The Imperfect Caregiver

“How are things going with Rodger?”
“Fine.”

“It must be hard.”
“It’s fine.”

Are you taking care of yourself?”
“I’m fine.”

“How is Mike dealing with all this?”
“He’s fine.”

“Do the two of you get any time away?”
“No, but we’re fine.”

So often when questioned by people, even the most well-meaning, Caregivers say they are fine. It’s time to stop. FINE is not an answer. It’s what we say when the person asking has no real interest in the answer or has already proven that they are too busy, too disconnected, or too frightened to deal with what’s happening.

Saying we are fine when we are not is a social norm that works most of the time. Why bore someone with details of our life when they are busy with their own problems and they only ask about ours to be polite?

How often do we greet friends or acquaintances with the words, “Hello, how are you?” Both parties know full well that we aren’t asking for details and the proper response is, “I’m fine. How are you?”

As a caregiver I was guilty of saying it all the time. When I was so sleep deprived I could barely function I carried on trying to convince everyone, including myself, that I was fine and I’d sleep when the latest crisis had passed. When month after month of stress took a toll and triggered a panic attack, I breathed through it and went on. “I’m fine now,” I’d say once it was over. After a terrible argument with my husband, brought on by the same lack of sleep and buildup of stress, we patched things up and promised not to let it get to us again. We had a solid, loving marriage and we were simply going through a rough patch that would not last forever. We were fine.

Rodger was declining and his need for care was increasing all the time.
Being a caregiver was very hard.
I was not taking care of myself and the stress was taking a big toll on me.
Mike was not fine no matter how hard he tried to pretend he was.
We needed time away and would have given anything for someone to take over even for one day.

I wonder what would have happened if I had responded truthfully.

“How are things going with Rodger?”
“Not good. He is getting weaker all the time. He hates being dependent and it makes him angry. He takes it out on me.”

“It must be hard.”
“It’s very hard. I feel very alone most of the time. I miss spending time with my friends and the people I used to work with.”

“Are you taking care of yourself?
“There’s no time for that. I had to cancel my last three doctor appointments to rush Rodger to the hospital when one of his illnesses worsened. Most days I eat on the run and shower so fast I barely get wet before I have to dry off and tend to his needs.”

“How is Mike dealing with all this?”
“He is doing the best he can to be there for both Rodger and me and go to work every day. On the weekends he does all the shopping and runs all the errands that need to be done. He helps with Rodger in the evenings. There is no rest for him either.”

“Do the two of you get any time away?
“No. We need a rest but we don’t know where to turn for help.”

Would anyone have offered help and a bit of respite if I had not kept reassuring people that I was fine? I will never know. You can find out. If anyone asks how things are going, I hope you remember that fine is not an answer and give them a chance to respond to the truth. I’ll be very interested in learning how it goes.

Note: Caregivers with little or no outside support often suffer from depression. Click here to read an article about caregiver depression at Caregiver.com, Coping with Depression: Signs You Might be in Trouble