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.
The Parable of the Lost Coin; Luke: 15.8 – Or what woman having ten coins (when I was younger, this was talent) and losing one would not light a lamp and sweep the house, searching carefully until she finds it? And when she does find it, she calls together her friends and neighbors and says to them, ‘Rejoice with me because I have found the coin that I lost.’
This story came to me as do lots of stories from the bible and elsewhere after a cataclysmic episode in our life with Parkinson’s damnable disease.
This morning was a confused and befuddled one. This is not unusual in any way with this annoyingly debilitating disease. As a caregiver I just pay attention to be assured that nothing catastrophic happens and when it happens one just cleans up as best as you are able. This morning after she had a light breakfast of cereal, two muffins, orange juice, apple pie and tea she went into her office to check things. I heard her talking into her closet as I passed by with a load of laundry.
After loading the washer I asked who she was talking to. Often she would answer these two women or these two girls, this morning she responded with ‘myself’.
She told me that she could not find the stack of yet to be mailed birthday cards that we had put together the week before and propped next to her computer. She was frantic to find them. (Like the woman in Luke’s story.) I told her the cards where there somewhere probably just under something and not immediately visible. As I went out to gather the rest of the laundry I looked in all the usual places for the stack of cards. After I made my circuit and put the rest of the laundry near the washer I checked on her again.
She had found the cards. They were turned face down on her desk and underneath some collection of printed emails that where clipped together. She explained that and then spontaneously burst into tears.
The saddest, most maddening thing to a parkie with the beginnings of Parkinson’s disease dementia is the knowledge that her cognition is deteriorating. Sometimes she is acutely aware of missing pieces of her memory. Sometimes she is unaware. When awareness comes occasionally we hug and deteriorate into tears for a bit. We contemplate the next steps of our journey. We take time to feel a bit sad to realize the journey is becoming harder to do. The steps are harder to take.
It is hard to remain upbeat. It is okay to cry occasionally and let the emotion out.
I admire those who are able to remain upbeat. Parkinson’s disease sucks!