The need to do something, anything even if it is a mindless thing is referred to as punding. Parkinson seems to generate this need in many of its participants. It is generally harmless until it gets in the way of other things. Here is more from the Davis Phinney Foundation website.
Cheryl does this at different times. It used to drive me crazy and sometimes it still does if she starts up immediately before we are going somewhere. She often does it in the car with the purse of many pockets.
Yesterday we picked up one sister of Cheryl’s and went to visit another sister of Cheryl who lives about forty miles down the road. It was a very pleasant visit sitting on their great front porch perched up a hillside with a nice view of the Ohio river to the north. We had a great conversation while some extra kids and grandkids showed up to drive go-karts and minny bikes over the hills and around the property. Sometimes it seemed like having a conversation on the berm of a nearby highway. Nevertheless it was a good day and this morning Cheryl is sleeping in for a bit.
Which leaves me with my morning coffee and watching the morning news shows. It also leads me to think about what is news to me. The morning news shows, as they always seem, are interspersed with the latest political dilemma, complicated financial maneuvering that makes money less valuable but no less important, some actor/celebrity fall-out from marriage or their manager, the best guacamole recipe or another use for hot dogs, the expected weather for the next week (it is remarkable how this is always bad news), the latest book usually a tell-all memoir – today about growing up as a child of abusive news reporters in California, and other useless, to me, drivel. I suppose a breakthrough therapy for Parkinson would be of much more interest. Sometimes news is merely superfluous information and blather.
I turned it off because I noticed I was using it as background noise for working today’s Wordle and a couple other puzzles I have become fond of working.
I like crosswords. I suppose that is my father in me. He liked crosswords also. It probably sounds odd that I care little for Scrabble since it looks much like a crossword when completed. I think that has mostly to do with competition which I also care little for. I am not competitive except with myself. Crosswords and stroke-play golf fit into those self competition categories and maybe bowling.
Journaling and writing and blogging is also an interest. Today is also wash-the-sheets day and I am starting later because she is sleeping in.
The big new bed was delivered yesterday. I thought that I had paid for the removal of the old mattress, box springs and the bed frame. Apparently there are tiny variations in the language of such agreements that I did not realize and was not privy to. When did furniture or any purchase like that become so complicated. Even though I asked the salesman – Can you guys remove the old bed? – what he checked off and I did not question was – “Removal mattress and box springs – $99.00.” I forgot to ask about something that I knew nothing about. I should have asked, “And the old bed frame, headboard and footboard too?” He would have responded with, “That’s an extra $50” to which I would have said okay. Once I am making the switch lets go for it. It served us well for fifty or so years. It is merely a bed. It has no particular sentimental value. I remember when we bought the whole bedroom set thinking to myself, that is a lot of money ($1600 in 1979). Beyond any of those thoughts it has served us well. It is time for it to go. It does not fit our Parkinson life.
The mattress and box springs left yesterday. The headboard, footboard and frame assembly went into the garage. There is a lot of useless crap in the garage, like, I suppose, everyone’s garage. On another day I will rid myself of useless crap so there is more space in the garage. I will probably not paint anything in the condo on my own so why am I keeping old paint brushes? I also have an electric hedge trimmer. We live in a condo complex that although it is small we pay to have mowed and landscaped and trimmed. Useless crap it is.
Alas, we were probably the last delivery of the day. The young men were on the way out when I asked lets see how you left it. I asked them to move the bed about a foot closer to the doorway of the bedroom so that it was basically in the same place as the old bed. they did as asked. The delivery included a sheet set and I had purchased a set of mattress covers from Amazon as well as a quilt and shame set and blanket. The install team left me with a queen size mattress protector which I was not expecting but again, had I realized it was coming, I could have checked that the correct thing was delivered. I did not check that fact. The queen size mattress protector still sets on the dining room table awaiting the delivery truck to bring to correct item (which is probably not on anyone’s delivery list for today.) I am waiting to see how this all works out.
I am not perfect either! I ordered the correct size blanket from Amazon but I incorrectly ordered a queen size quilt. Woe is me. Amazon now uses Wholefoods Market for returns. There is one about two miles from me. It was a painless activity. Perhaps I will return to shop there. It is an alternative to Kroger which was there when the building was first put up and then got mired in some developer default controversy about ten years ago. Kroger moved out. The building was eventually completed. I do not know if the crane operator was ever paid. The crane stood idle along the highway for about a year while everyone traded paper and shouted at each other in court. Now it is where I return my oopsios to Amazon and there is a store that sells stuff to store stuff in. America has a lot of stuff. (Sorry I digressed.)
The first night was wonderful. Cheryl did awaken me to help her in the middle of the night but that was after she had gotten up to go to the toilet. I did not feel her get up.
After I got her up at 7 am for her first meds, she fell asleep deeply until I awakened her at 8:45 am. Bliss.
It occurred to me this morning as I was reaching for the Cheerios that lots of tiny things have changed in our life together. Not all of them are Parkinson changes. All can seem associated with Parkinson. I will stop using the possessive and leave Parkinson by itself.
Starting with Cheerios, Cheryl rarely ate Cheerios until recently. The why of that thought is unknown. It may or may not be a parkinson. Before Cheerios she was a huge fan of Life cereal. So much so that I was buying Life cereal in the four box collection from Boxed Up online. For several months perhaps a year and a half it was Life cereal, some dried cherries on top and orange juice. Then it suddenly switched to Frosted Mini-Wheat cereal but only for a couple weeks. Sticking with the heart healthy ideas I bought some Cheerios for myself on day as I passed through IGA shopping for the other things on my list. They were quickly adopted by Cheryl as a breakfast option. Cheerios is the current choice virtually every morning now.
