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.
For many weeks about eight or so Cheryl has been aware of where she is at night. It all vanished tonight and I drove her around the reset block back to our condo and home.
A dark starless nightmare as I prayed the trip would take her mind home.
I found an old movie called “Nebraska” and we had been watching it for 30-40 minutes. Cheryl seemed to be following the story line. I believed that she was anyway. After forty minutes or so after taking her bedtime pills she announced that she wanted to go home. I clarified like always do with response- we are home. We went to church, then to a restaurant and came home to here where we live. To which she responded that she wanted to go to her “other” home. Her imposter syndrome had reared its ugly head.
I wonder what triggers this delusion. The movie dealt with early dementia issues in the main character’s father who read the clearinghouse sweepstakes mailer and believed that he had won a million dollars. He wanted to travel to Lincoln Nebraska to get his winnings. His son humors him rather than fighting his father’s delusional behavior and make a road trip to Lincoln. Things happen along the way as the story unfolds.
We have watched other movies and Cheryl merely announces that she is tired and wants to go to bed. Tonight she wanted to go home to bed. Tomorrow she will have no memory of this episode. I will not mention it. If she does we will talk about it. She will not mention it though. If she does it will be the first time.
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.
Cheryl slept pretty good last night. One of my many anxieties about this vacation trip is how well she will sleep at night. In retrospect it is a constant concern. Like everyone she is much better health and attitude wise with a good night’s rest. Parkinson merely makes that harder to achieve with regularity. Stopped overnight in Cullman Alabama she seemed to sleep okay. We snuggled for a bit until she was asleep or seemed so to me. I moved quietly to the other bed afterward.
Buckee Hat
This morning I was up at 6 AM but we are on CDT now. Cheryl awakened at 7 AM. I helped her toilet and get cleaned up and change clothes. I thanked the Almighty for the smooth start to the day. We rolled down to the breakfast area to se what we could find. I found scrambled eggs, toast and bacon for Cheryl. Her favorite these days and as she started to eat and proceeded to have a coughing fit, I cursed the Almighty for interfering with Cheryl’s need for sustenance. That was a joke of sorts but lately when she eats breakfast she suffers through a coughing fit until the phlegm drool gets down her throat and her esophagus gets its act together and she can swallow okay again. She eventually settled down and drank a little green tea.
Day two of the trip is off and running. Google says that if we do not stop we will be on the beach at 2PM. And in the shameless advertising of places to stop, LaQuinta in Cullman has executive suites- their term- that are pretty nice if you are traveling with a less than ideal mobility person.
As we progress down the sad road of Parkinson and intermingled dementia I am always looking for ways to help Cheryl or get help for her and me. This web blog by Cheryl Hughes is and has been a source and an inspiration to me.
For the past few days as Cheryl has struggled through various mental clouds I have begun to ask about and look for trusted home health services. She is coming off of a UTI which I am getting pretty good at recognizing just by behavior. Some sort of mild sleep disturbing cough (thankfully not Covid related) has messed with sleep cycles for her and me. All of that is easing as the antibiotics have been used up. We are slowly drifting into our weekly sameness.
The past week of April has been beautiful in Ohio. On Tuesday I road my Rad City bike out of our drive onto the public roads. This is something that I have spent the winter gathering the courage to do. I rode around late morning to early afternoon on residential streets near me so that I did not have to deal with rush hour frantic antics. I greatly enjoyed my ride and although it was not long I realized that I was relaxed when I returned. My cousin-in-law was sitting in the kitchen with Cheryl having lunch and I was pleasantly fatigued.
It is time for me to get some consistent considerate help. It will cost money but there is that story about camels and needles that reminds me of my real responsibilities. Financially rich is not a good description of us but I am acutely aware that Cheryl’s care will cost more as time goes on. I may be too concerned about that but it is something I think about often.
Cheryl Hughes has pointed me to DailyCaring.com which is now sending me email newsletters. This website may prove invaluable as I try to learn more about helping Cheryl. Other friends have pointed me to a home care group that I will contact in the coming week to get established.
Cheryl was interested (it seemed to me) in going to bed at the normal time about 10 PM. I helped her through all the normal changes and toileting. Afterward I sat up to read but could not wrap my head around the story I was reading. I came to bed at 11 PM.
After I laid down and got comfortable she started talking to someone. I thought at first she was talking to me but listening I realized she was having a conversation with whom – several people – she was seeing in her head. She has had these episodes in the past but not for some time. Last night and early morning her hallucinations were strong. At least three people were in the room – Nancy and a couple of smaller children and Zachary. They talked about church topics. They talked about playing. they talked about what was best to eat. They talked about books and stories. They talked about breakfast.
