Dear Carol: My husband who has dementia has lived in an assisted living facility for less than a year. The move was painful for me, but I could no longer keep him safe on my own. I visited in person daily until the COVID-19 lockdown and we’ve had daily virtual visits since then. Recently, I was able to see him outdoors and he seemed good. He didn’t know me, but that had happened long before the lockdown.
What hurts is that as I watched him walk back into the building, a female resident joined him, and they walked in holding hands. When I asked a nurse about this, she said that this woman is his new “girlfriend.” She assured me that this sort of thing is common because people in later-stage Alzheimer’s no longer remember or understand being married. She said that it’s the disease and has nothing to do with me. I get it, but oh, it hurts! How do I adjust? — DW.
Dear DW: I’m so sorry! This is one more painful adjustment for you among so many others.
Some perspective may help you feel better. Sandra Day O’Connor who, in 2006, stepped down from her position as the first female Supreme Court Justice in order to care for her husband, John, who had developed Alzheimer’s.
In late 2007, news broke about the fact that John, who'd moved to an assisted living facility nearly two years before, had recently found a "girlfriend" whose company made him happy. O'Connor's son, who became the family spokesperson, said in numerous interviews that O’Connor was glad to see her formerly despondent husband happy again. That was enough for her.
Did her heart hurt? I’m sure it did. Yet, she understood that this romance had nothing to do with the 55 years of love that she and her husband had shared.
I’m relating this story because to the best of my knowledge, prior to this announcement these situations had been kept under wraps, likely because they were considered shameful. However, as often happens when someone well-known goes public with a previously hidden problem, a healthy national dialogue finally occurred. This open dialogue helped other spouses understand in their hearts that such romances were innocent and simply part of a disease process that is devastating in so many ways.
A similar issue that is likely as widespread if not more so is when a spouse who is living with dementia calls their current spouse by the name of a person from a past relationship. I’ve heard from several people who have had to come to terms with this type of emotional pain.
As you stated, DW, knowing what is behind your husband’s behavior doesn’t mean it doesn't hurt you, but understanding can help you cope. I’d suggest that if you don’t already attend a dementia caregiver’s support group, you join one. The support of others facing similar issues will help you as you work through this and other painful changes that you will continue to face.
Carol Bradley Bursack is a veteran caregiver and an established columnist. She is also a blogger, and the author of “Minding Our Elders: Caregivers Share Their Personal Stories.” Bradley Bursack hosts a website supporting caregivers and elders at www.mindingourelders.com. She can be reached through the contact form on her website.