Two days ago Cheryl had the first of her big toe nails removed. Her toes and the nail on both large toes in particular have been bothering her for several years. Yuck.
A new thing to occupy her mind.
Now we are really trapped. Covid-19 is one thing. A sore foot is another.
Slowly the kids recognized that Dad was not going to ask for help.
Is it a loving husband thing? Is it a lifelong engineer thing? Is it arrogance? Is it and internal belief that only I can do it? – which is, maybe, arrogance. What is it about Cheryl’s PD that causes me to reject all offers of help?
Is it concern about interference? I know I felt some of that when Mom was still alive. Even though I was not at Seasons or Bridgeway Pointe every day, I felt I knew what was best for my mother. Conceit?
Slowly dad began to recognize that he was rejecting help freely offered.
It is not all about the caregivee. It is hard for the caregiver to recognize that things change. Relationships mature even when the relationship is mature and those in it are mature. (Aha!)
Occasionally the roles of giver and givee reverse without warning or announcement. Perhaps acceptance of the reversal satisfies more than a rejection of it. Perhaps dad needs nudge toward acceptance.
Slowly, ever so slowly, dad will change. Maybe.
After breakfast, this is Saturday, so breakfast is waffles with fruit, and after some tea she announces; I am going to take my shower now and get cleaned up.
I reply, I will be alert for thumps.
This is a conversation we have often when she is off to freshen up and start her day. I tease her about falling over in the shower. Grab bars are installed in our shower stall and although some day this situation will probably not work for her, for now, it is what we have.
I settle into my chair with a new cup of coffee and the Saturday WSJ to catch up on the nuances of Argentina’s default on its debt for the nth time.
She comes racing back from the bath area. I look up and ask her, can I help you? She replies, I can’t find my slippers as she walks over to the front door to look near the chair where she changes shoes to go out.
As I look over to where she is heading and get ready to start the expedition to recover the lost slippers, I gently point out to her that her slippers are on her feet. She looks down again and laughs. Giggling slightly, she returns to the bathroom to take a shower and freshen up.
Everyone at sometime or other has lost track of something hidden in plan sight. Sometimes for a parkie it is a panic. It heartens me that she is not apathetic to the disappearance of her slippers. She still cares about life and things around her.
As I think about her and this funny little life situation, I realize how important she is to me and how much I care about her well being. (Edie Kynard calls them “Aha moments” in her prayer.)
Seems like love in its many nuanced presentation.
In October 2019 I went to visit my brother in at his home in Florida.
In phone conversation earlier in the year Bill told me of several health issues that had cropped up. He had surgery to repair some of those. I became alarmed at that. I realized at the time how little contact we had with each other since Mom’s death.
I developed the thought of travel to Florida with Cheryl. She was interested in visiting with her sister Janice and her cousin Mary Kay who had recently moved to Florida with her husband Jay to start a new chapter of their life together.
Travel with a parkie requires much preparation. In addition to pills and documentation in case some piece of the plan fails, our plan had to include rest periods. Over many discussions with Cheryl – I put this on me – I decided it best to drive and spend two to three days traveling. This would limit our time in the car to about six hours a day and allow for resting every few hours dependent on Cheryl’s well being at any one time.
Tires changed, oil changed, other things inspected and about $700 later the chariot was ready. Hampton Inns were aligned with the projected stops after the hours traveled for the initial southern leg of the loop. Every possible health apparatus that might be required was staged for loading. The time to go had come.
In our younger years, I enjoyed traveling by car. I still do. I set the cruise to about four miles faster than the speed limit posted and steer. In Georgia that means I am traveling about eleven miles an hour slower than the other traffic. It is peaceful to me. The other vehicles swirl around like water over the pebbles in a brook and move on in an unchoreographed dance that is majestic and sad.