After an hour or so of this I got up. I must have gotten used to her murmurings and fallen asleep for awhile but I awakened at a little after 1 AM and could not return to blissful slumber. I got up and pulled the sofa-bed apart with the intention of sleeping in the living room for a couple hours but that did not work out as I heard her moving around shortly after I got up to switch rooms.
When I reentered the bed room she was perched on the edge of the bed trying to get up in her hop-hop mode. I helped her up and she needed to put her imaginary earrings on the dresser in our bedroom.
I suggested to her sleepy, dreamy, hallucinatory self that she sit on the toilet while we were up and she did that. I changed her overnight incontinence stuff and while I was doing that she saw imaginary wetness on the floor as well as several imaginary insects moving about. We captured the imaginary insects after getting off the toilet and searched for more. Afterward she announced that she wanted scrambled eggs and ham. I sadly reported that we were out of ham and I would have to go to the store the next day and fix that but I could do scrambled eggs and toast. She was okay with that modification.
I made her scrambled eggs at 2 AM.
After she ate we returned to bed. I did not hear the living room clock strike three but that may have been because I stopped its pendulum while I was laying on the sofa-bed earlier next to it counting the ticks and the tocks.
It is 10 AM and she is still sleeping and I am wondering how long to let her sleep. We plan to meet one of her friends for lunch today at 12:30 or so. And what should I offer her for breakfast. This day is starting out very hard for Cheryl and very slowly.
For the past couple days Cheryl’s watch has been missing. It is THE WATCH. As a routine each night we place the watch on what I call the little hat. It is actually a little ring holder that was given to her by Anna. She put her rings and her watch on it but a little more that a year ago I purchased for her a gold chain to wear her rings as a necklace. She had lost enough weight in her hands that her rings would fall off in the car or a chair or the restaurant. This last was the scariest.
But I have digressed. –THE WATCH – has been missing since at least Wednesday. Kathy came to visit on Wednesday. I first noticed that her watch was missing in action when I made dinner and Cheryl and I sat down to eat it. She is right handed so she wears her watch on her left wrist. I noticed it was not on her wrist but I did not say anything because sometimes she does not wear it. Later when we went to bed I noticed that it was not on the little hat. For a couple days I would surreptitiously search for THE WATCH.
About noon today as she was preparing to take a shower and I was searching, I found her watch. She often puts rubber bands on collections of random items in her office. Her watch was on a book shelf in her office near some items that had been banded together. My heart leaped for joy. (I have not been following my own rule of looking around her office to see where things might be.)
Lately, however, I have become anxious about Cheryl’s mental health. The watch story is not about that, it seems to me to be slowly worsening as time goes on. And I think that I am getting used to it. (That idea makes me anxious and adds a fear of not recognizing changes immediately.) My daily notes about bedtimes, falls and other behavior are no longer daily. I note falls and other anomalies. Bedtimes are between 9:30 and 10:30 typically. Her impostor delusion (a noted behavior) seems to appear if she is up later than 11 PM and disappears into her office to “work on stuff.” Last night was one of those nights. I drove her around a four mile loop in the rain as she anxiously gripped her purse waiting to get home.
She was okay with me helping to change her clothes and get into bed when we got back. She wished me farewell and safe driving home. I left the bed room and open and closed a few doors as though I was leaving. I took off my jeans and sweatshirt that I had put on over my pajamas to make the drive. I turned off the lights and gently eased into our bedroom as her husband coming to bed. It worked. I worry that one time it will not work. So far my fear is unfounded but I still worry because I do not have another plan except for sleeping in the living area on the pull out sofa-bed.
At one time in the past I asked her if she remembered any of that. I learned that a reminder in the morning of odd behavior is unwarranted and perhaps even stupid. Introspection of failed ideas is useful.
I still wonder (and worry) about her failing memory and confusion and general mental heath. And of course how to pay for it all should she need extra care that I am unable to give her. Maybe I need some counseling? Or something to ease my mind? Engineers spend too much time what-iffing the situation.
On the morning news the U.S. Congress spent much of the taxpayer’s dollars annoying the CEO of TikTok. That social media platform gets more time per average viewer that Facebook and Twitter. Alas when will we discover the unimportance of Facebook and other social media? … except as another form of 1960’s TV.
