Dementia is a collection of mean and ugly diseases.
Robert is dying. He has been admitted to hospice care. One day in July we held hope that he might “graduate from hospice,” a welcome moment when my dysphoria seemed to clear. But it has now returned to bathe me in a sadness that is breathtaking in its scope. I find it quite amazing that people experiencing grief in this way manage to function at all, but we do. I’m grateful for my friends, our children, and our grandson for keeping me steady on this path.
End-stage dementia
Robert is at the end of his dementia journey. As with most people experiencing end-stage dementia, Robert is finding it increasingly difficult to swallow. He has become very frail. He is at extreme risk of falls. His heart rate has increased, his blood pressure has fallen, and he is usually bed-bound.
Robert sleeps most of the day. He eats very little. What food he does attempt to eat is often chewed and then spit out, or left to rest in the pockets of his cheeks. The act of chewing and swallowing is very complicated. We take it for granted, but it requires a carefully orchestrated set of signals and muscle contractions. Dementia patients are unable to coordinate this effort that is essential to human survival. Often dementia patients die from aspiration pneumonia, a lung infection brought on by inhaling food. Other times, their body fails because of lack of nutrition.
Yesterday Robert fainted in the transfer from the shower commode to his bed. He will now receive sponge baths in bed until he passes. Last week he “sprouted” an infection on his hip that was not caused by a pressure sore from the outside, but an infection on the inside, on the muscle bed of his hip. His body is breaking down.
Small blessings
With , patients often retain their people, recognizing their family until close to the end. Robert is just now starting to lose us. He still knows we are connected, but sometimes he mistakes us for his parents or his brother and struggles to find our names. There is no need for us to correct him. We cannot know what goes on in his mind at this stage, but we all want him to be comfortable and to feel our loving embrace, whoever he thinks we are.
Jackson and his lovely girlfriend, Evelyn, were just home for a visit between terms at school in Chicago. During his visit, Jackson and our daughter, Maddie, visited the two cemetery options we had identified for Robert. We all agreed on a plot about 40 minutes from our home. As painful as the exercise was, I’m glad our children were able to do this together. Their lives with their father are bookended by the simple act of finding a final resting place for his body. His transition is made more real, more inevitable in this effort.
Magical thinking and last times
Magical thinking takes hold of us at various stops along this path. “Maybe he’ll start eating more and get stronger.” “Maybe he’ll pass in his sleep one night and not suffer the pain of this final stage.” “Maybe he’ll recognize me one last time.”
What I’ve found especially poignant on this journey are the “last times” that we experience along the way. We often don’t know we’re experiencing the last time we will do something with our loved one until we aren’t able to complete a simple, repetitive act anymore.
I did know when it was the last time I’d prepare his pill box of weekly medications before I moved him to a care home. But I didn’t know when it was the last time I’d take him on a walk outside to pick blackberries and watch him revel in their juice as it spilled over his chin. I didn’t know when he had chewed his last, very much loved chocolate bar, unable to swallow it safely anymore. I didn’t know that yesterday was the last day he’d feel the warm, gentle press of water running over his body. We take so many little things for granted.
And then we are gone.