“I got a lotta problems with you people, now you’re gonna hear about it.”
Like Seinfeld? Me too. It’s on quite a bit these days in our house because it’s one of Steve’s favorites. One of the many perks of having Steve live with us now–more Seinfeld in my life.
So in the spirit of Frank Costanza and December 23rd, I’m airing my dementia grievances–and the strategies that help me deal with them. Without further adieu, here they are:
Dementia is a confidence thief
There’s no sense saving the worst for last. And this is the worst for me. Dementia has stolen Mom’s confidence with far reaching and painful consequences.
Her quick and easy smile. The uninhibited openness to everything and everyone. Her laser-like eye contact. Her ability to make you — whether friend, stranger, family, co-worker — feel like you’re the most important person in the world in any given moment. They’re all things that made Mom special and they all flowed from her confidence–which is (mostly) gone now. So all those things are too.
If I let my guard down, I’m crushed. But if I’m down and defeated, I’m no help to Mom. She needs me, so that’s not an option. To make sure I’m not beaten down by it, I’ve worked really, really hard to accept it. To know it’s there, and if it’s not, to know (and expect) it’s coming. This hasn’t been easy and is something I need to work at every day…. But it’s worth it.
Because when I see, hear, or feel her void of confidence, it rolls off my back and I keep focused on making sure Mom doesn’t get beaten down by it.
Instead of having a pity party in my head in those moments, I’m focused on using my words and my actions to show Mom that I have confidence in her. It’s not perfect but she seems to draw some of her own confidence back from it. And that’s what matters.
Dementia is a birthday robber
Mom’s always loved birthdays. She loves parties, always gave the most thoughtful gifts and just generally loved celebrating people. It flat out sucks that she doesn’t remember them anymore.
I fought this for a while and it was a mistake. Instead of accepting the new reality and finding a way to salvage some of Mom’s birthday zing, I was focused on the fact that she didn’t remember and it wasn’t the same. I wallowed in the sadness of it for a while and saw the consequences. The zing of the birthday was dimmed for everyone in the family as a result of my caregiver wallowing.
Like with the lost confidence (sensing a theme?), it was recommended by people I trust that I not run from it. They said I should confront it on my own time, really work to accept it. So that when it happens, it doesn’t sting quite as much. I don’t have to like it they said, but I do have to accept it as part of the story….now.
Instead of wallowing in it, Mom and I shop together. We buy the gifts and the cards together –and it’s fun. It’s not like it was but we’ve found a new angle of birthdays to enjoy–together.
And the best part is when she sees someone open a gift from her or when she hears the kids’ happiness when they’re telling her how much they like this or that–Mom still gets that flash of a smile. I can tell in those moments, for just a second, that she still gets that flash of pure happiness. She still has bits and pieces of that birthday zing. Focusing on those little moments has definitely dulled the sadness of dementia’s birthday robbery.
Dementia is a Christmas Hijacker
Because robbing birthdays isn’t enough, dementia also has a penchant for hijacking Christmas. Mom no longer knows when it is, it doesn’t cross her mind to shop, and worst of all, she has no opinion on what she’d like for Christmas. Her affect, when it comes to Christmas, is utterly flattened.
This is unfortunately the same as the birthday robbing, just a little more sucky because it goes on for longer. The holiday season is a month long as opposed to one day for a birthday. And as with the birthdays, after being exhausted from fighting the lack of Christmas spirit and joy, I’ve worked hard to accept it as part of the story…now. I’m getting better at blocking out the noise and focusing, really focusing, on the little moments. Because there is still joy in there.
Like when Mom tells me about the beautiful holiday decorations in her assisted living community. I can feel the happiness and contentment in her voice when she describes them. And we shop together–she loves it. Absolutely loves it.
Who cares if she won’t remember what she got for who, or why she got what she did. I’ll handle the details, I want her to enjoy the process. The little moments. And Mom’s face– when she unwraps a gift, or has the kids excitedly tell her about what they just opened– has the spirit of Christmas in it. It’s not like before, but it’s definitely goodness. And I’ll take it.
Dementia never quits & you can’t stop it. You can only hope to contain it.
There’s really not much to say about this one. It’s a rotten disease. The persistence of it makes me want to scream. It just doesn’t quit. If I lose my focus on caring for myself, the totality of it all takes a huge emotional toll–that usually manifests itself all at once when I least expect it. In those moments, I feel trapped and swallowed up by it. Then I’m overrun by panic because If I’m feeling like that, how must Mom be feeling?!? Ugh. Helpless.
As I’ve gotten better at caring for Mom (which really means I’ve gotten better at caring for me), I’ve learned to shift my focus to containing Mom. I’m not talking about containing the actual progression of the disease, that’s what her medication is for. I’m talking about containing Mom, the real Mom.
Keeping as tight a grasp on her as I can and making sure I’m present for the little moments. And making sure I’m doing what I can to be the ally she needs in her fight to live her best life. In spite of her dementia.
My job isn’t to fight. That’s Mom’s. But mine is to support her–replenish her confidence, help her see and feel all the little joys of life—-so she can put up the best fight she can.
Phew. Venting feels good. I think Frank Costanza was on to something.
Can you relate?