Understanding the Family Member’s Experience

Last week I was privileged to attend a conference for family caregivers. The speaker of one particular session was incredible. She told stories about her experience with her own parents, both of whom suffered from Alzheimer’s disease, and how she coped – and laughed – at nearly every turn of events.

The audience howled as she talked about traveling across the globe on a “last trip” her parents requested of her. She shared how her mother would go into the airplane’s miniature toilet, only to be unable to let herself back out – time after time. By the end of the flight, the entire section of the plane cheered along with the speaker each time her mother successfully released the lock and got out of the bathroom.

Then she shared how her mother, long after losing her ability to speak, had a lucid moment right before she died. She clearly said, “I love you too,” in response to the speaker’s proclamation of affection.

As she shared this story, the woman sitting next to me burst into racking sobs. As I passed on the tissues another woman dug out for her, I couldn’t help but wonder what her brought on this woman’s tears.

I wondered if she, too, had been trying “all the wrong approaches” to dealing with a loved one with memory loss.

Perhaps she had been saying, “I love you” to someone in her life – and was still waiting for the responsive, “I love you too.”

It made me realize, though, that what seems like common knowledge to us when we care for our clients may be completely different for family members.

We know, for example, that our memory impaired clients are trying as hard as they can. We don’t urge them to “try harder” or say, “Don’t you remember me telling you this?”

Families struggling with a mom, dad or spouse who was once a source of strength, and perhaps now no longer recognizes them, experience daily life in an entirely different way.

Wouldn’t it be enlightening for us to invite our clients’ family members in to share their stories? Wouldn’t it help our caregivers gain more empathy and understanding, in the process?

As trainers, we need to train for care of the entire client unit, including family members.

We’ll be better prepared to provide genuine person-centered care – for families as well as for clients.