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.
Last evening as we drove to our granddaughter’s high school graduation it became apparent to me that although Cheryl knew who I was she did not really know who I am. She started talking about events in the past that we had done or children and grandchildren, sometimes mixing those together. Her discussion might start out as Paul and I did this or Paul and I did that or Paul told me etc. It makes one wonder about the complexity of the human mind.
In one of these conversations, an incredibly lucid one, she said to me that she thought her Parkinson disease was getting worse. (AHA) She went on to say that her memory was very bad at times. I just took a deep breath and let her continue. She explained that she was having a harder and harder time remembering names and relationships (she said “who they belong to”) and that thought bothered her. Throughout the rest of the evening at the graduation ceremony, pictures in the courtyard outside the high school and on the way home, this failure to remember names and relationships was forefront on her mind.
This information is very important to Cheryl. Embarrassment or shyness keeps her from merely asking, “who are you?” I told her that she can always ask me who the other people are and I would tell if I knew. I am not shy. I merely say, I’m sorry I’ve lost your name in my head.
Most times these drive along conversations fall into the category of prattle and I can respond with, ugh-huh or yes that is probably true or I don’t know about that but, yesterday evening it was more serious than that. Last night it affected her sleep as she began to worry about how everyone fits together. She could not find those relationships in her head to her satisfaction. She spent the three hours from eleven PM to two AM speaking to herself in a low voice and fidgeting with her hands. Fidgeting often accompanies her discussions with herself as well as others.
There was a lot of hugging and reassurance that I would always help. She on the other hand is aware of her memories dissipating into the ether and it scares her.
Indeed, her disease is getting worse.
Living in the present is all that is left when one cannot plan ahead nor remember past experiences. Disappointment was rampant in our drive along yesterday. Regan’s graduation ceremony, however, was well orchestrated. She is on to the next thing. (Smartphones take really crappy long photos but here is some from the ceremony.)
This morning after Tony Decouple told us that they were following news of what could become news later today, I turned him off. Perhaps in the future Ronald and Donald will fight it out in the abortion war staged for prime time but how will that solve the debt crisis? A cacophony of unimportant drivel assails one’s ears on the commercial news broadcasts.
Social media is no more informative.
“That is ….. on so many different levels” – How does one interpret that omment? Tony knowingly nods his head and Nate agrees. Buy this thing through our Deals and keep miscellaneous stuff from falling in the crack between the console and the seat. Try not getting it out while the car is moving at fifty miles an hour. Why is there a crack? Remember bench seats? Romantic.
As humans we interpret what we hear against our education and prior knowledge. What is important to us may not be important to others. Unless we can construct a way to make it important to others.
Guns are bad. Guns are good. Mental health is bad. Mental health is good. Take this drug and remove fat. Take this drug to make type two diabetes to go away. Take this drug to combat the effects of taking that drug. Take this drug and be stronger, stiffer and last longer; this one is not advertised. Men just know about it. Take this drug and live nine months longer even though you will die anyway. There is a thought. We are all going to die. No one gets out of here alive.
Bent carrot disease has a patron. His name is Peyronie. Cancer has Hodgkin. Dementia has both Lewey and Alzheimer. Movement has Parkinson.
It is going to warm up to 80 degrees today but tomorrow it going to be much colder, only 72 degrees. Much colder is a modifier I probably would not have used but Tara, the weather interpreter, has to be heard above the other unimportant noise. Why have television stations devoted so much money and technology to something that is essentially a PowerPoint presentation?
I wonder how many people change their drive to work based on the traffic report? That used to come via a reporter in a helicopter who was barely able to talk over the top of the engine noise and the wop-wop of the blades. The internet has made so many things safer. No more flying in the fog. I am so glad Al invented the internet.
What does it all mean? A fusillade of information unimportant for living daily life bombards us all day long.
Jan? Jan? (me – what?) Do the doctors know if this Cesarean is scheduled or not? (me- I don’t know. I’m sure they will do what’s necessary. Try to get some sleep.) Okay. Wake me when it’s done.
Early morning as well as late evening conversations can be odd sometimes. This one from last night as she was falling asleep stuck with me.
Yesterday (a few days ago actually) was Easter Sunday. Like many families we gathered to celebrate it and simply be together.
Grandpa made a ham and all the kids showed up with food and drinks to provide sustenance.
All of the grandchildren, save one, are teenagers or older anxious to get onto their lives. As I looked around the room and watched Cheryl light up and become mom for awhile I wondered who they would all turn out to be.