We are off. The car trunk packed with every conceivable health convenience required for a parkie. And food for the trip in the backseat. This has always been our method of travel. Cheryl gets out the map for the current State that we are traveling through and puts it on her lap to navigate. As we are driving along discussing things, it becomes apparent that she can no longer read a map. This is unfortunate. I don’t need a map most of the time. But Cheryl would put the map in her lap to keep track of our progress in past trips. Sadly on this trip that would not be possible. I had a new task. I had to keep her lap map synchronized with the travel we did each day. “Where are we?”, she would ask while gesturing at the map in her lap. It was an anxiety I did not want her to have. She was constantly worried we were lost. This was something I had not planned for. I had hoped it would be a peaceful trip south to visit family in Florida.
The weather was perfect. This was October. We stopped after about an hour or two of rolling along at various rest stops along the way. I would reassure her that we were not lost. I would show her where we were on her map.
In some parkies, and in this case, Cheryl, there seems a disconnect between time and speed and a sense of distance traveled. These are rudimentary math concepts. To read a map and navigate with it a sense of scaling is needed. Little of this made “sense” to Cheryl. Parkinson’s disease had stolen this from her. Lately it seems that much of her cognition has been crippled. As we drove along I pointed out route numbers and towns on the green signs and pointed to her map to help her find the answer to “Where are we?”
Part of the trip was to see how Cheryl traveled. Her brain seems to wander between illusion, delusion, small hallucination and confusion without losing lucidity. The mental aspects of Parkinson’s, which every parkie does not get, seem to be be ever so slowly taking over.
There were times when I doubted my decision to make the journey by car. We stopped more often than we did when we were younger. It caused me to realize I was still young in my head. But we stopped anyway.
The stopping was necessary. I needed to stretch my legs. Cheryl needed to stretch her mind. The weather during this trip was magnificent. During most of the stopping we were able to find a shady picnic area that allowed her to lay down for a bit and rest. I had enough pillows and pads in the trunk so that we could turn a bench into a cot for a bit. We walked a bit until she announced that it would be good to lay for a bit.
When we stopped for the night after 5-6 hours of driving and 2-3 hours of stopping, I was on high alert. On a trip that we took approximately two years previous she had a bad reaction to some of her meds which coupled with some hallucinations led to a long night of trouble. It seemed to be a live dream that I had become a part of. She was certain that demons not daemons were flying about in the hotel room and after using the bathroom in the middle of the night, she left to find help. I jumped up to let her back into the room and remained awake for most of the rest of the early morning hours until she fell asleep again. Her vision was real to her. We discussed it and if she closed her eyes she did not she the demons. She closed her eyes tightly and stayed this way for a long while until she calmed down and fell asleep.
Even though she no longer was taking the medicine that she reacted badly to, I was worried that this might come back in the middle of the night in an unfamiliar place. As a part of my stay over package I had several small night lights. Spotted around strategically just enough light to spark a memory. — Oh, that’s right, we are heading to Florida. And don’t trip while going to the bathroom!
About handicap accommodations; every state has different rules and expectations for these rooms. Many of these are excellent. The newer Hampton Inns have an outstanding designer of these, although, they are few in number at each facility. In older Hamptons and other operators the rooms have been converted from standard rooms and in this author’s opinion, it does not work. There simply is not enough space.
He is six years older than me. Aloof and mysterious to me as a younger brother all my life. We were never close. The age difference was too great when we were younger. That simple fact became embedded in our relationship though our lives. It was too great to overcome. We connected through Mom and sometimes, Dad, but mostly through Mom. When Mom passed away a couple years ago the connection was completely broken. And yet, I found the need to connect. It was a unilateral need. Or so I thought.
We had talked on the phone towards the end of the summer. His birthday is the end of August and it seemed that even though we were not close, I owed him a call on his birthday. Mom was gone and in some ways our family was fragmenting. We lived as far apart as you can and still be in the continental U.S. Florida, Oregon and Ohio. If I had moved to Maine or the Upper Peninsula of Michigan it would be more so, but only slightly.
The birthday conversation went something like;
Me: Happy Birthday! Did you have a good day? Did the kids come over to celebrate?
Him: It wasn’t too bad…
Me: So, how’s life in the great state of Florida?
And after that what came out was a long list of maladies and illness that shocked me into thinking – Wow, this is my big brother. I think he is checking out.
