Reinventing Rituals

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Alzheimer's ...for caregivers

Reinventing Rituals©

I spent most of my adult life living in New York City, and although I grew up in Syracuse, New York, an area surrounded by rich farm land and apple orchards, I lived what could only be described as an urban life. However, I also lived a life in which neighbors cared about neighbors and my extended family of aunts and uncles and cousins, (the numbers of whom accounted for a large portion of Syracuse's population,) were a family that responded to each other's needs. I had the good fortune to see all my grandparents die in their own beds. I had the good fortune to see my family gather together to celebrate both life and death, enriching rituals that helped form my attitudes towards the trials I would someday face as an adult.

When I hear people talking about "the good old days when life was simpler," I have to wonder if this generation has any real idea of what the 'good ole' days' were all about. I suspect they have some wistful fantasy of a life of simple pleasures and less strife without any concept of the work it took to survive in a world with fewer options and more restrictions and obligations. Living in the 30's and 40's and 50's wasn't easy for anyone. Living in that time took a lot of emotional strength and physical fortitude and then there was the depression to contend with. Even though I missed the depression by being born in 1940, the effects of it were imbedded in my cellular makeup, because everyone older than I hadn't missed it. The reality is that what was better in the 'good ole' days' had more to do with the bond we all felt toward family members than anything else. Good, bad, or ugly, family was family and community meant something besides a geographic designation.

We have grown away from that bond since then. Our fear of death has played a large part in that separation. Death has become sterilized and we have been carefully taught to avoid dealing with that negative fearsome aspect of the life cycle to the point of paranoia. We have also been carefully taught that once someone looses their thinking ability we not only have the right to place them in the care of others, we almost have an obligation to do so, and I am still hard pressed to find any official document that describes Alzheimer's that doesn't refer to the inevitable institutionalization of our people, even though the lion's share of care is still done in the home, usually by one other person ,and countless families maintain their people until they die. Our people earn the distinction of becoming the walking dead as soon as the diagnosis is laid upon them. Add to that the inherent avoidance of all things dealing with death and we a have group ripe for exclusion from society.

We caregivers aren't only encouraged to cut them loose, we are even handed justification for doing so; we're busy, we have lives, we have other obligations and besides they don't even know who we are. Their care is referred to as a burden, our caregiving described as co-dependent behavior, and every one wants us to get on with our lives. Our people's feelings don't matter, because, they don't even know who we are.

In 1995, some months before Tom died, I heard John Compton, a native gentleman from the Lakota Nation, speak at the White House Conference on Aging. What he had to say put words to the feelings I was having about my care experience with my husband. I had been a reluctant caregiver, as reluctant as any of us facing this disease. I had wrestled with my demons, but by the time The White House Conference happened, I had spent almost 10 years dealing with this disease and had come to a different place. I had long since stopped seeing my care of Tom as burdensome. This is not to say the care was easy, it wasn't by a long shot, but I found it was doable and I found a deep sense of myself and my own growth as a result of being able to do it.

And Tom mattered, his comfort mattered, and most of all his desire to be in his own home mattered, to me. While every other speaker at the conference spoke of the burden associated with elder care in general, John did not. He was the only speaker at any of the meetings I attended, to address the human needs of our elders, frail, and dependent, and the human quality and positive nature of giving them care. And he put it into words that left the listening audience so quiet you could hear a pin drop.

He spoke of the need for all of us to rediscover our tribal connections. He pointed out that if all of us go far enough back, to the ancients, all of us come from tribal peoples. And as tribal people we learned that the rituals of life were important. Ritual gave us parameters of behavior, security in our relationships with each other, and confidence in the path we all travel as human beings. He said that we still have the capacity to see the tasks we are asked to perform in life as rituals, and he offered the story of a young man he knew in his tribe as an example of what he was trying to impart.

"This young man found himself working near one of the elder's in his community. On an impulse, he stopped at her home to say hello and to see how she was. It was truly an impulsive act because he hadn't had contact with her in years. This elder whom he called 'grandmother', as did many in his community, was surprised to see him poke his head in the door. And in response to his question about her health and needs, she answered that she was all right, she didn't need anything, but would he like to share a cup of tea. The young man agreed.
The next day, at the same time in the afternoon, he felt the same urge to check in on her, and again she told him she was all right and offered tea. The visits developed into a ritual, and during those visits he noticed things: He noticed how she was, and if food was in the refrigerator, and sometimes he just took care of things, and on occasion she would ask for his help. Before long everyone in his community recognized this relationship and respected it to the point where even his job accepted his afternoon 'visits.' He often had to make up the work he missed."

Those of us listening to this story recognized a parable when we heard one. John wasn't telling us to literally do as this young man did, but he did offer a new way of looking at negative attitudes that have attached themselves to the tasks inherent in the care of our elderly frail. He concluded by saying...

"Now... when you have to give up your Saturdays to help mom buy groceries because she can no longer drive, or take time to stay with Dad, so that Mom can get a break, or move a forgetful parent across country to live with you, perhaps you can learn to see those tasks as a ritual, as a beneficent gift that is given freely and lovingly instead of a task that must be done, and one that takes time out of your already very busy life. That is the nature of becoming tribal. That is the nature of rediscovering rituals. That is the nature of being part of the world that surrounds us all."

I had become very disillusioned with the rhetoric that surrounds this disease and somewhat dismayed at the response I received as Tom's caregiver, feelings that only increased as the years since Tom's death passed. As other caregivers contact me about their stories I realize that rhetoric is nothing but meaningless words. All of us have the capacity to reach deep and discard the junk we've been programmed to believe as truth. I believe that caregiving is a demonstration that tribal affiliation is not only alive it is the natural gut reaction we all have to rise to the occasion on the behalf of others in time of crises.

Getting back in touch with the rituals of life is a positive way to face the journey that Alzheimer's presents. It allows us to step out of despair and into action and acceptance and love and that can only be a good thing.

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