Alzheimer’s Association (ALZ.org):
Northern NJ – Southern NJ · Symptoms/Warning Signs
Notes For Alzheimer’s Caregivers
By Dan Gasby, co-author, Before I Forget
Two years ago, when my wife got her diagnosis…of Alzheimer’s…I made the same assumption that almost all newcomers to this challenging subject do. I thought it was all about her. She was the patient — maybe the word I used more often was “victim.” But the challenge, I came to see, was just as formidable for me as it was for her.
I don’t ever minimize what she faces every day, and how that challenge grows. But being a caregiver is hard — it is definitely the hardest thing I’ve ever done in my life. Here are a few helpful suggestions I’ve learned through the experience of taking care of a wife with Alzheimer’s, day by day, hour by hour.
Learn as much as you can about the disease. Most caregivers read very little. For one thing, they’re occupied with caring for their loved one, but frankly, most feel they’ve done enough by just listening to what their doctor tells them. Maybe this seems like extra homework, but I found it oddly comforting to know what doctors have figured out so far. There’s so much to learn in terms of diet, activity, ways of coping…and what the paths are to a possible cure.
Don’t treat your loved one as if she doesn’t exist, and don’t refer to her in the third person. Avoid being condescending or critical at all costs. The most loving and well-intentioned caregiver can find himself icing the loved one out of the conversation—while she’s sitting right beside you. Even severely impaired patients tend to sense when they’re being excluded.
Don’t try to finish a loved one’s sentences — give them time to respond. If they can’t retrieve the thought after a long pause, gently prompt them with what you think they’re trying to say. I still get impatient—I’m only human—but after all, what’s the hurry?
Above all, never lose sight of the dignity within the human being who has the disease. Maybe it’s the most critical point of all. Patients get worse with Alzheimer’s—so far, that’s the unavoidable truth, without exception…It’s a terrible, terrible process for them and for those who love and care for them. But even those with severe Alzheimer’s retain their humanity and remain, somewhere inside, the people we knew. We have to honor that, always, even to the last, both for their sake, and yours.