I am struggling.  I have introduced you to my mom, Joyce.  Mom lives in a long-term care facility with Multiple Sclerosis (M.S.).  She is 70 years old, and no one knows how much time she has left with us, mostly because M.S. is unpredictable, and she’s outlived every prognosis ever given.  She’s one tough cookie.

grandma joyce 1.14

If that wasn’t hard enough, Mom has the double-whammy of a progressive physical illness, that also has brain and nerve symptoms that affect her emotional well-being; AND mental health problems.  While her official diagnoses have evolved over the years, mom struggles with depression, mood swings, difficulty concentrating, moments of amnesia, poor judgment, inattention, and… sometimes she’s mean.

I said it.  She can be mean.  Sometimes she hurts my feelings.  Sometimes she hurts my kids’ feelings.  As they age and as her health and mental health further deteriorate, it’s happening more often.  The kids also are developmentally more able to pick up on it, ask questions, and have their own thoughts, feelings and reactions.  It has been very tough over the last several months, and we need a plan.

To be fair, Mom is losing her memory.  She mixes up who we are and our relationship to her.  Today is my birthday, and she wished our daughter a happy birthday.  Sometimes she doesn’t recognize me, or she thinks I’m her sister.  While hard to accept, this is a normal part of progressed M.S., and we can accept it with compassion and patience.  Harder to accept is her tendency to have favorites, to compare one child to another, or to dismiss or disregard one.  This pattern is not because of M.S. but instead mental illness.  It’s a pattern she’s had for a lifetime and her mother had before her.  You were a saint or a demon, perfect or worthless.  There is no middle, no gray, no “good enough.”

I knew I’d need to act when I began hearing my son say many of the things I said (or thought) as a child.  “Why does she call me the best all the time?  Doesn’t she know that can hurt Sissy’s feelings?  Why didn’t she get a compliment like that too?  She should love us equally.

It infuriates me, and my wife can’t cope with it.  I tell her when I need her to come, usually for holiday visits, and otherwise I go with the kids.  Yet, I wonder how fair it is to continue to subject them to this.

Here’s what I know:

  • My mother is not consciously choosing to be mean
  • She may have the capacity to produce a desired behavior in a moment (Please compliment her now!), but she can’t keep it up
  • She is otherwise lonely, and most others have given up on her/stopped seeing her
  • Her grandkids are her very greatest joy

I also know that I don’t want to see them hurt.  For now, I’m explaining it as honestly and plainly as I can, and at least for today, it’s enough.  It’s tricky, too, because while much is written about how to support family members with mental illness, I haven’t found much around how to help my children cope with the impact on them.  Some of what I’ve found useful is from NAMI, here.

Above all, I want them to know that it is her mental illness and/or her disease speaking, not her heart or her love.  I want them to know that they aren’t responsible for what she says, and also that what she says may not be true.  I want them to know that hurt feelings are okay, and to talk about them.  I also want them to know that everyone in this world has different strengths and different limits, and that sometimes the choices someone makes because of their limits can hurt us.

Perhaps my biggest struggle is this:  I want to protect my kids from being hurt, but I also want them to understand that mental illness is real, prevalent, and that those who struggle with it deserve the same compassion, respect and opportunities for love and belonging as we all do.

 

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