We Do Not Know

I started a single line entry in my note book a few days ago with this single line – A thousand thoughts and prayers amount to less than a single action. It was a thought for the day from somewhere. I get a lot of newsletters and other useless email. This was included in one of them.

People say or write it to each other all the time, ” My thoughts and prayers are with you.” For those who are unable to write or say actual words there is the text-message hieroglyphic picture of praying hands which Anglos interpret as prayer but Hindus probably interpret differently. I do it too. Is it cynical to think of it as a shallow and ineffective response to a request for help of some sort? Caring and caregiving are two very different concepts.

The kitchen garbage can is full. VS. Please, John, take the garbage out. Most will think this a bad example but I do not. The first is a description of a condition. The second is a specific request to a specific person.

Most of us are not specific about any need that we may have for help. It is unusual to make a specific request. It is very typical to talk about our own situation or describe some condition that we are in. Few will volunteer to help without a specific request.

Grace and peace be to all of you who help Cheryl and I without a specific request from us. We love you dearly and thank you for your gracious help.

We do not know the other person’s situation. We are not walking in their shoes. We are not taking their path through life. Let us all listen closely and ask, “How can I help?”

Carpe Diem.

They Are Not You

“… Don’t forget she’s in one piece and they aren’t you.” My daughter said to me in a text message after we had collected Cheryl from the place she stayed for a week while I went to visit my sister in Portland Oregon. (Great trip. Beautiful weather. Decent gin. Excellent wine. We never felt the need or desire to turn on the TV.)

A big part of this was a trial for me (and Cheryl). How would I feel about getting Cheryl into a 24/7 care situation? The place where she stayed in respite is a new memory care place. It is locally owned but not directly associated with any medical institution and not part of a bigger chain or group. How would Cheryl do there? It is a secure facility. Electronic locks on everything including the elevator. They do not let the visitors have a pass to the front exit door. You can be escorted by the nurse or knock loudly and the lobby receptionist will let you out. It is a memory care place. People can wander off at home but not there. That is not Cheryl’s problem.

Cheryl’s problems are numerous: dementia, memory loss, occasional confusion about space and time, Parkinson mobility issues, eating issues, hydration issues, yadda, yadda, yadda. Our life has been taken over by the evil Parkinson.

My thoughts are numerous. How would I feel about settling her in a place away from me? Would she get the same kind of undivided attention that I give her? Would she become angry with aides like she does with me occasionally? Meds and their schedule of delivery is paramount to a parkie. Would I want to micromanage the healthcare aides? Would the aides be pushy and encourage her to eat and drink like I do? Would I feel the need to be there every minute of every day? I have my eye on Bridgeway Pointe which is a place where my mother and her mother stayed toward the end of their lives. Is that the right place for her? Can they provide services for her? How to afford it?

Meditating and thinking about it is tiring.

Carpe Diem.

Free Falling

The Traveling Wilburys or some other group recorded song many years ago with this title. There are many days when I feel just like this. We are free falling through life with Parkinson.

There are days when I wish I could see the world through her eyes. There are days when I wish I could sense the world through her jumbled senses. There are days when I wish I could understand why it was important to stack the Kleenex just so.

It is exhausting.

This morning as I think about Cheryl’s disease and how it is affecting her and how it has changed our life my emotions about it all are jumbled up in my thoughts.

Love is carrying us through it all but a few more scientific facts would be useful.

Some evenings go smoothly and she is calm when she goes to bed at night. She sleeps. I sleep. Those facts may have little to do with outcomes of the next day. Last night I lowered my expectations of her and suffered along. Eventually about 1 AM sleep happened.

Today we have donuts for breakfast.

Carpe – this – Diem. The next day may not be.

A Prayer for Self Compassion when Care Giving

I was reading the St. Anthony Messenger today which is something I rarely do. This little prayer at the end of an article about self-compassion struck me as apt. It also reminded me of Mom and something thing she told toward the end of her life. She said, “I think I need a mother.”

What she meant was she was tired and needed to have someone else be in charge. We all need to give ourselves a break.

At the end of her life I took control of Mom’s finances and I did not always do what she wanted me to do. Sometimes I thought her ideas where crazy (not the right word) and told her so and later I would feel guilty about it. I needed her to be the mother.

Sometimes I think about Mom when I am helping Cheryl. In many ways Cheryl is slowly, ever so slowly wasting away like Mom did near the end of her life. Sometimes it makes me angry, sometimes sad. I am always trying for better and more compassion. Some days it is just plain hard.

