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