Unforgettable

I want to talk about caregiver burn-out, because it’s rarely discussed in society, not addressed by health care professionals, and – aside from support groups set up for that purpose – not something easily shared. I know I’ve covered this topic before, but it looms large.

Most family caregivers feel like failures. We are thrown into the role with no training, very little support, and a big question mark hanging over our heads every day. We become caregivers because we want our loved ones to suffer less. We want to help them navigate the challenges of dementia with as much ease as possible. We start with the best of intentions and a grand feeling of solidarity. And then, as time goes on, we find ourselves yelling at them, or snapping with impatience, or holding it all in and coming home to collapse with unreleased tension. And then we beat ourselves up, because it’s not their fault, it’s not our fault, there’s no room for blame or shame, and yet we still feel like we’re not doing the best we can.

It’s a very unhealthy dynamic. People who have never been caregivers cannot be expected to understand, and yet it’s crucial that we make society aware of what is now being called a “caregiver crisis.” The system is so broken that family caregivers have become the glue holding everything together, but not getting any recognition or assistance even though we’re all screaming for it. No one is listening. And it’s not going to get better any time soon, since governments and the health care system are stagnant with indecision.

It’s alarming that we are now normalizing burn-out. Sometimes in an effort to expose a situation, we end up normalizing it. That seems to be what’s happening with caregiver burn-out. A ton of articles, a lot of discussion, but no real solutions. WebMD has a good article on caregiver burnout; it’s helpful in identifying what most of us already know. We’re overworked, overwhelmed and overwrought. But it’s being presented clinically, as if it’s just one more thing we have to manage. As if it’s inevitable. As if it’s just part of what to expect. And this feels wrong.

The last thing we need is caregivers ending up in the hospital themselves, or spending the rest of their lives isolated and depressed because we never acknowledged their needs or their despair. That would be a double tragedy.

I know of a woman who is caring for her mother and very quickly becoming an invalid herself. When she chose to move in with her mother, she had no idea that it would become a living nightmare. Her mother is an aging alcoholic who suffers from cancer. She is incredibly demanding, selfish, unappreciative, and a miserable person to be around. She threatens her daughter all the time with suicide – I’ll kill myself if you leave! Their financial situation is dire, the daughter’s health (physical and mental) is declining to the point that she has become extremely overweight, is drinking herself into oblivion, has been diagnosed with diabetes and is having difficulty walking. Whoa. 

Give yourself permission to be burnt-out, but don’t let it take over. And if you’re reading this and feeling weepy, then yes, I’m talking to you. Because if you don’t take care of yourself, you’re of no use to anyone else.

Cry, baby, cry. Just remember that you are a very special person, with an amazing heart and soul, and you have the right to be happy and healthy, just like everyone else.

“There’s nothing [ in terms of training ] and from day one, everyone sort of expects so much of us as carers. They expect that we can do the job, and they expect that we can do the job well, and they expect that we can be kind and nice, and totally 24 hours a day caring. We’re human, it doesn’t work that way, the stress and the anxiety.”
– Ms Irene Jacobs, Caregiver, Australia