Ever had a really bad cold? The kind that makes it impossible to sleep at night unless you’ve downed a bottle of NyQuil and are sitting upright? The kind that makes you swear you’ll never, ever again take your health for granted, if only you can breathe through your nose again and somehow save what used to be the skin on your lips?
What about being feeling trapped in your home due to inclement weather? Like, an unexpected 12 inches of snow overnight, followed by a week of temps just high enough to allow for daytime melting followed by overnight freezing, creating ice on top of snow?
How about sinking into a depression from what seems an endless parade of days of not feeling well, bad weather, cabin fever, low energy, lack of sunlight, poor eating habits, a to-do list longer than The Pillars of The Earth, and general overwhelm at the idea of moving from point A (your bed) to point B (the shower)? Ever been there?
Ever been through any (all) of this while being a dementia care partner, too?
There’s no nice way to say it: It sucks.
Depression is common in dementia care partners; seeking treatment isn’t. Yet the symptoms can be severe and chronic enough that it’s sometimes referred to as “caregiver dementia.”
We know that for people living with dementia, depression exacerbates symptoms of dementia. And in adults 65 or better without dementia, depression can make it appear like they do have dementia. We also know that depression (much like dementia, actually) is underdiagnosed and undertreated.
All this could add up to having two people in your home who are acting as though they’re living with dementia. Care partners are usually really good at making sure they don’t put themselves on the list, let alone the top of it.
If you’re experiencing feelings of depression or burnout, flirting with “caregiver dementia,” think about this: would you want your loved one caring for you? Are you really able to be your best you without seeking some type of help or changing something in your daily routine?
As a care partner, you’re the center of a vulnerable person’s universe. You’re the sun. You make the magic happen. You’re vital. You’re important. (Re-read and let that sink in, because you really are kind of a big deal!)
What would happen to your loved one if something happened to you? We don’t want to find out, right? Beyond the usual tips, here are a few other ideas to consider:
Double-check. If you’re unsure if any of this applies to you, use the Caregiver Burden Scale to see where you fall. No one is going to see it, so feel free to be really honest with yourself, rather than falling into the default mode of saying what you think you should or what others want to hear. The scoring key is at the bottom.
Write it down, burn it up. As a general rule, I really dislike facilitating support groups. But one group I absolutely loved, my favorite of all time, was a group that had a commitment to telling the unvarnished truth. “I wanted to smother her with a pillow!” or “Do you think it’s too late for a divorce? Because I really hate him this week.”
No one acted on any of these feelings, but saying them aloud was cathartic. If you don’t have a support group you can attend, you can still get your feelings out of your system. Write a letter and pour it all out. Say what you need to say. Then burn it or shred it. (That part’s cathartic, too.)
Eat away your feelings. Really! Improved mood is a benefit of the Mediterranean Diet. A new offshoot is the MIND Diet, which also improves mood, and lowers the risk of developing Alzheimer’s disease by up to 53%. Pretty good, right?
Reframe it. In cognitive reframing, you identify maladaptive or irrational thought patterns (I prefer to call them “unhelpful”) and replace them with something that works better. For example, let’s say your loved one is refusing to take a shower, no matter how nicely you ask if she wants one, or how many times you tell her she needs one.
Common reactions include thoughts like, “She always turns it into an argument,” or, “She won’t agree to anything,” or “I can’t seem to get her to do anything,” or, “She’s a pain in the butt!” or, “If she’d just admit she has dementia, everything would be so much easier!”
With cognitive reframing, you shift your perception to acknowledge facts such as:
- She has dementia, so the part of her brain that processes reason and logic is damaged. Reason and logic won’t work with her.
- She’s living with dementia, so she can’t remember she hasn’t showered.
- Olfactory receptors decrease with age and especially in Alzheimer’s disease, so she really can’t tell that she smells.
- The whole brain is under attack with dementia, so she has no idea she has dementia; she either forgot, or her brain is telling her everything is fine.
- At her age, skin is tissue-paper thin, so feeling water come out of a shower head could be painful for her.
The reframing allows you to see that–despite how it feels in the moment–this is about dementia, rather than you being targeted as a person who’s somehow deficient or wrong. It makes it way less personal.
Reach out. Help is all around. To quote our friend Cara Marcum of Piatt County Services for Seniors, “Just ask! It may be hard, but it’s important.” It can be as simple as hitting “reply” to this email.
You deserve to feel good. You’re the center of a vulnerable person’s universe. You’re the sun. You make the magic happen. You’re vital. You’re important. You really are kind of a big deal! And I am cheering you on every single step of the way.
Christy Turner is the founder of DementiaSherpa.com and has enjoyed the privilege of working with 1,123 people living with dementia and their families. Follow on Facebook, Google+, Instagram, Pinterest, Twitter, and YouTube. Content varies across platforms.