I sat in the parlor of our church listening and talking, mostly listening to the stories of the other family caregivers. We had gathered together to talk, to listen, to think, to find ways to help those who were providing care for loved ones.
There were women who had seen fathers and husbands through the worst of dementia, who had cared for them as they slowly passed. There was a wife and daughter of a husband and father who had moved to a care facility. There was the wife who was just really starting on her care giving journey as her husband was slowly but surely needing more and more help. There was the niece who had willingly taken on the job of caring for her aunt and there was me.
Everyone had unique stories, unique but the same in so many ways. As I listened to them talk of the fears, the worries, the fatigue it all sounded so familiar, spoken by different people at different stages of life, all in the same storm.
We talked about health care, embarrassment, ignorance, unknowns, fear, patience, and love. Each of these people, as they spoke, as the tears came, did not have to profess their love for their spouse, father or aunt, it was assumed, the love, the respect, the loyalty was lived through their dedication and actions.
The stories were poignant, especially as some in the room talked of coming to the decision they were no longer able to care for their loved one alone, at home. Those painful decisions, to move their husbands to a care facility, were largely made out of the need for survival for both the caregiver and their charge. You could tell those decisions were painful; the women felt they had not made the best decision, but the only decision remaining.
That’s the real conundrum of caring for people with long term, descending ailments, there are no good decisions, there are no right decisions, and inevitably you end up making the only decisions and those decisions invariably kind of suck. Making those kinds of life altering decisions is one of the most stressful, heart wrenching parts of care giving.
Then we talked about the loneliness. Maybe lonely isn’t the right word, it’s really more of a feeling of isolation from the normal ebb and flow of life. When you work, when you fully participate in the life flowing in the outside world, you are part of the world, part of the community, experiencing the rhythm of life. When your life revolves just around what’s inside your home, what’s inside a nursing facility you don’t experience life in a normal way, you are set aside, you are isolated.
So many of my own relationships revolved around work and Marty was the social secretary in our house, she was the one in charge of most of our outside experiences. All of that went away when I quit working and Marty had the strokes. I have been beached, out of the ebb and flow.
After the strokes, after we came home for the last time, everything became about Marty, about her recovery, about what happened behind the walls of our house. The walls then become something of a fortress, you forget about what’s outside, I only saw the outside through the perspective of how it will affect the person I was most responsible for, Marty.
Remarkably I don’t resent any of that. I’m as surprised by that as anyone, I’m not the self-sacrificing type. I’m selfishly doing what I was called to do; I’m doing, regardless of the repercussions, the most decent thing I’ve ever done and frankly I’m proud of that.
I think everyone in the room that evening would agree with that. From the daughter to the aunt to the spouses, I suspect they all confront the pain of their families’ illness every day. Those that have lost people, still deal with the ramifications of those tragedies every day of their lives as they try to re-establish themselves in that rhythm of outside life.
The talk helps; the communion of these souls satisfies a part of my being. There are no answers to most of the issues, most of the issues are part of the more unseemly part of life that some of us face too early in our lives, some face for too long, same face too often.
I hope we bring this group back together in the future, not to look for answers, not to bitch or wax nostalgic, but to simply share the lives we have in common. That’s what so many living more normal lives do every day.