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.
In my former life as a teacher of control topics I had the students set up an electronic timer to reach its goal at 10 seconds and 30 seconds to teach the point when you are waiting 10 seconds to is a long time and 30 seconds is “forever “.
From my view in the back seat the miles to go display is not fast enough. What is it about progress displays that make us wish them to go faster? The electronic timer had no display. It also taught patience.
61 miles now. Urgency is calling me. We are close to home and I can feel stability and familiarity drawing me in. It was a great beach trip.
Black hatUs beaching Early morning beach Setup Patience almost done
Two days to get home. One night in a motel with a less than ideal handicap bathroom. We will get through it. Keep a positive attitude!
Music on the radio is “My Life” by Billy Joel. A great old song.
This morning as we drove away from the overnight stay, “I’m Still Standing” comes up on music list. How apt. Cheryl and I had a less than peaceful experience last night but we are still standing.
THOUGHT FOR TODAY: The bitterest tears shed over graves are for words left unsaid and deeds left undone. -Harriet Beecher Stowe
This TFT came via Anu Arg’s newsletter to me this morning and when I read it two thoughts occurred to me. The first observation is yes but more importantly talk to the people you care most about and listen to them. The second observation is that I have been getting Anu’s newsletter since he started it in college about 1994-ish. Long ago and several email servers back. He and I share a love of words and their meaning both old and new. Today’s word is chirk. An old one that means cheerfulness. (Such a contrast to the TFT)
The Last Day
Today is our last day at the beach in Florida. Is it bittersweet? Tomorrow morning we will return home to our regular daily life (sweet). Am I reluctant to leave this Florida beach (bitter)? No I am not. It was/is however a nice change of pace.
Florida is hot. The humid air sticks to you like Luke Skywalker does to Mark Hamel. Fine white sand is everywhere. Tile floors although easy to maintain feel like a NHL practice rink just before the Zamboni comes out to a parkie unsteady on her feet. Those are a couple of the nuances that did not dissuade us from taking the opportunity to come here with Anna’s family. The experience was sweet. Going home will be sweet as well. No bitterness here.
Cheryl made it through all of the little inconveniences that come with being away from home and slightly off schedule for several days. Her schedule is very different from the rest of us and especially me. I suppose that I should be more cognizant of that but I am not. I am always hopeful that her disease interlaced with dementia will cure itself and we can move on with our life, run around and travel, drink fine wine, keep a schedule, make love again, just simply be. And that makes me forget where she is and where we are. Alas.
Red flag day
There is only sweetness coming when we get home. This vacation adventure with our daughter’s family has been hard on Cheryl but she does not seem to know it. She only knows that I am angry when she is doing something different than I am trying to get her to do. The page I have here about Dementia alludes to a lot of those little daily frustrations that I have observed. I should read it more often. Daily, perhaps?
… talk to the people you care most about and listen to them. Even when they are suffering with dementia and memory loss, she is still in there. Thanks, Anu. I often forget about that. The bitter can overwhelm the sweetness.
The water is calm. The air is clear. It is a new day. Pizza Tuesday is here.
Every morning I spend a few minutes finding my center. Many call it prayer and I suppose it may be that for some but for me I think of it as centering.
Each day brings new experiences unlike the previous or the next. Starting in the center allows for movement in either or neither direction. One can go with the flow as the kids say.
This trip to the beach with family is centering me more than I originally thought that it could. Before we left I worried over small details and ultimately let go of some. Of course now that we are here I see a few details that should have occurred to me but did not.
Had I centered on Cheryl and her needs, I might have thought about some handy things that I have used to help her. I should have brought with us a couple more handicapped useful devices. I bought her transfer chair not realizing that her U-Step walker is just as important to her mobility. She needs her manicure kit to keep track of her finger and toenails daily. A handicapped toilet seat would have been a wonderful thing. (At home we have had seat height toilets installed. The toilet seat height is within an inch of the height of the transfer chair seat which is becoming more of the care partnering experience. )
But centering on her disease shifts the mood of the vacation holiday. It is a delicate balance between understanding and helping.
Centering myself at the beginning of each day provides a perspective and I deal things as they come up, not as how I want them to be or wished them to be.
Cheryl makes many lists. Early on when she was still working and Parkinson was not a friend, she made TODO lists for work, school activities and whatever was coming. These days with Sam’s disease (Samuel Parkinson) such a big part of our lives making a list is more nuanced. The next day one must remember what the list is about.
In May two of the grandchildren marked significant events in their education. One matriculated from university and will begin contriting to the business world after this family vacation. And one graduated from high school and has her sights set on university in the fall. Cheryl made a list to mark both events. We were only able to attend one of the graduations but both celebrations. The list worked but I had to remind her what her notes meant.
Vacation view
In another part of the family, preparation is happening for a family reunion style gathering with no funeral attached. Cheryl wants to be very involved although her organizational skills are mostly gone. Her head however is jumbled with ideas.
“I need to make a list!”, says she.
“Try to relax and enjoy the beach.”, he replied.
“I will after I make a list.”
Sam this disease of yours is so much more than we had hoped for in our lives. (sarcasm)
Once in awhile and last night was on of them, Cheryl spontaneously tells me that she loves me. I tell her that every night before we go to sleep usually after I apologize for any recent transgressions. She responds I love you too. This was not one of those instances. Last night when we were talking about old movies she told me, “I love you.” I said “I love you too” in response.