Maybe I need to give myself a break.

Carpe Diem.

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.

Longing for a Life

Some days when I look at family pictures I find myself longing for a different life. I long for a life without Parkinson. Often it is a deep deep longing on those days when Cheryl is struggling and I understand she is struggling and I have no ability to help without making her feel helpless. Her dementia pattern seems to inhibit her from asking for any assistance or realizing that she needs assistance whether it is me holding her up so that she can steady herself or simply handing her a tissue to blow her nose or blot her mouth when the drool comes.

Care partners run out of gas too. On most days her memory seems to work for about 10 minutes. ( That may be a sarcastic quip.) On others the loss of the discussion is much shorter than that. On those days I become frustrated which manifests as a louder whiny voice and sounds like anger. It sounds like anger even to me. Cheryl responds with anger and I suddenly remember where her mind is. It is very easy to forget she is still Cheryl. Repetition helps her know what to do or where to go or what she thinks she needs to do. Nevertheless it can be frustrating.

I started writing this short essay a couple days ago when I was feeling down? lost? tired of it all? – defeated? – maybe all of these. Sometimes I just wonder what if?

I doubt that anyone dealing with a partner in life that has a chronic disease wishes for their current existence. Endurance and strength to get through it all is all I ever hope for.

Looking back on the past few years, the covid shutdown, the covid start-back-up, the lifestyle/work style changes to society, the meanness of social media politics, I realize that Cheryl and I do not have it so bad. I wish her dementia to be gone but it is not – except for the few moments early after she awakens. She will look at me with tired eyes and smile. It lifts my heart and soul when that happens.

I still wonder “what if?” I just do not let it control me.

Breathe in, breathe out, move on. — Jimmy Buffet

GULF SHORES, AL – JULY 11: Musician Jimmy Buffett performs onstage at Jimmy Buffett & Friends: Live from the Gulf Coast, a concert presented by CMT at on the beach on July 11, 2010 in Gulf Shores, Alabama. (Photo by Rick Diamond/Getty Images for CMT)

Picture stolen from NPR.

Carpe Diem.

Time for a Change

One of my favorite words is Luddite. It is a pejorative. Luddites are resistant to technology and change. Buddhism and Hinduism share the doctrine of Anicca or Anitya, that is “nothing lasts, everything is in constant state of change”. Imagine a Buddhist Luddite. There is a guy with a serious mental health issue.

Difficulties of life while supporting a person with any sort of chronic disease tempers one’s world view. I have come to decide that change in perspective is necessary for a healthy mind, a calm mind, a sane mind.

I have decided to make three changes in my day that I hope will adjust my personal perspective. In the morning spend an hour writing. It is quiet. Use the time wisely. In the morning spend fifteen minutes doing some exercise. In the evening read for an hour. Stephen King has a new book.

I do some of this currently. Generally I read for an hour or so before I go to bed but after I help Cheryl to bed. It is quiet in the late evening. Cheryl usually needs time to settle down. If I go to bed at the same time as her I tend to lie awake listening to her squirm and rub and pat the bed and generally fidget. Often while reading I find myself listening carefully to hear if she is moving. If this happens I realize that whatever reading material I have is not holding my interest and attention. It is time to sleep.

For awhile in the morning during the early summer I had a series of chair yoga (old out of shape people yoga) exercises that I did in the morning. The whole series took about 15 – 20 minutes. Somewhere in June I lost interest and quit but exercise is boring and doing exercise because someone told you it is good for you is uninspiring. I do not simply believe ideas that others expound. I look for some validity elsewhere first. Perhaps I need to mix it up and find my groove. I am still working on that aspect of it.

Write in the morning during the early hours while Cheryl is still sleeping. Make it a routine and perhaps I can finish my book. My it a routine and perhaps I can inspire myself. I have started three different book ideas. I have to select one and push it.

A fourth thing not mentioned above is go back to working with students in the program I am involved with at a local community college. It is a fact that communication with others without dementia can be a relief from the miscommunication that occurs in our every day life. Four hours is about long enough for me relax and not think about Cheryl. It is a break. I think I need that.

