“Shake, Rattle, and Roll” (Big Joe Turner)

October 8, 2015

Last week, while visiting my mother, I had an insightful yet disturbing experience. It was insightful because I saw my mother from a different perspective. Disturbing, because I realized that there’s a shake-up in the dynamics involving any major change in relationships.

This shake-up in dynamics is not something I’ve been unaware of, but I think it’s emphasized when someone who has been seen as independent, or authoritative, is in a position of requiring the kind of assistance we might expect from a child. As a daughter, and now, as someone who requires caretaking, I’ve been able to experience both sides. I’ve seen my mother, and others her age in nursing homes, being spoken to as if they were 5 year olds. This is not only demeaning, but is somewhat insulting. It isn’t intended on the part of the caretakers, but it makes me think of the possibility that if we are not speaking eye to eye with someone, and literally or figuratively, are looking down at them, we imply a lack of parody. An example may be when we’re talking to a child, we simplify as much as possible, thinking that the little one won’t understand something more complicated. Something similar seems to happen once a person becomes elderly, or is disabled. I can’t tell you how many times I’ve been spoken to in this manner because being in a wheelchair means, to some people, that I’m hard of hearing. Sometimes, I’m simply ignored. As I said, I know this is done “with malice toward none” (Abraham Lincoln). But it’s still disturbing. In the case of my mother, she’s 92 years old, experienced incredible hardships, but I have no less respect for her, even though she has serious memory issues and requires caretakers, or is in a nursing home. But she’s quite different than the woman who raised me and guided me in all my important decisions. Where to go in a situation like this?

The experience with my son is not one that suggests a deterioration in his respect for me, but child-parent relationships, as well as spouse, or brother-sister relationships qualify. Is it ever a good idea to say something like, “We talked about this yesterday, do you remember?” I wanna say, “Fuck you!” when I hear that. I’ve already addressed the issue of being spoken about in the third person and how insulting that is. Let’s see, do I have any more complaints about how touchy we can be?

With so much responsibility being transferred over to caregivers, it’s only natural that the dynamics in any relationship would change. But can’t there be some awareness when speaking to or about someone elderly or in a wheelchair? The same sort of respect paid earlier in life might be employed. It’s a good idea not to try to erase all that the person in question has experienced or accomplished. Rewriting history is never appreciated– so don’t do that! Think of it this way, on top of everything this person has experienced, adjusting to age or disability can be added. Overall, I know I would say, and my mother would agree, it’s been an interesting journey.

On my onward and upward theme, there’s a new drug they are testing called MIS 416, as well as a few others, that could be helpful for people with SPMS (secondary progressive MS). I’ll find out more when I see my neurologist in December and will report accordingly. The hope continues.


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