A Partial List of Changes:
dementia and support
Me and tea
showering and hygiene
keeping track of meds
Daily chore responsibility
handholds around the house
Emotional response to songs
Falling and fainting
and on and on…
As these changes occurred in our life together I did not take notice of them, I merely rolled with it at the time. I admit to being initially annoyed and sad to see something change away from what it was. Old people like to keep things as they are. The past tense is disappointing but the Beatles broke up in 1970. People move on.
Parkinson symptoms are treated with powerful mind altering chemicals. It is the doctor’s call as to what will help. It is the care partner’s call to observe and listen and respect and help with those drugs. The doctor is global and strategic. Day to day caring is tactical, down-to-earth and immediate.
Cheryl fell in the shower this morning. Slid down the wall is probably a better description. I heard no thumps. It is always our discussion – I’m going to take a shower. Okay, I will listen for thumps. Thanks. And then she goes to the big bathroom to get cleaned up. Today I thought I heard her futzing with her walker but she was occasionally bumping the shower door as she tried to reach the hold bars to pull herself back up.
I ordered a shower mat from Amazon. I told her from now on we put the bench in there with it. A few weeks ago I had the plumber put in the really fine hand held shower head in preparation for this day. Several times I have suggested that she use the bench. Resistance to infirmity is great. No bench she insisted up until now. I will insist but I want her to maintain as much independence as she is able.
The shower floor does not seem slippery to me but I could be wrong.
One foot in front of the other. One step at a time.
The past few days have been sleepless and disturbing. Cheryl has one of her meds that she has been taking for a long time seems to be bothering her at night and not allowing her to sleep. As we sleep in the same bed on the same mattress I do not get much rest either.
Two nights ago I gave into the thought that it was her Sinemet CR tabs that were both helpful overnight and disturbing her sleep. I discussed it with her and she wanted to try taking only one tab for overnight. She slept until about one o’clock and got up to go to the toilet. She came back to bed and slept until the seven o’clock alarm for morning meds.
Wow! Could it be that easy?
Last night we did the same thing. She did not get up at all. I had a little extra laundry to do in the morning but I did it with a full night of rest.
Now it is the weekend which should be a time to relax and rest but we have little to do on the weekend calendar. I lean on my kids. Cheryl has been talking about the kids all week. If I can I take her to visit.
My first thought is my son David. He has a wonderful backyard to sit and visit. My plan was to visit on Sunday but as we drove to our favorite place for a walk Cheryl said she would like to visit David. I had told her as we were driving along about visiting David tomorrow afternoon. Somehow that translated into today in the afternoon. I called David and he said sure.
We took our walk and sat on David’s back patio the rest of the afternoon.
Maybe tomorrow afternoon we can find Max’s ballgame and visit Anna’s family.
Cheryl – When you see my husband Paul if that’s tonight or tomorrow…
Me – I will see him tonight.
Cheryl – Tell him, I love him.
This was one of those conversations in which I am not me. They used to disturb me. Now I just go along.
This was our conversation as I helped her into bed. It was a little early. She complained of being very tired and went to lay down at 8:30 pm. I took her the bedtime dose at 9 pm. She was not asleep yet. I had previously promised her that if she was asleep already I would not wake her up. We would just figure it out later.
Cheryl’s Parkinson’s disease interlaced with dementia has taken a turn to the negative over the past three months. It is tough but necessary for us to explore extra help and other options to our living situation.
I feel a sense of sadness. It is not exactly that I have failed because I recognize in my heart that her disease has a progression. I suppose it is a progression that I had not anticipated.
I also feel a sense of relief, an acceptance of the fact that I cannot do it all alone anymore. I recognize that we have to do something different. That first recognition came when I decided to buy a new bed and change our sleeping arrangements. At least, I thought a split king would keep us from awakening each other at night.
We drifted off to bed about 10 PM after watching a couple of her favorite shows on television and visiting with her sister for a couple hours. We probably eventually fell asleep about 10:30. Overnight I got up to go to the toilet twice and the second time around 3 AM she got up with me and seemed as though she wanted to stay up. I had prepared to sleep on the sofa bed we had and then she came out looking for me. We had our often discussion about church and I suggested we lay down for two more hours and then get up. She got up at quarter til noon.
I got up around 8:30. It was bliss.
I took the time to call the assisted living facility nearby that had housed both of our mothers at the end of their life. I still refuse to believe that we are here yet BUT it does not hurt to find out about various options to move forward from here.
I also set up a couple doctor appointments. She is having problems hearing occasionally. And I wonder about a UTI.
Oftentimes my immediate reaction to unsolicited advice is to ignore it because I assume that the advisor has their heart in the right place. Pushy people can insist that I’m doing it wrong but it is possible to listen past this and hunt for the useful nuggets of information.
Today Jane apologized for jumping up to find Cheryl a different cup to put her soft drink into at the pizza store last Tuesday. It was both unsolicited and surprising. I ignored it and when she came back with a coffee mug I poured part of Cheryl’s drink into it. It was a good solution and Jane’s apology and later her admonishment when I said that it was unnecessary reminded me that I am not the only solver of problems. Jane’s background is special education with kids that have special needs and although Cheryl is not on of those, some of the same rules apply.
For quite some time now I have been merely moving Cheryl’s giant plastic glass of soft drink away from any gyrations that occur with her hands as she engages in conversation. It never occurred to me to merely request a smaller additional glass to put her coke in. Something that was easier to deal with. AHA (dammit I missed that one.)
It occurs to me this morning after another overnight of strange behavior that discussing her actions overnight has no useful purpose. So, I have not this morning. I will wait and see if I need to discuss it with someone else.
Part of Carpe Diem is to stay in the present. The past is the past and while it gives me a hint as to what is coming, it is a very dim view with poor illumination.