My search for grace and meaning during a care partnering life with a wife with Parkinson's disease and her often confused and maddeningly disorienting world.
It used to bug me a little bit if Cheryl leaked out over night. But one day I said to myself what is the big deal. It’s just laundry.
It is now another mantra for me. Much like Carpe Diem (seize the day or seize the moment) after repeatedly saying mottoes like this out loud or not, it changes your mind about whatever is bugging you. Out loud is better.
Psychiatrists and psychologists call this cognitive talk therapy. It works for many situations. The important part is to keep doing it even if you do not think it is working for you. Eventually you will convince yourself.
After I wrote the initial thoughts I had on this topic of changing your attitude to be positive, I tripped over this article by Rachel Feintzeig in the Monday Jan 23 edition of the WSJ. It intrigued me. Naturally there is an app for that. I used to think that it was better to be a pessimist and be surprised by events than to be an optimist and be disappointed by events. This is summed up by the dismissive and sometimes arrogant, we’ll see comment that is spoken by pessimistic personalities.
An added bonus to reading Ms. Feintzeig’s article is that I learned a new albeit made up word: pronoid. A friend of her’s made it up and explained it to be the opposite of paranoid. He believed the world to be conspiring in his favor.
Pronoid – a situation where your surrounding friends and environment join forces to make your existence better than at first perceived. (I like it.)
Overnight urinary incontinence can be really inconsistent and inconvenient but in the end a load of laundry solves it. Cheryl lately is losing interest in her exercise classes that she used to like, I try to bump her into some other physical activity. Take a walk, go shopping which is also a walk, or something. Outside is best but sometimes the weather does not cooperate. Carpe the moment. I try to read her mood and find something that is not in our condo.
It does not always work but activity is best. Sedentary is less than best.
The Clementines met for lunch last Saturday and I looked around the table at the range of work experiences sitting there. And I smiled because Cheryl was completely engaged with her friends.
Women’s restrooms are never handicapped accessible even when you think they are and the provider thinks they are.
The Ladies room at Through the Garden restaurant (which we go to often) is a pretty good one. Cheryl did not get trapped with her walker last night. The door hinges into the restroom and it is nice and wide.
The Silverton Cafe which is a wonderful old pub that we have gone to for decades has a sucky-wucky ladies room. Cheryl got trapped in the stall. A coat-hanger would have been good.
The public restroom on the first floor lobby area south in St. Elizabeth Ft. Thomas has a really swell feature. I has a handicap wave pad that opens the door mechanically when you wave your hand at it. It also has motion sensitive lights which turn on when you shove your walker in but waits a few minutes and turns them off leaving you sitting in an inside room without windows or any other lighting which makes it blacker than the inside of a cow which is also not not nice. Almost a great idea though. Needs a little tweaking.
As we travel the road of parkie dilemmas I have visited a lot of women’s restrooms lately. I am not shy about shouting “doing okay?” through the door and opening the door which usually interferes with the walker coming out. Often you will see me hovering near the ladies room door when we leave the restaurant or pub for the evening. I try to not look creepy.
Most seem to hinge inward but the door is conveniently (for the builder) located in a corner so that you cannot be off to the side with the walker to open the door.
A few designers are thinking here and there. It is sporatic though. Old buildings are the worst. Restrooms do not make any money for pubs. All guys need is a bush.
I often find hope and inspiration in song and poetry. Today while reading blogs of others I tripped over this from Filosofa’s Word. Kermit and his rainbow song.
To me and I suppose many, poetry and song are the same thing. A song with a melody that is catchy enables a poor poem to live. A sweet expressive poem often needs no accompaniment. Sometimes the music is first and inspires the poem. Sometimes the poem is first and inspires the melody.
A favorite poem Desiderata sort of sums up life. It has no metre. It follows a prose format. I find it to be calming to my heart. I have not read it for a while but reading Jill’s blog page about caused me to do that today.
Carpe Diem and keep connected to everyone around you.
We had a great visit from all the kids and many of the grandkids. On New Year’s Eve I spontaneously asked our children if they had anything special planned for New Year’s Day. I asked if not would they like to gather around our table for a meal in the afternoon. I suggested about 4-ish. They all said yes.
I stole this idea from Frank C. Church. Thank you, Frank for a spontaneously good time.
Who can tell? Maybe a new family tradition? Traditions have to start somewhere. They are kept up if everyone has a good time participating. Zachary certainly had a good time. He had not seen grandma’s marble race before so Mom and Gavin helped him put it together.
Most importantly Cheryl got to have everyone at her house. She smiled and laughed at the conversation and activity. It was simply wonderful to see her smile.
Her smile and laughter are less as we head on our journey of Parkinson. Yesterday was very special to her and to me.
Asshat is one of my favorite terms for “stinker”. When I read it in a book it makes me giggle internally.
Today I was an asshat. Cheryl had a rough night. She spent a long time feeling something in her bowel that would not happen. Sadly one of the often not talked about symptoms of Parkinson is constipation. This condition is treated with various devices, more veggies, extra fiber, fiber enhanced foods, docusate sodium (stool softener), Miralax, psyllium husk powder, and others. The result of many of these maybe all is an emergency. And sometimes a declogging device. We have been down this road many times.
