The view from the other side: A caregiver’s impotence

I deviate here from our goal to bring out the science of learning and hope this piece can help someone who is facing similar challenges.

My beloved husband, my Prince, died on Saturday, November 25, 2017, after having said goodbye to all our family over Thanksgiving. It was as if he waited and then allowed himself to pass. I wrote this when he was slowly dying, back in September.

I am the caregiver. I am powerless in making a difference to my husband’s condition. I can make changes around the edges but I cannot alter the outcome. He has two dreaded diseases and, as one physician put it, “Both are racing each other toward the finish line.” My husband’s appetite is gone – and has been for months. I try all possible enticements and put protein powder in his morning hot cereal – one of the only meals we can generally count on. But “count on” means no more than 2-3 tablespoons; not exactly the clean plate club that was touted when we were children. I have 20 things in the refrigerator each with one bite removed before his stomach turned and said no more!

What am I to do? Hospice has been suggested and we will go that route after we inform our children and his brother. His brother has taken my husband’s welfare as his job and comes every day to stay with him for many hours as they sit together companionably. More likely, he watches Larry sleep and they occasionally converse. Business is their métier and they always have something of substance to share.

Hospice will come to the home and help watch him slowly die. How long can a person, previously robust and even overweight, live on the occasional bottle of Boost? How long can a person whose major activity is walking back and forth the length of a long hallway from bedroom to den survive? Each day tears another little piece from my heart as I see my Prince slowly vanquished by these diseases. This is a kind of “learned helplessness” – when rats are put in a cage that shocks them at random moments and there is nothing they can do about it. The rats get depressed and slink off into a corner, recognizing they are no longer masters of their fate but that some weird external power is calling the shots. So it is with caregivers like me who watch a person they love slowly die.

My Prince is – and not because he is dying – one of the kindest, sweetest people in the world. With a rapier wit, he still has moments of brilliance that dazzle our friends as he captures the nub of an impossible situation in a wry comment. Given his condition, it startles us all. He is, after all, still in there, only much subdued. He is best around people, when he tries to remain awake and participate in the ebb and flow of the conversation. He tries hard and the effort shows as friends notice his attempts to remain engaged. It is not who he was but at least at these times he comes close.

I try to do what I can. I was a horrid nag for months as his desires declined, trying to inspire him to eat and exercise. The Science Times supports me. Did I not just read about how rats who exercise have a lower incidence of breast cancer than those who don’t? But he and his body have decided that exercise and movement is a thing of the past – for relatively healthy bodies and not for those whose resources are sapped in dealing with disease and starvation to its cells.

Fever. There is not a day that goes by that Tylenol is not administered. They call it “fever of unknown origin” and then settle for the prosaic “tumor fever.” They have surely increased in frequency, and while they no long spike (because we don’t let them!), they persist and add to his debilitation. I should be happy I suppose that I can staunch that some of his ills. And the very best part is, he is not in pain.

I try to take care of myself, as my friends and relatives urge. I really do. But although my body has not broken, my spirit is struggling with the impotence his illness has visited upon me. Watching a person you love fade away is to flail at fate, and to try and make life palatable for one who has no palate for succor, let alone food. While he is not “depressed” in classic ways, who knows how much of his hunger strike is a function of his mind saying, “Enough! Let me go!” Being a caregiver offers little in the way of comfort or reward. Each day becomes like the next and worse, each day represents a slow walk to the …. I can’t bear to say it.

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