Who Cares for Care-Givers? : Alzheimer’s: Its slowly unwinding agonies take their toll on loved ones, too.

There are times when I wish my mother would die. She is 88, and she has Alzheimer’s disease. What little memory and cognition she has only makes her aware of her deterioration and utter dependence.

Though she is in a nursing home, I cannot totally escape her insecurities, dysfunctions, fears and losses. She will say, “I don’t want to be a burden.” She really means it. But there are times when I do think of her as an inconvenience, an annoyance, and I try to put her out of my mind, in self-defense. Then comes the self-loathing, which is more of a burden than she could ever be.

As increasing attention is given to finding a cure, an arrester, a preventative for Alzheimer’s, a new focus is emerging: how to prevent this brain-degenerating disease from taking a greater toll in the way it affects the family members and good friends who care for Alzheimer’s patients. Socially, emotionally and economically, they, too, are victims.

Their symptoms: exhaustion, despair, distraction. Their time is occupied with caring for the patient, coping with the financial and physical complications, struggling to make more time for their own families, friends, work and pleasure. They are wracked with feelings of helplessness, inadequacy, guilt, frustration, exasperation, anger, resentment, pity, self-pity and, occasionally, cursing one’s lot.

Care-Giver Syndrome, I call it. The only prognosis is that it will last the course of the patient’s disease. The best treatment, not surprisingly, is meeting with and listening to other care-givers, sharing one’s experiences and feelings with them.

Yes, misery does love company. After attending a support group gathering, I come away feeling less aggrieved and not as alone. I’ve heard about situations far worse than mine. I’ve learned how others have prepared for and managed the stages of deterioration. I’ve heard someone else’s son talk candidly of his mother’s confusion, disorientation, derangement, melancholy, depression, anger and incontinence.

My mother has been on “intake and output” for almost a year now. Her cc’s are counted and her eliminations are charted. I’ve asked myself, is living defined by the number of cc’s she can be coaxed into swallowing on a given eight-hour shift? Is such a “life” worth continuing?

My mother would take her life if she could. She has said this to me in moments of lucid rage and lucid despair. In some anguished moments, my thoughts have strayed to how I could abet her--even to how I could justify taking it upon myself to end her existence.

My mother has no sense of time or place. Her references, when they are not wholly imaginary, are to people and places she knew 70 and 80 years ago. If I’m very patient, and visit often enough, and am lucky, I may be able to piece together enough fragments and discover something about her. It may be a bit of family history or it may be apocrypha. But even if a tidbit is suspect (so far gone is her memory) it can reveal something about who she was before she became a wife and mother. And then there is the joy she exudes when she can catch a glimpse of her 2 1/2-year-old grandson through glaucoma-ravaged eyes. The longer she hangs on, the more windows of opportunity may present themselves, the more chances we may have of being taken by her sweetness. We hang in.

To hang in, we need support. Care-givers, especially those caring for someone at home, need a break every once in a while, some slack. They’re apt to be tired and befuddled; they’re probably not as attentive to their work and other responsibilities, or as considerate of friends and family, as before. Maybe some kind of indulgence and forgiveness is their due. Certainly, understanding. I’ve been most fortunate in this regard. I am shamed by comparisons.

My heart goes out to the young couple about to be married who have dramatically scaled back their wedding plans to build an extra room so that his mother can be cared for in their home. I feel for the 60-year-old widow who had just gotten her children and grandchildren settled and now, again, must put her own life on hold so she can take care of her father. I marvel at the dedication and devotion of the husbands and wives who manage to care for their spouses in the homes they had cared for together in better times.

Those in-home care-givers, who do and endure so much by themselves, don’t need praise or even sympathy. What they could use every once in a while is a neighbor’s hand, a friend’s shoulder, the understanding of colleagues and employers.

When our patience and affection are stretched to the limit, when our thoughts roam guiltily through all we haven’t done, can’t do, shouldn’t even think about--that’s where care-givers find their strength: in the reminder that someone cares about them, too.