Dementia Caregiving: Good and Bad Days During Hospice Care
My husband Bob, who has dementia, has been in at-home hospice care for a while now. I’d been his caretaker for about two years when he got so sick that he fell five times in as many days. One fall required a call to 911, because I did not have the strength to get him up. I learned that the weakness stemmed from Bob’s bout with pneumonia. Pneumonia! Who knew? The doctors didn’t mention that.
Life after choosing hospice care: Good days, bad days, and those in between
After weighing our options, I decided that in-home hospice care was the right choice for both of us. Much to my surprise, my husband started to recover after a few weeks.
On Bob’s good days, his eyes are brighter, his voice is steadier and his legs are stronger. On his bad days, his eyes are dull, his voice is soft, and his legs wobble. What I am noticing now is that there is a bigger difference between his good days and bad days. These differences seem to be getting larger by the week.
Good days in hospice care: Better listening skills and memory recall
On good days, Bob’s confusion is less severe. I tried very hard to think of a way to explain the difference between less severe confusion and more severe confusion and came up with a few examples. When he is less confused, I can get him to eat his dinner without a lot of encouragement. It’s also easier for him to listen to me and actually pay attention to me. That’s important, because it’s my job to keep him safe.
On his good days, Bob knows that we live in an apartment. He’ll walk to the car without a wheelchair. He may still know who I am.
My brother came to visit at the beginning of June. Bob’s eyes sparkled and he was a little happier. He listened a lot as Dave and I talked and reminisced. Bob trotted out his very best manners. In a word, my husband was the best that he could be in that moment. He kept that up for a remarkable five days.
Sometimes Bob has ‘middle ground’ days
There are also days that I consider to be the middle ground for Bob. These are not bad days but, they aren’t his best. He will be relatively present most of the day.
He is a little perkier when the hospice aid or the nurse comes. He keeps track of the cat, Kramer, and wants to pet him. These are the days when he goes to bed at nine o’clock and actually sleeps with his head on the pillow.
Bad days in hospice care: Confusion and stubborn refusal
Bob’s bad days are not fun for either of us. The latest bad day really started the night before. Bob wanted to go to bed early, about seven. He wanted to sleep with his head at the bottom of the bed. He did not want his insulin injection.
In the morning Bob’s face looked a little different, though it did not have the characteristics that I associate with having a stroke. He walked to the car without a problem and stayed there as I ran errands.
We drove home in silence and I parked the car. When I tried to get him out of the car, Bob was confused. He picked up two plastic spoons lying on the front seat and tried to connect them somehow. He kept fiddling with them, then announced that he would not move until he had the spoons connected. He tried for almost 15 minutes. All of that time, I was trying to coax him out of the car. No luck.
When I told Bob that we needed to take the elevator to the apartment, none of what I said made sense to him. He couldn’t figure out why he had to get out of the car to get on an elevator. I would get him out of the car briefly and he would get back in.
Bad days are often anticlimactic
Finally, I got my husband out of the car, into the elevator, and up to our apartment. He was very quiet and very inanimate all afternoon. He also barely said a word. He napped for over an hour, which is getting to be more normal. He went to bed at seven; amazingly, he slept through the night.
I never know what to expect the morning following a bad day. To be prepared, I put an air mattress on the floor next to Bob’s bed and slept there, just in case.
Pamela Spahr, the founder of Inspired Caregivers and the author of the eBook, “Caregivers Survival Toolkit,” is an expert in behavioral and emotional techniques designed specifically for caregivers to those with cognitive impairment. She coaches caregivers and teaches her techniques to family and professional caregivers around the United States.