The grief of losing one slowly to Alzheimer's is not a linear grief. It circles and cycles back on itself and just when you think you have a handle on it, it comes around to bite you again. With all the tears over Bob and his fate, all the writing and processing, I'm still surprised when the pain gets me again, even after these thirteen years.
I went to see Bob this afternoon and stayed while a friend, Alan, helped solve a problem. The DVD player and cable box sit next to the TV and Bob frequently tries to carry them off. They're, of course, attached by cables to the TV making this a dangerous proposition.
Alan and Ketut made a box to house the tempting objects below the table with a slot drilled out of the table facing so DVDs can be inserted and ejected. Out of sight out of mind usually works well with Alzheimer's people.
The project took about two hours on a very hot afternoon and I visited with the shirtless Bob to distract him from the work. He had a hard time with the noise of the saw, yelling, "That's enough!" through the wall to the workers.
I'd brought some chocolate pie as a treat. Bob ate all of his and then started at mine so I cut bits off for him. He got up and disappeared behind the kitchen into the pantry and I assumed he was getting water from the big dispenser but when I peered around the corner to check, I found him peeing on the wall.
Ketut, his on-duty caregiver, was tied up with the reconstruction of the TV table so couldn't direct Bob to the toilet. Ketut told me that it's a sure sign that Bob has to pee when he puts his hands in his pant's pockets hikes them up and down. I'd missed the cue. I saw once again how tense I become when I’m with him trying to keep him peaceful and entertained and how responsible I feel for his well being.
I thought about the 35 million people on earth diagnosed with dementia and that every 12 seconds another is diagnosed and how many more there are undiagnosed and how they eventually become warehoused. Alzheimer's has been described as a human tsunami about to overtake us. (http://www.alzheimersreadingroom.com/2013/04/the-coming-alzheimers-tsunami.html)
I know I am doing the best for Bob and that he is relatively happy and has excellent living circumstances but I can't help wonder how it is to just exist, to be passively cared for until death takes us.
I woke in the middle of the night unable to sleep - visions of the time spent with Bob replaying. I don't mull over doing the right thing for him or feel guilty but there is a pain in my heart to see him like this, still, and that pain keeps me awake.
Fortunately humor is the balm to the grief and within days of the project we found 'out of sight, out of mind' was not working so well. Bob, in his unique Bob style, now stuffs his underwear into the new slot!
|Bob and Daisy During TV Table Construction|