Those small exchanges of emotion are important for communication. Cheryl struggles more and more with communication. As she struggles more and more with memory it becomes harder and harder to tell others and me what she needs. And she does not want to “put anyone out”, so, she might simply wait or not say anything. She can become angry if no one figures it out.
All of this creates a tension in care partners. The subtle mystery of figuring it out without obvious clues or cues does not let up, ever.
So when she said I love you, internally I felt like I was doing it correctly. “It” being my purpose in life. “Sometimes fate puts you just exactly where you’re supposed to be!” is a line from a movie that Cheryl really likes and I think it has a great deal of truth. I am convinced that the reason I am here is to take of her.
We are almost sixty years along in our journey through life and I am still learning. There are days when I long for the times when she did not struggle to move and think and decide what she wants to eat from the menu and drank tea while reading the newspaper and sit quietly watching tv but those times are past us.
Sometimes You Are Just Exactly Where You Are Supposed To Be. — even if you are unsure about being there.
Tonight it is the Blue Wahoos of Pensacola versus the Biscuits of Montgomery Alabama. Pensacola has a minor league baseball team and both Max and Eric are huge baseball fans so we thought it would be fun to go. Tickets were found and we are off. A trip to the pro shop netted a really fine Florida baseball hat.
Real Florida
The team colors are navy and gray. The Biscuits have almost the same colors which makes it a bit confusing from the stands.
Whoopadiddee
It was a great time although Cheryl ran out of gas at the bottom of the seventh inning with the score tied 3 all.
Last night when I came to bed Cheryl was still awake. I asked like I always do if all was well. She replied that yes she was okay. She said, “I was thinking about Mom.”
“What were you you thinking?”, I asked.
” I miss talking to her.”
It was an incredibly lucid moment of which there are fewer and fewer. We talked for a bit about our mothers. She missed Elaine in that moment but she was not sad. She was thoughtful. Elaine is very present to her. Most days Cheryl wants to call her and tell her about what is going on. When we go somewhere, Cheryl wants to make sure someone is attending to her mom’s needs.
Day Three
I suppose that time for relaxation and thinking and memories of her childhood and past good times bubble up in her thoughts when she lets go of control for a bit. Last night was one of those. She was not upset. If anything she was relaxed and pleasantly fatigued from the day’s activities.
Lately I have been giving her a chance to talk about her thoughts as she goes to bed. If I read for awhile before coming to bed and she is still awake I encourage her to tell me what she is thinking about. Sometimes many anxieties are jumbled up in her head. Sometimes, like last night, she is thinking pleasant thoughts. Sometimes she longs for Auld Angsine. (Sp?)
The crabcakes were good and it was breezy on the pier. The shore birds where grabbing any of the small bait fish that they could find.
When the children were small we began a tradition of making a trip to Myrtle Beach about once each year. The company that I worked for at the time used a pair of common vacation weeks which always landed at the end of July and the first week of August.
The company paid us salaried folks every four weeks called a period. The vacation weeks were the middle two weeks of the eighth period of the year. There were thirteen periods in a year and every few years a week was added to the thirteenth period to correct alignment with a normal calendar year. The Roman’s and later on the Pope would have been proud of Cincinnati Milacron.
Every year for 15 years or so our family went on vacation in the hottest part of the Ohio summer. Since my father worked for Milacron the memories of this vacation time goes back to childhood.
Cheryl liked to hike and walk. Not being an especially athletic person she substituted hiking and walking for any other athletic endeavor. At Myrtle Beach we would get up early hike the empty beach. It is where I first saw the green flash that occurs when the sun comes up over the ocean.
On other vacations over the years hiking was a big motivator. In every state park or national park or area that we stopped in walking and hiking was a major part of the experience. Maps were collected upon arrival and put to good use during the stay. In one Kentucky park our hike was about ten miles. It is without a doubt the thing I miss most with the onslaught of Parkinson. Her struggle to walk freely and move easily is disheartening. It was in many ways our main entertainment.
Conversation, discussion, debate, points won, points lost were all accompanied by a satisfyingly long walk. I think I miss those more than I can easily express.
Today my daughter and her husband took a long walk down the beach together. I was envious.
The hat
This time at the beach I am pushing her here and there. There are special wheelchairs for the beach and they are free. There is good ice cream across the road. I pushed her there too.
Cheryl and I have come to Florida rarely. My brother who was several years older than me chased his job to Florida in the 1970’s. We had been to visit with him and his family three times in all those years. The last time was not even a year before he passed from the Earth.
There are times when I think about Bill. Occasionally I hear his voice when I talk but occasionally I hear my father’s voice also. We came from the same germ so that’s bound to happen. Dad’s intonation and cadence is in our speech.
This place is in the panhandle almost Alabama part of Florida. Driving around today using up time before we could claim our condo for ourselves I noticed how busy this place is. It seems many are packing as many experiences as possible into the week that they have here.
The water seems to be a different color than the Atlantic coast around Myrtle Beach where we took the kids for many years. I could be wrong about that. It has been many years since we have been there. Memories fade over time.
The pine trees in southern Alabama look to be same species as those in South Carolina and Georgia.
Cheryl seems very tired. It is understandable. It has been a long ride for her and me. The view is very different from our veranda. It is certainly not Ohio.
The surf is very loud.
Cheryl seems concerned that she is not attending to some things that need attention. She is unclear about what those things are. I have assured her many times over that I have made sure that nothing will be missed because of this trip.
If she sleeps well tonight it will be great on the morrow.
Adjunct_Wizard 