It was my fault. I thought it would be a good thing to take her shopping. The target was J C Penney. The goal was towels. In retrospect I could have selected a different path through the store. The Men’s clothing aisle also leads to the home part of the store. (An AHA moment.)
She found a purse and looked at wallets but none were satisfactory. Or maybe I was an ache in the posterior. She told me she never gets to go shopping very much anymore. She is right. I probably also help guide her maybe more than I should.
From a male perspective this was worse than looking at a menu in an unfamiliar restaurant. It was overwhelming choices of color and style.
We did find towels and a bathmat. In the home area she told me that she likes bold colors. She selected a sort of hunter green, harvest gold and creamy white. She ignored the fuscia, orange, purple and tomato red. Our bathrooms are light green.
Like many old retired folks we have a Medicare advantage plan. When I investigated these a few years age I came to the conclusion that the United Healthcare plans offered through AARP seemed to be appropriate for our needs. There have been several adjustments and realignments over the past several years and I am not in any way an insurance expert but so far the system has worked for us. United Healthcare has a feature that sends a nurse practitioner once a year to visit to check their clients if they want to participate. Participation is voluntary. Cynical me wonders what benefit the insurance company receives from visiting it clients but practical me says there is some benefit otherwise they would have no reason to pay a skilled NP to drive around the countryside to visit clients. There is no altruism in corporate america. I agreed to a visit by Whitney on Thursday of this week.
UHC Housecalls (Whitney) came to visit that day. We went through all the medications that Cheryl takes for Parkinson and my few meds for high cholesterol and too much eyeball pressure. There is a modified MOCA test – draw a clock, remember three words while drawing the clock. The normal blood pressure, heart rate and lung listening happens as in any wellness visit. There is also a clip on gadget and an app that runs on Whitney’s laptop that produces circulation information. Good news we are both alive! And one of us could remember the three words.
In addition to Whitney coming to visit, so did Nancy, a friend of Cheryl’s from church. In fact Cheryl has had a different someone come to visit every day this week. It has been busy and that tires her out.
Cheryl was showing signs of exhaustion on Wednesday. In the evening about 11:30 pm she needed to go home. I was heartbroken that night and tired myself from the time change. The impostor (Capgras) delusion seems to appear about once every two weeks. I put her in the car and drove her around the block. I am usually terrified that this time it will not work. This night it did (still).
Today it was hard but busy. Writing this on Thursday, I wrote that I forgot her pills at 1 pm. Damn. That will mess up her mobility and her mind. Later on Thursday I noted — it is almost 8 PM and I think she is back to her normal for now.
Cheryl could not complete the modified MOCA test on Thursday. Today, Friday, she went to lunch with her friend Barb. The week of visits, no matter how well intentioned, is over.
Tonight we went out to get dinner at one of our favorite little restaurants. St. Patrick’s Day pub crawls where in full swing on Friday night. [Éirinn go Brách] The food was good and the crowd was raucous and loud. St. Pat showed up on the second day of March madness.
Tonight at dinner for the first time she carried on a conversation with an apparition that she saw at the dinner table.
I invented a new recipe – Macaroni and cheese with chicken – she liked it. She even raved about it. Then she proceeded to discuss this casserole with a small brown haired girl that she saw at our kitchen table. We have a small kitchen with no external lighting so when I changed the ceiling fixtures a couple years ago I selected a couple of flat square LED fixtures that produce 5000 lumens each. It is bright. There was no child with us. There is very little shadow except directly under the small table we have there. I know the girl had brown hair because I asked. I asked Cheryl not the girl.
Cheryl asked her how she liked it. And then responded, “So, you are not going to answer?” after she had waited for a bit. To Cheryl this girl was very vivid. She did not look at me and recognize the astonishment on my face. For several minutes she quizzed the little girl about the food.
Eventually the little girl left us. I did not ask where.
Cheryl did not invite her for ice cream. We had that for dessert.
Cheryl did not sleep much last night. Her hallucinations are strong when that happens. It has been a very weird day. I tried to keep up with the strange conversation. Some stories are made up out of whole cloth. In “What Rose Forgot”, a novel by Nevada Barr, the writer describes that Rose’s memories fell into her head like rocks from a skip loader or similar analogy. In Cheryl’s case chunks of old career work experience, high school and her early computer system help with the grade school our children were in, sort of commingle in the narrative. A simple “ah huh” or “no kidding” keeps the narrative developing as we drive to somewhere.
In church tonight I noticed that she looked at the same page of the church bulletin all through mass. Somehow I could tell that the words were meaningless to her. It saddened me.
Adjunct_Wizard 