How many patients have I known over the years who've found themselves caught in the quicksand that is caring for a chronically ill loved one? Too many to count, so I'll recount just one. Mrs. S is an elderly woman married to a retired university law professor, who has been slowly losing a battle with
dementia. Once a witty, intelligent, and self-deprecating delight of a man, over the years I've been caring for him, he's gradually changed into a cantankerous, vitriolic, shell of his former self, now barely able to remember the day or month, much less the year.
He still knows his wife, though. And me. His ability to care for himself, however, has steadily deteriorated. In addition to now requiring help dressing, bathing, and feeding himself, he needs help remembering to take the multitude of medications he requires for his several other serious medical conditions. Unfortunately, not only doesn't he remember to take them, he often angrily refuses even when his wife remembers for him. He's 6'2" and 185 lbs. His wife is 5'3" and 110 lbs.
Mrs. S is one of the sweetest patients I have. So appreciative. So consistently optimistic. But she's been steadily bending lower and lower under the weight of caring for her husband for years, and recently, when he was admitted to the hospital for a stroke that left him even more dependent on her for care, has seemed about to break. She's accepted some home care services but has consistently and adamantly refused to place him in a nursing home, despite what now amounts to having to provide him near 24-hour a day care. I worry about them both all the time.
I've had extensive discussions with Mrs. S about the joys and burdens of caregiving and have dispensed all the support and advice I know to give. Some she's accepted and some she's not. Given the increasing likelihood that many of us will find ourselves the primary caregiver for a chronically ill loved one at some point in our future—if we haven't already—I wanted to offer my thoughts on what I've come to think of as the Caregiver's Manifesto.
THE ARTICLES