The oldest soon to be graduated from the university will remain in the same city. After having accepted a position with a business consulting firm there, apartment hunting is the main concern. Frugality seems the overriding criteria although location is also important. There is a gap between starting the new job and commencement at the university so there is time for vacation with family and trips with friends before starting the new career. This time of life is exciting. It was for me. I can understand a little about how this grandchild is feeling. She was such a cute little one growing up. We have many great memories of her. I pray she will do well in life.
Her younger brother is in his first year of university. It is the transition year. He is looking for himself. He is attending classes at the same school that I was graduated from 50 years ago. The fact that he is attending my old school probably influences how I think about him. He will do fine in life if he becomes aware of other’s needs. He is attentive to his grandmother. I remind him when I get the chance to take classes in topics that he may be interested in. He is actually a pretty good family storyteller. He found some old videos from his family’s younger years and strung them together in a competent narrative. I suggested journalism might help with his nascent storytelling talent.
Behind him in age is a younger sister who after becoming an early reader and chocoholic like me, flashed by him in high school math classes. She ran through the math available at her high school and takes college level classes. She has learned to fly and is interested in attending the Air Force Academy in Colorado. Her mother wants her to have a backup plan if she does not get into the academy but I think her heart is set on Colorado. She is so young. Her entire life stretching before her. She is a wonderful dancer and a part of her high school’s competition dance team. She will accomplish her goals.
The baby sister in that same family is clever and crafty. She is a child that has been and is always interested in many things both arts and crafts. She has her own workroom in the basement of their house were she can pursue her interests without disturbance. She plays in her high school band and seems to love it. Just a few months from driving age and the freedom that driving yourself to activities and friend’s houses, she too has limitless horizons in front of her.
Her cousin is an avid swimmer and swims with his high school swim team. He is ahead of his younger sibling by eleven years in life. Their relationship is special. At grandma’s house he often sits quietly somewhere with his earbuds in, futzing with some game on his phone. Like many kids his age (and his Dad) he is an avid gamer. He does not isolate himself though, if you address him directly he responds. He has a couple more years until he needs to think about university or other. I hope he gets his driving license soon. I could hire him to take me places. He is a good student and will do well.
His tiny brother is eleven solar circuits behind him. His happy face lights up the room and makes my heart smile. Grandma got down on the floor to help with the marble track. Oh, to be young again.
Another grandson and the oldest of his family group is still searching for himself. He has come to the conclusion that driving pizzas for a living, although okay for now, is not a career goal. He is a wonderful photographer with a high skill for composition that I think he should pursue. But I am grandpa. I am not a counselor. He is still searching for his dream.
The only one of the grandchildren missing is his sister. She graduates from high school next month and has her sights set on a university in southern Ohio. She is president of her high school class, an avid volleyball player and has her sights set on bigger things. She will do well in life.
It was a wonderful visit and I hope a good time was had by all.
There is a sameness to our daily life with this disappointing disease of Sam Parkinson. On many of these days I am saddened by the fact that he described it but was unable to say, “Aha! Here is a cure.” Early on few have been able to describe all of the other features of the disease. From my perspective, preparation is a big part of success in future endeavors. All of these kids I have described know this. Some learned it early, some learned it later but all of them recognize preparation is important. I want to be prepared for what the future brings Cheryl and me. So many aspects of Parkinson disease are unknown. Every day is new. Every day is the same. Easter, however, was special. Most were here.
Cheryl has in her office files a phenomenal amount of random keepings of the pieces of her life and ours together. In her current state of Parkinson she will look through, take out, put back and reorganize these as she sees fit on certain days.
Pieces can come out of the office and land on the dinning room table for perusal and examination. A few days ago a real estate listing for our previous house appeared on the table papercliped to a receipt for home owners insurance for the first month that we lived there in 1980. If only I had been more interested in preserving the history of our small family I might be able to help her with discussions that begin “remember when… ?” I am disappointed in myself when I cannot help her. Much of that, for me, is lost in a fog of work, kids, school events, soccer games, parental worry, ( et al. ) none of which was collected in my memory with great detail.
I was adult then. Why can I not recall details like she can even through the mist of Parkinson? – although she has lost other memories.
Yesterday we went on one of our trips to a new place for lunch. She seemed to be doing well mentally and physically.
Tuesday we visited with her neurologist (MDS) which meant that Monday night through Tuesday morning she slept little. She was anxious to not miss the appointment. The rest of Tuesday and much of Wednesday was used up with recovery from lack of sleep, showtime for the NP, meds adjustments, pizza Tuesday with extra participants and simply mental fatigue.
