Caregivers may need to work to recover positive memories


Dear Carol: My husband and I were teenage sweethearts and married right out of college. While we experienced bumps along the road, I'd say our marriage of more than 40 years was exceptional — or was until my husband developed Lewy body dementia. The dramatic personality change that this disease caused was devastating for us both. The worst part for him was that, at least in the beginning, he would realize that he had become verbally abusive and hated himself for it.

For me, it was because this wonderful man that I married began to scream that he never loved me. My husband died a year ago, and I'm still having trouble remembering the good times before LBD. I'm seeing a counselor and, though I still struggle, that is helping. I just wanted to write to let other people know that they aren't alone if they are burdened with this same issue. — Gin

Dear Gin: I'm so sorry that you must struggle with terrible memories from the last years of your marriage. You know that the change in your husband was caused by the disease, but it was his voice that said those words, so ridding yourself of the pain will likely be a long process. Writing this note can't have been easy, but it was brave and kind and your words will resonate with readers.

Many of us who have provided long-term care for spouses or, in my case, elders, have to cope with clawing our way back through distressing memories in order to find our way to the happy ones that preceded the illnesses. This process is part of recovery, as I'm sure your counselor has told you.

My dad's overnight dementia lasted a decade from the time of his failed surgery until his death. My mother's decline was also long and slow and it included quite a drastic personality change because of pain and, in part, the medications that she needed in order to achieve some physical comfort. I mention these personal situations because I went through something similar, though not nearly as devastating, as what you're going through. Time did help, as did a conscious effort to rediscover the happy memories from before the illnesses.

Fighting your way through the pain and rediscovering the good times won't erase those difficult last years, but likely you wouldn't want that anyway. What it will do is help you put your years with your husband in perspective. You had a long marriage that was exceptionally good, which many people never enjoy. Therefore, the journey that you face in emotionally traveling back through the tough years to recover your memories of the good ones is a journey that you must continue. You understand that the disease was speaking when your husband was abusive. Work hard to internalize that truth. You're off to a good start because you are seeing a counselor. I'm certain that, as time goes on, you'll again think of love first when you recall your marriage.

Carol Bradley Bursack is the author of a support book on caregiving and runs a website supporting caregivers at She can be reached at