Peer Perspectives

Support Groups for Alzheimer's Widows and Widowers

By Allan S. Vann, EdD, MS

When my wife was diagnosed with Alzheimer's disease (AD), I joined a caregiver support group exclusively for AD spouses. Everyone in my group, expertly led by an outstanding social worker, was dealing with similar issues. We were all caring for spouses who were slowly dying of AD. We discussed our feelings and shared our concerns, receiving emotional support as well as helpful suggestions from the social worker and other members in our group. Our spouses were at different stages of AD, and the major daily caregiver stressors were different for each of us. But despite these differences, whenever one spouse voiced a fear or concern, heads nodded in silence. When that person had finished, others commented aloud. Everyone in our group easily related to what others in our group were saying. We were all AD spouse caregivers. We all "got it."

My wife passed away in 2016 after her 10-year battle with AD. It would have been helpful for me to be able to join a different type of AD spouse support group at that time—one exclusively for AD widows and widowers. Such a group could have provided me with continued emotional support and helpful suggestions from others who were experiencing a similar grieving process. However, I could not find any support groups specifically for AD spouse widows and widowers at that time.

I conducted a thorough search, but I was unable to find even one support group specifically for AD widows and widowers anywhere in my vicinity (Long Island). The New York State Health Department estimates that more than 400,000 residents of New York have AD, with about 50,000 or more living on Long Island. Yet even with such a large population of people with AD, no support groups existed on Long Island in 2016 to specifically help AD spouse widows and widowers deal with their bereavement.

Fortunately, I have come a long way in moving on with the rest of my life since my wife passed away, but I also know that I still have a way to go. However, a 2018 Google search continued to reveal no bereavement support group anywhere on Long Island that is specifically for AD widows and widowers. And that is a shame.

To their collective credit, during this past decade both the Long Island Alzheimer's Foundation and the Long Island branch of the Alzheimer's Association have increased the number of support groups devoted to AD caregivers, including specific groups exclusively for AD spouse caregivers. Several Long Island hospitals, assisted living facilities, and nursing homes also now provide or host caregiver support groups for AD spouses. This growth in AD spouse support groups is admirable.

But, still, there are no specific support groups to assist AD spouses after their loved ones have passed on and their caregiving days are over ... and this needs to change.

"Generic" support groups for widows and widowers can be very helpful to many widows and widowers. But in the generic widow/widower's support group I joined shortly after my wife died, my experiences of many years as an AD spouse caregiver did not resonate with others in my group. The other widows and widowers could simply not relate to my experiences as a long-term caregiver over a 10-year period.

Widowed AD spouses have survived an experience that is different from most other widowed spouses. Widows and widowers grieving after the sudden and unexpected death of a spouse, or after the death of a spouse who had poor health for several months or even a few years prior to death, have gone through an experience quite different than that of a grieving AD spouse. AD widows and widowers have often been grieving for five or 10 years prior to their loved one's actual death. AD spouses have often watched their loved ones decline and suffer for many years due to this horribly debilitating and degenerative disease for which there is no effective means of treatment or cure.

Caring for loved ones slowly but surely losing their cognitive skills, losing their memories, losing the ability to feed or clothe themselves, losing the ability to clean or toilet themselves, losing the ability to walk or talk—these experiences over many years are intensely emotionally painful. Many AD spouse caregivers have also had to deal with dramatic personality changes in their loved ones that often cause some to act aggressively towards them, only adding to their intense emotional pain.

In a generic support group, members may be able to easily recall and speak about loving memories of the many "good times" shared with their recently deceased spouses. But even such a simple task may be hard for AD spouses, who may have to think back 10 or 15 years to recall pleasant memories of happier times. For many AD spouses, the stress of daily caregiving over so many years may flood their minds with so many images of the bad times that images of those good times may not be so easy to recall.

Even though it has been two years since my wife died, when I close my eyes I see her sitting slumped over in a wheelchair in a nursing home, not as the vibrant woman she once was. I see her as frail, unable to walk, unable to swallow food, unwilling to even want to continue to live. I see a woman who no longer recognized who I was, who had no concept that we were married, and no longer knew my name or that I was her husband. These are horrible memories to have, and the other members of my generic support group for widows and widowers could not relate to this at all.

Our country's population is continuing to age, and the number of people with AD is continuing to grow. Hopefully there will eventually be recognition by organizations working with AD caregivers that there is a need for support groups that specifically meet the needs of AD widows and widowers.

Most support groups are facilitated by social workers. Perhaps greater awareness and recognition by social workers of the need for targeted support groups for AD widows and widowers can help make such groups happen sooner rather than later.

— Allan S. Vann, EdD, MS, is a retired public school principal writing to advocate for increased awareness of Alzheimer's disease and to stimulate greater research funding, improve diagnosis and treatment for people with Alzheimer's, and enhance the lives of fellow caregivers.