Rick Phelps was diagnosed with Early Onset Alzheimer’s in 2010 at the age of 57. He is a active advocate for dementia awareness and has written at least two books. He started a Facebook group called “Memory People” on which he wrote an interesting post a few days ago. In his message he expressed his frustration with people who can’t remember that he can’t remember. He says this happens even among his own family members.
He makes an interesting point. Caregivers often get frustrated when their loved ones don’t remember what we just told them. Just this morning I read another Facebook post from a caregiver that was pulling her hair out because her mother keeps asking to go somewhere. When she asks where she wants to go, her mother says, “I don’t know.” The caregiver herself didn’t seem recognize the problem is a direct result of her mother’s Alzheimer’s. I heard about another caregiver who wrote down a set of instructions for his wife who had dementia. That can be helpful for someone who can remember there is a written set of instructions and where it is located, but that’s asking a lot of someone with dementia. That is especially true as the disease progresses.
I like to think that I am more sensitive to this issue than many caregivers, but I, too, recognize that I sometimes (often?) say, “But I just told you.” I suspect that most caregivers know it doesn’t make sense to say things like that, but it can be hard to avoid.
It makes me think about my graduate school days in social psychology. During my doctoral program, I was influenced by an advisor who was a vocal exponent of behavioral conditioning. While I have drifted away from that somewhat, I do believe much of our behavior is a function of conditioning. Of course, it is far more complex than what happens in laboratory experiments with pigeons, but I believe we develop many behaviors that are so routine that they can be difficult for us to change. The best illustration I think of is the way we respond when the power goes out. We do silly things like turning on a light switch or the TV only to realize they need power too. We can all think about our own habits that are so hard to change.
So it is when caring for someone with dementia. It calls on us to rethink everything. To make it even more difficult, people with dementia generally appear to be quite normal in most ways until very late in the disease. That fact alone leads us to treat them normally as well.
But all of this is an effort to explain what some would call caregiver “mistakes.” Even though it is hard, caregiving calls on us to change as our loved ones change. One of those changes is how we communicate. Kate is more sensitive now. I have to be very careful what I say and my whole demeanor. The first thing I do when I walk into the bedroom to wake her is to get a sense of her mood. I try to respond in a way that is most helpful. I have found that what I say and the tone of my voice can greatly influence how she responds. She doesn’t want to be pushed. She is not ready for me to be too jovial though she often responds to a gentler expression of humor. She is a little slow to get up. That requires that I try to get in sync with her and not the other way around. When I get it right, it is easier for me to get her up, dressed, and ready for the day and, to top it off, in a good humor.
I feel I have learned a lot since Kate’s diagnosis, but different things are required at every stage of the disease. That means I am always adapting and admit that I have been far from perfect. Kate is good about letting me know when I fail to do the right things. I appreciate that. When I rush her, she frequently says, “Stop. You’re going too fast. Just give me one thing at a time.” I also benefit from her own sensitivity about what she says to me. For example, yesterday morning I started to help her put her slacks on. She stopped me and said, “I can do that myself.” I said, “I’m sorry. I know I shouldn’t have acted so quickly. I wanted to be helpful.” She said, apologetically, “I know you meant well.” Working together like this is a good reason we have been able to get along as well as we have.
I continue to believe Kate and I have been fortunate, and I am cautious about passing along advice to other caregivers except at a general level. What I have done is tailored very specifically to Kate’s personality, her symptoms, and the nature of our relationship. I believe other caregivers should examine their own situations and respond in ways that address their particular, and often, unique situations.
In some ways, I think this last stage that Kate is entering is most critical because she is so sensitive. I try to retain my focus on keeping her happy and safe. I find that when I do that, everything else seems to fall in place. So far, that seems to be working.