Wednesday, July 18, 2012

Alzheimers/dementia

I just read a wonderful book called Still Alice by Lisa Genova. It was about a woman named Alice, a Harvard professor of cognitive psychology, who has early onset Alzheimers. She is only fifty. This book was so touching and I felt such empathy for Alice (and for all those who suffer from this debilitating disease...particularly those with early onset Alzheimers).

At one point, Alice goes to a conference about Alzheimers and speaks. What she says is so powerful, I think, that it had me in tears as I read it.

"We, in the early stages of Alzheimer's, are not yet utterly incompetent. We are not without language or opinions that matter or extended periods of lucidity. Yet we are not competent enough to be trusted with many of the demadnds and responsibilities of our former lives. We feel like we are neither here nor there, like some crazy Dr. Seuss character in a bizarre land. It's a very lonely and frustrating place to be."

"...I'm losing my yesterdays. If you ask me what I did yesteday, what happened, what I saw and felt and heard, I'd be hard-pressed to give you details. I might guess a few things correctly. I'm an excellent guesser. ...I don't remember yesterday or the yesterday before that. And I have no control over which yesterdays I keep and which ones get deleted. This disease will not be bargained with. I can't offer it the names of the United States presidents in exchange for the names of my children. I can't give it the names of the state capitals and keep the memories of my husband.

I often fear tomorrow. What if I wake up and don't know who my husband is? What if I don't know where I am or recognize myself in the mirror? When will I no longer be me? Is the part of my brain that's responsible for my unique 'me-ness' vulnerable to this disease? Or is my identity something that transcends neurons, proteins and defective molecules of DNA? Is my soul and spirit immune to the ravages of Alzheimers? I believe it is." (pages 251-252)

I think this is so powerful and beautifully written. I truly can't imagine many things worse than losing my ability to read, write, speak and think.... and to be aware, at least at first, that this is happening and not be able to stop it. This disease seems so cruel. To lose all that seems most dear. I, personally, would much rather lose the ability to walk than to lose the ability to read or to think and learn and remember.

And yet, it also makes me grateful (as do so many things), that I have the perspective of the gospel of Jesus Christ. To be certain that the things that make me uniquely me will transcend whatever infirmities my body may someday suffer. To know that ultimately our souls will overcome the calamities of the flesh.

The speech goes on to talk about our responsibility as those who don't have Alzheimers.

"Being diagnosed with Alzheimer's is like being branded with a scarlet A. This is now who I am, someone with dementia. This was how I would, for a time, define myself and how others continue to define me. But I am not what I say or what I do or what I remember. I am fundamentally more than that. I am a wife, mother and friend, and soon to be grandmother. I still feel, understand, and am worthy of the love and joy in those relationships. I am still an active participant in society. My brain no longer works well, but I use my ears for unconditional listening, my shoulders for crying on, and my arms for hugging others with dementia....I am someone living with Alzheimer's. I want to do that as well as I possibly can." (page 252)

"Please don't look at our scarlet A's and write us off. Look us in the eye, talk directly to us. Don't panic or take it personally if we make mistakes, because we will.... I encourage you to empower us, not limit us.... Work with us. ... We can help each other, both people with dementia and their caregivers, navigate through this Dr. Seuss land of neither here nor there." (page 253)

I love this. The speech continues on and is so powerful. I'd love to quote all of it...but I'm sure I've probably quoted more than I should already. I have a good friend whose mother died from early onset Alzheimers. My grandparents have suffered from dementia.

It is uncomfortable and saddening to have someone you love change and forget due to dementia of any kind. It is easy to talk about them but harder to talk directly to them. I have been guilty of this, and I have watched as others have been as well. I am going to try harder in the future to remember this and if I have the chance to interact with those suffering from dementia to treat them with more respect and love. To treat them as I would hope to be treated if I suffered from dementia. Some day I might.
*****
This book touched me deeply. And it reminded me of an online conversation (on Facebook) I had with a high school friend Ben.

Ben asked this question: "An idea: We all know what fiction is; namely, that even though it may touch on universal themes or true-seeming concepts, it is not real. Yet somehow we still connect to it. Whether we are enthralled by the cleverness of Odysseus or the pain of Valjean or the sheer gumption of Harry Potter, we identify with certain characters and come to see them as more real than people that we live and work around. Why is this? What is it about a well crafted creation that makes it more able to be empathized with than a living, breathing human being?"

Several people responded with some interesting theories. I thought this was a great question. I'm sure I don't know all the answers and that the answers vary from person to person, but here are my thoughts (which I shared with Ben and others on Facebook).

In a story, you are able to see not just what someone does, but you are able to see why they do it. So it is easier to feel compassion for their mistakes and challenges. In real life, we rarely (if ever) really know why someone is doing the things they are doing and it is easy to think that if they would just do ________, then they wouldn't have that problem. You know that old saying about needing to walk a mile in someone's mocassins before judging. Books, if well written, let you do that. I do think there is also something to the idea of the pain being a bit distant. Not that novels/movies/plays don't touch you, but because they aren't personal and you know that soon the emotion will end, it is easier to accept and experience the pain because you know that it isn't really your pain and that soon it will be gone. Different to read about someone with cancer than to watch someone you love suffer with it...or to read about a broken marriage than to have yours fall apart...and so on.

I also think that the best books affect us in ways that slowly change us and make us better humans...make us more aware of the blessings we each have, the challenges we each face, and help us to become more compassionate, less judgmental, more aware that there are two (or 20 or 100) sides to every story.

One more thought... living, breathing human beings piss us off, hurt us and annoy us. Sometimes fictional characters do too, but not as often, nor does it bother us as much. We can put the book down or turn the movie off when the emotion gets too strong. Can't always walk away from the real life pain/annoyance/anger. But I surely hope that I don't have more compassion for some fictional character with autism than I do for a real life family member with the same diagnosis. My heart aches much more for my family member. I think this is only true for our feelings towards those who are more distant from us...strangers or acquaintances, but not for those we love.
*****
I hope that this book as well as many others truly do help me to become a better human being and help me to gain more compassion for the real life people around me when they have similar struggles. Sometimes when someone is struggling, you aren't sure how to help them and I think some times reading can give you insights that can help you to be more supportive. I hope that is the case.