Once again, our dementia journey takes a little twist, as behoves the trickster with its show times (when relatives, friends, or doctors come) and crying times.
On.Monday he was so sick, so bad, wheelchair bound, completely incoherent and barely awake, on puree food (no one had told me) and choking on it, and just generally about a gazillion times worse than 2 months ago.
I left in tears, overwhelmed, assisted by an kind caregiver, and spent the next two days in wild grief and, to be horridly honest, guilt and release. Trying to deal with having to phone the funeral parlor. Unable to imagine The After.
This disease sometimes goes like that, especially i guess for dementia longhaulers. All pretty much the same for weeks or months, a slight decrease, a long time at each level of disability, and at the end, very sudden decline. Two or three months ago he was still walking and feeding himself a lot of the tine.
As a loving partner, you get used to each stage of loss of ability. And just as you think, (after shock and grieving), Okay we can live with this, just as you get comfortable, another decline, another blow.
I know many families do not even try to accompany their sick person on this journey (gut wrenching for us observing, but probably just normal reality for our ill ones). They say goodbye at the care home door and go home to grieve. Yes, i have often envied them. I do not judge because grief is grief, no matter how it comes down on you.
Anyway after all that grief the last two days, i dreaded going back to see him again on our next scheduled visit, another dinner date. I dragged myself in and pasted a smile on my face above the mask.
And lo and behold, the trickster was back.
My guy was perky, had a lot to say, and apparently, plans, saying clearly: “I want to go to Canada”- his infuriating way for years of talking about our annual trip to his old sod and family in the Madawsaka Valley Ontario.
He clearly thought the space beside the table would be suitable, and asked several times. He used the extra spoon, upside down, to scrape at the table and feed himself, quite enthusiastically. He was clear about what food he wanted (well, all of it!) and said thank you. He did not cough once.
A month ago, I had hoped for a rebound where he would walk.again, but that is just not going to happen after 2 months in the wheelchair and not trying to walk. But today he was trying to reach the usual mysterious things on the floor and used his legs to move the chair.
He called me “dabe” which is close to the babe he always called me. He even ventured what i think was my name. He very clearly counted his fingers up to eight. I remember being thrilled 2 years ago.when he counted to five.
With what relief i greet this new slight reprieve. Now, and each and every time, every stage, I am back to scheming how to help his ravaged brain, how to comfort the soul i love within.
How to.put my exhausted finger in the hole in the dyke one more time.
Trickster, dementia trickster.