Cases: Caring for an Ill Spouse, and for Other Caregivers

We are the spouses or partners of people with dementia, an umbrella term for several degenerative, fatal brain diseases, of which Alzheimer’s is by far the most common. We are their primary caregivers; their lives depend on us.

Living with someone with dementia, who must be watched every minute, eventually becomes the central focus of a caregiver’s life, as independence and freedom are replaced by stress and exhaustion. The members of our group, mostly in their 80s, are worn out by caring for their mates. Yet so lively are our Monday meetings that it sometimes takes two volunteer social workers to keep order: “Wait! Wait! One person at a time!”

Often down or drained when we assemble, we part after 90 minutes buoyed and energized, week after week, year after year. (For me, four years and counting.) Not even a spouse’s death keeps members away; a year after the funeral, our widows and widowers must be prodded to make way for those waiting to join.

According to the Alzheimer’s Association, there are 15 million family members and friends providing unpaid care to people with dementia; hundreds of thousands of them meet regularly in support groups like ours to exchange information and understanding available nowhere else. Because science understands so little about dementia, we are the experts.

(To find a caregiver support group, contact the Alzheimer’s Association, your local hospital or the Well Spouse Association, a nationwide group for people caring for spouses or partners.)

Our collective experience is a priceless resource. At a basic level, we exchange advice for keeping our partners from wandering off and techniques for bathing, calming and medicating them. We discuss ways to handle their hallucinations and incontinence, the mere mention of which often spooks outsiders. We share advice on what to tell the police, and what not to tell them, to keep them from hauling our sometimes violent mates to a psychiatric ward.

But our group’s deepest value lies beyond such practical matters. We speak of feelings and problems too sensitive or fraught to discuss outside. We recount the disappearance of old friends, whose discomfort around our spouses keeps them away. We mourn the loss of companionship and sex.

We guiltily admit to bouts of irrepressible anger in face of the intransigence and aggression typical of dementia. We speak about our children and stepchildren — some attentive and devoted, some interfering or remote.

And knowing that dementia is a terminal disease, together we contemplate death — our spouses’ and our own. When should we refuse treatments or call in hospice? What will become of our loved ones if we die first? How will we manage our own final years as we rapidly exhaust our resources? These are deeply personal, in some ways political questions that science cannot answer.

One retired schoolteacher among us recalls that she was once too proud, shy and overwhelmed to consider joining a support group. (Me too.) But after tentatively trying out our group in desperation, she stayed for a decade.

Her first reward was the group’s urging that she find outside help to provide some relief. Then, over the years, the group was her sounding board when her husband became violent, emerged from a hospitalization unable to walk, lost his powers of speech, could no longer feed himself. As he approached the end, she asked the group to ponder with her whether to have a feeding tube inserted into his stomach.

After he died, she joined a bereavement group, then flew to Paris for a week. But when she returned, it was to our group — people who understood her and to whom she still had valuable knowledge to convey.

Since I joined it, our group has had an 80 percent turnover, mainly through death. Though our members have ranged from liberal to conservative and from financially secure to dependent on Medicaid, the distinctions that matter most are how long ago we received the dread diagnosis and what problems we are dealing with now.

With doctors unable to help us and Medicare reimbursement largely off limits, we turn to each other to learn what lies ahead as each of us descends the steps toward widowhood. Such grim knowledge occasionally causes a newcomer to bolt. But for those who remain, our support group is our lifeline.

When the last Congress unanimously endorsed a comprehensive plan to combat Alzheimer’s disease, the lawmakers named improved caregiving as a major goal. If they are serious, they will vigorously promote support groups like ours and take advantage of our collective, hard-won experience.

Alix Kates Shulman’s most recent book is “To Love What Is: A Marriage Transformed,” a memoir about her husband’s dementia.