I was recently chatting with a friend of mine on facebook and I asked her what it was like to be the caregiver for her mother after her father died. She told me that, because of the physical distance, most of that fell to her sister, Gail. She very kindly reintroduced me to her sister and, again on facebook, I chatted with her.
The first principle that Gail told me a caregiver might need survive is the mindset that “It is what it is-”. “There may not be a cause, there may not be a cure, and there may not be any control over the PROBLEM.” As I pondered that I realized she probably was right. First, you need to care. Second, you have to show up and be there for the person. And third, you don’t get paralysed by the circumstances but find ways to listen, hear what their needs are, and do something. It really is not about fixing a problem.
One of the hardest things for Gail was she was taking care of Momma and Momma was used to being in-charge even when she was unsuccessfully trying to hide the fact that she was tanking. To loosen the Momma bond Gail began calling her mother by her first name and that seemed to help. Gail said, “She began to accept it and we got closer that way.”
As Gail began to tell me her backstory I found that my first ‘pondering’ was right; you have to care. Gail had been a hellraiser when she was younger and saw this as the only chance she had to make amends. She didn’t want to have any regrets when her mother finally passed so she was determined make things right no matter how long it took. So she did what I suppose we would all like to do; she spoiled her. To take her, or give her or do for her whatsoever she wanted. But when one gets this close there is bound to be some chafing. There were outbursts of anger at her and for that she went to a therapist.
Gail’s strategy was to smooth the way and try to give her mother as much dignity as possible. She would cut her food and put it on her folk (to compensate for her motor skill deficit) but allow her to put the folk in her own mouth. She found other ways to assist, too, as with crafts. She would dip the brush and hand it to her mother. Then she would hold and turn the ceramic piece and let her ‘paint’ on the glaze. She was continually finding ways to keep her mother included and active and prevent her from slowing down or feeling self pity. The key was to listen to her needs and desires and come up with ways to help her help herself.
Gail recounted how, in the beginning, caregiving took virtually all of her time. She recalls her mother being very needy and would beg her not to go. That was really tough. Still, it was important to wean her off of full time involvement. Fortunately there were enough resources to afford skilled nursing care in a continuing care facility. She explained that there is usually a team working with each case. The team where her mother was could include a social worker, physical therapist, cognitive(occupational) therapist, nurses, pastor and maybe a behavioral therapist. Having a rapport with the staff, and developing trust, were instrumental. They handled most of the small stuff like the activities of daily living. She remembers, “I… got great feedback from the nursing staff-- the aides were exceptional.” What also helped was using a whiteboard. “I had a white board with the date, weather, my phone number, and maybe what we did together recently.” Using this as a calendar, too, she could also mark which days she would be visiting. This became more important as short term memory issues increased.
Then I asked Gail, “If you had a magic wand what would you have conjured up to help you?” and to that she answered, “Infinite patience.” I was quiet for a moment as I considered how she wasn’t asking for a miracle drug, or more time, or some kind of change in her mother. She only wanted a change in herself.
Last I asked her, “If you had a crystal ball what would you have wanted to see awaiting you and your momma down the road to help prepare you?”
“I was blessed in that, too.” she said. “Fifteen years in head injury rehab and long term care, then five years in long-term acute care…”
Her career and having experienced many “end of life” scenarios had certainly prepared her. In the end I don’t think there were any regrets. Gail had faced her own fears of being alive but a vegetable or be deprived of all ability but still cognizant. She even shared with me what she had considered for her own epitaph, "Wait! I'm not ready!" or "It was fun while it lasted, but I gotta bounce!"I shared with her my favorite line from author Martin Bell, “If one can no longer cling to the mountain then they should celebrate the fall.” “Zactly”, she agreed. “I saw my job as caregiver to Mom as a chance to give her the best life she could have before she inevitably died.”
I think she succeeded.