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BLOG: Why I’m not afraid of Alzheimer’s (and what I’m really afraid of)
Posted: Tuesday, November 10, 2015 10:29 AM
Joined: 7/24/2015
Posts: 3020



Why I’m not afraid of Alzheimer’s (and what I’m really afraid of)

by | Nov 3, 2015 | Dementia, Psycho-social interventions, Story of Dementia

"The ongoing conversation between Dr. Peter Whitehouse, Marc Wortmann and colleagues is worth a read. Give yourself twenty minutes though, because it’s a long one. And it’s thought-provoking. At the centre of the argument is whether Alzheimer’s disease really exists. Read the blog at http://j-alz.com/editors-blog/posts/is-there-alzheimers-disease

I’m not about to respond on their blog and put myself in the middle of this clash of titans, as they lob the dementia-equivalent of atom bombs, but here’s my response.

I don’t care what they call it; I’m not afraid to die of it, should I ever be diagnosed with it. I’m not afraid to die of _______(fill in the blank of whatever they are labeling diseases that include symptoms of dementia in the future). I’ve witnessed my sister dying of pulmonary fibrosis. She suffocated to death. Slowly and excruciatingly. Trust me, there are worse ways to go.

What I’m afraid of are the people around me and how they’ll treat me if I exhibit symptoms of ______. I’m not looking for a “world without Alzheimer’s”; I’m looking for a world where people know how to support me in living with it as best I can.

In my imaginary future world, I don’t care if I am dying of _________ if I am given the necessary tools to live with ________. I’m not afraid of being diagnosed with _______ if I am afforded the opportunity to continue to give back to my community and see that I’m having an impact. I’m not afraid of _______ if my family, friends, and colleagues provide me with the understanding and support to volunteer, exercise, do hobbies, visit with grandchildren, have dinner with friends, drink a glass of wine, see movies, enjoy a museum, go on trips, play games, read—even if it seems a struggle and I’m confused and don’t remember doing it afterwards— except that I’m experiencing a warm glow of happiness which means I must have done something nice. The people around me have realized that being able to remember something is highly over-rated; they don’t even bother correcting me. I will keep reading because the books I read are modified so I can still enjoy the experience of reading. And cars drive themselves by now, so there’s that.

If I am diagnosed with _______, my family and friends will see past my repetitive questioning, confusion, propensity to forget their names, and know that I love them still, even if I don’t know who they are. They give me the time to respond to their questions, and try their hardest to include me in the conversation, knowing that my words are in there somewhere but just take longer to get out. They know that if they don’t wait for me to get my words out, I’ll give up and just stop talking, so they give me the space to be heard. Moreover, in this enlightened time, they haven’t stopped coming to see me, and they see past my apathy to get me out of the house as well. They’re not embarrassed to be seen with me in public and they forgive my occasional inappropriate comments directed at random people on the street, who know me anyhow and so give me some leniency in that department. Someone takes me to exercise class and doesn’t care if I can’t quite follow along (I’ve never been able to, so nothing’s changed there).

When I forget how to get home, or get lost on the way to the hair dresser, my community members know enough about ______ to understand how to gently steer me home without recrimination for me or my family, in the secure knowledge that I’ll probably do it again and that’s OK. Because someone will lovingly take me home again. Because in my community, everyone has had training on how to be _______-friendly and so everyone is a caregiver. Which is great, because when I fumble with my change, forget why I came to a store, can’t remember my password, am wearing different colour socks, or wear my coat inside-out, no one is rolling their eyeballs—that’s so passé.

I won’t mind having ______ because I still get to go to some big place with walls and a door where I socialize with my new friends who seem rather forgetful and confused and I don’t know why, but that’s OK, and those people over there at that centre-daycare-program-thingy are lots of fun and we go on trips to…somewhere…and, hang out and do things with…someone…who seems rather happy that we did whatever it was we did with them, and we eat great food, and my family can afford to send me because the government has realized that funding care programs like this and supporting people with ______ in living healthier, social lives, and reducing caregiver stress, is ultimately cheaper than trying to find that dang cure and way cheaper than housing people in institutions when they don’t find that cure.

And when the day comes that I keep calling out for “home” even though I’m already living in what others think of as my “home,” the people around me are enlightened enough to have figured out that “home” is probably a metaphor for missing my mother or something like that. Fortunately, in my future world where I am diagnosed with ______, the people around me have been given the education to understand how important it is that they learn who I really am, to understand that I’m still that person I always was, only not able to communicate in a way they readily understand. Because they’ve taken the time to know me, they understand that when I lash out verbally or physically, I am frustrated and am communicating the only way I can. And when I fall out of bed in the middle of the night, or call my daughter twenty times in one hour complaining about the man on the roof whom I’m certain is stealing my toilet paper, that’s OK because the (affordable) caregiver is coming tomorrow to give my daughter respite, and my daughter is given time off from work to rest up, secure in the knowledge she’s getting paid through their “elder support program.” And maybe I don’t even start doing that sort of thing, because early on in my diagnosis of ______, people have given me so many opportunities to live a good life with _______, that my symptoms do not worsen at the rate they used to when people with ______ were sidelined and forced to watch TV 24/7 because no one knew what to do with them and didn’t think they were worth bothering with, and she’s not, you know, THERE, and ghosts-of-their-former-selves can’t do anything, and she’s getting old and she’s gonna die anyhow, so what’s the use?

Instead of dying a horrific death from _______, I die peacefully in my sleep, feeling fortunate that I’ve lived in an era where I was seen for who I am and not who I was, and not as someone first and foremost dying from _________.

But, unfortunately, these days are far in the future, if they ever arrive at all. Because we don’t have a cure? Well, there’s that, but there are over 30, 50, 75 or 100 (depending on the day of the month and who you’re talking to) types of dementia, and we are no closer to a cure for any of them. As per The Myth of Alzheimer’s blog post, the heavy-weights are still arguing over what to call it. And dementia has been around for a long time; my own great-great-grandfather died in the 1870s and the cause of death listed on his death certificate is “senile dementia.” He died in a poorhouse, but perhaps that’s just what they called publicly funded, institutionalized long-term care in the UK back then.

No, the thing getting in the way of creating a world where I won’t care if I have ________ is that I currently exist in a world where the stigma of dementia is dehumanizing and gets in the way of people understanding how best to care for, work with, support, communicate with, enable, and empower people with dementia to live with the disease and not die slowly inside instead. In a time where we don’t have a cure, we don’t know the cause, we can’t prevent it, we can’t accurately diagnose someone until they’re dead and have an autopsy, and we can’t even agree on what to call it, there is only one thing that is within our grasp—within our control—and that is to change the story and get rid of the stigma. Until we start telling stories that refute this stigma, that enlighten people to see past the stigma, nothing will change. And I continue to fear dying from ________ because of the world that this stigma has created, and it’s not a nice one."


Sometimes people suggest to me that I am unusual in that I can talk, logically, about what I want for my future care (and for everyone with dementia). But I am not unusual. There are so many out there, like me, all sharing similar sentiments.  We each came to these things on our own, in response to how people around us respond to our disease, in what caregivers say (because they are so active and verbal) and share about the kinds of cares they are giving or the advice they share.  I have a lot of sympathy and understanding, I get that right now in the world, there is not a better way...and that the way must still be created.  But no, I am not the only one to think these things.  I am not upset, I am just trying to ensure a descent future for myself and those who will care for me...and for those I have gotten to know, and those I will never meet.  What I hope is that one day people start listening to us.  Who knows, maybe it will be today. 

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