Living with Alzheimer's
Northwest Prime Time, November 2006
I have read in a number of places that a woman married to a man with Alzheimer's is living a widow's life. In the two and a half years since my husband's diagnosis, I have not felt a sense of widowhood, but last night at a social function I did feel I am living the life of an almost widow. Here at the table were a handful of couples, each, while engaged with everyone in the group as I was, were also happily engaged with each other.
I went to the function myself because I knew it would be too stressful and too late at night for my husband. We have in-home care now so I pushed myself to go. I had a wonderful time, actually, meeting new people and visiting with long-time associates, but I missed my husband and felt myself bringing up his name in conversation a little too often. It worked out fine, but now that I am able to get out of the house and explore myself in new territories, I need to figure out how I am going to handle myself as an almost widow.
It is not that I haven't been independent during our twenty-five years of marriage, traveling, working, socializing and maintaining my own friendship networks, but now the rules are different. Whereas pre-diagnosis, and even earlier (since he probably had the disease long before I or the doctors knew) I left the house independently with the knowledge that he knew what to do with his own time.
Now, in Stage five Alzheimer's, my husband's initiative is gone, as is his possibility for arranging or participating in a social life, or simply scheduling a few hours of errands. I arrange his day and another caregiver is with him when I am not. I help him with personal care, meals and all activities. His freedom is pretty much gone. Often, I feel that mine is too. Still, we manage, with pleasant moments weaving in and out of those that exhaust us both.
Mourning the Relationship
By the time I realized I had settled into the role of spousal caregiver, my role had changed to include the experience of mourning the relationship that, for better or worse, had been. Getting out as an almost widow, whether to a poetry reading, a concert or an art exhibit, was not going to be as easy as buying a ticket or calling some friends. I was taking the Alzheimer relationship with me, leaving at least three quarters of myself at home with my husband's silent gaze.
I have been attending support groups for Alzheimer's caregivers for awhile and have been participating in the on-line Alzheimer's community. Both are helpful, but in each a component has been missing for me: discussions of grief and a focus on mourning before an actual death. And with Alzheimer's death is a daily occurrence.
When my mother was dying from heart disease, I attended a grief group at Northwest hospital. It provided a helpful outlet for expressing the feelings that come with knowing your loved one (LO) is in the process of dying, unlike the Alzheimer groups I have attended where the focus is often on the LOs behaviors.
Not everyone needs support groups, but, for me, they work toward helping me analyze and understand the grief process. When I leave my home, grief is my escort. Music, writing and art may soothe but none of those media help me shake off the feelings of mourning and grief. I know this about myself. So I google Grief groups, Seattle hospitals, churches and synagogues and find the numbers I am looking for.
An almost widow is not a widow. The relationship that used to be has taken a different form, but wherever I go, my husband and his illness are with me.
- Esther Altshul Helfgott