Perception

I Suppose it is True

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One cannot be certain where the day is going when the person you care about most is dealing with Parkinson, memory loss and rapidly developing dementia. I have not spent much time away from Cheryl in my mind lately but Edie’s words made me think.

NEVER REGRET A DAY IN YOUR LIFE: GOOD DAYS GIVE HAPPINESS, BAD DAYS GIVE EXPERIENCE, WORST DAYS GIVE LESSONS, AND BEST DAYS GIVE MEMORIES.

— from Edie Kynard (a friend on Facebook)

The past few days are oddly jumbled up in my head. Yesterday we continued to track down Cheryl’s cousins-that-she-has-not-seen-for-awhile and had lunch. We picked up Lois and in keeping with our plan went to eat in a restaurant we had not been to before. Wild Mike’s it was called. Sort of a cross between a diner and a sports bar. In Cincinnati how you tell that is the place sells boneless chicken wings, real chicken wings, hoagies and hamburgers. It was a good time and we stopped in with Lois for an hour or so and Cheryl went through her family reunion book with Lois.

This afternoon two of Cheryl’s friends came to visit for awhile. I went to the barber for a much needed tune-up. I enjoyed the camaraderie of the barber shop that I have been going to for 50 years or so.

In the evening I made dinner in the oven as rain was predicted and I did not want to grill out in the wet. We ate on the back patio waiting for the rain that never did come. Cheryl pronounced it good and ate most of it. We did not argue. We enjoyed a random conversation about plants and rocks and things in the woodsy area behind our condo. She told me about some kids in the trees that I could not see. I asked her what they were doing. Just hanging there she said.

And today, although it was not best, is a good memory. Tomorrow she said as I helped her to bed – I want to put up the Christmas tree.

Carpe Diem

Hoping against Hope

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For many weeks about eight or so Cheryl has been aware of where she is at night. It all vanished tonight and I drove her around the reset block back to our condo and home.

A dark starless nightmare as I prayed the trip would take her mind home.

I found an old movie called “Nebraska” and we had been watching it for 30-40 minutes. Cheryl seemed to be following the story line. I believed that she was anyway. After forty minutes or so after taking her bedtime pills she announced that she wanted to go home. I clarified like always do with response- we are home. We went to church, then to a restaurant and came home to here where we live. To which she responded that she wanted to go to her “other” home. Her imposter syndrome had reared its ugly head.

I wonder what triggers this delusion. The movie dealt with early dementia issues in the main character’s father who read the clearinghouse sweepstakes mailer and believed that he had won a million dollars. He wanted to travel to Lincoln Nebraska to get his winnings. His son humors him rather than fighting his father’s delusional behavior and make a road trip to Lincoln. Things happen along the way as the story unfolds.

We have watched other movies and Cheryl merely announces that she is tired and wants to go to bed. Tonight she wanted to go home to bed. Tomorrow she will have no memory of this episode. I will not mention it. If she does we will talk about it. She will not mention it though. If she does it will be the first time.

Carpe Diem

It is Important to Listen

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Research study questions are I opening (I know you think eye opening) but I meant I as in me. Before the pandemic pandemonium Cheryl agreed to participate in a longitudinal study on Parkinson’s disease.

There is an initial evaluation of mobility and mental agility. There is a blood test, urine test and stool sample test.

Much of the mental agility data collection effort is question and answer style. Several different instruments are used, one of which is the Beck Depression Inventory. As Cynthia (study tester) asked Cheryl the questions and marked her answers, Cheryl began to cry. Cynthia decided to skip the test. She did the same thing with the MOCA test. Cheryl could not draw a clock last time she took it.

As Cheryl was using the restroom I remarked to Cynthia that this might be the last time that Cheryl would be able to come and participate in Dr. Espay’s study. It was not that I thought she did not want to, rather, her mind is gone to the point that she may be of no help to them. Perhaps I should not impose on Cheryl’s desire to help others. A year from now she probably will not remember this visit.

The Beck instrument starts with questions such as:

1.
0 I do not feel sad.
1 I feel sad
2 I am sad all the time and I can’t snap out of it.
3 I am so sad and unhappy that I can’t stand it.
2.
0 I am not particularly discouraged about the future.
1 I feel discouraged about the future.
2 I feel I have nothing to look forward to.
3 I feel the future is hopeless and that things cannot improve.

… etc.

