Imagine, if you can, sitting next to your spouse of 25 or more years, and experiencing for the first time that she no longer recognizes you. As a matter of fact, she’s quite scared of you, fearing eventual harm, and backs away, even screaming, because you’ve become a menacing figure in the room. Or your father, who you have diligently visited at the facility several days a week for a couple years; he looks at you with a questioning glare and asks, “Who are you? Why are you here?”
You can’t imagine this scenario unless, of course, it’s happened to you. I’m talking to you, the new-found stranger in your loved one’s life, in the hopes of softening the blow that the above scenarios have landed on you.
Oftentimes during the course of our loved one’s dementia, we’ve managed to find the humor in some of the ongoing episodes, e.g. observing your wife as she stands in front of a mirror, carrying on a one-sided conversation with her new BFF; or your husband’s acceptance of you as a nice lady and all (even though he doesn’t recognize you as his wife), but he tells you he’s not gonna have sex with you because he’s already married; or perhaps you’re admiring the outfit your mother has chosen to wear for the day, only the bra and panties are worn on the outside of her blouse and pants and it’s time to take her to church! Kind of funny, right? But these odd behaviors take on a whole different light when, by their very nature, they cut you off from the loved one with whom you have shared so much history.
I first learned that my father no longer recognized me when I walked into his Oregon hospital room – he had been admitted with an ongoing prostate issue – and after spending a good portion of the day with him, he stood up to shake my hand and said, “Well Jim, it was nice of you to drop by but I have things to do.” Needless to say a) I’m his daughter; and b) my name is Irene. My 89 year old father was five years into his dementia by that time – and as it turned out, only one month away from dying – but the good news is that I had just experienced a really wonderful day with him and I felt very close and in-tune to him.
Did it feel weird for him to call me a name not mine? You betcha – especially since it was a male name – but let’s face it, my hair is pretty darn short so maybe I reminded him of a friend of his and that’s the name that came to him first. Unfortunately, his incorrect identification of me only happened once because the next time I saw him, he was in a coma dying from prostate cancer. What I would have given for many more opportunities to have passed off as his friend Jim. It was not to be.
The loss we experience with non-recognition. I think the biggest loss that is felt by family members is that their loved one no longer shares the same family history. No longer are we able to talk about old times; no longer can we reflect on the road trips, the Holidays, or the day-to-day memories that make a family unique. Nope – we’re on our own and even if we have other siblings with whom to share these stories, it’s just not the same. Imagine being the only child and your last remaining parent no longer has the ability to be a part of the stories and histories that keep your legacy alive. That’s a difficult pill to swallow to be sure. There are no amount of condolences, hugs, and “I’m so sorries,” that will take away this very real pain.
I think the only gift I have to offer those experiencing this scenario is to say that only YOU can provide the love that your father/mother/spouse/sibling can receive. A caregiver can’t take your place; a well-intentioned volunteer can’t take your place. Only you can transmit the familial love that will make a difference in your loved one’s life.
Whether your name is Jim, or sweetie, or heh-you: please know that you hold the only genuine love that can make a difference in your loved one’s life. If you can believe that – your visits might be a little less painful when you’re no longer the acknowledged spouse, adult child, or sibling of your loved one.