My search for grace and meaning after a former care partnering life with a wife who suffered from Parkinson's disease and dementia giving her a confused and disorienting world.
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.
“… 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?
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?
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.
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.
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.
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.
I had a better memory of Cheryl’s funny little conversations that she and I have when we go out to eat or I drive her somewhere to be out of the house for a bit.
Over time – it took some time – I have come to understand the value of “going with it.” If Cheryl wants to call the painters tomorrow and get them going on painting our condo which is something she talks about occasionally, I merely respond with encouragement. Yes we should do that first thing tomorrow. I wish she did not have these odd thoughts but they are there. Those thoughts will be brand new tomorrow. Fresh to her. She will not ask why I did not call the painters, yet. She might not remember wanting to get the place repainted until next week. So I just go with it.
Her conversation on our way to somewhere is comical. It can be all over the place. It can be hard for me to keep up. She will tell me about cloud formations and what she sees in them. The next sentence might be let’s invite Mom for dinner tomorrow and maybe Jan will come. I talked to Jan this morning, she is moving to Florida. Alas both her mother and her sister Janice have passed from this life.
Earlier today I came back from riding my bike and she asked me if I had a good visit with Nancy. These questions which indicate confusion of previous conversations and where I disappeared to I will answer directly. I do not “go with it”. She accepts that.
I wish for a lot of things. As we take a walk today in great September weather in Ohio I wish she had more stamina. For the first time ever since I saw her sit and rest on her walker. She is doing the feet thing she does with her transfer chair. The walker is not as easy to control.
As she looks at her electronic picture frame full of photos I gleaned from Facebook and other sources she is anxious to make copies of the various photographs and give them to the people in the photographs. Cheryl does not understand where the pictures came from. I wish that she understood that, then maybe she would not be worried that others in her family may not have the photos.
I wish she was not confused but she is. When the medical student doing clinical work with Cheryl’s neuropsychologist yesterday asked her what month it is, she answered, May. This new doctor that Cheryl sees has a palliative care clinic. She wants to help Cheryl live her best life with her disease. I hope she is able to help Cheryl.
To Cheryl Christmas is next week. Maybe it will be.
Watching the early morning newsy shows yesterday a guest mentioned this concept. The word stuck with me because I think all care partners are just that – HOPE-aholics.
Hopeful the incontinence will be less or gone.
Hopeful the memories will not completely fade.
Hopeful that she will be less anxious in the evening.
Hopeful that she will think she is home at night.
Hopeful she will sleep peacefully overnight.
Hopeful she will walk better with her left side.
Hopeful she will do her speech exercises.
Hopeful she will remember who I am during the day and into the night.
Hopeful she will not be afraid of what is to come.
Hopeful, always hopeful, she will be fine with staying in a respite situation while I travel to visit my sister.
Hopeful that I will not be anxious while away.
Hopeful that she will eat more.
Hopeful that she will not lose more weight.
Hopeful that visitors will make her days busy while I visit my sister.
Adjunct_Wizard 