There’s a lot of weird behaviors that seem to appear with Parkinson disease dementia. Many are harmless. Some can be harmful. All are frustrating. Some are just plan odd.
She is attaching her panty liners with bandaids.
I suppose this falls into the harmless weird category for behaviors.
Carpe Diem.
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.
Carpe Diem.
Today sitting in Anna’s house chatting, Anna told her mom that today was June the fifth. Did Mom know whose birthday was today. I thought, shit, I forgot to write that detail on the white eraser page that I put on the kitchen table in the morning. And I had lost that fact also. I have been so focused on Cheryl and getting some activity for her each day I lost track of my own son’s birthday.
Cheryl always wants to make a list so she does not forget something. How does one even begin to write a list of things or events not to be forgotten when one cannot remember what is to be on the list?
That is a tricky question. It is hard to remember what you have forgotten or maybe did not know at all.
Another subject for a list is the places and people we need to visit . Maybe we have not seen them in person for awhile. there are many people that we have not seen in person for at least two years. I did travel to see my sister about a year ago. We attended my nephew’s wedding in California. It was hot. It was fun. My brother-in-law, my nephew’s father, had brought along his fiance to the celebration and for some arbitrary reason she blew up and their wedding is not happening. Cheryl is working on a list for visiting folks. My nephew and his new wife are expecting a baby very soon.
Should she ever get her list together I will make every effort to figure it out. Planning trips is hard. Cheryl needs a lot of extra equipment these days. The new U-Step walker, although it folds, is better transported by a pick up truck. She is much more steady behind it.
Carpe Diem.
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.
Carpe Diem.
Cheryl – Paul?
Me – Yes?
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.
Carpe Diem.
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.
Carpe Diem.
It is a tough decision to make. It seems to me that I might not be able to provide the care that Cheryl needs overnight. It breaks my heart to admit it.
Carpe Diem.
Care giving to your spouse opens a whole new line of thought about being of service to others. Throughout my life I have sought jobs that both interested me and allowed me to be of service to my employer and their customers. Sometimes to financial detriment of the guy paying my salary. Good customer service extends to all other areas of life.
These days much of my time is spent in caring for Cheryl. She has taught me new methods of coping with the current situation. This is especially true as the dementia aspect of her Parkinson’s disease seems to take over from a mere (if there is such a thing) movement disorder to a degeneration of her cognitive ability. Simple sleep seems to help.
These days sleep does not always help. Her mind is constantly confused. In any single conversation she can be old and young, a student ready to go to school, our children might live here with their children and I might be someone else.
I love her and grieve the loss of her.
Carpe Diem.
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.)
Carpe Diem.
FIND RESPITE – If you’re focusing most – if not all – of your time, energy, and resources on caring for a loved one with dementia, you may find you cannot sustain doing so over the long-term. With proper self-care, you can relax and recharge, manage caregiver stress, and become a better and more effective caregiver. Consider sitting on the porch and reading a book, a brisk walk, a cup of Starbucks, an ice cream cone, a massage, a warm bath with soothing scents. These things need to be done regularly in order to maintain your own health.
I read these words again this morning. Only I can find respite for myself. That is often hard for the care person to see clearly. I went outside to straighten the small garden area we have. The steady rain over the past few days which has darkened Cheryl’s mood also has loosened to soil around a Jacob’s hook holding a hanging plant Cheryl got for mother’s day.
Five minutes but peaceful and rewarding.
Carpe Diem.
Adjunct_Wizard 