(Letter to the husband caregiver of a wife with Alzheimer’s Disease)
Family Caregiver Alliance occasionally posts blogs on “Caregiver Wisdom” . . . words sharing heart-felt thoughts and experiences from family caregivers. Thanks to those caregivers from the Link2Care program offered by FCA and California’s Caregiver Resource Centers for providing some of these. We invite your interaction―questions, comments or insights of your own. If you are a caregiver interested in providing advice for a future Caregiver Wisdom post, feel free to contact us at firstname.lastname@example.org with “Caregiver Wisdom” in the subject line.
I’d be surprised if there’s anyone [caring for a loved one with Alzheimer’s Disease] who hasn’t experienced the endlessly repetitive questions.
Your wife asks the same question again and again because she does not remember you’ve just answered it―or even that she has ever asked it before. But for some reason she does remember it’s important to her to know the answer, so she asks. Because she knows she can depend on you to know the answer.
Given that she has Alzheimer’s, her memory is not going to get better. Eventually she will forget that these questions are important to her; she may forget even the vocabulary she uses to ask them. I suppose you could call that the “silver lining” of advancing Alzheimers―being relieved of the irritation of having to answer the same question again and again.
Since she is still asking questions, she probably still has enough self-awareness to realize she has lost much of her mental abilities. That’s a very distressing realization, as you might imagine. And as the word suggests, distress is very stressful.
Nobody is at their best when under prolonged stress. People in your wife’s situation respond to this stress in various ways. Some become morose and depressed; some just become very sad; some go into denial―“There’s nothing the matter with me!”―but in unguarded moments may, like my mother, lament, “I just don’t know what’s the matter with my memory!” In some, the response is anger―anger at the entire world, even at whoever’s at hand. (You.) And some people become paranoid, convinced someone is hiding things from them (knowledge or physical items), stealing money or other possessions, etc. Hearing her doctor speak to you in words she no longer comprehends, she may become convinced there’s some sort of conspiracy. (Her world has become a strange and scary place, and somebody must be to blame for that!)
So it’s important to ease her distress in any way you can, and never add to it. The question, then, is how to overcome your irritation so you do not communicate it to her. Does she have questions she asks day after day, and the answer to each is always the same? Some caregivers have found it helpful to write those questions and answers in a small notebook, something she can easily carry around in purse or pocket–and when she asks the same question again, they just say, “Oh, have you looked in your notebook? That answer is in your little notebook.”
Myself, I wanted to reinforce at every opportunity Mom’s growing conviction that she could always depend on me for anything she needed―whether it be the answer to a question or anything else. I believed this would translate into a much easier caregiving experience for myself, especially as her Alzheimers progressed. And I hold to that belief today.
So I didn’t bother with a notebook. Instead, every time she asked the same question, I treated it as the very first time (which, to her, it was). In answering her question, I made sure my face, tone of voice and body language expressed pleasure that I could answer her question for her―smiling, making full eye contact, etc. And if the subject matter was of an emotional nature for her, I would put my hand over hers or give her a gentle hug, and then suggest a cup of hot cocoa (her favorite) to brighten her mood.
I did all I could, at every opportunity, to communicate the assurance that everything was all right and that she was still a valuable member of our team. Like if she expressed concern about her memory etc: ”Well you know, most people do forget things more often as they get older. But between the two of us, I think we do just fine! Sometimes I answer your questions, and sometimes you answer mine! Remember when . . .” and I would speak of some question she had answered for me , even though it might have actually been years earlier. I did everything I could to help her feel secure and OK. I felt this would pay huge dividends down the road, and I believe it really did. As Mom’s worries eased, she finally relaxed into a kind of hazy, dreamy state where she knew everything would be OK because I would quickly take care of anything that seemed out of order.
I hope some of this is helpful.