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An Open Letter to Alzheimer's


mollyhousemouse

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 Dear Alzheimer’s, 

 

You’re just a dirty sneak thief.  You sneak in and steal from people. You don’t even have the courage to announce yourself.  Your nasty cousin, cancer, at least starts with a cough or a pain. But not you, oh no.  

 

You waltzed in, and started taking things. Little things. Things you didn’t think would be noticed; like where the car keys had gone, or the reading glasses. “Everybody remember where we parked!” became a family joke. 

 

You started taking bigger things.  Like conversation. Gone were the days when we talked about so many things over coffee.  Now there were questions asked, and answered, and asked again. Trains of thought, derailed before they even left the station.   

 

But now, everyone notices.  Stolen glances behind backs, eyes rolling like teenagers at hearing the question, again. And, occasionally, “Oh wait, I asked that already, didn’t I?” "You know, I'm just not worth a damn some days." She knows now, that something is missing. But you’re sneaky, she’s not quite sure what’s going on.  

 

And while this is cruel, what is worse is that the past is now crystal clear.  Phone calls and emails to grandchildren to apologize for things that happened 13 years ago.  Knowing for certain, with absolute clarity, what she wore to that Halloween party 40 years ago.  

 

You’re getting bolder now.  Walking, moving, becomes difficult.  You’ve stolen our walks. When we would wander the neighborhood, the park, even the mall.  The shuffling gait leads to trips, trips to falls, falls to fear, and fear, to inaction. 

 

We ask, “What’s next?” There’s a caregiver now.  You’ve taken her ability to feed herself, and care for herself.  She’s like a small child again needing help with daily activities like brushing her teeth, and even going to the bathroom.  Unmarked boxes, full of “incontinence supplies” start showing up with the mail. Like a small child, she lashes out in anger, and frustration.  She knows things are missing. 

 

If that wasn’t enough, you’ve taken her spirit, the very thing that made her, who she is, or was.  She lays on the bed, not knowing anyone, or anything.  There isn’t even any fighting. We know she’s gone, only her body doesn’t realize it yet.  We mourn, but we can’t fully, as we try to care for what you’ve left behind. 

 

You’ve taken so much.  Will you ever be satisfied? 

 

Sincerely, 

 

molly

 

 

We all have fears.  When i was a teen, and into my early twenties i lived in a part of the US that has high rates for MS, Multiple Sclerosis.  It was my boogeyman. Now, three people i know, two of which i went to high school with, are battling it. It doesn’t frighten me anymore. 

 

The area i grew up in has been labeled a “cancer cluster."  Talking with classmates from high school, we’re losing parents and each other to cancer and other chronic illnesses.  i deal with this daily, it’s no longer a fear. 

 

But Alzheimer’s.  That’s fecking scary.  My Grandmother had it; her sister had it; my mother has it; my sister's mother in law has it.  My aunt lost her husband to it last year. We’d been saying goodbye to him for three or four years 

 

Losing ME, that’s scary. So scary that it can make me cry.   

 

This month in the US starts a series of "Walk to End Alzheimer's" events.  You'll see commercials for it, hear stories on the news programs, they'll say that "the first survivor of Alzheimer's is out there." If you are so inclined, get a team together, volunteer at one of the events, or find a way to sponsor someone who's walking.  For more information on the Walks check here
 

 

 

As always, my thanks to tim, @Mikiesboy, for helping me find the courage to do this in the first place xoxo

And tonight, to AC, @AC Benus, thank you for looking at this for me xoxo

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I loved this , it is beautifully blunt and incredibly brave in the face of a disease that is simply put , insidious ! I empathise with your circumstance but applaud your courage .... so few have it. 

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I wish I could leave both a "Love" and a "Sad" for this piece. Hugs for you, and a warm slap on the back for bringing The Walk to End Alzheimers to greater attention. Muah 

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Your letter makes me grieve for all the stolen things, for all the spirit and life gone. Your words make me want find a walk or sponsor someone who can do it if I cannot. But most of all, it makes me want to offer strength and love to you, and to those I know who are affected by this thief. 

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Frankly, i hope people i love and myself just die.   i hope they do it in their sleep, or in the blink of an eye.  i do not want to linger, nor do i want them to. 

 

well written, touching and informative also. thanks, molly. xo 

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Well told about an insidious disease that seems to be affecting more and more people, especially in my generation....

 

My wife's sister has required nursing home care because of Alzheimer's for more than two years now.  My father-in-law died from it in 2001 after a long battle of more than 10 years with the last 3 requiring nursing home care.  My mother-in-law was never diagnosed but had some noticeable dementia for more than two years before she passed in 2005.  My mom who lived more than 93 years had dementia the last 2-3 years as well.  

 

The disease is particularly horrible because it robs a person of their dignity in so many ways.  We've supported the Alzheimer's Association for years.  Their website has some helpful resources for families dealing with the problem and also ways you can contribute.

https://alz.org/

Edited by Daddydavek
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I was late in the game to see that you'd posted a new blog, molly. For some reason, I still don't receive notifications when you post, even though I'm signed up to. At any rate, this new post is powerful and informative. I have not personally had experience dealing with Alzheimer's (knock on wood) however my cousin (distant relative) recently passed from it and he was only 58. I know that it's a silent beast that affects many people - both directly and indirectly. After my cousin's passing, although I hadn't been in touch with him for over 35 years, I made a donation to the Alzheimer's Association. It seemed like the least I could do, a small way to honor him as family, and a way to keep research and education going.

