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.)

Not For a While

Posted by AdjunctWizard

She fainted this morning. She has not fainted for a long time. Orthostatic hypotension. In Cheryl’s case in the past she would faint sitting at the table after breakfast. She reads the paper and absorbs her Cheerios and occasionally faints. But she has not passed out for a long time. She takes a pill intended to raise her blood pressure. I started this post on August 11. As she exercises in front of me on August 23rd I am finishing my thoughts.

Breakfast is/was monkey bread. A local bakery makes a coffee cake composed of balls of sugary dough rolled in butter, brown sugar and cinnamon. These are pressed into the pan and allowed to proof. They call it monkey bread. A different small neighborhood bakery I knew as a child called it by the less imaginative title of “pullapart”. It is easy t make. It contains a lot of sugar which makes me wonder if that or some other carbohydrate metabolism reduces her BP.

She is generally a little foggy after a fainting episode. Her shower and dressing afterward needed instructions and encouragement. It is exercise class day and I will not let her miss it. I am a stinker about that but exercise always perks her up.

Exercise is seated cardio class introduction. There are a lot of dance moves and some upper body boxing style motions. The idea is to raise your heart rate into what experts call a cardio workout. It is a new thing for Cheryl. the leader, Joelle, is a substitute today and she teaches this style of exercise class on two days that Cheryl does not come to PCF. On the way home Cheryl told me she liked the exercise class. I can get her to exercise class four times a week.

Makes me cry to see her going again, especially after I had to lay her on the kitchen floor to recover from her fainting spell about 2 hours ago. Joelle is playing “Summer Wind” by Frank Sinatra on her Bose speaker laying on the floor of the exercise area. This music is nostalgic for me. I used it for background when I put together a slide show of pictures from a cruise trip we took many years ago that was purchased for us by our daughter and her husband.

When I got home today I looked high and low for pictures from that trip to insert here but, alas, I am a poor filer. The pictures are somewhere. Maybe.

Carpe Diem.

How Big are You

Posted by AdjunctWizard

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

Overnight at the Lodge

Posted by AdjunctWizard

A few days ago the kids and grandkids camped at a nearby state park. Cheryl knew about it. They had exchanged text messages back and forth while the planning went on. I did not talk seriously to Cheryl about it until the day before. If I give her too much to think about she becomes anxious with the planning activity.

I suggested we could stay overnight in the lodge there and visit the kiddos at the campground. She readily agree. I called the lodge desk and THEY HAD HANDICAPPED ACCESS rooms available. I did not ask about their cancellation policy. I was hopeful that Cheryl would still be interested in visiting the kiddos campsite when she woke up tomorrow.

The next day we went. It was a great day. I got the big bed pad out and packed it on the bottom of the big suitcase with extra incontinence solutions so that Cheryl would not have that anxiety all day long. On top of that she packed clothes for a week. Girls need choices. I packed a change of clothes in the little bit of space left in the suitcase.

We got there about 3:30-ish and found the room. I texted David and found out where their camp sites were and cruised through the campground twice after misreading the signs the first time through. We found them unloading coolers and tables and chairs and other stuff. Everybody was busy with something so I parked in an empty campsite across the little drive through the camping area. Luke was loading a cooler with soft drinks. Anna, Laurencia and Virginia were making quick work of erecting a couple tents.

Good times were soon to be had. Frisbee games were unloaded. Eric and Max tossed a baseball back and forth. Corn hole was set up. It is not camping if there is no corn hole set around.

There was great camp food. Our son, David, with Cheryl’s help, current veggies and sausage packets to place on the fire. Cheryl had a great time participating in the food preparation. For a short while she was Mom again. She was talking and cutting. Dad was hanging out with the grandkids and the other adults.

We had some great conversation around the campfire. Parkinson disease interlaced with dementia takes most of the spontaneity out of our living activities these days. I had forgotten about that. I am sincerely grateful that Cheryl was feeling good that day and evening. We both miss the spontaneity of retirement.

And grateful that some of our hoped for spontaneity in retirement was there that day. Twenty-five years ago we would spontaneously decide to disappear on the weekend and hike in the woods or explore some little town we had not been to before. Once we stayed overnight in a bed and breakfast in Chilicothe, Ohio and the B & B was being run by others because the owner was going to Columbus overnight for a cancer treatment. So, we stayed overnight with strangers in someone else’s house. It was amusing and fun and spontaneous.

Carpe diem

The Art of Marriage and Care Partnering

Posted by AdjunctWizard

An empathetic and caring atmosphere for your partner with Parkinson and dementia, like a good marriage, must be created. In the art of marriage the little things are the big things. The same is true for care partnering. Small things are meaningful to both.

It is never being too old to hold hands. Physical touch is a comfort. Holding hands and helping someone you love up a step or into the car or into a chair at the restaurant is a sign of love. Doing those things without complaint and without request is a sign of grace. Look for grace in your life.

