travel

Discoveries of Her View

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Cheryl is safe in her room a Bridgeway Pointe and I am cleaning up and sorting through papers in her office. She has collected vast piles of birthday cards, Christmas cards, notes, emails and other writings. She has put these together in random collections of paper that, at the time in her thinking, belonged together. (Punding is the term used by the Swiss.) This collection of items is her version of it.

One of the thoughts that comes through to me is a background fear of losing her memory and remembrances of her life. Some of her notes to herself are frantic in her attempt to categorize and save memories.

In the following email she is very succinct in her experience. I uncovered it while sorting. At the time she was taking amantadine. It was prescribed to help deal with the dyskinesias (rapid uncontrolled movements). After a failed trip with lifelong friends Cheryl wrote this letter to explain. It was, I think, the first time she felt the need to explain things to others. Here is her email to Cathy:

Wed, Sep 5, 2018, 10:04 PM to Catherine

Cathy and Paul,

I hope you’re having a good time on Mackinac Island. The tour in which Paul and I participated was very informative and fun. We learned a lot about the island, the people who live there all year round, the horses and how they are cared for, the history of the island, what happens during the winter when the horses are moved to Michigan’s Upper Peninsula, and much more. The Harbor View Inn is a very comfortable hotel, the food is always good and there is plenty of it. This is why we were so excited about sharing this trip with you.

I want to explain to you what happened to me last weekend. Every 3 months, I have an appointment with either my neurologist or with his nurse practitioner. Last Tuesday, August 28, my appointment was with the nurse practitioner. During the past 10 months or so I have been taking a new medication that was prescribed for me by the nurse and doctor. It is a drug that is supposed to keep me from swaying side-to-side. By summer I was taking this drug 3 times a day in addition to my prescriptions of Sinemet (I’ve been taking Sinemet for the past 8 years ever since I was diagnosed with Parkinson’s Disease).

About a month ago, I began to experience hallucinations. They weren’t too bothersome. They usually manifested themselves as vivid, sometimes bad dreams. By the time I met with the nurse practitioner (Maureen) last week, these hallucinations were becoming a little more than dreams. I asked if I should begin to wean myself from this new drug. Maureen agreed that I should begin to do that, and we worked out a schedule … and I began to work on eliminating that drug the next day. For a week, I was to stop taking the 7am dose of the drug… I didn’t notice any bad reactions… I still had the hallucinations but they hadn’t become any worse. They were just an annoyance.

On Saturday, Paul and I had a nice drive from home to Lansing, Michigan. The weather was nice. We stopped for lunch in a nice restaurant in Van Wert, Ohio. Then we drove on to Lansing, checking into our hotel around 5pm. We found a nice Bravo restaurant near the hotel, and we had a delicious Italian dinner. We watched TV at the hotel for a while. As I was organizing my things and getting ready for bed, I began seeing things that weren’t really there. There were bed pillows piled on the bed the way they usually are… but I saw what looked like a little child peeking out from under the pillows. I knew this was an illusion, but it persisted. Paul and I talked about it, and Paul said that we should just go to bed and everything would be ok. Based on what had been happening in previous weeks, I thought he was probably right. So we went to bed. Then what I called the “hallucinations from hell” began. The little child kept appearing in and around the bed with the pillows continuing to move. What appeared to be a man wearing a long piece of fabric (I would not call it a cape, but more like a blanket) was “flying” around the ceiling. We tried turning out the lights… nothing changed… things were still moving around. Paul did not see any of this, but he believed me. Finally his solution was for me to close my eyes, since this was all apparently in my head. I tried that for a while, then became frustrated with the whole situation. I got up and walked out of the room in my pajamas. As soon as I heard the door to the room close behind me, I realized that I did not have the room key. Fortunately, Paul heard me and went right to the door and let me back in. But what I had just done frightened both of us. After that I closed my eyes and tried to sleep, repeatedly telling myself that none of this was real, but I wasn’t very convincing. Somehow we made it through that night, but with very little sleep.

When Sunday morning finally arrived, we found a nice restaurant close by and had some breakfast. We talked about the trip and what had happened Saturday night, and we decided that we could not stay and go on the tour. We had never experienced anything like that before, but decided that we did not want to expose anyone else to our troubles. We felt it would be better for us to leave… that would ensure that you would have a good time.

We both think it was a good decision because I continued to have these horrible hallucinations for a couple more nights. Since it was a holiday weekend, I had a difficult time getting in touch with my neurologist’s office. I sent a couple of emails, asking for assistance. Of course, it was not an emergency. I was certain that it was my body’s reaction to withdrawing the medication. I had not thought I would have such a violent reaction. On the other hand, I did not want to increase the dosage again – that would just cause me more problems. So we toughed it out. Each day and night things went a little better. At home at night, the ceiling fan in our bedroom would appear to be falling toward me and the windows would appear to be moving toward our bed… mind you, they never came all the way to the bed, but it was still unnerving. There were people and children moving around in our bedroom and in the living room (this went on day and night). In our master bathroom, which is of course right off the bedroom, a couple of the hand towels were turned into a puppy… I was very surprised when I saw that!

Early yesterday the nurse practitioner contacted me, answering my email messages to her. I had asked if it would be a good idea for me to speed up my withdrawal from this drug, or if it would only cause me more problems. She answered that she did not think my reaction could be much worse. So I should stop taking it all together, and contact her with frequent updates about my condition.

This seems to be working. I’m not out of the woods yet, but I’m definitely feeling better. And the hallucinations are almost gone (I’m almost afraid to say that). But I think they are no longer a problem.

Again, I’m very sorry that Paul and I could not go on the tour with you, but I think now you understand why. We will go on another trip together again sometime soon.. maybe in the spring or summer.

I thank you for your prayers.

Take care.

Love,

Cheryl

This is the best and clearest description she has ever given me of her hallucinatory apparitions. She still sees people, things, children and bugs but less so and the visions are not terrifying to her as they were on this trip.

To me, it is a gift to understand what she has been going through in her mind. This is a love story that is not finished. I think that many of her visions are of people she knows or has known. Much like the theme of the TV show “Ghosts” she may be able to see beyond this world. (Why not?)

Carpe Diem.

81 Miles to Home

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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 hat
Us beaching
Early morning beach
Setup
Patience almost done

Carpe patience Diem.

Walks on the Beach and other Memories

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Our selfie

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.

Carpe Diem.

Arrival Azure

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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.

Carpe Diem.

Traveling to Florida

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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.

undefined 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.

Final thoughts…

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.