Monday, April 18th, 2011
Every year, no matter what we do, we all get a little bit older. Fact of life. And death. But we Americans tend not to talk much about death. Any kind of change seems to make the average American quite uncomfortable in fact– unless that change is that they just won the lottery and became a millionaire and got bigger boobs.
But the scientific reality is that we all live every day of our lives– we’ve earned the right to be the age we are today. And all the work we’ve put into getting where we are now is worth celebrating– even if we still have plans to go somewhere else. Scientifically speaking, if you live long enough, you will eventually develop some form of dementia. And of all the clinically defined forms of dementia, 47% of people end up with the version we call Alzheimer’s.
I’ve chosen to take a Gerontology class about the realities of care giving for elders with dementia. I believe that everyone deserves to be treated with respect, and be given the opportunity to succeed in living a good life, at whatever age and ability they have. As a future doctor, I really want to understand the realities of the people I serve. And I’ve learned that a three-year-old can communicate some really profound truths. So can a 19-year-old (well, okay, that’s slightly less likely). And a 79-year-old. It isn’t about aging. It’s about listening.
So while I’ve already learned some of the medical processes related to Alzheimer’s and the clinical treatment of dementia… the most important thing I’ve learned is that even in the most cruelly advanced stages of these brain-diseases, people have something important to communicate. And as a caregiver, or as a care provider, listening takes on new importance, and new dimensions. If someone you love is living with dementia, and especially if you are the primary care giver for someone with dementia, I highly recommend these two little books we’re reading in class:
- The Art of Dementia Care, by Daniel Kuhn and Jane Verity
- Alzheimer’s Essentials: Practical skills for families and caregivers, by Gordeau and Hillier.
Often, in the middle stages of dementia, a person will insist that someone is sneaking into the house and moving things, hiding their glasses, dirtying their clothes. They may even start to see these “invisible people” in the room, threatening them. And often the truth is that the person with dementia is confused and frightened and embarrassed. They just found their reading glasses in the freezer or the sock drawer, and some smart person has taken away their keys– but all they know is they can’t find the keys, and the care facility you’ve put them in for their own safety isn’t HOME. They want to go home. So they need keys.
And when things aren’t the way the person’s brain says they should be– the person creates a story to explain the reality they find. Someone has stolen their keys. Someone is throwing food on their good clothes. It’s the end of the day, and time for them to go home. Even though they don’t really know where “home” is anymore– or they may already be there.
The challenge to caregivers is that we have to be compassionate and loving, rather than truthful. Respectful and aware. Good listeners– and we have to respond to the need behind what is expressed. We have to figure out what their reality looks like through their eyes– and interact with that reality. Tell the invisible man in the room to leave, and reassure your charge that you’ve put her keys in a safe place. She can help you with a game or folding some clothes. She can tell you where she wants her clothes to be put while you wait for her ride to show up. And the truth is that by the time the new task is complete, she probably doesn’t remember the white lie you told to help her feel sane in her crazy world. This place IS home, and there is no “ride.” You’ve also given her some control, and you’ve given her the respect of taking her fears about the invisible (and totally imagined) man seriously. Because that story has become real for her.
Like I said– listening is the most important thing we can do for the people around us. And doubly so when that person has dementia. We can celebrate the little things– the days that socks go in the sock drawer and dish rags go in their spot. The good days where everyone just enjoys the sunshine or the birds or the silly gameshow on TV. The times that offer us profound truths, if only we are listening for them.
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