Alzheimer’s guilt and stress: how you can deal with it

Alzheimer’s disease often brings stress and guilt. Not necessarily for the patient. Not for the professional caregiver either, since they are experienced and trained not to be bothered by these things. No, I mean that Alzheimer’s disease often brings stress and guilt for the patient’s loved ones.

Certainly, when your family member is distressed, you wonder if you did something wrong. Maybe you didn’t. Maybe you did something they didn’t like, but you had no choice. Maybe you made a mistake, but everybody does. Maybe it’s too late to fix it. We all need to learn to deal with guilt for things we really are guilty of, instead of shoving it aside. But you may not be guilty of anything.

Family members feel particularly guilty that they aren’t giving enough to their loved one. They feel guilty that they don’t visit enough, or that they don’t provide enough care. They feel guilty if they put their loved one in an Alzheimer’s care facility, assisted living center or nursing home.

The truth is that, for most Alzheimer’s patients, the primary caregiver is a relative, usually a daughter. I was unusual. I took care of my grandmother. She didn’t always like that, but nobody else was as available as I was. I was single, self-employed, and able to move. Nobody frivolously puts their mother in a nursing home. In fact, strictly speaking, nursing homes are used as places to get well. Once the hip fracture heals, the patient usually goes home.

But, as we reported in our article Reasons to consider an Alzheimer’s care facility, it isn’t always possible to care for your relative in their own home. And moving them to your home, once they’re already confused about where they are, will not make them less confused. Better for them to humbly make that decision while decisions are easier to make. Alzheimer’s does not make decisions easier.

If we all lived on farms with large families, Alzheimer’s might be easier to deal with. In Amish communities, parents expect to move someday into the adjoining “daadi haus” (grandfather house) while their son and grandchildren live in the main house. Children and grandchildren expect to care for their elders someday. If my grandmother had had a “daadi haus” next door, she might have moved into it, but she didn’t. By the time her children began begging her to move in with them, she had been in one house too long, in one neighborhood, and didn’t want to move.

Sometimes, today, there is no good solution. Don’t feel guilty.