Cheryl teared up on question 2. In each question the participant selects the answer that they feel at the time. At the end a score is computed that evaluates the participant’s depression. Cheryl’s emotional level was strong on the second question and Cynthia stopped the instrument.

I had not realized how this disease was weighing on her emotions. As the disease progresses Cheryl needs more help physically. She relies more on me and others around her. She is very resistant to accept help from others constantly. She gave up driving long ago. A big part of her independence left her when she gave up driving.

It has proven to be a very emotional disease. Cheryl becomes angry with me when I help her “too much”. We have been together too long for me to ignore her needs. I help her anyway. She gets angry with me. I get angry with the disease and what it has stolen from us.

And then my heart melts.

Carpe Diem.

It is Strange

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Yesterday I looked at my notebook and realized I had written little in my journal for several days. I pondered the fact that things seem to smooth out for a bit. Usually it is a long enough bit that one can be lulled into the idea that things are changing. Things are changing for the better.

And then,

Stuff that lost your attention falls in the dumpster.

Last night after Cheryl’s previous night of reasonably good sleep stayed awake all night.

Today will be a long one. She will be tired all day. So will I.

Carpe Diem, dammit!

Let Conversation Flow

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On the third Monday evening of each month we gather at the Parkinson Community Fitness facility for our support group meeting. Support groups are not for everyone. I would probably not go if it was left up to me. (I am smiling.) As this disease has taken over I realize that sometimes I just want to listen to other people’s stories. I want to hear what they are interested in. I want to let them tell me what their concerns are. I have to resist telling them how to fix it long enough to discover how they solved that problem or overcame that obstacle. It is part of my personality to jump in with a solution. If I resist the temptation long enough, I learn things. Dad said to me a long time ago that you need to listen to the other guy even if you think he is a jerk because he might have a good idea. I took that to heart and remember it. It was during my early working career. Do not let personalities get in the way of good ideas.

Do not let personalities get in the way of conversation. Little snippets of intimate knowledge and deep personal beliefs and fears emerge in between comments. Listen carefully. Many people are not very guarded in their speech. Many will become comfortable and reveal small but important details that might not be spoken out loud in another venue.

Our group always starts with a list conversation starters. We are not that good. There are plenty of support group resource materials. We always select too many and often use few or none. For our Monday meeting we used these seven.

  1. A UC Health article shows in a new trial, led by Dr. Espay, says that drugs delivered continuously through a pump was more effective at controlling symptoms of Parkinson’s disease without causing dyskinesia. Also, over a three month trial period, patients receiving ND0612 had 1.73 more hours of daily “On Time”. Does anyone have additional information about this?
  1. What are some fun activities for Parkinson’s Patients?
  1. What are some positive coping mechanisms for managing Parkinson’s Disease?
  1. What are some important goals for caregivers to have in caring for a Parkinson’s Patient?
  1. Can you name any other ways to improve the quality of life of a Parkinson’s Patient?
  1. How can a person with Parkinson’s Disease cope with depression and/or anxiety?
  1. Have you, as a Parkinson’s disease patient, made any adaptations to your diet that have helped you in any way physically and/or mentally?

Our group is a joint group. Some have Parkinson. Some are care partners. Last evening one of the group members needed to talk about her recent experience as caregiver to her husband of many years. They recently changed doctors. (It is important to find a doctor that you trust in.) During the doctor’s initial evaluation, the great ones do not accept what is written in previous records from others, which was supposed to last for two hours, her husband experienced some odd symptoms which extended the visit by several hours. Tests were done. After a team evaluation it was determined that his meds and dosage were incorrect. These were changed and in her words, he is like the man I married again. In a support group environment let the members speak about their concerns at the present regardless of the list of conversation starters that was sent prior to the meeting.

The second topic – fun ideas – produced a long list of activities. We can save the rest for later. Sometimes it is necessary to simply talk to a group that empathizes with your situation in life.

Carpe Diem.

Like a Bunch of Random Boulders

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What Rose Forgot is a novel by Nevada Barr. Rose, the main character, is struggling with mental illness and memory loss brought on by some unseemly characters in her family. Her granddaughter helps her through the dilemma that she finds herself in. But one line early in the novel stuck out – memories fell into her head like random boulders from a bucket high up all jumbled with no relationship to each other.

Cheryl’s conversation, especially in the evening, is much like that. Kathy came to visit her today and I noticed that her conversation and memories are like that during the day also. Kathy ignored any incongruities if she knew they where there. Had I been sitting near Cheryl I would have had to correct her memory of people and events. It is really, really difficult for me to not jump in to the conversation to fix things.