Why I did not recognize it last night at 3 AM is beyond me. Maybe not.
I was an asshat. Today I am trying to recover from my overnight asshattedness.
There are days, and this may be one of them, when I wish for Cheryl’s physical Parkinson’s symptoms to be worse and her mental Parkinson to be less. She actually moves quite well with the C/L in her system during the day. If in the middle of the night she might get up to toilet once or twice she moves pretty well then too. She might be slow and slightly disoriented but at 3 AM I am too.
Late Autumn and Winter is the worst for her mentally. Last evening she stayed up very late; frantically organizing and reorganizing her papers and cards in her office. She eventually allowed me to help her to bed about 11:30 PM. I heard the clock strike midnight before she succumbed to sleep. She had been talking gibberish about the kids.
five repetitive themes
She is often confused as to who I am. I am that other Paul. I am Dad (as I was last night encouraging her to get rest before our big outing with Marilyn.) Some times I am Scott but if not she will ask, “Did Scott go home? Or, Is Scott here?” Some of this is simply aphasia and she cannot find a name in her head. (Me too, occasionally.) If I cause stress in her by insisting on something she will be very anxious about me being around. Insisting is always a bad idea but I often forget that. I try to hedge and let her decide she wants to – go to bed, eat dinner, have a cookie, have cereal for breakfast, etc. Often that works, often it does not. It can be frustrating when you are also tired.
“I want to go home now.” – She believes for a time often late at night that she is not home and wants to go home. Sometimes this delusion is overpowering and I help her find shoes and a coat and I drive her around a four mile circle and home. I reinforce the we are home thought by saying plainly, “we’re home now. I’m glad to be here finally.” That will reset her brain and she starts to think we are home. Sometimes it works only partially and she thinks – wow, this is neat. How did they get all our stuff here so fast?
Recently she has asked how we will get all our stuff home? Do we need to get some movers? I merely replied yes, I will call them tomorrow and set it up. — I wonder how long the “I will take care of that tomorrow” ploy will last. For now it does. She has not yet asked when I was going to call the movers in the morning while I am organizing breakfast.
“We are in Detroit” When Cheryl went to high school she was following the prescribed path to become a Franciscan nun. I met her originally in the summer between her junior and senior years in high school. When she was a freshman, a teacher she had realized she may have some potential in english or journalism and arranged for Cheryl and a couple of her classmates to attend a journalism workshop in Detroit for a couple weeks between her first and second years in high school. It made a deep impression on her. In many ways, when she talks about it, it was as though she traveled to a foreign land. And she thoroughly enjoyed every aspect of it. Her favorite TV show and the only one she really watches is a show called Bob (<3) Abishola which is set in Detroit. Watching the the show, she will tell me stories about Detroit but mostly I think she looks at the screen because some views will spark a memory.
“When are we going home?” Is her theme some evenings when she is sure we are in Detroit. I did not realize at first where she thought we were. I discovered this later through conversation. — I can respond, “We are staying here tonight and going home in the morning. Is that okay with you? It is late and would rather drive home in the morning.” Most times traveling along with this theme she responds with, “Yes that is a good ideas. We should rest first.” Once in awhile the Detroit delusion lingers until morning. It is often gone at breakfast.
It is time for office work — is usually a physical activity. In our second bedroom that became her office when we bought this condo she will spend time organizing. Or doing nothing. It is her version of punding. If she starts doing it at 9 or 10 PM there is no easy fix to getting her to be interested in sleep even when it is obvious to me that she is very tired. She takes a prescription to help her sleep as well as melatonin to help her fall asleep but her will is strong when she decides to – get this stuff organized. It breaks my heart to see her do this mindless activity. Last night I sat with her because the later she stays up the wobblier she gets but her confused mind will not let her see this in herself. In her brain she is a 35-year-old computer database analyst and the deadline is tomorrow.
These behaviors generally occur late in the evening. I sometimes succeed in not being Mr. Cranky Pants. This part of His plan sucks for sure. It is hard to be calm when the Plan has dumped on you and the previous night was smooth and uneventful.
In this season of happy and family and celebration, after I have gotten through all the wrapping and cookie making and other organizational tasks, I slow to take stock of the year. Good things happened and not so good things happened but mostly this year was. It is in the past now.
Throughout this year Facebook is a personal source of joy, amusement, interest, empathy and puzzlement. When some political whiny rant appears, I am puzzled by the things total strangers will say to others that they would not say in person. I am filled with joy at the pictures of children both young and old. I am amused by the various MEME cards that folks post, sometimes without thinking. I am interested in other care giver’s thoughts as they travel down their road of Parkinson. And I am empathetic to their particular struggles. In this collage of pictures selected in no particular sequence are pictures of things, people and MEMEs that appeared on Facebook during the past year and I downloaded to my tablet as I watched the TV news and waited for Cheryl to wake up.
The good things
The joy in Zachary’s face. He always makes me smile.
