What's the best way to handle criticism about the Alzheimer's care I'm giving my mom?

A fellow caregiver asked...

I've been caring for my 74-year-old mother, who suffers from Alzheimer's, for several years now, and some days it's difficult not to become frustrated with her. This has happened a few times when relatives were visiting, and they've given me some grief about not being more understanding with her. How do I deal with this unwarranted criticism?

Expert Answer

Beth Spencer is a social worker in Ann Arbor, Michigan, with more than 25 years of experience with families who have a member with dementia. She is coauthor of Understanding Difficult Behaviors and Moving a Relative with Memory Loss: A Family Caregiver's Guide. Previously, she directed Silver Club, early-stage and adult day programs serving individuals with Alzheimer's disease and related illnesses.

It's very common for people who aren't the primary caregiver to be critical -- they often have no idea how hard day-to-day care is. So I try to make sure everyone in the family understands what all the tasks involved are. At the same time, I try to help the caregiver identify what the specific criticisms are, what their cause is, and whether there's anything that could change.

One useful idea for both sides is to ask the critical family members to give you some respite, maybe for a couple of days while you go out of town. They should begin to understand the kinds of difficulties you cope with daily.

Be aware, though, that people with early dementia who still have good social skills often rise to the occasion in these situations. They may be able to function very well for limited periods, leading the relief caregiver to underestimate the actual level of impairment. What's more, the effort is usually exhausting for the patient, who may fall apart after company leaves. Two or more relief stints might be needed.

Some discord happens because relatives have differing values. Maybe your siblings want to boost your mom's independence, and you feel she needs more supervision and hands-on care, or vice versa. Family members may have different tolerances for risk as well, and that may inform what they think needs to be done. An honest discussion of each person's perspective -- including the unspoken "shoulds" and "shouldn'ts" we each carry -- can help all of you.

When you're at an impasse, or if you find it hard to communicate on your own, consider asking an impartial party to lead a family meeting to talk about these issues in a neutral setting. Many Alzheimer's Association chapters have individuals who are available to lead these meetings, as can social workers, geriatric care managers, ministers, and rabbis.