One More Thing

There is always one more thing to do, one more chore to accomplish, just one more job. The unpaid but highly rewarding job of care partner is filled with unrelenting detail and a never ending series of little jobs. The list is long. New things are added often.

Take some time to reflect. Cheryl’s creeping dementia does not allow her learn new things or compensating techniques easily. And she may not learn them at all. She might learn the reverse. Always be encouraging even as you as care partner become discouraged.

Carpe Diem

Enjoy the rest of it.

Whatever it may be.

Help where you can. Sometimes she will refuse the help. Help anyway.

Double Carpe Diem.

Reminders

Today I have taken notice of the necessity to remind Cheryl what she is doing and where she is going. On this particular morning I have reminded her that she was going to change clothes for exercise class three times so far. Once she is away from other distractions I relax a bit and wait for the next reminder time.

Today’s list of events

Starting sometime in May after I was into my care partnering seminar I started to post the days events on this handy piece of white plastic left over from some project. I read an article that gave some tips for helping those who are struggling with dementia. It spoke of using a small erasable white board to post events somewhere. There is one on the wall of every hospital room I have been in for twenty or more years.

I had this and it works for me. I even had dry erase and wet erase markers leftover from my teaching days. They were not dried up yet, so, I was set for awhile. Since May I have had to order more markers. This one is near the end of its useful life.

The family calendar became less and less meaningful overtime. Cheryl is no longer able to discern what week or day is applicable to today. I started transferring the days events onto this board the night before I went to bed. She reads it the next day and looks through the newspaper. Even though the date is printed at the top of the newspaper she cannot relate it to the date for today.

Dementia, confusion and memory loss is annoying to be sure but the silver lining is every day is new and fresh.

Carpe Diem.

Last Evening Discussion

Last night or maybe the day before Cheryl asked me whether we would have to get another booster shot. Covid-19 has drifted into the background since the death of E ii R and other news. I replied that no doubt someone was working on a new shot to address the specific variation of the virus in the same manner that a new flu shot is developed every year. We will ask Lauren when we see her in December.

The WSJ has this to say today about Covid -19.

Her commentary and question about the current covid vaccine challenge was mixed in with other comments about the many old Christmas, birthday and other holiday greeting cards that she has rediscovered and placed in a small basket crafted by my dad’s deceased sister Alberta. I still marvel at Aunt Bert’s skill. Cheryl marvels at all the cards that in her mind just appeared in the mail. Most are years old but they just came today.

Sometimes she replies to the messages contained inside each card on the card itself. Later when she reads her own reply, perhaps days later, it is new information.

Dementia is at least memory loss and everything is new and fresh. I have not been given that gift. Everyday is a new day even if it is Groundhog Day.

Carpe Diem.

Memory Loss

Lately i have been reading Gwendy’s Final Task by Richard Chizmar and Stephen King. I became tired of violent crime novels and this book claims to be the final volume of a trilogy. Perfect I thought. Stephen can be wordy although I think he is a good story teller. And Maine is apparently a mess, Castle Rock anyway.

Gwendy the main character is losing her memory and is very aware of it. She maybe dealing with beginning Alzheimer’s or something like it. It is disturbing to her. I wonder if it is realistic to think that folks like Gwendy or Cheryl or others dealing with a chronic illness that destroys one memory are aware of it happening. It is a scary thing to Gwendy in the novel. She talks of how names just disappear from her head and the struggle she has to get the thought back.

There is a lot more to the story but Gwendy is actively hiding her memory issues. Initially she forgets names and her neurologist and psychiatrist doctor has taught her a little memory association technique that helps her through most situations. And Stephen King has a device in his story that works even better. I wish there was such a device for Cheryl. I wish the device did not require the ending that Stephen has worked out for Gwendy.

More and more I hunt for memory tricks to help her. It may be too late for many of those to be useful. Getting out of the car I repeat, “One hand on the door and one hand on the chair and you are out of there.” I have little knowledge of whether that’s working but more and more she reaches for the car door inner handle and puts her left hand on the seat back to propel herself up to a standing position. She often does not need me to repeat it.

Maybe that is helpful. Repetition and repeated talking about what to do makes a new connection in her brain. I often repeat the ABC song in my head to find alphabetical order. The sing-song about the months never stuck with me. So, the connection does not always happen.

Memory loss is discouraging to the care partner. Memory loss is mostly unknown to the parkie that has it. It shows up constantly. — Who put these papers here? Why is someone messing with my papers? Those little girls are always playing with my papers. I better put my papers in my office and close the door. Substitute any valid noun for papers. She puts on two pairs of socks because she forgot to take one pair off before putting a clean pair on.

It (memory loss) destroys any planning skills. The holiday season is next week we better start making cookies. I don’t know why they keep moving the months around. When I see the doctor next week I want to talk about my medicines. (It is a December appointment.) Sometimes anger appears because people keep changing things around.

Fortunately not all parkies experience this memory thing.

Carpe Diem.

More Things I have Learned

After a sleepless night and an early rising at 5:30 am I begin to doubt my great idea of buying a new bed so we could sleep better. The last couple of nights have been a build up to last night’s insomnia.

