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.
It seems to me that I spend a lot of time waiting for the next thing. I started this about a week ago. I did not know where to go after the first line. But late last night after I finally convinced Cheryl to lay down I realized that sometimes I am waiting for life to smooth out for a bit.
Care partners often do not realize how important it is to have relief.
I wait to find out if Cheryl is going to organize her office.
I wait to find out about if we are home or if we need to fix that by driving home.
I wait to find out if getting to bed is next or if this is a late night.
Things are more mysterious at night and I am tired and on guard against argumentative discussion.
Last night we drove around to get home again. Because I was bored I picked a different circuit. That was a mistake on my part. I realized my error after I turned and she said, “This is not the way.” Oopsy. Now she is concentrating on landmarks which caused me to start a running commentary about streets and where were. Luckily she came with me and said we have to turn left at the light.
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.
We had an open and frank discussion about me, my death, if it was okay to date, how I died or was no longer here, Capgras Syndrome, how it was that her mom died, and other topics. I explained “impostor syndrome” and that I was not dead. it took a lot for me to not openly cry as I began to understand her terror at not knowing what was going on around her.
We talked about our love for one another. I told her I would never leave her alone or as best I could not let her miss anything important. We talked about memory and how scary it is to not know what is next.
She was anxious about being home but not thinking she was home. In the midst of that our upstairs neighbor, Joe, bought me a couple cans of beer. A couple days ago we were discussing an article in a local magazine about the best microbreweries in the area. He had found some of the stuff that won.
Cheryl added Joe into the discussion about how she and he were working on the same project at the house. We went around and talked about going home and Joe had brought her home last night. I said that when she woke up she was home? Even though when she went to bed last night she was not home? Yes she said.
I explained to her once again that we were home even though she was unsure that we were home. (Another nuance of Parkinson dementia). Capgras can occur with things and places also. In Cheryl’s case it happens with time.
She knew she was home now.
She seemed calmer afterward. It wore her out and she went to bed early and was okay with me helping her to bed.
Carpe Capgras Diem. (but what a miserable fucking disease.) (sorry)
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.
You do not know when you will learn something important. This seems especially true when care partnering with a dementia patient. Once in awhile I get a glimpse of how much Cheryl is struggling with her surroundings and may or may not understand what is happening around her.
Her friend Cathy came to visit her yesterday. They sat and talked about various topics. I left for a bit to do some grocery shopping and pick up a book from the library. When I returned we all chatted for a little bit as I finished cooking some goetta and packaging it for consumption later.
Cheryl experiences something called Capras syndrome. I only learned the name for what she seemed to be doing a few days ago. Knowing the name for something is not reassuring. My engineer head wants to know how to fix it.
A person with Capgras syndrome irrationally believes that someone they know has been replaced by an imposter. In some cases, they may also believe pets or even inanimate objects are imposters.
Usually this occurs late in the evening and she does not know who I am. Sometimes though she does not know where she is and has a strong sense of being in the wrong place. Yesterday when Cathy left she was unsure of the ending and as the afternoon went on she expressed the thought that she did not like staying in someone else’s house when they were not there. She thought we were at Cathy’s house. I did not catch on to her confusion until much later in the evening.
Finishing– Just as you prepared to start a visit and conversation, so you must think about how you will bring it to a close. If you are leaving the person’s home, make sure you say goodbye. You should not leave the person thinking you are still in their home, perhaps in another room. This may cause confusion or anxiety.
Ensure you have their attention, smile, and let them know you enjoyed your time together and the conversation. Shaking their hand or touching them is a common gesture which gives them a strong clue you are leaving. Leave them reassured and let them know you look forward to talking again. If you are likely to be speaking to them very soon, for example later that day, say when you will return and leave a note close by indicating when the next visit will be.
I do not do this as well as I probably should this many times a day. Sometimes she will come to look for me.
(For visits and visitors) When you are leaving the our home, make sure you say goodbye. Cheryl may think that you are still here, perhaps in another room. This may cause confusion or anxiety later. Ensure you have her attention, smile, and let her know you enjoyed your time together and the conversation. Shaking her hand or hugging her is a common gesture which gives her a strong clue you are leaving. Leave her reassured and let her know you look forward to talking again. She may want to accompany you to the outside door in our lobby area and check for mail.
Touch someone. How simple of a gesture. How much she is reassured.
Well Thanksgiving is tomorrow, Christmas is a couple days afterward and then Easter is the following week. Cheryl thinks that anyway, so, we are all decorated for Christmas (Soon to be Easter) Season.
Yesterday I made banana nut bread out of some soon to be brown bananas purchased specifically for that purpose. Here is the result.
Later today we will make the sugar cookie recipe that Cheryl remembers as a child and later on she made when our kiddos were small. As you can see the Mirro cookie press booklet has been though many cookie wars. (The cookie press itself has been replaced many times.) I am in the process of transcribing these recipes for posterity but I suppose if I look hard enough I could find them elsewhere on the internet of all knowledge. I am not very busy. One more thing is okay.
The cookie dough has been hanging out in the fridge overnight so it should be perfect today.
(This picture of a fossil track called a mortichnia heads an article in Omni Magazine.)
But impressions are better. They are more general. I was thinking about this early this morning while writing in my little log where I make notes about Cheryl’s day to day.
I note sleep patterns. I write when she goes toward and eventually gets into bed. I know this intimate detail because I have been helping her get her pajamas on and positioned in bed. Most nights she stays. Sometimes she has gotten back up and we will sit for a bit while I get finished with whatever I am doing before going to bed. Many times that is writing this little blog or my “Hitchhiker’s Guide” to care giving. (I am collecting stories and thoughts in a book.)
We have been speaking untruthfully to therapists when they ask, Do you need help with getting dressed? I usually respond with sometimes but mostly not. Cheryl mentions her numb feeling fingers which get in the way of snaps and buttons. None of these are on her pajamas but late at night it is confusing to her.
I note conversation in the evening which lately is confusing. I have thought it might be interesting to capture it and transcribe it. It suffices to say that it is very odd and non-linear.
It is better to stay in the moment. It is better to reflect on those moments and write my impressions later.
It is possible that my thought about how to better utilize our space will cause me great heartache. I asked my son and grandson over to do a bit of furniture rearrangement. We do not seem to be as focused on the television as we once were in an earlier part of the journey with Parkinson. Stimulus money from two different administrations left us with new furniture and extra sleeping facilities. The living room remained focused on the television like some early 1980’s sitcom living room. I wanted to change that look. I read mostly but there are a couple shows I like to watch. Cheryl rarely sits for more that 20 minutes to watch anything. She seems to struggle with any story line in any show. So the television is no longer a focal point.
I turned the whole room 90 degrees with the help of my son and grandson. We moved the dining area around a bit also and now the walkways are a little wider to allow for walkers and mobility aids. I have made one slight adjustment. Her recliner is electric and I put it closer to the wall to hide the cord. I have since moved her recliner to the other side of the end table (away from the wall) and hide the wires under my chair and the end table (side table). Her chair is now approximately in the same position as it was previously just turned about 90 degrees. She is comfortable with that position.
She asked me if we need to notify anyone of our new address and she wants to know if she will need a new key. Moving the furniture around makes her think that we have moved to a new condo. I told her that I had the locks keyed like the old ones so no new keys were necessary. I also dutifully instructed the kids and neighbors of our new/not new address.
Dementia is amazing in its scope. In Cheryl’s case location in time and space are intertwined. If I knew the phone number for heaven I could help her call her mom. Sometimes she wants to do that.