The Adventures of the Blind/Low Vision/Visually Impaired (BLOVI) Girl- Volume 34: The Euthanasia Blog
http://www.youtube.com/watch?feature=player_detailpage&v=uAn5-GIv1zQ
During my recent vacation I met my boyfriend’s mother, who ended up in the hospital the week we were there. She is suffering from advanced dementia. My grandmother is also struggling with dementia and I know so many people who have family members with Alzheimer’s or dementia. As we live longer it is inevitable that our brains will stop functioning before our bodies. To me this is a tragedy and it makes me think about quality of life in the long term. Is it not quantity but quality that we want and when the quality goes, isn’t it time for us to go. That is the focus of the blog. But first…………….
My WTF of the week is our condo at the beach last week. It was as narrow as a single wide and the kitchen was actually in what appeared to be the hallway. The living/dining room was tiny and for some reason they had portioned off a part of the space to squeeze in another single bed and dresser. You could barely move around in one of the bathrooms and the balcony was so small that it only fit two small chairs and a tiny table. When two thin people are struggling to both sit on the balcony there is a problem. The only saving grace was that the bedroom was a decent size and I retreated to it often to escape the feeling of claustrophobia. And it is not like we did not look up reviews and pictures of the resort beforehand- we did. I am guessing the pictures online were of other units or maybe another resort. The other funny thing is because all the buildings were facing sideways and there were numerous ones, we kept getting lost. The first day two smart people could not figure out how to get to the beach and the second day we actually took the boardwalk to the wrong hotel. I am sure if my vision was normal I could have figured it out. What I have learned is that a visually impaired person paired with a person with no sense of direction equals getting lost a lot.
This week I can’t get enough of my new sunglasses. For a person who has retinal damage and a blown pupil the proper sunglasses are really important. I learned this the hard way. After my cheap self lost my first $50 pair of polarized shatterproof glasses (of course shatterproof is a must for a person with my luck) I decided to buy a cheaper pair at the Walgreens. The problem was they did not keep out the side rays and were already scratching. The first day on the beach we took a long walk and sat around a little and I got a massive headache. I thought it was from hunger or not enough fluid, but eating and drinking did not help. That is when I realized that it was from light. You would think by now I would realize that having a blown pupil is an issue when in intense sun and glare. It is like having your eyes dilated all the time. So, off we went to a surf shop where my not so cheap boyfriend wanted me to try on good glasses and refused to tell me the price (because he paid for them). I ended up with a nice pair and they make a ton of difference- no more headaches. This is a good thing for me and for him too.
As I interact with people suffering from dementia and witness the loss of both long and short term memory and the suffering of the people who love them, I think about the fact that losing my ability to think and my memories scares me more than anything else. It is like the people are gone, but still here. So there is sadness, but you cannot grieve. Instead you look for glimmers and glimpses of the person you loved, moments where they show their personality. And you hang on to hope when they remember something, anything and fear for the day when they no longer remember you. And there is the guilt that comes from hoping that they won’t linger long in this state because it feels like you wish them dead and that means you are facing the reality they are not coming back. For me, the hardest thing is the anger, and sadness that comes out in the moments of lucidity. In those moments they ask to die or for you to kill them and they express the misery of knowing that their brain is not working. After that is the fear when they no longer know where they are, or what day it is or where the rooms in their house are. The entire familiar becomes unfamiliar and it is the unfamiliar that is scary, so everything is scary.
If and when I get to this point, I no longer want to live. Not because I am a coward, but because what makes me is gone and I would not want those around me to be in a state of perpetual sadness and delayed grieving. So, that is why the living will is important. So that you can state that no unnecessary means are used to save you. As my dad says, just tattoo DNR on my chest. But I don’t think that is enough. Why can’t our living wills say that when we lose our minds or most of our functions and have no quality of life we would like to be “made confortable” and by that I mean euthanized. Why do I have to make a pact with my boyfriend that if we get that way we promise to kill each other and make it look like an accident (preferably pillow suffocation). But why should we have to risk arrest to do something that is humane, legal in other countries and that we do to animals all the time. If I request to die when I am in a certain state, why can’t that request be granted? This way I am not begging people to kill me when I am lucid, because I know that it can and will happen. As we live longer and longer we assume our quality of life is also getting better, but I am not so sure. I know that I would rather live less years if in those years I have some degree of health and ability to think and remember my life. I know that in the cycle of life we start out in diapers eating mushy foods and babbling and maybe we are meant to go out that way. I say hell no to that- get the pillow.
And to those who have a loved one who is among the living, but in essence is gone-my thoughts are with you. What you face is almost unbearable. So we all do the best we can.
Keep Moving Forward,
Beth (BLOVI) Medlock
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