But I am getting better at it.

I am not certain that I got the quote right but the image is there. Random chunks of memory come into Cheryl’s head. It makes me sad. Sometimes she realizes that this is happening.

Tonight when we came back from getting ice cream at our favorite ice cream store, she went off looking for her Mom in our condo. I did not stop her or correct her impression. And, to her, perhaps, Elaine was there.

I am in pursuit of her calmness of mind. And I admit it makes me anxious.

Carpe Diem

Shaking off The “What Ifs”

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Every once in awhile I get the what-if-I-did-this-instead-of-that in life blues (mood, meditation, discernment). They have been strong for the past couple weeks.

I suppose this winter has gotten me down more than previous. Cheryl seems more and more mentally frail as the PD/dementia progresses. I think that bothers me more than I want to admit to myself.

She has not seen the woman who lives in the corner of our bedroom for several weeks. Cheryl thinks her name is Jean but she is not sure of that.

The what-ifs instill a background anger. It is a sort of smoldering why-isn’t-there-a-fix mood. Perhaps it is time for me to find a shrink.

Therapy for me is to find a novel that captures and keeps my interest. I have never been one to stick with it if the story has wandered off into the weeds. Recently I read “A Man Called Ove” by Fredrik Bachman. It spoke to my heart and kept my interest. Ove was pretty down after his wife passed away but many of his neighbors kept inadvertently messing with his suicide plans and the story goes on from there.

Typically I read for an hour or two before going to bed in the evening. If Cheryl is awake when I come to bed I notice that she does not sleep well through the night. I let her sleep later and then feel guilty all day while I am getting her back onto her med schedule. And it creates anxious stress in me as I keep track of her medications more closely until she is caught up.

The medications only seem to work sorta.

Parkinson does seem to be endless and that starts to get me thinking about the What-Ifs again. There are no take-backs in this life but wow does PD suck.

I am hoping that she will get her earrings in in time for us to go for a walk in the sunshine today. I would help but that merely causes a spat. So far it is not looking good.

Carpe Diem. (And then she appears.)

And Tonight We had to Go Home

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Sometimes I can convince her that we have come home and we have not left the house.

On other days and nights that is impossible. No night is the same. On this night we had to go home.

I gently got her in the car. I was proud of the fact that I did not get upset. As we drove around the block about 2 mile per hour below the speed limit – the ride is longer that way – I kept up some chatter about various things. Some stories about upcoming events on our calendar.

As we drove in front of our regular Pizza Tuesday spot, she told me about being there last Friday with Paul.

As I turned the corner to climb the hill, I asked her if she knew the way from here. I got no response. As we got to the top of the hill and she began to recognize some land marks she said, “I live on the other side of all that.” (She was headed home in her mind.)

As we got close to our driveway entrance I said, “It’s good to be home. Isn’t it?” she responded, “Yes, it is. I’m tired.”

Dementia, Capgras and Parkinson were in full cooperation this night.

I fear that this little drive around the block reset ploy will not always work. That makes me anxious.

Maybe God will provide me with another plan.

Carpe Diem.

A Strange Day

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In our current life of ups and downs this day is a truly strange one, at least, not one that I would have expected based on how Cheryl slept last night. She seemed to be awake most of the time. She was a little fidgety when she went to bed at 11 pm.

I sat up for a bit to read and when I came to bed a few minutes later she was, of course, awake although she did not talk to me. She fidgeted and eventually I fell asleep. I cannot explain how I know she was awake most of the night but she was awake every time I chased my bladder to the bathroom overnight.

Usually if she sleeps poorly she is physically unable to move easily the next day. But that is not true today. She is moving much like her 60 year old self which is better that her yesterday self. What happened?

It is a strange day. She got herself up with no help from me. This is very unusual of late.

Maybe it is my imagination. I did not sleep well and I think I am grumpy for it. The sun is shining brightly in Ohio. Humbug.

The image is an old Calvin and Hobbs comic if you viewed this on a computer. Why is life not fair in our favor? There is no answer to that question.

Naturally the other Cheryl has posted about sleep on her blog.

And Carpe Diem.

Update: She has been hallucinating people on and off today as well as telling me about strange happenings in our condo parking lot (construction) and how busy the restroom at Perkin’s was with some guy changing his baby. (I hope she sleeps better tonight.)

It’s Just Laundry

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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.

And Carpe the laundry diem.