Caring for Our Caregivers

Posted by Dr. Dan Gottlieb in Life After Paralysis on September 12, 2017 # Health, Caregiving

I received an email from a middle-aged woman who was the primary caregiver for her husband of 28 years. He had developed a progressive neurological disease and had been bedridden for over 10 years.

She concluded her letter by saying: “Although I am responsible for most of his medical care, I don't resent taking care of him. But I do feel exhausted all the time. Between bathing, dressing, feeding, and various medical procedures, there is just no time for me.

Even though my husband is my best friend, I sometimes just want to run away. When I feel this way, I feel terribly guilty. Is there any way to carve out some time for me without guilt?”

Depleted wife and caregiver

Dear depleted:

The complaint I hear most from family caregivers is exhaustion.

The exhaustion care givers in your position generally feel comes not just from your physical chores, but all of the emotions you carry inside. I’ll bet you haven’t even had time to deal with the progressive loss of your best friend.

And that guilt! In my experience, both spouses feel guilty. You feel guilty about normal human feelings and he probably feels guilty because of what this is putting you through.

Where can you do about that guilt? You could forgive yourself for simply being human and needing respite. You could also check in with your husband to see how he feels about your getting some time for yourself.

That simple act of seeking support from your husband may help both of your guilt. It may help your husband feel empowered and less of a drain if he supported you in getting respite.

The quality of all our lives is diminished when we are put exclusively in the role of care giver or caretaker. Those of us who "take" care, benefit from giving care so that we can feel more whole. In the same way, those of you who "give" care can ask for some understanding and kindness from those you take care of. And no matter what, you must take some of that kindness and compassion and turn it towards yourself.

Something happened to me many years ago that may help explain this role reversal.

I went to what was called The Family Institute of Philadelphia one evening to give a lecture. I parked in a nearby parking lot that was across the glass strewn street of the building.

When I got out, I looked up and down the street for a curb cut or driveway so I could cross safely. A homeless man had seen what I was doing and approached me to help. When I explained my dilemma, he pointed out a curb cut on my side of the street. I explained I saw that one but I couldn’t find one on the other side.

"I see where I can get off of this side, but I'm trying to cross the street and I don't see a curb cut on the other side," I said.

With that he walked further down the street looking on the other side. In a few moments he hollered, "There's one down here; you can cross here." I thanked him and told him I would be right there.

When I found the driveway he had discovered, he offered to help, but I thought I would be fine. But as I got closer, however, it looked uneven and I felt unsafe. So I turned back and asked if he could please just stand by me to make sure my chair was stable.

He gladly helped, and the two of us wound up in front of the building. He offered to go up the steps to find someone to help me up the ramp on the side of the building. I said this time I really could do it myself.

As we parted ways, we both thanked each other. After he got about 15 feet away, he turned slowly and without making eye contact said, "You wouldn't happen to have . . . could you help me with . . .?"

"Of course," I replied, angry at myself for not thinking of it on my own. I reached for my wallet and fumbled to get a few dollars out. At this point the parking lot attendant across the street saw what was happening and came over to ask, "Is that man bothering you?"

"No, I said; " we were just giving each other a hand."

After a few moments, he helped me get some money out of my wallet. Then, we looked in each other’s eyes and thanked one another. Caregiver? Caretaker? Just two humans giving each other a hand.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.