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.
My brother… and his health
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.
Janice and Bill and Mary Kay and Jay luncheon…
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.