Reliving Loss Is a Painful Cycle for People with Alzheimer’s

“It’s so much darker when a light goes out than it would have been if it had never shone.” — John Steinbeck, “The Winter of Our Discontent”

The longer we live, the more loss we experience. It is a natural but uncomfortable part of life. Loss may manifest in diagnosis or the death of a friend or family member — just fill in the blank. At some point in time, your heart will break from bearing the weight of loss.

Death is the ultimate loss

Death is the ultimate loss for those left behind. You say goodbye and let go until the next time your heart is bent in sadness. But as devastating as it is, life goes on. The world briefly stops as friends offer condolences, show kindness, and share loss and grief as best they can. But life goes on. It must. Eating, drinking, and merrymaking continue, while the brokenhearted trudge sadly on.

Loss doesn’t diminish for people with Alzheimer’s. They are living their own kind of loss — including the loss of cognitive function, but other losses as well. And as their caregiver, you’re sharing in it firsthand.

Reliving loss

The death of a loved one may be particularly difficult for someone with Alzheimer’s. Cognitively speaking, they may not have the ability to grasp or accept it. Even if they understand in the present, they may forget in the long term.

Patients ask about spouses, children, parents, and friends who’ve gone on before them, opening old wounds. Caregivers face the grim task of informing them as if it were the first time. Explaining that the person they love so very much has died is painful. Reliving the loss is akin to ripping a bandage from a scab, preventing it from healing.

On good days, my mother, a woman of faith, understood that my father went to heaven before her. On less than good days, she searched for him, asking when he’d be back, and worried that her husband of over 50 years should have been home by now. It was incredibly painful.

Dad wasn’t just at the grocery store. He wasn’t coming back.

Columnist Ray Burow’s beloved parents, Ruth and James “Mitt” Page. (Courtesy of Ray Burow)

We also mourned Mom’s inability to grieve fully. She relived my father’s passing after every episode. While she seemed to accept it, we didn’t know how the news affected her on the inside. She must have been saddened to learn yet again that her sweetheart was gone.

Our family navigated Alzheimer’s the best we could, watching the brokenhearted trudge along. It was a “learn as you go while on the job” kind of experience. We learned to roll with the difficulties and deal with my mother’s serial mourning. We also learned that there’s no right way to relive loss.

A difficult choice

Some caregivers choose to keep their loved ones in the dark regarding death. We didn’t, primarily because it would have exacerbated the situation. My mother often recalled the sad memory of my father’s passing, which confused her.

The best advice I have for caregivers in similar situations is to hang in there. Endurance and kindness are key. Prayer is an essential part of caregiving for people of faith and propelled us through the process. Joining a support group with people who are facing similar events also is invaluable.

***

Note: Alzheimer’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Alzheimer’s News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Alzheimer’s disease.