I did two things that evening. I called my sister Joyce to report and ask if she had talked to Bill in the last few months. And I planned to somehow get to Florida to see him.
Through the month of September and into October I planned, corrected, changed, threw out, started over and eventually decided on driving albeit a mosey of a drive. And when we got there, my brother was my brother. Thirty-five pounds lighter perhaps but that was a good thing.
It was a good visit. Before coming I had asked Bill if I could stay with him. Their house in Florida is sent up for that. There is a master suite on one side, more bedrooms and baths on the other side, a pass through bath that leads outdoors to the pool under a screened in area and common areas in the middle. It is a wonderful house. Perfect for a grown up family that travels to visit Mom and Dad (Grandma and Grandpa) on holidays and other occasions.
My request to stay at his house was totally selfish. I knew that I needed to settle Cheryl into a place that was a home atmosphere and provided other distractions without requiring a lot of walking. A suite at a hotel would have served us just as well for her needs or my perception of her needs. Not a lot happens in our Parkinson’s life before about 11AM. The hustle and bustle of early morning get-ups and snagging breakfast on the run as we head out to other places and occupations is gone from our life. Our mornings are quite and slow. My brother’s house in Florida was perfect. I wanted to have time to talk to a guy who is not that talkative to his little brother even though both are in their seventies. (smiley face)
We talked about many things; some health issues, some not. Through it all I was concerned that he seemed to move around very little. He sat a lot. I did some home improvement and lit the gas fireplace in preparation for the harsh Florida winter. I helped him roll the trash to the end of the driveway on trash day. After which I mentally vowed to send a cane that I had made for my father many years previous. In my mind I decided Bill needed to move. Take a walk. Get out of the chair. And if he did not start soon he would never do it or live much longer. At the end of Mom’s life she slowed down and sat. Her life became; get up, some breakfast, coffee, sit, turn on cable news, sit some more. I flashed to that while talking to my brother. He added another nuance, play with his tablet computer.
There were a couple of instances where I was perched on his love seat and he was futzing with his tablet. Some cable news outlet was playing on a flat screen TV so large that a blind man could watch it from three hundred meters away. In profile he looked so much like our father it took my attention from the room and I thought about Dad.
On the drive back home I was sincerely pleased that I had made the trip to see him. (As I write this I realize how focused I was on Bill while we were there.) For a bit, my focus on Cheryl and her needs were relieved.
Next stop – lunch with the sister and cousin. From one side of Florida to the other for lunch, Janice and brother-in-law Bill live near Tampa across the state from my brother. Mary Kay and her husband Jay had moved to the same left coast but father south toward Ft. Myers/Cape Coral. The planning committee arranged accommodations at a chain restaurant just south of Tampa equidistant time wise from Orlando and Ft. Myers.
Cheryl and I spent time catching up with other family. An odd statement at best but Janice is Cheryl’s sister and Mary Kay is Cheryl’s cousin. I have had very little contact with them over the years.
Jay is a good guy who has spent his life rehabbing houses and likes to lean on the kitchen counter while drinking a beer. Brother-in-law Bill is an odd guy with off-putting social skills. Any conversation had to involve him at the center. Over the years social situations were made more palatable by the presence of Eberhard Anheuser and Adolphus Busch, sometimes Mr. Miller.
It has not changed. As fortune would have it, Jay sat on our end of the table. We were the last to arrive. Mary Kay and Jay were the most recent Floridians. They had sold all in Montgomery, Ohio to start over in coastal Florida.
A side note here. A few years ago, Janice and Bill adopted a young autistic boy, Justin, and have cared for him since. Bill and he seem to have a very close connection. Justin is very interested in blow-up decorations and has collected quite a few to celebrate various holidays. This picture is his set up for All Hallows Eve.
We returned to Cincinnati a few days later by a different route. I had no other plan about that other than to see different landscape. After all, I was doing the steering. after two and a half more days of “Where are we?” and some less than perfect hotel accommodations we were home in our own bed.
