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Little Incremental Changes

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This morning I am thinking about the little incremental changes this disease of Parkinson caused in Cheryl. The trees in these pictures are maples and they are turning with the season. It is not apparent in the big picture as they show below but zoom in and each individual leaf has a tinge of red around the edge of the leaf. The green still remains in the core of the leaf. Little incremental changes as the leaf begins to shutdown for the season.

Tonight and on days since I started this essay, I am thinking about the little incremental changes this disease of Parkinson that has invaded the person I most want to be with, the person where I am home, has caused in me. Our green area is smaller. And yet at the same time it is still green.

It is my goal to talk to her on a level that is her. Sometimes her behavioral response to some situation can appear childish to me. It has only recently come to me that I must ignore that perception and talk to her as I once did. Almost every morning when I wake her she will ask, “Can we still get to church?” or “What time is church?” I used to respond with, “There is no church today.” Sometime in the past I decided that response was unhelpful. These days when she asks me about church I take that to mean, “What is on the agenda for today?” She has little memory of what we may have discussed doing on the previous evening when we went to bed.

Aphasia appears often. When she is telling a story it is very important to her to get the names dates and places correct, even if she is way off the mark. Her mother is no longer on this Earth nor is her sister Janice. Cheryl tells stories about them or visiting with them in the present tense. Once in awhile I might tell her that her mom is in heaven. She will respond, “Are you sure?” That question reminds me that it is unimportant to correct her perceptions. I have a difficult time resisting the natural male response of – bullshit that is not the way it is.

It appears to me – just observation – that although she can read, the words are mostly meaningless. It the morning over breakfast we look at the newspapers. For me that is the Wall Street Journal. For her that is the Cincinnati Enquirer. I have two observations; She does not recognize that they are two different papers. She is unable to comment on articles that she may be looking at in the paper. (I have asked.) The particular article might be about some city council fiasco. She will tell a story about Sr. Janet and what the newspaper tells Cheryl about her job with the parish office.

I know there is some green still left in the middle.

I am thinking about how it has changed my focus. I used to worry about how late she slept in the morning. The why of that worry always comes back to how much sleep I will get that night. Those two ideas are connected only in my mind. They are not connected in practice.

It changes my perspective. There is a bigger picture. Just like these trees on our property, when one zooms in one sees the differences in the leaves but when one zooms out one sees beauty.

It changes my interest. What can I do to enable her to reminisce even if her memory is weak? Perhaps I can aid her reminiscence. Comment about her stories to get her to tell me more.

It changes my observation of the universe. There is beauty everywhere you look. Cheryl is always telling me about the moon when we are driving somewhere. I look too. She can see the moon in the clouds. So can I if I look carefully and listen to where she says she sees it. A shape in the clouds looks to her like the moon. I long to see through her eyes.

Maybe I could read to her rather than watching her struggle to understand printed words.

Carpe Diem.

Early Morning

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It is not really very early but Cheryl is still sleeping. I have given her her first meds of the day and she lays back down for a bit to let them work on her. I crush her meds and stir them into vanilla pudding, some of that stuff parents put in their kids lunch. This is a new thing and for the past couple mornings it seems to be working.

My trip out west to visit my sister has planted a bug in my mind about tracking down cousins that I have not chatted with since childhood. I do not know where that came from but maybe it has to do with thoughts about family and as families spread connections are lost. Maybe the fact that a couple of my same last name cousins came to visit with Joyce and me in Oregon. Maybe I just do not know.

Nevertheless, I reached out to a couple cousins who are not the same last name. I will see where this goes.

Carpe Diem

At Peace

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One evening this week our three children came over to discuss what is best for their mom. It is a hard discussion. Cheryl was part of it. As we came to understand and accept the few decisions about Cheryl’s future care, I sensed a peace, a calmness descend upon my soul. Cheryl needs more help than I can give her consistently. I do not function well with little sleep.

That meeting took place a couple days ago. It may be my imagination but I sense that Cheryl is slipping away. She slept unwell overnight which in and of itself is not unusual but today she is sleeping the day away.

Carpe the next Diem. This one appears to be lost.

Maybe my night is lost also.

Writing that last line has put me in mind of controlling the things I can and letting go of trying to control the things that I cannot.

Carpe tomorrow.

They Are Not You

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“… 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.

It’s Near Time for Good-byes

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I started this a couple days ago while sitting in the airport and elsewhere. I mulled over many thoughts that I had about family and siblings and care giving and end of life. A great visit with my sister and only sibling alive comes to a close.

Joyce asked me if I was shifting back into caregiver mode. I am. I also think that I never left that mode or mood. I was far away but the kids were close by for Cheryl. David took it upon himself to visit his mother every day. I was able to relax a bit.

In the collection of photos below in the picture immediately above the lighthouse there is a little white speck to the left of center in an otherwise empty ocean. That is a whale spout.