Luke’s artistic muses in photography
Family
family gatherings
Max is off to Miami University — I am class of ’72
Laurencia is 21!
Cindy Smith
Linda Weisgerber
Kathy Mellen
Mary Jo Horton
Jane Pohlman
Parkinson Community Fitness
UC Health
Jeff and Stephanie’s ELFie – Elizabeth Laura Fisher
Zane and Charlotte
Lydia (think songs from the Music man)
Anniversaries
Anna’s 50th birthday (I love you)
trips and vacations
New people in our lives
Looking back and memories
Learning how to make cookies
Sr. Carren and Nancy Strapp
Visits from friends of Cheryl
Phone calls to Cheryl from her friends
Special friends
small faces and their happiness
Jana Ann
The class I took on being a good care partner (Linda stayed with Cheryl so I could go.)
A new found interest in cookies and muffins
Finding out that adjusting meds, schedules and eating has reduced Cheryl’s upset stomach to non-existent almost. (and the neurologist MDS says bravo.)
Lunch with Marilyn
The not so good things
Constant reminder of Parkinson
Anna’s Fiftieth birthday (wow, I am old.)
Cheryl’s lost memory
Learning how to make cookies (there have been disasters.)
Cheryl’s worsening confusion in the evening
dementia in all its forms – delusion, hallucination, Capgras, sundowner, showtime
frost on the window (I have never been a big fan of winter)
avocados
Cheryl wanting to talk (call) to her mother in the evening (which worries me – I think – unnecessarily.)
Late night punding in her office
These are both incomplete lists. However the good list is already way longer than the not so good list. (And a couple of those are tongue-in-cheek jokes.) I constantly try to turn away from letting Parkinson and dementia drive our life.
I will probably add to these lists during the holiday down time.
There is lots of discussion about apathy and Parkinson. This morning I decided that Parkinson merely enabled Cheryl’s brain with a different sense of urgency or importance. Perhaps I needed to embrace that.
Last night as I coaxed her to bed her impostor syndrome was strong. We drove around for a few minutes and looked at the Christmas decorations while we “drove home”. It usually works and she thinks she is home. It did not work completely that night but she seemed to accept the fact that she was very tired and needed to rest. She went to bed with pajamas on the bottom and her normal daytime shirt on the top (just in case).
In the morning she slept late. When I woke her and got her going I pointed out that she had about two hours until her exercise class started, so she had to move it along unless she did not want to go. She refused to be speeded up and responded that I have been late before. She thinks exercise is important and wants to do it and enjoys it once she gets started. I know that it helps her too. But my sense of urgency and lateness is much different than hers.
I shifted my schedule to agree with her parkie time. My urgency evaporated along with my stress associated with getting her moving.
Gift wrap at a department store was free for purchases from that store. The malls often had a bunch of girl scouts or boy scouts wrapping boxes and raising money for their troop. If you did not want to get stuff wrapped boxes were available from the department store. (With their logo)
That slowly faded away over time. It was part of the season and might still be there but I have not shopped in a department store for several years. Parkinson disease interlaced with dementia does not enable that to occur with ease. I lament that fact.
This year we did spend some time shopping at J C Penney. Cheryl has always liked Penney’s store. It is one of the few department store chains still surviving after Federated Department Stores sucked up many of the littler ones and became Macy’s. A couple days ago a nice gentleman gave us a couple coupons on the way in the door at J C Penney and bid us well as we began our shopping experience. Later when we had a bunch of carefully selected gifts piled onto Cheryl’s walker and headed to the front to purchase them, he saw us coming and as the line to check out was long he asked the woman staffing the cosmetics counter who was idle to check us out. She smiled and said sure she would do that.
As we approached the counter to do that another frantic old woman who had just come in the door barged in front of us and asked the cosmetic counter staff if she could “pay her bill here” because the line was too long to stand in.
Two things I have not thought about perhaps ever in my life; driving to the actual department store to make a minimum payment on an invoice that was sent to me via USPS, something that can be done by return mail and manifesting surprise at the length of the checkout line at 1 PM on a Sunday afternoon two weeks before Christmas. Perhaps she could not afford a stamp or did not have a stamp and the bill was due on Monday. This woman decided to chat with me about those things while the woman behind the counter opened a different computer to access the billing records and accept the $35 minimum payment on her J C Penney account and applied it to the customer’s Visa account. It is easy to understand how cash strapped elderly women get over their head in debt. (Sorry, that was unkind.) I did not chat. I merely stood silent and waited while Cheryl stood there looking tired.
Eventually the nitwit was gone and the cosmetic woman picked up our purchases on her counter and said, I need to get some larger shopping bags. She was gone for about 20 seconds. She checked us out and I helped put the stuff in the bags because she had very little space on her cosmetics counter.
We completed our purchase and I thanked the woman for allowing us to check out with her. She smiled. Perhaps no one had thanked her for helping them that day.
As we left the store I noticed that the long line had dissipated. I remarked about that to the gentleman who was still staffing the door passing out coupons. He smiled and wished us a good afternoon.
Adjunct_Wizard 