After that experience I notice a couple of things. We are both on edge. She is upset that I am angry that she could not sleep and wants to offer an explanation. I am only-one-cup-of-coffee cranky and unwilling to accept any explanation made up out of whole cloth. As the day continues we will ease up and move on as we recognize that we both are very tired.

Most nights the big new bed has made a huge difference in our sleep. Lately I have been letting her sleep in a bit because it seemed to me that she was very tired in the morning. The LOUD AND ANNOYING clock did not wake her up. I think that will change.

I Have Learned

  • Kindness returns after 2 mugs of black coffee
  • Cheeriness requires more coffee
  • Grumpy can last all day if you allow it to.
  • Maybe listen to the explanation while getting more coffee
  • Get her to take 7am meds and get breakfast
  • If she wants to make Christmas cookies, let her.
  • Her conversations will wander all over the place when she has slept poorly.

Carpe Diem.

Organizational Techniques

This is such a good story I am unsure where to start. Had I been more alert to how Cheryl treated this book I could have foreseen the difficulties that eventually came to her and became much of my daily life. But seeing how she treats it now is unimportant and I flatter myself into believing I could helped her if I had been paying careful attention at the beginning.

About three years ago – certainly prepandemic – Cheryl was struggling with her birthday card organizational techniques. She had several old books of names. One of these was left to her when her mother had passed from this life to the next. When a new month was approaching she would collect these to her in her office in the evening to make a list of folks whose birthday was coming to buy cards.

When her mom was still alive she would take Elaine to the Dollar Store to buy cards to send out. She took this over in time for her mother and eventually kept it up after Elaine passed away. She did this, of course, in addition to her own birthday card list. So, one evening I noticed she had several old handwritten books that she was looking through to discover whose birthdays were coming next month.

She had entered much of this same information into an Access database that she had created during her working career to help her and her mom keep track of things in an organized and businesslike manner. Cheryl was an extremely organized business woman. The most disheartening thing for me to watch as this disease progresses is her loss of organization and control. If the disease was merely physical it would, I think, be easier to deal with.

Nevertheless I put on my engineering hat to help with different methods to enhance and at the same time add ease to the organization of the birthday cards. In a second career as a high school science teacher which never completely panned out, I discovered a wonderful organizational tool that teachers use and might very well be adaptable to Cheryl’s needs. Teachers use a weekly planner to help with organizational tasks and as I discovered with my small experience, to keep track of how far behind you are with the course material. Usually these are dated with the year but at Staples I found a wonderful version that in addition to having only two days per page was lined and printed in a 8.5 by 11 format had no year printed. It could be a yearly calendar of birthdays, anniversaries and other information without concern for the year or day of the week.

The doomsday algorithm would give you the day of the week. Look it up. It is pretty neat.

She had been struggling with organizing the birthday cards. I suggested she use this yearly planner. In the store, she agreed that it could be a useful tool to organize the activity. I was proud of myself for finding such an elegant solution to her dilemma. Being the ever helpful hubby I produced from her Access data a list that I could put into Avery’s online printing tool and produce the information for the dates that were known. New information would come along with use and could be added by hand as the years evolved.

Almost a good idea but my idea therefore NIMBY and NIH reared their ugly heads in unison. And I, not to be defeated, began to defend my method to a woman who spent her working career in computer databases and systems analysis, as she, slowly crept into memory loss, confusion and dementia. What a hoot! I completely and totally missed the AHA when it went by about two years ago.

How to help without helping? I continued for many months to reconsider and think about how to make the Big Black Book useful to her. In her old multi-book system she looked at a single page to discover who had a birthday that month. An index my engineering mind shouted at me. You forgot to make an index. I thought about that for awhile and realized that the planner was organized by month, not day-of-the-week, not year, only day of the month mattered. It was self indexing. I was at a loss as to how to fix her thoughts.

I quit concerning myself with instructing her on how to use it. I just rolled with her confusion.

Over time the preoccupation with getting out the birthday cards dissipated. Other thoughts of how to help her organize it left me. I became an observer. She always tells me, if I don’t do it myself I can’t improve. She is right. I am merely her aide.

Carpe Diem.

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.)

How Big are You

Author and futurist Robert Anton Wilson on the size of a person:

“You are precisely as big as what you love and precisely as small as what you allow to annoy you.”

Source: Nature’s God

— from James Clear’s email

This appeared from James Clear in his email newsletter.

It spoke to me. Deeply.

I do feel small when I allow Cheryl’s disease to become her. It boils over into anger and guilt. I forget often that she is not her disease.

She has been getting physical therapy to help her with movements like getting out of a chair. Sit to Stand is the notation on the PT’s notes. This motion is natural to non-PD people. One does not even think about the mechanics of it. Cheryl has to think and remember the sequence of moves. Depending on the time of day and how she is feeling, thinking and memory are difficult. So she simply cannot remember how to get out of a chair.

