We have not been here before. The husband’s experience with Lewy Body Dementia has been atypical – no hallucinations, personality change, severe memory lapses, or all the other nightmarish things I read about in online support groups. But this stroke and subsequent hospitalizations have taken him down.

It was reasonable to think that he might recover some or all of his pre-stroke abilities, like other stroke victims do. And he did. He got back to breathing unassisted, verbal communication and basic movement and strength in his arms and legs. He was motivated to work hard and was able to express that. He talked to friends on the phone, gave feedback, joked with caregivers, noticed his surroundings.

Even a week ago, he responded to the move to Maple Ridge pretty well. Then came the day I wrote about last, when his lethargy increased and he went nearly comatose. This was the first time a urinary tract infection had affected him like this, something I have read about countless times in the support groups. The day after his two trips to the ER, being started on antibiotics and given a new feeding tube, he was understandably tired, but seemed to rally a bit. He was cooperating with the therapists. We played catch with the beach ball.

Yesterday and today he is once again silent and not communicating. I have to work to stimulate him enough for his eyes to slowly open and stare at me. A wet washcloth, touching his face, turning up the hearing aids, sitting him up in the bed, deliberate and focused speech – all this gets very little response. He is stiff, rigid and difficult to position in bed. There is the perpetual lean to the left that he’s not able to correct as well as he did a week ago.

What happened? Am I seeing the dreaded progression of the dementia? Are we on the Lewy roller coaster? Or is the inconsistency of his care at the facility having something to do with his condition? Will he go in and out of this behavior or is it permanent? So many questions, so few answers.

I’m talking and thinking the language of this answer-less world all day. I recount the day’s happenings to friends, my mom, my daughters, my brother, my pastor, even the nursing home employees who will listen. I’m telling God what it’s like to sit and look at this shell of the man he gave me. I’m constantly going back in my thoughts to this situation we are in.

If he has declined because of the inconsistency of his care, then I need to bring him home. I can be consistent if nothing else. If he has declined because of the progression of his diagnosis, then I need to bring him home, because these may be his last days. Either way, the comfort of being home and of having someone respond to his needs will be the best thing for him. He deserves more than what he is getting now. I think I am ready to bring him home.