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Carol Bradley Bursack, Published January 11 2014

Minding Our Elders: Dad with dementia insists Mom is alive

DEAR CAROL: My dad has had Alzheimer’s disease for more than six years. Two years ago, Mom died and he seemed to accept it, though with deep grief. His AD was considered mid-stage at the time, and I thought he was retaining the reality of Mom’s death. Now that he’s further into his dementia, he’s insisting that Mom is alive. Dad talks as if Mom’s quite young and he wants to see her. I was raised to never lie to my parents. It’s breaking my heart to see him go through the pain of her death over and over. What do I tell him? – Daniel

DEAR DANIEL: Your dad’s short-term memory was already severely damaged at the time of your mom’s death. That means he couldn’t make new, lasting memories, so the information didn’t stay with him. He’ll likely keep asking about your mom now because, in his current cognitive time frame, she is not only alive, but quite young. That’s why each time you tell him that two years ago she died, he must go through the shock and grief over again.

I believe that a marriage deserves to be dignified by relating to the impaired spouse the information about the death and the chance to participate in any related ceremonies. You did just that when your mom died. However, after that, when short-term memory has been destroyed, it’s often easier on everyone if you can provide a less painful answer. Saying something like “you’ll see her soon” can work well. After you provide your dad with an answer, change the subject and move on to an activity he may enjoy such as watching a vintage movie with him or going for a walk together.

Even though you hate being dishonest with your dad, he’s likely incapable of forming the memory that his wife is deceased no matter how often you tell him, so repeating this news serves no real purpose. Watching him go through the pain repeatedly is horrible for you, as well. If you tell him that he’ll see your mom soon, you’re providing him with an answer that he can absorb without pain. There’s no need to feel guilty when you use therapeutic fibbing, as this method is sometimes called. You are being kind.

You, as the caregiver, need support. If you haven’t done so already, look into community resources through the Area Agencies on Aging, the National Institute of Health and your state’s official website. To find community resources on your state website, type the name of your state in your browser along with the term “aging.” By doing so, you should find many local resources including your state’s version of the National Family Caregivers Support Program, though this program has a slightly different name in each state.

I’d also suggest that you call your local Alzheimer’s Association or go to their website at www.alz.org to find a support group. There are support groups that you can attend in person as well as online if you prefer that approach. I can’t stress enough the value of the support from other caregivers through these groups.

Carol Bradley Bursack is the author of a support book on caregiving and runs a Web site supporting caregivers at www.mindingourelders.com. She can be reached at carolbursack@msn.com.