“Knockin’ On Heaven’s Door”
September 16th, 2006
Only over the past couple of months have I understood what is meant by “caregiver’s burnout.” Waking up each morning with a sick feeling in the pit of my stomach, going to bed at night with a head full of circling obligations and regrets. Catching myself in the middle of the rare pleasant experience and thinking, “Whoa. Not so fast–don’t get TOO relaxed…” Envying the person ahead of me in line at Target because I imagine that she lives the kind of trouble-free life I don’t have. What’s funny about the last statement is my knowing that no one actually has such a life–a couple of months ago I was waiting in line at Dunkin’ Donuts and ahead of me was a man I’d gone to grammar school with, many years before. I almost spoke to him but before I got up the nerve, he’d gotten his coffee and was gone. And then this past week I saw his mother’s obituary in the local paper: she had had Alzheimer’s Disease.
But part of the power of such intense, jagged, fear-ridden experiences as caring for someone with AD is the black-hole effect. Everything around you gets sucked in, everything else is somehow related to your troubles and assumes their nature. Even the relatively minor headaches–the car muffler coming loose or losing the brand new book of stamps you just bought–become “And now–THIS!!” moments. Reverberations of the primary heartbreak as it pounds away at you.
Months ago I’d bought tickets to see Bob Dylan perform locally. As the concert approached I became anxious–I couldn’t pull myself out of my tight little orbit. First of all, I’d have to arrange for someone to spend the evening with my mother–otherwise, I’d never be able to relax. And then I’d have to take responsibility for my friends’ evening–if I bailed out or had to leave early, I’d be spoiling the experience for them, too. Then I realized that the worst-case scenario would be if I actually began to have a good time and then had to face the wake-up call of reality. So I sold the tickets. As the Man himself says, “You Ain’t Goin’ Nowhere”…
Shadows are falling and I’ve been here all day
It’s too hot to sleep time is running away
Feel like my soul has turned into steel
I’ve still got the scars that the sun didn’t heal
There’s not even room enough to be anywhere
It’s not dark yet, but it’s getting thereBob Dylan, “Not Dark Yet” from “Time Out of Mind”
September 16th, 2006 at 3:18 pm
Just wanted to say, shaking head, closing eyes. I suspect that saying, “I know” is rather like those blinded by the black hole leading those blinded by the black hole.
September 17th, 2006 at 6:08 am
A friend of mine once said, “If you don’t take care of yourself, you’re no good to the people that really need you.”
I think that “taking care” of yourself can be a concert or a night out to a restaurant.
Life can’t end because a loved one is suffering from AD and we’re responsible.
It is hard to break out of the day to day monotony but you must try. I hated to see that you sold the tickets. I think it would have done your soul a world of good.
Maybe you could pick up a Dylan concert DVD…
Make some popcorn and turn off the phone for an hour or so. It’s these little moments that have the ability to make a stressful caregiving situation a bit easier to bear allowing us to go on.
Hang in there and at least go listen to some Dylan.
~m
September 17th, 2006 at 5:16 pm
Deb,
Even though I’m not a caregiver, I think I understand. In the end, you just made the concert a non-issue. But Michael’s right, I think, you need to do something good for yourself.
The black hole effect extends further than you think - sometimes I feel guilty that I’m NOT a caregiver!
September 17th, 2006 at 11:09 pm
I completely understand. I don’t think that it is possible to not burn out if you don’t have regular time for yourself. I think that its easy to get stuck in a cycle of not having time at all for yourself when you’re responsible for someone with Alzheimer’s, but there must be some way. You deserve to be able to go to a concert and just enjoy yourself for one night!
September 19th, 2006 at 10:48 am
I fully understand the why of your feeling so burned out but at the same time, I realize that the ramifications of this burn out are very detrimental.. especially to you. I can appreciate how difficult your situation is but if you become to wrapped up in your care giving you will lose who you are. My advise.. and please understand that I offer these words because I am concerned.. next time.. buy the tickets and go to the concert. Even if the good feeling last only an hour.. it is still a mindful reprieve from your everyday realities. Your soul needs this. Being a nurse.. my life has been devoted to care giving. Along the way I have learned that the care givers must look after themselves first.
September 20th, 2006 at 8:42 am
It’s hard to look after yourself. You are not your own priority, and I’m all too familiar with that. AND I see my mom doing the same thing, because she wants to see grandma everyday. She likes to travel, but always makes preparations for me and her sisters to go check on grandma everyday because she worries so much when she’s away. But she’s 68 (my father passed away 16 years ago) and she needs to enjoy her life. It’s a vicious circle.
October 2nd, 2006 at 7:04 pm
The black hole sucks everything. Just stopping by to let you know that I’m still here - swimming in the black hole.