When she has fallen and when she falls it is always backwards. I encourage her to lean forward at her waist and push off the chair as the PT told her. Nose over toes is the mantra. But in view of anything, walker, table, person, nearby grab bar or whatever grip, grab and pull easily win over N-O-T. I encourage by telling her where to put her hands and how to position her body. She responds with don’t-tell-me-what-to-do anger. I respond in kind and then feel bad because I was to her unkind.

I love her dearly (big). I am annoyed with her disease (small) and I allow it to be her (smaller).

My personal reason for writing this is to hold that idea up in the light and discern how to be better next time. I am grateful for all the next times even though anger anxiety and anxiousness might creep back in. It is hard work and I am not that good at it.

Time to meditate and ponder with deep sagacity.

Carpe Diem

An August Evening

Rainy days in August have produced sundowner’s confusion and dementia. On this particular day it seems a bit worse.

Cheryl has had a particularly busy week. Two physical therapy visits and an exercise class happened this week. On Monday evening our HOA board had a meeting to discuss maintenance schedules and what new projects we could take on with the money on hand. Jane came across the hall and sat with Cheryl on our back porch while I attended. (Jane is a wonderful neighbor.)

On anything goes pizza Tuesday we had dinner with our neighbor Jane as usual and in addition our new upstairs neighbor Joe joined us. Joe moved into the front condo over the garage spaces. Much of getting to know you conversation happened. Cheryl knew of a woman which she attended high school with who had the same last name. Her name was Kathy. As it turned out she was Joe’s younger sister. Jane’s husband used to play in several bands when he was still alive many years ago and Joe’s last name was familiar to her also. As the story developed it became apparent that her husband John had played in a band with Joe’s father.

It was a great getting-to-know-the-neighbor conversation. There were lots of memories for Joe and from Jane and Cheryl. When we got home Cheryl was exhausted.

Wednesday, I had arranged for my cousin-in-law, Linda, to come and take Cheryl to her physical therapy appointment. I went to visit the lab of a local community college program that I am still involved with. That facility is twenty minutes or so down the highway and I was gone for about two hours. We later met back up in a local diner for lunch.

Thursday it was my intention to attend a exercise-for-care-partners class at Parkinson Community Fitness after Cheryl’s twelve pm exercise class. I had previously arranged for my daughter to pick up her mom so that Cheryl would not have to stay. I found out my class was canceled at the last minute so when Anna showed up we all went to lunch. Our grandson Max was with his mom and he showed off his new laptop he purchased for college. He will start in a couple weeks.

I had hoped to ride my bike for a bit so Anna and Max remained with Cheryl. Alas, the weather did not cooperate. As I entered our condo Anna was helping her mom sort coins. These had been residing on the dining room table for several days but the project was several weeks old. Cheryl found them back in her office a few days ago. Cheryl told her daughter that when they were finished they would give the coins to her dad. She used to help her dad roll coins from his gas station business many years ago.

Max was frustrated with his new laptop. The camera no longer worked. What ensued afterward was a chat via the internet with some Microsoft expert and ultimately a complete reload of the operating system. That seemed extreme to me but I am an old retired electrical guy whose been fooling around with systems, software and computers for fifty years or so. We are living in a new age now. Ultimately it was discovered that Lenovo had placed a privacy slider to cover the camera on the upper edge of the case. It was a mechanical failure or an operational one depending on who is characterizing the action.

On Friday I was still hoping to ride my bike and the weather was still not cooperating. Cindy came anyway And I went to get a haircut and run a few other errands. I returned about an hour later.

This whole week was generally gray and overcast. It was not gloomy like the wintertime but gray and rainy nevertheless. It is still rainy and poopy outside as I write this.

The rest of the day was filled with visions and stories of her family. She was looking for Scott. Later in the evening she told me a story about Easter eggs, coloring them and Mavis. She eventually called our daughter-in-law Mavis to ask about what her objection was to coloring Easter eggs.

Earlier in the evening she asked, “Where is Ken?” I told her that Ken was probably home but I was not sure. She should call him and talk to him. She did not take that suggestion.

It was a frustrating afternoon and evening for me. Later I realized after she had exhausted herself with a very busy sundowner episode that for the first time this week only I was here with her and she could relax and let all that out.

As she laid in the bed she asked me to make sure the kids all got home okay. This morning she slept until 10 am.

Carpe Diem.

Old Married Couple

It occurs to me that old married couples have heard each other’s stories many times. Idle pleasantries between acquaintances and friends usually lead into a story about some past experience. It is harder to do with old married couples. They have heard the stories. Often they both participated. Aging and PD memory loss have changed our conversation about trips, children, childhood, food, children’s sports, many things.

I am a pretender often. She may forget who I am as she is talking. She may forget I was there; an hour ago, a week ago, a decade ago. I might forget I was there a decade ago. She wants to remind me of someone else from her childhood, someone I should know.

I work on my small talk with her because she will find a story from her childhood and it is calming to her to tell me the story.

As I think past all of that and how I can help and respond to Cheryl I still worry when she says to me, ” I’m ready to go home now.” She does this near bed time.

Lately she seems to merely mean that she is tired and wants to go to bed and rest.

Carpe Diem.