These days her mind seems to have focused on Easter, so, much of our luncheon conversation centered on hard-boiled eggs, jellybeans, artificial grass and other items associated with Easter and Easter egg hunts. She ate her usual BLT and I had another sandwich with fires. We shared the fries. The Mason Grill was one of my favorite lunch places when I worked in my other career as engineer and Mr. Industrial Fixit guy. She remarked as we ate that she used to bring her Mom to this place and her Mom liked it. She reminisced about her mother and taking her to lunch when her mom was in assisted living.
Last evening she went to bed at the normal time and got up a few minutes later because her mind was racing around Easter services at our parish. She is unwilling to accept my premise that I will not let her miss anything important. I tell her this often. (In the background she recognizes that presence at church gatherings is not a high priority for me.) She sat at the dinning room table which has lately become her center of operations and read the church bulletin. She was very still staring at the bulletin for December 22, 2022. (I imagine inside her head her brain was struggling with Christmas : Easter : Christmas : Easter in a parkie way.) Words, dates and times lose their meaning in the evening.
I read my book for awhile longer and we went to bed at 11:15 or so.
Today I could not arouse her until 10AM. She was in the same position that she started in at 11:15 the previous night.
This novel by Joy Fielding is a fictional story with Parkinson’s disease as part of the story line. I tripped over this novel in the library the other day and brought it home. It was not until I began reading it that I picked up the Parkinson’s piece of the story line.
It is also a discussion of alternative truths, lies and deceit.
It is about thoroughly checking references when hiring help in your home.
Dysfunctional families always make a good story. Most times they are the story. There is plenty of that in this novel.
Pleasing our parents is something that we always try to do. Even when the parent is gone many of us still try. Even if the parent is old and cantankerous.
Bad parenting, good parenting, mutual respect and aid is all part of the complicated state of marriage.
Kids being kids add comic relief.
Writer’s ego and husband philanderers creep in and out of the story line.
With an amusing and unexpected plot twist near the end, it changed how I thought about the characters.
And a satisfying hallmark style ending always makes for a good completion chapter.
Read books. The day goes faster. Especially days that only have decaf.
Last evening most of Cheryl’s sisters and all of her brothers came to our house for a sibs dinner. Ostensibly a celebration of the youngest’s birthday. Ken goes to Florida on his birthday week. He looked tan. I made spaghetti and meatballs. Cheryl likes that. I made paine ordinaire (simple bread) because I like that. Tari brought salad. We had three desserts. We sang happy birthday.
Later I found Cheryl in the back closet wondering where she was. She seemed in wonder that all her clothes had somehow been moved to the back closet by our bedroom. She selected her blue zip-up jacket because she was cold. I was hot. Birthday boy was wearing shorts. The thermometer read 74.
She was very excited last night. She slept poorly overnight. So did I so today I am reading.
I hate Mondays. Mom told me this late in her life. I asked her why? I pointed out that she had not worked for decades. I don’t like Monday was her response.
Parkies can be grumpy on Monday too. Cheryl is not typically. I guess I am a bit because I did not sleep as well as I wanted. My bladder got me up at 4am and itchy legs kept me up for awhile.
I finished the wordle and went back to bed about 5am. The sun was up when I awoke again at 8. Cheryl was awake also so I made coffee and went retrieve the garbage can and the newspapers.
Except for the fact that I am retired and Cheryl has Parkinson’s disease and does not move well. A regular day. Ho Hum
A Hospice center is a quiet, peaceful and sad place.
The old meaning of a place of rest for travelers is an appropriate one. It is a place of rest between here and the after.
Cheryl and I have been visiting Fr. Gerry Witzemann. He is dying. Gerry married us years ago or as Cheryl likes to say, officiated at our wedding. Her comment is more correct of course. Cheryl’s cousin started out as a Franciscan priest. When his mother became ill and elderly her wanted to do more for her. His order wanted him to go to the southwest to minister. He left the Franciscans to remain in the area and help his mother as best he could.
This is our fourth visit. Gerry is not ready. On our first visit he indicated that he was ready. Are any of us ready for afterward? Sitting with someone that you know will not recover turns one to introspection.
Soon and very soon…
Today his niece Sherri is here. Cheryl can talk to her cousin about things that she knows little about. That part of her family lived close by when she was a child. But as people grow older they spread out. Sherri’s mother Verna, Gerry’s sister passed away a couple weeks ago. Sherri took care of her mother for the last three years of her life, at home, with dementia. What a grace filled presence. She once got up to talk to her uncle, “It’s okay Uncle Gerry. Mom is waiting for you. So is grandma and grandpa.”