Remembering to say, “I love you” at least once each day to a spouse who is also graced with a chronic disease is reassuring. She did not ask for this disease. Reassure her that she is not an annoyance to you by saying this often. As a care partner there will be times when you do not feel that way in that moment, breathe deep and remember how it was and use those thoughts to see her as she is now.

Never go to sleep angry. Anger is available every day. It has no place in the bedroom at night. (This may be the hardest lesson to learn.) Just remember that everything seems worse at night. Sleep later into the morning hours. There is always light after the darkness.

Discussing and having a mutual sense of values and common objectives that are important to the partner who is burdened with Parkinson is essential for helping her to manage the disease. Occasionally anxiety creeps into my thoughts and voice. When that happens I become a naggy care pusher and not a helpful encouraging care partner. If you can, resist becoming a naggy care pusher.

We are standing together facing the world. This is a joint effort. (A platitude – many hands make for light work.) Care partnering is forming a circle of love that gathers in the whole family. It gathers in your circle of friends. It affects the person with Parkinson directly both physically and sometimes mentally. Parkinson is a change. Parkinson is not a purgatory.

Care partnering is speaking words of appreciation and demonstrating gratitude in thoughtful ways. These words are exchanged in both directions. These words are not expected. These words are freely given.

Care-giving has the capacity to forgive and forget. Give each other an atmosphere in which each can grow. Share your thoughts and ideas with each other.

Find room for the things of the spirit. And when the spirit moves, search for the good and the beautiful. Keep on the lookout for those “Aha” moments to learn from.

As it is with marriage, care-giving is not only partnering with the right helpmate. It is being the right partner. Parkinson’s sucks is the phrase Michael J. Fox uses. By helping each other PD sucks less.

Carpe Diem.

MMXXII and Enjoy the Moment

Posted by AdjunctWizard

Tim Scott has a new book. It has just been published so he is making the rounds promoting his new effort. Perhaps merely because he is intelligent and half of the Senate representation from South Carolina but probably also because he is black and Republican, the CBS Morning newsies cannot resist asking questions that have little to do with his book.

To a question about whether he was considering a run for the Presidency of the U. S. he responded, “… You shouldn’t worry what’s next if you haven’t finished what’s now.” He gets my new life philosophy.

Carpe Diem. Latin for seize the day. I use it to end my little posts about various issues Cheryl is dealing with but it is also a reminder to me to stay in the present. Do not linger in lamentation over perceived losses. Stay focused on the now. But do not get so narrow minded that everything has to be “just so.” It can be good enough. (An engineer would add – for who it’s for.)

Do not become anxious about the future unless you are making a list of stuff to take care of before leaving on an extended trip. Worrying about what is to come is of no useful purpose. Plan and if God laughs at you, laugh with Him.

Carpe Diem to me also means stay in the moment. Enjoy this moment. Take a selfie if you want to have a remembrance in some future time. I personally do not understand the selfie thing. Most of the selfies I see on Facebook do not give one a sense of where one is. Occasionally there is a glimpse of beach or Mickey Mouse ears but often the background is some drinking establishment which could be anywhere in the world. I have also noticed that the camera aficionados in my family point the camera away from themselves. Me included.

Cheryl found this image of my youngest sister, Laura and her husband Jeff. They look very happy. Laura looks radiant. They are enjoying the moment. I maintain it is impossible to look this happy and not be happy in your soul.

This picture was made pre-smart phone. It is therefore not a selfie. Many years ago I visited with my west coast sister in Seattle. I was working on a job farther north in Vancouver BC. Walking down Market St. I was nearly clothes-lined by some woman with her selfie stick. It was the first time I had seen a selfie stick. (Oh, I have wandered off into the weeds.)

Carpe Diem.

Carpe Diem

Posted by AdjunctWizard

I invited Cheryl and me to David’s house this afternoon. It is the first sunny one in a week or so. The following group of text messages ensued.

I concur. This is gonna be good.

Carpe sunny day Diem.

An August Evening

Posted by AdjunctWizard

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.

It is August

Posted by AdjunctWizard

Cheryl asked me – When is Thanksgiving? I told her the last week in November. We moved from there to me explaining it was still four months away. We were on the way to two appointments yesterday. It was earlier than I would typically schedule anything for Cheryl but in a weak moment on the phone with a scheduler who was trying to consolidate trips, I gave in.

Today she is part of a research study. The MOCA assessment is part of the study. There are many other instruments used. Some of these are poorly designed but in a way that is part of the assessment overall.

Physical assessment involves weak side motion testing. Resting tremors in different positions. The neurologist researcher wanted to test her walking but she was unable to do that unaided. After all of this Cheryl donated a blood sample and a urine sample.

We went from there to a scheduled visit with the nurse practitioner who works with her movement specialist. Maureen says that physically Cheryl assesses the same as when she last saw her in January.

She complained of tiredness afterward so we went home instead of to lunch somewhere. Cheryl thanked me for taking her to all her appointments and making sure she did not miss any.

Carpe stabilized Diem.

Janice in 2022

Posted by AdjunctWizard

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.