Lesson #26: No Apologies Necessary

My mother is angry and I don’t blame her. If you were to wake up every day not remembering anything from the day before, if your home of 40 years suddenly looked unfamiliar, if there was a continuous parade of strangers hovering over you and asking you to do things, and if you couldn’t remember simple things like how to swallow a pill… well, most of us would be royally pissed off.

When I began this journey three years and several eons ago, I found it puzzling to read about how people with dementia could be aggressive and hard to handle. I had only experienced the effects of dementia on my paternal grandmother and aunt, who were simply forgetful and suspicious that their “stuff” was being stolen. Both women were, otherwise, good-natured despite their brain deterioration. Like his sisters, my father displays the same temperament. He gets frustrated at times, but is over it quickly and returns to his natural state of pleasant and happy.

So when Mom’s anger became her predominant state and a challenge to her care team, I did what I always do: Research. The standard medical literature states that anger is a “symptom” of Alzheimer’s, with most experts agreeing with this generalized statement from WebMD: “Sometimes, people with Alzheimer’s disease lash out for no clear reason. They may get upset or angry easily. … This kind of aggression usually starts when people get to the later stages of the disease.” It goes on to say “No one knows for sure why it happens.” Well, duh.

I’m increasingly frustrated by the misinformation that blocks care partners in their quest for solutions. Were I to believe everything I read, I might have agreed with Mom’s geriatrician that she should be taking both an anti-psychotic and an anti-depressant. I might have drugged her up to the eyeballs in an effort to minimize her behaviour because, to be honest, it’s darn inconvenient. Luckily for Mom, though, I have a healthy skepticism of prescription drugs – I worked in the pharmaceutical industry for decades and am aware of its tricky relationship with truth.

Truth is very subjective, it seems.
Thanks to the work of tireless dementia advocates like Susan Macaulay, who outlined certain behaviors and normalized them in a way that made us all open our eyes a little wider, we can and should explore our own truths. I’m now convinced that my mother’s behavior is not at all unusual or overly exaggerated. With compassion, understanding and patience (and without any drugs) we’re now doing all we can to help Mom feel heard, understood and loved. As I would with anyone who is hurting emotionally, I listen, sympathize, reassure her and allow her to express herself without subduing or making her feel bad about it. Rant and rave all you want, Mom. 

If you’re dealing with someone who is angry and aggressive, try to put it into context before over-reacting. Try to see how normal it might be for this individual to react this way to a failing brain. Drugs may be necessary in some extreme cases, but I’m beginning to think that for most seniors with dementia, the anger is justified and reasonable, and no cause for undue concern.

It is what it is. We can’t fix it and we shouldn’t try to obliterate it. We most certainly need to understand it better before we resort to heavy-duty drugs, which will rob most people of their quality of life. If you don’t have quality of life, what’s the point?

Never apologize for how you feel. No one can control how they feel. The sun doesn’t apologize for being the sun. The rain doesn’t say sorry for falling. Feelings just are.
– Iain Thomas

 

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2 thoughts on “Lesson #26: No Apologies Necessary

  1. Not surprisingly, I think this is an absolutely awesome post, and my thinking has nothing to do with the fact that you link back to one of mine!

    It’s amazing to me that more people haven’t come to the same inescapable conclusion that you and I have come to in an extraordinarily short period of time.

    I wrote somewhere some time ago in a comment that I found it astonishing that it should take me only three years to arrive at a conclusion that the whole geriatric research and care profession worldwide Is only now beginning to sidle up to after three decades. It’s simply unbelievable.

    I know you and I are brilliant, but what the heck is the matter with the rest of them? How did they get to be doctors and researchers with their work published in prestigious journals? How could they not figure out something that is as plain as the nose on your face?

    Now all we have to do is 1) convince the resistors, and 2) marshall the resourses to implement change.

    Keep up the good work.

    Like

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