In my experience there are two main reasons why care-givers feel isolated and on their own. The first is not admitting the need for help. A female care-giver feels she should be the one to handle everything and she's not really sure how to get the help she needs and it's difficult to ask for help. The second roadblock is the plain old lack of awareness from the people around us. How many people know what it feels like to be around someone with Alzheimer's for more than an hour? How many of your friends know what it feels like to have a person in their home who has full blown dementia? The most understanding the average person has is from their once a year visit to a nursing home to sing Christmas carols or once in a while visit to a nursing home to visit a loved one. How many people even know how to spell Alzheimer's?
When I first started writing about our experience with my grandmother who had Alzheimer's I did it as more of an exercise. I was looking for a topic to write about and thought, "Hey I should write about all that stuff with Grandma". During those years I hadn't even written much in a journal so I thought it would be a good topic to try. But maybe without realizing it I really wanted someone to understand what all of that felt like. When I was eighteen and living at home and dealing with Grandma I had a friend whose grandmother was also diagnosed with Alzheimer's. And guess what? My friend went away to college. I was so angry! She didn't have to deal with any of what I had to. She would have no idea what it felt like to be up in the night, to see your sweet grandma turned into a sort of stranger wandering around in your house, to have to change her clothes, help her in the bathroom while she yelled at you, to try to feed her a dinner that she spit out because it was too lumpy, to not even be recognized as a granddaughter anymore but as a mean intruder.
These days nursing homes are expensive and filled up. If you have a family member you would like to place in a facility you most likely will be on a waiting list that will extend much longer than the few months you were promised. Your hand will be forced and you will have to figure out how to provide care. All of a sudden you will have to learn really fast what Alzheimer's is about. Gradually there will be more people providing care for the elderly and a percentage of the elderly population will have dementia. Is that what it is going to take for people to be understanding of their friends who are care-givers?
We need to speak up and share our experiences whatever they are, good or bad with those around us if anybody is going to care. Americans are listening to stories about PTSD, the war in Iraq, surviving cancer, adoption, getting healthy, becoming a runner. Care-givers need to share what it feels like if people are going to be educated; if people are going to learn empathy. Yes, it's hard to open up and share your story with someone who is not in your shoes and who may never be in your shoes. But it goes both ways. We need to share our stories and we also need to listen to other people's stories. I may never go to Iraq but last week I was listening to a podcast where a soldier was sharing part of his story of coming to grips with what he experienced there. My understanding and my empathy grew for his situation, for his grief, for his struggle, for soldiers in general in the fifteen minutes I heard him sharing. It's ok if your friends don't get it. They might never get it. Maybe you can help them understand a little? You are not really doing yourself or the planet any favors by keeping everything bottled up inside of you.
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