Bereavement After an Alzheimer's Death

By Allan Vann, Huffington Post, September 12, 2016

In my Huffington Post blog on 11/9/15, “Alzheimer’s Caregiver Support Groups,” I wrote about how caregiver support groups for Alzheimer’s disease (AD) spouses can be extremely helpful to those caring for a loved one with AD. Such a group was very helpful to me for several years after my wife, Clare, was diagnosed with young onset AD. When Clare passed away earlier this year, I thought I’d be able to move on with my life as a widower without much difficulty since I had already been living much like a widower for nearly four years. I never thought about joining a support group for AD widows and widowers.

However, I found that my grieving process continued much longer than I had expected. Since I had become used to living alone in our house while Clare was in an assisted living facility, and Clare no longer knew my name or even that I was her husband for a long time, I thought I would quickly “bounce back” after her death and be relatively okay. I had already been grieving for several years as Clare’s AD worsened, so I did not expect to miss Clare so incredibly much and feel so incredibly lonely after she was gone.

I was wrong.

Despite my desire to move on with my new life as a widower, four months after Clare’s death I still found myself depressed and extremely sad, brought to tears almost every day. I decided it was time for me to look for a bereavement support group for AD spouses. An online search of nearby available groups revealed several, mostly located at hospitals, but I could not find any groups exclusively for AD widows and widowers.

All people who experience the death of a loved one probably share many feelings in common, but I would argue that widows and widowers have different feelings than those who experience the loss of a parent, child, friend, or other relative. And with respect to dealing with the loss of a loving spouse, due to the nature of this disease many AD widows and widowers have often been grieving the loss of their spouses for a long time.

I think that there is a need for grievance support groups exclusively for AD spouses. This is a need that should be addressed not just by the two major national organizations providing resources for those with Alzheimer’s and their caregivers ... the Alzheimer’s Association http://www.alz.org and the Alzheimer’s Foundation of America http://www.alzfdn.org ... but also by their state and local affiliates, as well as by hospitals and other state and local organizations trying to meet the needs of Alzheimer’s caregivers. It would seem to be a natural transition for those who have been in a support group exclusively for AD spouse caregivers to then continue on in such a group after their spouses have passed away.

A month has passed since my decision to join a support group. Fortunately, during this past month I have made a lot of mental and emotional progress to enable me to “move on.” I am now in a much more positive state of mind. Instead of having daily periods of sadness and experiencing some mild depression, I am now trying very hard each day to feel incredibly fortunate at having been lucky enough to enjoy nearly 50 wonderful years of marriage with Clare.

However, I decided that since I am still mentally and emotionally fragile, I should go ahead as planned and join a grievance support group exclusively for recent widows and widowers, although not exclusively for AD spouses. The group meets for eight sessions, and those widows and widowers who feel they still need more support can then join a follow-up group.

I don’t yet know how many others in this group have lost a spouse to AD. But I’ll soon find out. My first meeting is scheduled for later this month.