When I return we ( our family) will be planning, thinking carefully about future care for Cheryl. This was a test for us all. There are lots of imponderables. What is best for Cheryl? How will we finance it? How will we respond to her needs?

Carpe Diem.

I Wish I Could See Through Her Eyes

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Cheryl sees many shapes and things and people that I cannot. I wish I could see through her eyes just once in awhile. I might have a greater understanding and appreciation of what she is going through.

Yesterday as I left sitting at the table with another gentleman waiting for dinner, I suddenly realized that in many ways she is gone. It saddened me deeply and I cried a bit. She is staying at a memory care facility while I go to visit my sister across the country.

I am hoping for a great visit. We have not been together for two years.

Sleeping last night was very hard as I expected it to be. I thought about Cheryl and hoped she would not be too disoriented or afraid. She is more of both lately. Several times over the last couple of months she made reference to being gone. The first time I sat with her and listened. She was convinced she would not be available to have her hair cut in August. She is still here physically but her words are a mystery often. It is frustrating to her that she cannot find the names of her family and friends. It is frustrating to me that I cannot guess the correct words and help.

I hope she knows who I am when I get back. I wonder who will I be when I get back. But if not I will need to figure out a greater amount of care for her. A meditation for another day.

Carpe Diem.

Free Falling

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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 Day that will Live in Infamy

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Looking back from the afternoon towards the morning I have to laugh a little.

Cheryl’s doctor is still adjusting her meds. Trying to sort out sleep issues, depression issues, hallucination issues, movement issues and other Parkinson dilemmas takes time. In the meantime sleep is illusive. Last night I got the message – quit taking the quetiapine for sleep. So I did not give her the quetiapine.

This morning I got the message, the doctor has communicated with the neuropharmacist and reviewed all the other stuff she is taking. Start giving her the quetiapine 75 mg for 5 days and then 100 mg from then on. The nurse practitioner will check back in two weeks to see how it all turned out.

That is counter intuitive. 75 mg is twice the original amount of quetiapine that she was taking. After I finished reading all that I went to check on Cheryl. She was awake as she had slept poorly but quiet enough that I slept like a stone or at least a stone with a two-teaspoon bladder capacity. Overnight I sensed that Cheryl was awake but she was not talking gibberish which happens sometimes when she dreams out loud. I fell asleep easily after getting up a couple times. (God, I hate old age.)

We decided on waffles and fruit for breakfast. She ate her pears and part of a waffle and disintegrated into a coughing nausea fit which caused her to quit eating anything else for awhile. As that died down a bit, my cousin-in-law called with a long explanation about why she was unable to participate in Pizza Tuesday tonight.

Linda told me a story about her upstairs neighbor’s incompetency, water leakage and associated repairs. I started to think my life was not so bad at least my building wasn’t falling down around me.

Cheryl decided that she wanted to lay back down for awhile. I helped her back to the bed room and the bed. I then returned to the kitchen to finish assembling a new pot of coffee and wait for the next activity. I turned on the kitchen tap and a tiny trickle came out.

When I had the kitchen remodeled a few years ago I opted for the super faucet that I only need to touch somewhere to make it come on. It was a $300 option but it was extremely handy over the years. It is a battery powered system and the problem that presented itself told me the batteries needed to be replaced. Alas! I found new batteries and did that. Still no water! I called the plumber. Micky listened and told me that they have had a couple failures but she was sure mine was still under warranty and would check to see how long to get parts and call me back.

I took my coffee pot to the sink in the utility room for water. The sink in the utility room was running very slowly. WTF? Did we have a water main break? I called the Greater Cincinnati Water Works generic hold number and the robot answer-er asked if I wanted to discuss my bill. No! I replied. and eventually was connected to queue manned by a single human. This is similar to going to the post office to buy stamps at the wrong time of day. While on hold i decided to go look for my Amazon package that the driver had beeped my door buzzer about earlier. The package was leaning on my front door which led me to look into the front lobby of our condo building. The front door was propped open by a plumber who was working on the new neighbor’s condo up stairs. I tapped on her door and grumped long and loud about turning off the water to the building without warning anyone. — Turn about is fair play; she grumped loud and long about someone stealing her ladder when she was moving in which did not happen. The painters thought it was theirs and realized their mistake and put it back in the incorrect spot.

Someone had mismarked the main water supply which comes into the building as the cutoff for the second floor condo not realizing what they were doing. Our new neighbor’s water shutoff valve was hiding behind the water heater. The plumber figured out where it was after we complained about the water being off. He got bad information from a resident that was not here. Who knew?

I later apologized to my neighbor about raising much ado about nothing.

In the meantime Cheryl’s head is off in lalaland.

Sleep would be a good thing for her.

It is Pizza Tuesday.

Carpe Diem.

A Prayer for Self Compassion when Care Giving

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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.