Sheri was in the army. She was a nurse and a nursing supervisor. She is a very pleasant conversationalist. Her husband passed away in 1993. They have no children. As a reservist she was called up and spent a year in Iraq in charge of the nursing staff in the hospital set up by the army. Gerry was the Witzemann family archivist. It was his hobby for years. He has lots of notes about the family history. Sherri now has his information.
We exchanged phone numbers.
Gerry won’t be with us much longer and that is sad. Many folks who come to visit him and he has many, are uncomfortable. That is understandable – and sad. Somehow it was neither sad nor uncomfortable with Sherri there. We were just there with Gerry.
Soon Gerry will be gone from us.That is why he is with hospice.
(Fr. Gerry Witzemann passed out of this existence at 5:30 am February 5, 2023. A Sunday the Lord’s day. How appropriate. May he rest in peace forever.)
Sheri called yesterday afternoon and talked to Cheryl some time. Cheryl was working on “organizing her office”. It was a slow day for her. It was the anniversary of her father’s birth. He has been gone for some time now but if he was alive he would have been 100.
Sheri had called a couple days ago in response to getting a Christmas card from us. I found the message she left on our phone when I listened to the message from my brother-in-law. He had called to wish us a Merry Christmas and I did not pick up right away because we were eating. I discovered Sheri’s message from a couple days prior. Sheri is a dear friend. Her sister has Parkinson in one its many flavors also.
Sheri,
Thank you so much for calling Cheryl yesterday. She was having a slow day.
Yesterday was her Dad's birthday. If he was still alive he would have turned 100. Her brothers and us gathered at her Dad's favorite bar in St. Bernard last night. She had a good time I think but did not always know what was going on. 😔
When you hung up the phone she asked me who she was talking to. She sometimes forgets who called and is too embarrassed to ask. I often stay near her when she is talking to someone and ask something using the person's name. I was busy with other chores. Memory loss, aphasia and confusion is a constant struggle for her.
You called while she was sorting through a bunch of old Christmas cards and some new cards on her desk. She reads and rereads them and has long conversations with each person that she tells me about later. Greeting cards are important to her. She cherishes all of them and rarely throws them away. 😁
Thanks for calling. I could hear that for awhile she was talking to a friend on the phone and working on her stuff. You lifted her spirit. Earlier in the day she told me she was sad that all our parents are gone now which is a pretty lucid thought for her. She talks about and to her Mom and deceased sister Janice a lot.
You have no idea how much you helped yesterday.
Thanks again,
I thanked Sheri for talking to Cheryl. Cheryl becomes very animated when someone calls her on the phone. When we come back from anywhere her first thought is to go into her office and check for messages on the landline. real people rarely call our landline. It is not actually a landline as voice over IP became popular perhaps 20 or more years ago. Cincinnati Bell changed its name to Fioptics (again) to highlight its business. Many years ago it was Broadwing. (I don’t know either.) I have digressed.
This article talks about the importance of staying in touch with older adults. It target was old people during the height of the pandemic pandemonium but it is a thing to think about with any older adult with an isolating disease like Parkinson’s or Alzheimer’s. Older adults do not always realize that they are isolated. Children and family could call and check up if they wanted to do that.
Now if I could get her brothers or sisters to call arbitrarily out of the blue once in a while, much would be better.
I talked to Joyce yesterday and wished her a Happy Birthday. She and I are last of our family still awake in the natural world. She sent me these pictures of her and I sent her a picture of me. Her friends went out to celebrate her birthday and she got to meet Santa.
I sent her a text message early in the morning and wished her a happy birthday. We are the middle two in our family. Our younger sister and older brother are both gone now. It is just us. She called me back when she was walking her Mexican rescue dog. We talked about everything and nothing while she walked her dog. I commented that the crows were far away this morning and she told me it was cold in Portland so her ear phones were under her hat. She sent me a picture.
I think it is important to have family around. When our brother passed out of this life a couple years ago in the beginning of the whole covid pandemonium from something else not covid, it left another hole in our family. When our younger sister passed away from cancer in 2008 she took part of me with her. I had been her stem cell donor. Dad died the year before our sister. Mom died a few years later. Now Joyce and I are left.
We both have the same Carhartt hat. How warm is that?
Adjunct_Wizard 