caregiving, life skills

Caregiving as Couples Therapy

I was my late husband’s caregiver for 53 ½ weeks after he had a massive stroke. He was paralyzed on the left side and had a condition called left neglect in which his brain didn’t process anything that happened to the left of his midline. The left neglect impacted his vision, hearing, and attention, so he often didn’t process sounds that originated to his left, even though his hearing was fine. If a person he was talking to moved to his left, it seemed to him that the person had simply disappeared.

I had to help him with everything from dressing and walking to toileting. I had to manage his medications, remind of things his injured brain couldn’t retain, and do all the cooking, cleaning, and laundry. (I admit I let much of the cleaning slide.) It was a lot of work, but I miss those days tremendously.  

Caregiving gave us the opportunity to get to know each other in new ways. His stroke and my becoming his caregiver were unexpected and not something we would have wished for, but we both agreed that our relationship changed for the better because of it.

We got a glimpse of this the year before his stroke, when my vision worsened to the point where I could no longer drive. I took the bus to work, but my husband began driving me to the grocery store for my weekly trip there. The plan was for him to wait in his van while I shopped, but when we got there the first time, he said, “I better come with you to make sure you’re doing it right.”

We ended up having fun—he asked questions about why I bought the brands I bought (I usually have strong opinions about food), he tried to sneak all sorts of things I would never buy into the cart (the very worst flavors of Pringles, for example), and he made it look like there were stairs to a secret basement in the produce section. His antics that day got him tailed around the store by the security guard.

We laughed so much that we did all the grocery shopping together after that, but typically without catching the security guard’s attention. Neither of us wanted me to lose the ability to drive, but the shift in our relationship meant a little more time together. A tedious chore became a time to enjoy each other’s company.

That realization helped us understand that when I became his caregiver, we would need to continue enjoying each other’s company. A caregiver and care-recipient have to spend a lot of time together and if it’s not pleasant time, caregiving becomes a chore and care-receiving becomes an indignity. Both caregiver and care-recipient have to work at the relationship to make it a partnership.

One thing we did that made caregiving feel like a partnership was talk to each other while I was helping him with something. We simply said to each other what we were doing. If I was helping him transfer from the bed to his wheelchair, he might say, “I’m going to count to three and then you’re going to sling my ass from the bed to the wheelchair.” I would repeat that back to him, adding, “First I’m going to confirm that the brakes are on.” We would wink at each other after we had a plan. It helped us stay on the same page, but it also gave us a chance to be silly and loving.

Another thing we did was to constantly express our admiration and appreciation for each other. We both recognized that the other one was working hard, even when things didn’t go as planned. When he fell while walking across the dining room and it took us an hour to get him up again, I told him how much I appreciated the effort he was putting into walking with his hemi-walker and he expressed his appreciation for my patience. We both reassured each other that we would eventually get him up.

Because I needed to be available to him at all times, we got really good at telling each other what we needed. When I got frustrated, I couldn’t just walk away and leave him alone because he needed me for so much. When he got frustrated, he couldn’t leave without me helping him. We learned to say to each other, “I need to take a few minutes to collect my thoughts” or “I need a few minutes to myself.”

Of course we both had moments of crankiness, being short-tempered, and the like, but we also became quick to apologize. We were both angry at the stroke, not at each other.

I wish I could have learned these lessons in communication, patience, appreciation, and compassion sooner and in some other way, but I am grateful that my husband and I got to do that growing together.