It is later in the year. The sun goes down earlier in the day. Cheryl’s brain wanders off into some odd places when it is winter gloomy outside. Our condominium is one the first floor of a two story building. We are in the back and the windows face east with a view of an overgrown woods. It can be a bleak landscape view in the winter. In the summer it fills in close enough that there is no view of the sunrise. Garages line the front so that there is no view to the front and the typically magnificent sunsets we can view from our hilltop. But it is a one floor plan which is perfect for Cheryl and her bad knees. it is, however, dark in the winter and on a cloudy summer day much like viewing the world through cataracts.

And there you have it, my first morning of writing and thinking.

Carpe Diem.

More on Expectations

I did not mention previously that I have greater expectations of myself than anyone else around us. I tend to focus inward and make all things that go badly my fault.

Fault is something that a catholic education will drill into you. Recognizing that humans are weak in many ways is something catholic education ignores.

“… And if you should fail in this, humble yourself, make a new proposition, get up and continue on your way.” (Padre Pio)

I am feeling disappointment in myself today.

Carpe Diem

Monday August 28, 2023

August 30, 2023 – a blue moon

Cheryl has two therapy sessions today. One is occupational one is physical. As we pulled into the south portico I realized that it was jammed up with four other vehicles and all are equipped with mobility equipment ramps. I stopped short and helped Cheryl up the curb to her walker that I placed on the walk.

My third thought after damn it is crowded,  why are all these people here now and in my way was I guess we do not have it that bad after all. As I helped Cheryl walk past one van the ramp came out of the side door and settled onto the walk next to us. I thought how convenient. A crippled woman was sitting in a battery powered mobility chair. She said, “Hi!” as we walked by. I thought that looks way more difficult to deal with. I wonder what his morning is like as I looked at the guy helping her.

Tomorrow is our 53rd wedding anniversary and the day after that the anniversary of when we met. It is also a blue August moon as it was in 1966. It makes me wonder how often blue moons occur in August. We met on a special day. This year the same celestial event happens. We have had and continue to have a special life. (Follow-up — only once between 1966 and this year. According to the internet of all knowledge.)

So far we do not need a battery powered chair for Cheryl to get around. I do have a transfer chair for when she is not moving well. I bought it as a convenience to me.

Carpe Diem

A Quiet Monday

My mother always hated Monday. Even after she was long retired from her working career she would refer to Monday as Bloody Monday. I never understood that attitude.

This Monday morning Cheryl is sleeping in the other room. Quiet after she had been up concerned about strange thoughts just before midnight. She was worried about when Jan and Nancy were going to pick her up. Jan has passed away. Her thoughts are often very jumbled up these days.

Yesterday evening she was very anxious about our nephew Mark and his girl friend Jill. This was brought on by us driving past the FedEx terminal near where we live and Cheryl asking about Max working at FedEx. I responded with the fact that Mark, our nephew, worked for FedEx. I asked if she meant him. She said yes, I think so. And this launched her into several hours of on and off conversation about him and his girlfriend Jill (I quit correcting her ideas) and birthdays and presents and on and on.

After awhile it is very hard to deal with random nonsensical conversation.

I convinced her we should practice her voice exercises. We shouted MAY, ME, MY, MOW, MOO for several minutes. And tried to make AH last for ten seconds. Parkies do not breathe deep. In Cheryl’s case she often has very little air behind her vocal chords.

We rounded out the evening by watching 60 Minutes on CBS and then the movie “80 for Brady” (for the 53rd time).

I am starting to wonder where she has gone in her mind. She has exhibited several unusual behaviors over the past couple weeks but I disregarded them to simple tiredness from her current PT schedule. Physically she seems to be moving worse so none of this seems to me to be helping her.

A few days ago she sat in the rocker in our living room and stared out the window at the bushes in the overgrown lot behind us for two and a half hours without moving. She did not speak during any of this time.

She puts together random collections of pieces of paper and photographs. Some of these I have taken out surreptitiously of her circulation and put them on my desk to look inside her mind. I think it may be scrambled but occasionally I find little gems.

These pictures of Dad were attached to one of Cheryl’s lists of stuff: Moeller; Dr. & Mrs. Fred Kraus; Jeane Krause; Mr & Mrs.; Barb Kalb; Find Barb’s Christmas card; when I find the list compare the list to current addresses for all; Lists <-> Krause, Torbeck, Driscoll, Weisgerber, Welch; Make a list – Cheryl Torbeck, Cheryl’s friends… None of this has anything to do with these pictures which were probably collected for my father’s funeral in 2007. I am glad I found them.

Maybe one day I can find her mind for her and give it back to her.

Carpe Diem.