a nearby UDF for a couple doughnuts and some coffee. Back in a record fifteen minutes with three doughnuts and fresh coffee. While I was gone she sat with Tim in her office to chat until the doughnut man returned. She broke one up into little pieces and offered it to Tim.

In an effort to understand where she was in her mind I quizzed the siblings. This was (is) an elaborate illusion for Cheryl to set up a chair in her office so that she could converse with Tim her imaginary friend from her childhood. She did not seem puzzled that he was in her office. I hoped that it would pass and left her to talk to Tim for a bit. After a conversation of several minutes she came back out and sat with me to watch the morning not-so-newsy news program on CBS.

It is later in the day as I write this and she is still struggling a bit with the images and memories. Those seem to be easing and she went to shower and put on clothes. She seems to be back.

Some is, no doubt, grief caused by family circumstances. Paul Welch, our son-in-law’s father passed away yesterday. He had Parkinson’s disease/ Lewy body dementia also. An incredibly aggressive version apparently because he was only diagnosed about two years ago.

As we head down this road of Parkinson, it is helpful for me to understand what she is remembering. I am often unsure of what to do with that information. Sometimes I turn it into a conversation about that time in her life and let her reminisce for a bit. Sometimes it works and she gently realizes that she is reliving a memory. Sometimes it does not work.

It is a twisty-turny journey. My training many years ago as an engineer has been poor preparation for this time in my career. Spiritually it is a challenge. Engineers want to fix things. This appears to need a total redesign by the Chief Designer.

Carpe Diem.

An Icy Day in February

The puzzle is completed. Hallelujah! Kill the fatted calf. The Christmas 2017 puzzle is complete. So, now the question is what to do with it? I suggested that she break it into the tiny little pieces she started with and pass them on to her sister Nancy. She is still thinking about it but that is probably what will happen.

Who knows maybe this is a new hobby. It certainly is an occupation once it starts. Cheryl seemed very content while this whole process was happening. Cindy is an enthusiastic cheerleader and champion during the activity. I was not gone for a long time but when I came home they were puzzling away.

I started dinner. I had been out in the rain that we had ahead of the icy wet snowy crap that came today. While out I decided it was a good day for stuff soup.

Stuff soup:

  • 2 small onions chopped
  • several (5) carrots pealed and chopped
  • several (4) small potatoes pealed and quartered
  • several (5) stalks of celery chopped
  • a head of broccoli chopped – the stems are good in soup the flowers tend to disintegrate like peas.
  • the end of the bag of frozen corn (maybe ½ C.)
  • half a cup or so of frozen peas.
  • ½ lb. of mystery beef – bought out of the get rid of it soon shelf at IGA – chopped int ½ in. cubes
  • some whole wheat pasta for health reasons.

In a dutch oven put about 2 tablespoons of olive oil and dump in the onions. Stir them when they start to sizzle. Rinse the carrots and celery and when you are satisfied with the onions, let them brown a bit, dump in the beef. Brown the beef for awhile and enjoy the aroma. When the kitchen smells like a good diner, dump in the celery and carrots. Stir it up for a bit and put the lid on and give it a few minutes. This is a good time for a little salt and pepper to taste.

When you are ready dump in a box (32 oz.) of whatever broth you like. I used beef broth here. Bring it all to a boil and start the oven set to 300F.

Dump in the frozen peas, corn and chop the broccoli into small pieces. When it starts to boil again, dump in the broccoli and put the lid back on and stick in the oven for 30 minutes or so.

Add the healthy pasta at the end of 30 minutes and set the timer for 10 minutes more. Set the table and find some rye bread to go with everything. Put out the butter, bowls, silverware, etc.

Sit down in the kitchen to eat so that the puzzle can be viewed from afar. It is better to leave the dining table undisturbed. Speak to the small children attempting to mess with the puzzle even if you cannot see them.

Maybe I should look for the special table to build the puzzle on. I kind of liked having dinner at the dining table. We sat closer to the little apparition girls and I could chase them away as necessary while eating. The little girls seem to show up a lot at dinner time.

Everyone is smiles when the puzzle gets finished.

Carpe Diem.

It Must be a Terrible Thing to be Losing Your Mind

And be aware of what is happening.

These days Cheryl is certain that we are not home and wonders when we are going home.

In the background she knows she is home.

But maybe not.  Cheryl has lost most concept of time.  Calendar time,  Day of the week, hour of the day, time until the next event, how much lead time to get dressed or ready; all of these time conceptions are gone. She becomes angry with me reminding her how much time she has left. Maybe I am doing it wrong. She talked (and talks) in implication and inference but my conversation is direct. When she says she is going to do something I assume that she going to do it and I will reminder of her conversation, even help steer her toward her goal that seems to anger her sometimes. It is not my intent to anger her but merely to remind her what road she started out with and keep her on it to completion.

