Debbie, my wife of eighteen months and suddenly, my caregiver when I had my stroke eighteen years ago quickly realized that life cannot completely revolve around me, the survivor. She had a career and while she certainly wanted me to recover she was not in a position financially or mentally to go full-time caregiver. Still this was all a big shock for her! Speaking with some friends, she came to realize that it’s not healthy or productive to devote her entire being to be my caregiver, even if she could have. There is such a thing as, caregiver burnout.
So how did she avoid it? First and foremost, she maintained her outside activities. Debbie continued to teach school and even kept teaching her Adult Education women’s exercise class several evenings a week. She commented to me, “I highly recommend that whether others are working or not to keep your interests and activities up. If you are working there isn’t much choice but if you normally work out, keep doing it. If you are involved in a charity, keep at it and if you like to go out to lunch, do that too, and don’t feel guilty. You have to live too!”
But she did have a frank talk with her Principal so that she knew that there would be occasions when she would need some support and leniency with time. In this manner she would not have to worry about taking a few hours off to make calls, or whatever. There was enough stress anyway. This way if she had to make calls during the work day it could be accommodated as long as she got coverage for her class.
One of those occasions occurred about two weeks after I had my stroke and the hospital suddenly announced that I was being discharged in two days. Without warning Debbie had to run around to find a facility for me. She visited seven facilities in one day to hopefully find the right one. She never did that before!
Writing my book, I did some research about caregiver burnout. For example, I found a study in Stroke Connection, the American Heart Association publication. The study noted:
- That “older, active and confident caregivers were the happiest;”
- Being and staying in better physical health was important to avoid burnout;
- And continuing with hobbies and activities as Debbie did was most helpful to caregiver well being.
Of course, Debbie was stressed as I said before. Interestingly I found a study out of Northwestern Medicine which addressed this issue –
And I was surprised with the writer’s conclusion –
The greatest amount of stress emanated not from the patient, but rather from friends and relatives. Relatives and friends often showed, “a lack of understanding and help” according to the study. I guess they thought they were being helpful, but they weren’t. And if that isn’t clipped in the bud, that will “get old” also and lead to burnout.
I thought to myself,
This phenomenon actually could be a threat to the caregiver’s own well-being. Debbie said that though she fortunately didn’t experience that stress but she met others who had. The stress came from second guessing which can often be very emotional and destructive. You know the deal. You do something or decide which doesn’t work out so well, and all the naysayers come in and say, “I told you so”. That kind of stuff get’s old fast and can lead to burnout.
And finally, family financial tensions, we had two kids in college, actually my kids. They and their mother wanted to know about money. Were their college careers secure? So, there was more stress. And you wonder why Debbie could not stop teaching? All, less than constructive! And with it, possible burnout, or disgust!
Hail the caregiver and give them support, not aggravation!