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This is the truth of my caregiver burnout. Hard to recognize, harder to solve, and impossible to run from. It is frightening, lonesome, ugly and all mine.

The world around me continues to move along but I am defeated. Mentally and physically defeated, unable to muster the required effort to complete even the most simple (if not mundane) tasks required of me–never mind a task that requires undivided attention, critical thinking, and creativity to complete. I’m a prisoner of my own thoughts and paralyzed by my own perceived ineptitude.

Returning a phone call seems as daunting as running the Boston Marathon. Paying Mom’s bills (even from the comfort of my couch) feels as intimidating as swimming the English Channel. Answering the same question from Mom for the nineteenth time makes me close my eyes and cringe.

My patience are extinct and my bank of compassion is closed. Hope seems a world away and any feeling of accomplishment is incomprehensible. The phone lines between me and the outside world have been snipped, leaving me absent from the world but not sad.

I’d rather be sad. At least sadness can be felt. This is the truth of my caregiver burnout.

Frightening

It is frightening to me for a few distinct reasons.

1. My burnout tends to come out of nowhere. I’m getting better at seeing and feeling the signs, but it still creeps up on me. Running on adrenaline, for better or for worse, is a big part of my caregiver M.O. After all, there are still only twenty-four hours in a day and now I have another life to manage on top of my own. Adrenaline to the rescue is my default way of thinking– I can do it all. Until I can’t and wake up physically defeated and emotionally absent.
2. The first time it happened, I didn’t know what to do. I was helpless. It seems obvious when you’re removed from the situation, but it’s much less so when you’re in the midst of it. I knew I needed help, but didn’t know how or couldn’t find the courage to ask for the help. Helpless.
3. I knew I was no help to Mom or Lindsay or Steve or the kids in that state. I was stuck in some horror movie, hit with a tranquilizer dart and left devoid of the ability to move or feel, but left conscious enough to know what was happening. Conscious enough to watch the aftermath of my defeat.

Frightening covers it all pretty well.

Lonesome

For me, the absenteeism breeds loneliness. It feels as if I’m cut off from the world around me, like my own personal version of solitary confinement. A prisoner convicted of failure and left alone with my own thoughts–none of which are good. And this subconsciously self-imposed isolation is crazy powerful.

I know because Lindsay and I are walking our respective caregiving journeys together. Our experiences are unique in comparison to the other for lots of reasons (i.e. Lewy Body Dementia vs. Alzheimer’s, Assisted Living vs. living in our home, one is more advanced than the other)–but there’s a ton that’s similar. What better support system could I ask for? Yet there is no running from it. When it hits, it’s too late.

When it comes to my burnout, loneliness and self-pity rule the day.

Ugly

Guilt rushes in when I’m frozen by caregiver burnout. The feelings of guilt and the self loathing that comes with them are completely at odds with what my non-burned out self knows to be true. I love Mom with every ounce of my being, there’s nothing I want more than to support her so she can live her best life, and I’m doing the absolute best that I can in that pursuit.

Still I’m crushed under the weight of expectations, buckled under her never ending need for support, ashamed that I just want to quit, and gutted by the realization of it all. When it’s all packaged up, it is pure ugliness coursing through my veins.

Sliver of good news

The first time I experienced it, it was a feeling unlike anything I’d ever experienced–the definition of ugly. Because I was letting Mom down. She didn’t know it and definitely didn’t say it, but I felt it. This is the truth of my caregiver burnout.

Don’t think I’ll ever be able out run it but there is some good news. It is temporary. Better yet, we can protect ourselves from it to soften the blow. Here are six things I’ve learned and wish I took to heart from the start.

6 tips

Know that caregiver burnout is real and that it does not discriminate.

I was told to be careful about it–but pooh-poohed it. Won’t happen to me I thought. I love Mom too much I thought. I was naive in my thinking and paid the price. Being able to protect yourself from it starts with believing it.

Keep doing things that make you happy.

Purposely carve out time to do them and guard that time fiercely. Sure your schedule won’t be like it was before you took on these new responsibilities, but you can, and need to make time for yourself. It won’t be like it was before, but it will be something. And something is better than nothing, especially in this case. Walking the dog, fishing, hiking, riding your bike, going to the beach, hanging with friends–whatever your thing is, keep doing it.

Get. Your. Rest.

Risking being Captain Obvious here but this one was huge (and tricky) for me. It was particularly hard for me to go to bed when I was so starved for free time but the only free time I had in a given day never came before 10pm. My “I can sleep when I’m dead” line of thinking worked when I was a twenty something- it even worked when we had infants, but it didn’t work for me as a caregiver. It hurt me. A lot. If I was starting again, I’d learn to see sleep as a key to me being the best caregiver, husband, parent, co-worker, and friend I can be.

Exercise

If your pre-caregiving self didn’t exercise, start. If you regularly exercised before adding caregiver to your resume, keep doing it (see number two above). I (knock on wood) haven’t experienced physical symptoms as part of my caregiver burnout, but lots of people do. And whether you like it or not, regular exercise is good for the mind, body, and soul.

Treasure Your Tribe

They treasure you but sometimes won’t know what to say or what to ask or how to help. Talk, don’t shut down. Some will drift away but those that matter won’t. And if you don’t have a tribe, there are great resources out there. Online–there are great caregiving sites filled with compassionate and empathetic people who are or have lived through similar challenges. Offline, go to your local Council on Aging or senior center and inquire about resources. Even if you have a tribe of wonderfully caring, supportive and helpful family and friends, still use these resources. Do it from the start. Make it part of your routine–it will be added insulation against the tough times when they come. And they will come.

Believe in Yourself

Always. You are doing the best you can. Believe that and believe that everything else that isn’t supportive and helpful to you is just noise.

The truth of my caregiver burnout is indeed ugly. Frightening and lonely too. But with each bout of burnout, I get better at handling it. And I’m not as helpless.

Can you relate?

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