I sent Bill Dad’s cane when I got home. I called to encourage him and tease him into walking more. And although I vowed mentally to call him more often, I did not want to seem a pest. Ours was a complicated relationship and a few days ago as I was collecting my thoughts about this trip, my sister called to tell me Bill had died earlier that morning.
I will think about Bill as I watch our youngest grandson, Zachary, and note how he interacts with his older brother. They have a gap in years more extreme than Bill and I did.
May 14, 2020
Earlier this morning my sister, Joyce, called to report that our brother Bill – William Robert Weisgerber – died this morning.
He was six years older than me. Seven years older than Joyce.
Aloof and mysterious to me as a younger brother all my life.
We were never close. The age difference was too great when we were younger. That simple fact became embedded in our relationship though our lives. It was too great to overcome.
We connected through Mom and sometimes, Dad but mostly through Mom. When Mom passed away a couple years ago the connection was completely broken. And yet, I found the need to connect. It was a unilateral need. A guilt really, maybe. It is hard to explain. Maybe no explanation is required.
When I was very young, we lived on Bach Ave. Some pronounced it “batch”. Mom pronounced it bock, like in Johann Sebastian Bach. It was a three story house. My brother’s room was the whole third floor. Neat!
Once, Johnny Deering and I were learning chemistry in the front yard with some matches. We were secret about it. We had selected the front hill behind the privet hedges to experiment with our new found knowledge. Bill noticed what we were doing which was mostly striking matches and watching them burn up. Sometimes we let one light another. We found out dirt won’t burn easily and ants dislike fire.
From an early age Bill understood the chain of command. He reported to Mom. Mom appeared at the front door. All experiments were terminated that day.
In another flashback memory, my brother is standing in front of the downstairs bathroom mirror with blood running down his chin. Mom is there cleaning a wound just below his lip made by some obstruction as he was sled riding down a hill with his buddies. He had several of these wounds on his face. I guess he never looked away from danger or a challenge.
Dad and Bill were ham radio buffs. So was I but I was six years behind. I still tried to participate in the mystery discussions about the nuances of using this amplifier tube versus that one in some circuit they were working on. What’s a tube? An old way of doing things. In retrospect, I probably spent more timing hanging with Dad in the basement. But by that time Bill was out of the house mostly and Mom had moved us from the Bach Ave house to Eastwood Circle.
He went to school in Cambridge, Massachusetts at MIT. That one single fact makes my brother a very smart guy in my mind. But then I have always thought that. It may be a pedestal that he did not deserve but as the younger brother I looked up at him physically for about seventeen years and that continued even though I surpassed him in height.
To explain our relationship, I often told the story that He never really spoke to me much before I was eighteen and he was getting married to Judy. I thought but never knew for sure that Mom told him to ask me to be in his wedding. I still don’t know but our relationship changed after this event. We became distant friends.
Life and family is complicated and tenuous. Certain things are constants. We become comfortable with those constants. And then we find out that they are variables after all with a long time constant. Like mountains however, they move and wear and change. It just takes a long time for the change to be noticeable. If something changes suddenly, like a landslide, everything is wobbly for awhile. Its hard to get a grip on the world again.
When a sibling family member dies the others are left with the reality of death. Death is as natural as life. But still there is a kind of aloneness, not loneliness, something is missing. You can not quite put your finger on it. There is a gap, a hole, a missing part.
Bill called me in 1994 after I had been terminated from my job with a small adhesive application equipment company. I had been the controls engineering manager there after I left Cincinnati Milacron and embarked on the rest of my life. I do not remember him calling me much. It was the other way around in my memory. So, his call was a surprise.
He called me, he said to offer some advice. He said, ” You have to decide what you are going to charge.” ‘Charge for what?’ I replied. They are going to trip over some problem that they will need you to fix, because they did not know they had it. Something you would have just handled. They will try to get you to do it for nothing but its a temp job. Figure out how much you are going to charge to fix their problem.
Every worker should be fired at some point in their life. It is not very much fun while it is happening but it is an excellent learning experience. You get down on yourself. What did I do wrong? How will I go on? If you are part of the engineering staff of a company, you often operate under the illusion that you are part of the management cadre. Nothing could be further from the truth. You are a worker bee like everyone else. Your work however is to think, design, plan and create the product.
