I lost my wife, Clare, to Alzheimer’s disease
(AD) in the spring of 2016 and with 2020 now here I am still struggling to
fully move on with the rest of my life. I did not expect to have such a long
struggle because I had already felt widowed for several years before Clare
died. She was confused all the time, she was increasingly unable to express
herself in words, she no longer knew who I was, and we had been living apart.
Her mental faculties were gone, and “Clare wasn’t Clare” anymore. I was
grieving that loss every day.
But even after Clare’s mind was gone, I could
still be with her. I held her hands, hugged her tightly, kissed her, and told
her how much I loved her. Usually there was no response, sometimes I received a
smile, and on those increasingly rare days when she would say a few words in
response, her words were often, “Can you please find my husband?” Clare was
“there” with me, yet really “not there” with me at all.
With no cure for AD, once your spouse or
partner receives an AD diagnosis, it can become a death sentence. The
unanswered question is how much quality time you may still have together. I
started observing AD symptoms when Clare was 60 and her AD diagnosis was
confirmed a few years later. After her diagnosis, we were only able to enjoy a
few more good years together.
A fellow AD spouse, who was also still
experiencing similar sadness and loss after the death of her husband, noted
that losing someone you love to AD really means having to deal with death
twice—first when you lose their mind, and then again when you lose their body.
That is a profound way to look at loss due to
AD, especially for a surviving spouse who had been in a long and loving
marriage. Once unable to have even the most basic conversations with an AD
partner, the survivor begins grieving an almost unbearable loss. No longer
being able to share the highs and lows of daily life, and no longer being able
to share the joys of common memories is a difficult loss to face. In a very
real way, once unable to communicate with your AD partner, the survivor may
begin to mourn just as though their AD partner had already died.
However, surviving spouses and partners can
still be with their loved one after their minds are gone. Even with no
reactions or responses, survivors can continue to hold their hands, hug them,
kiss them, and tell their AD partners they love them. Even when no longer able
to talk with them, survivors can still talk to them.
Being able to hold a beloved AD partner in
your arms while you talk to them, even when there is no verbal or physical
reaction of any kind, can provide at least a small degree of emotional comfort
for the survivor. Physical contact can, even if only for fleeting moments, help
resurrect cherished memories that may counter some of those enormous feelings
of daily sadness that never seem to leave.
A few months or years later, when a person
loses their partner’s body, the survivor begins grieving painful loss a second
time. Moving on after the loss of an AD partner’s physical presence, while
still mourning the earlier loss of their mind, is a lot to move on from.
Social workers who facilitate support groups
for those who have lost a partner to AD must understand that survivors may
experience death differently than those in other support groups.
With Alzheimer’s, loved ones may experience a
double loss.
— Allan S. Vann, EdD, a widowed spouse/caregiver, has written
many articles to help AD caregivers, including several that have been published
in Social Work Today. Caregivers can read copies of all of his
published articles on Vann’s website at www.allansvann.blogspot.com.
Published in Social Work Today, online only . Access at: https://www.socialworktoday.com/news/enews_0120_1.shtml