Little girls seem to come and go. The woman who takes care of the little girls seems to come and go with them. Others seem to move her stuff around. And then daylight returns.

Carpe Diem.

Spelling Bee

Early this morning as I came back to bed Cheryl spoke to me. Listening, I quickly discovered that she was not speaking to me. She was participating in a spelling bee.

The current word was “manage” as were the next three words. The teacher or whoever was giving the words out eventually moved on to anger, agree and message.

A cough awakened her and she asked me, what’s next?

I told here today was laundry day and I would make blueberry pancakes for breakfast.

I like blueberry pancakes, she replied.

Carpe Diem.

They are back tonight

The little people who used to visit are back. That is my own little joke. The little people never really left our home. I was merely ignoring Cheryl’s behavior.

They were back in a vivid sense to Cheryl. This chair arrangement is left over from their visit. She was showing them the pictures on the frame. She went into full on grandmother mode describing the picture to the kiddos.

I asked who was there and she replied Natalie and Max.

We left a little while later to got to our support group meeting. While there she asked if I had called home to make sure the kids were all right. Apparently they were more vivid than at other times in her head. When we returned home she looked for them.

We sat and watched Bob hearts Abishola which is her new favorite show. The kids seemed to be gone for now.

When I tell her that there is no one else here except us I feel as though I am standing in the back of a crowded room saying this to her.

Today, earlier, she asked me to rub her hair conditioner into her scalp. I do this once or twice a week when she asks. She referred to me as “Mom”. I had a little petulant moody reaction and said “I am not your mom.” She said, “No. You are my dad.” I replied that I was not her dad either, I was her husband. To which she said, “But you are the one I love.” (AHA! Edie) She merely could not pull the name and relationship out of her head.

It was another Aha-moment in our life together. It was a very important moment. All of my life as an engineer words have had a very specific meaning to me. Perhaps the words should not when understanding Cheryl’s needs.

Carpe diem — hunt for the special moments of insight and empathy. Those are special. If you miss them they may be gone forever.

This Morning a small Success

I got up at about half after eight. We had been up at 7AM for meds and she went back to bed. I knew she had not slept well overnight. As I got up and she headed toward the bathroom, I talked about what the days events would bring. We have nothing on the calendar except for the exercise class, I told her. There is no church today. Today is Thursday. Yes, she replied.

I went to the kitchen to make coffee. As the beans were grinding I went out to fetch the newspapers. When I returned I set the coffee maker to making coffee and turned on the CBS This Morning show while waiting impatiently for the coffee maker to complete its task. Finally after an arduous four or five minutes where the succulent aroma wafted through our small living area the coffee genie made its happy gurgle and later a tiny beep. I poured a cup. Heaven is fresh bread straight from the oven and fresh coffee made from beans ground only moments before.

I carried my mug to my chair purchased during the waning days of the Trump administration with stimulus funds. I restarted the DVR recording so that I would not miss any of the covid, border, weather or political disasters. I nestled in for the first sip and looked at the WSJ front page. I few minutes later I checked and she was getting ready for church. I was in time to head that off with a minimum of anger from her that “no one tells me what’s going on”.

As I headed that off I reiterated that she did have exercise class today and she should dress for that.

After enjoying much more of my mug of joe I returned to check on her. She reported numb fingers and she was angry about it because it was causing her to drop things – her watch – and making it hard for her to put in her earrings. She thought she had broken her watch so she selected a different one.

The watch she was trying to put on was one which she rarely wore. It has a clasp that is hard to visualize even with the new reading glasses I got recently.

Cereal for breakfast this morning and a new thing – checking blood pressure – because of the numb fingers were at the top of her list once she came out of the bedroom dressed and ready for exercise. We left for PCF right on time. And then as we approached the parking area, zip, unzip, zip again, unzip again, different zip, the same zip as previous over again — I asked what are you missing? My little pill bottle. I want to find a Hall’s she told me. I helped her search to no avail.

Damn! We are out of Hall’s.  It is the only,  absolutely the only thing,  that can relieve a Cheryl scratchy throat.  (I am whining a bit. I have tried to push other solutions.  All have been rejected, alas.)  The fact that we are out was interpreted by me over time after a discussion about the Hall’s being kept in the upstairs bathroom cabinet so that the hallucinatory kids would not find them. (Smiley face) But we are out. I did not register the out part.

Later at PCF we searched the purple multiple zippered perfect purse but, alas again, no Hall’s in the little pill bottle. It fact there was no pill bottle. Where is that? It is not in the many zippered bag.

I left Cheryl to start her exercises and I went to Walgreens down the street to stand in line behind three people grocery shopping at Walgreens while I hold a bag of Hall’s that eventually cost me thirty-nine cents. I should not be a curmudgeon about it. I own Walgreens-Boots stock.

Carpe Diem