There’s a woman I’ve never met on the other side of the world. Her name is Jane (not really, but let’s pretend); we connected online through the mutual friend of a friend’s friend.
Jane’s partner, let’s call her B, lives with dementia; Jane has been her 24/7 care partner for several years already. Jane has had little if any outside support caring for B, which has been relatively easy until now. Relatively. But now? Not so much.
Like many dementia care partners, Jane didn’t realize the toll her care partnering role was taking on her until things recently ramped up a notch a notch or two. Hers case is like the metaphor of the frog in the saucepan. Thousands upon thousand of care partners out there at this very moment are like so many frogs in so many saucepans on so many stoves with the heat on low. But back to Jane. Now, because she’s exhausted, and has few energy reserves, Jane’s patience is wearing thin. Very thin. Thin as the skin on the back of an elderly hand.
Sensibly, Jane is reaching out for help. But help is in short supply. The system, what little there is of it, is broken in Australia where Jane and B live, just as it is in Canada, the UK, and the US. Friends and family members are sometimes willing and able to help, but lately, just when Jane needs more support, “sometimes” has become “rarely.” It’s not for lack of good intentions, but as we all know, the road to hell is paved with those.
I know the place where Jane is, because I’ve been there. I know the pain and the panic, the frustration and the fear. Ten months into being my mom’s primary care partner 24/7, I was breaking; I hung by a proverbial thread. I’d had a paid care worker with us from 9 to 6 five days a week for six months, and EVEN THEN, I could feel myself falling apart. Soon, I wouldn’t be able to function.
I contacted a therapist I’d seen in my twenties. We agreed to have several sessions on Skype. Whenever I had to do something for myself, or to have some “alone time,” I had to leave the house, which I could only do when the paid caregiver was there. Because all of that was a hassle, I mostly stayed in and worked in my room when she was with us, going for a walk or run or whatever when I could. But for things like the therapy sessions, I had to go to another location. On this particular day I had escaped to a friend’s yard about three miles from home. I’d made two trips back and forth because I’d forgotten my phone, which I needed for the Skype call.
This is what the start of the session sounded like:
If you are a care partner like I was, or like Jane is, who is cracking, or even breaking, get help. Fast. Whatever you have to do to get it, do it. You won’t be any good to anyone in pieces. That’s the bottom line. Even telling your story to someone who will actually listen to it can have a calming effect. Just knowing someone else gets it (I do!), might save you.
For anyone who doesn’t “get it” because they haven’t been there, but who might be reading this post, you probably know a Jane. Or a Sally, Theresa, Heather or Bill. If you aren’t a dementia care partner, but you know someone who is, please help them. Even a little. Even a little bit counts. Don’t tell them what to do, or sympathize or empathize or stand by doing nothing. Do something. Anything to help.
Thank you.
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My Alzheimer's Story 