Bill’s little advice made me realize my value. Anything I did had a price. And that price was value for my time, experience, problem solving ability, cleverness and elegance of design. More importantly that price included time away from things, family, people and situations that might be more important to me than doing some job that the only tangible benefit was a pay check. He had put it in perspective. Life is too short.
Next time you are in a cemetery read the stones. Find one that says, Great Designer!, Great Mechanic! Best Marketing Director, or Superb at Middle Management. Good luck. Go back and look for Father, Grandfather, Mother, Nana, Mom, Dad or Wife. Which was easier to find? Life has priorities. Do not loose track of their precedence.
Another story; Joyce calls me one day. “What do you think about Mom?”
me: I don’t know. What are you talking about?
Joyce: I think Mom is depressed. She seems off.
Me: Oh you mean that. Here’s what I think, Joyce. If Mom stays in her house, she will be with us for another year. maybe two. If we get Mom to move to some assisted living situation or at least somewhere there is some social engagement she will be with us for four maybe five years. What did you have in mind?
Joyce: That’s what I think too. Let’s see if we can get Mom to move to Seasons. I’m coming to Cincinnati.
Me: What about Bill? Last time we did this we almost had Mom there in Amberlawn and then Bill told it didn’t seem like a good place.
Joyce: You call Bill tell him to tell Mom he loves the place and it would be a good move.
And so it came to pass that I was responsible for telling my big brother that he did not know what was best for Mom. Joyce and I did. His only job was to cooperate and rave about the new digs we wanted to get Mom into.
In a fairly long phone conversation I became aware of the fact that he had no idea of the power of his opinion. Two thousand attaboys from Joyce and I were wiped out by one simple aweshit. It need not be a full aweshit, it could merely be a I dunno Mom.
I carefully explained to him he was the firstborn son. The only progeny with substance of thought and consideration. No other children’s opinions were of import. And he was in Florida. I was in Ohio. Or bring Mom to Florida to live. I could go visit. Joyce lived in Oregon. She could visit either place.
I could have kissed him for the rave reviews he gave Seasons community. He actually said, “Seems pretty nice, Mom. I could live here.” So we got Mom to move and she lived about five more years. Not all at Seasons but it was a beginning. It worked out.
For that I will always be thankful to Bill and amazed that he had no idea of his influence.
Can you tell who is picking me up today?
A question in the early morning hour of 3:45AM puzzled her. She awakened with the thought that she had to get ready. Someone was coming to pick her up and take her somewhere. Panic stricken she woke up and couldn’t remember who or to where.
It is still with me many hours later. I wonder whether it is okay to just go with it or to cause controversy in the wee hours and deny it. I chose to console her with, next week. You are going next week. Oh, good she said and got up to visit the toilet.
Sometime between the bed and the bathroom, it changed back into I have to get ready. They are coming soon. After the toilet flushed the closet door opened. I knew my ploy did not stick. I got up to try again.
Remember I said. You are not going until next week. Oh, okay she responded as I took her bathrobe and hung it onto the hook again. Come back to bed, I said.
We did. Eventually she was gently snoring. I laid awake listening to her sleep. Wishing with all my being that she would remain there, I fell back to sleep an hour later. Love messes with your head. Be angry if you want but anger accomplishes nothing.
In the morning she does not remember. It is a ghost memory.
Parkinson’s disease, ya gotta love it.
Nobody else was here when I got up. Where did they all go? Did you sleep okay?
This is our morning conversation more often these days. Not everyday but most days. She awakens in a dreamy daze that mingles with reality and it takes time for the dream to dissipate and the reality to focus. Occasionally it does not completely dissipate but she shushes it into the background and tamps it out of sight for awhile.
It is hard for a brain to understand that the chemistry surrounding it is off.
It seems like any thinking/decision-making activity is difficult. The reality versus surreality is merely a symptom of the slow degradation of the brain’s high order functions.
Man, Parkinson’s disease really sucks. That is reality.
Adjunct_Wizard 