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.
Access online only at
http://www.socialworktoday.com/news/pp_050318.shtml
