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When a human being considers something to be negative, the natural inclination is to try and change it if they can, or try to avoid it if they can.
Being in the presence of a neurological disease that is changing the person you know and love can create not only a lot of fear and anxiety, but also the desire to resist it or avoid it with all your might. How could you just let your love one live with this disease without putting up a fight?
In my view, there’s a very big difference between intentionally seeking out knowledge and solutions but not being attached to the outcome versus desperately trying to change something.
As an example, let’s say your mom has Parkinson’s. Your desire might be to try and control every aspect of her life in order to try and create the healthiest outcome possible. You watch her diet, push her to exercise, buy her brain puzzle books, buy her all the latest supplements. Is she better off for all this? Perhaps. But who are you really doing this for?
I pose this question, because I’ve been in this very situation, but replace Parkinson’s with Huntington’s Disease. Over the past 10 year, since my mom was diagnosed, I’ve tried to get her to change her lifestyle and diet. She’s definitely made some changes for the better, but not to the extent that would make me feel peaceful about it.
And therein lies the rub.
All my actions, while seemingly selfless (I mean I’m helping my mom with a neurological disease FFS!) were really about alleviating my own fears.
My mom loves candy. She loves sitting on her couch all day, doing simple word puzzles, reading the bible, watching my brother walk through the door when he gets home from work (he’s a live-in caretaker), and watching the occasional movie.
She does walk on her treadmill every morning for about 20 minutes. She forgets to brush her teeth. She is hardcore about her medications and panics if anyone recommends trying to taper down on something.
She loves her religion (the very one I, the black sheep, abandoned) and is very devoted to God.
She lives with a neurological disease, and continues with her life the best way she sees fit.
In the past I didn’t think it was the best way, and I wanted to try and control her, try and make her change her habits, so I wouldn’t have to feel the fear of anticipating her disease progressing, or something else like diabetes popping up, or waiting for a phone call from my brother that she was in the ER.
But I can’t control her. I still share my healthy lifestyle with her, and interesting things I discover about brain heath. I still encourage her to brush her teeth, and tell her how great it is that she walks on her treadmill. I still sometimes remind her that at some point diabetes might be on the horizon, simply because at some point her cells might not be able to handle her sugar intake.
I’ve just become very conscious about the fact that if I ever try to use guilt or fear to change her behavior, that’s my shit I need to deal with. My mom’s brain might be under attack, but the wisdom of her body persists. If it’s obvious a behavior has become life threatening, then we’ll deal with it together. My mom is going to die. There is NOTHING I can do to change that fact.
So I allow her to have Huntington’s Disease, and live as the human being she wants to.
There are a couple of definitions for the word “allow” and I think this one fits best in a case like this:
“Give the necessary time or opportunity for.”
My mom is who she is, and this disease is part of that. If I fight it tooth and nail, I am fighting my mom.
And if I really think about it, there’s no sense in that.
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