 

Thanks for putting your heart and soul into this topic and for finding the courage to share it with us. you might consider sharing it around other places, too, not just GA. It's something everyone should read.

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On 9/11/2018 at 12:36 AM, BHopper2 said:

I'm sorry that you have to go through all that miss molly, with your family, and friends. Know that you are in my prayers.

thank you A

it makes me more angry than anything.

appreciate you reading 

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On 9/11/2018 at 4:35 AM, cognac69 said:

So thoughtful, so so touching, so poignant, so true. You have expressed your thoughts and feelings so well that you have also expressed the thoughts and feelings of many others too. My thoughts are with you and the many others who are having to deal with this. 

thanks!

i need to tell you that @Mikiesboy has helped me tremendously with my writing.  he looked this over and edited earlier this year

thanks for reading and joining the conversation 

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On 9/11/2018 at 5:53 AM, Defiance19 said:

:hug:One of my best friends has admitted to those same fears. She cares for her mom who is at end stage Alzheimer’s disease and her dad who has vascular dementia.  It’s an endless struggle, and the toll that it takes on the family, well.. you’ve expressed it perfectly here. 

I’m sorry you and you family are dealing with this.  

Hopefully all the funds raised from these ongoing events will go far enough to find a cure sooner than we expect.  

My best, dear molly.  xo. 

dementia, losing oneself, and knowing that you might not even KNOW it's happening 

it's all just...i don't know....frightening i think is the feeling

thanks for reading and talking

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9 minutes ago, Mikiesboy said:

oh man that.. that was something

yes, it really was!  i hope that more people in charge take a page from their book.

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On 9/11/2018 at 9:13 AM, deville said:

I loved this , it is beautifully blunt and incredibly brave in the face of a disease that is simply put , insidious ! I empathise with your circumstance but applaud your courage .... so few have it. 

thanks deville

i've always heard that naming your fear makes it less scary, not sure it always worked, but it was good for me to put this all into words.

appreciate you being part of the conversation

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On 9/11/2018 at 9:28 AM, Carlos Hazday said:

We lost Yeya (my grandmother) 20 years ago. Two months ago it was her daughter, my mother. I saw a spark of recognition the last time I saw her, two days before she died, while I tried to feed her chicken soup. She had stopped eating a few days before. Her death was welcome. I carried the smallest burden during her last couple of years, we never got along well, but her expression when she saw me walk into the nursing home's room will always be with me.

 

I'll always wonder about how much of her was still inside. Why every time I tried to talk to her near the end, when I asked her to nod if she heard me or understood me, she failed to respond. I hope she heard me and understood when I explained my actions. Dad's older and forgetful, but he's still in there. I hope his death, when it comes, isn't painful. For him or for those he'll leave behind.

 

Thank you, Molly.

hugs to you too @Carlos Hazday 

my uncle had gotten to the won't/forgot how to eat stage at the end, my cousin and i would talk about it and how difficult it had been for him to watch his mom go through this

thanks for being part of the discussion and sharing your story too :hug:

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On 9/11/2018 at 9:37 AM, AC Benus said:

I wish I could leave both a "Love" and a "Sad" for this piece. Hugs for you, and a warm slap on the back for bringing The Walk to End Alzheimers to greater attention. Muah 

thanks AC

for everything!

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On 9/11/2018 at 11:54 AM, Parker Owens said:

Your letter makes me grieve for all the stolen things, for all the spirit and life gone. Your words make me want find a walk or sponsor someone who can do it if I cannot. But most of all, it makes me want to offer strength and love to you, and to those I know who are affected by this thief. 

hello Parker

i'm glad that this made you think about walking or sponsoring

it takes a crap ton of patience, for the caregivers, and families

thank you for being part of the conversation

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On 9/11/2018 at 5:33 PM, Mikiesboy said:

Frankly, i hope people i love and myself just die.   i hope they do it in their sleep, or in the blink of an eye.  i do not want to linger, nor do i want them to. 

 

well written, touching and informative also. thanks, molly. xo 

i hope that i don't linger, that would be a kind of hell on earth 

for me, for Phil, for the kids

i thank you for your help editing this a few months back, and for helping me find the courage to do it at all

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21 hours ago, Daddydavek said:

Well told about an insidious disease that seems to be affecting more and more people, especially in my generation....

 

My wife's sister has required nursing home care because of Alzheimer's for more than two years now.  My father-in-law died from it in 2001 after a long battle of more than 10 years with the last 3 requiring nursing home care.  My mother-in-law was never diagnosed but had some noticeable dementia for more than two years before she passed in 2005.  My mom who lived more than 93 years had dementia the last 2-3 years as well.  

 

The disease is particularly horrible because it robs a person of their dignity in so many ways.  We've supported the Alzheimer's Association for years.  Their website has some helpful resources for families dealing with the problem and also ways you can contribute.

https://alz.org/

insidious is such a good word for this disease

i'm not particularly close to my mom and dad anymore, but i have been looking at their site for the caregiver information and it's spawned a few phone calls with my dad

thanks for the link to the site and joining the conversation

 

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20 hours ago, MacGreg said:

I was late in the game to see that you'd posted a new blog, molly. For some reason, I still don't receive notifications when you post, even though I'm signed up to. At any rate, this new post is powerful and informative. I have not personally had experience dealing with Alzheimer's (knock on wood) however my cousin (distant relative) recently passed from it and he was only 58. I know that it's a silent beast that affects many people - both directly and indirectly. After my cousin's passing, although I hadn't been in touch with him for over 35 years, I made a donation to the Alzheimer's Association. It seemed like the least I could do, a small way to honor him as family, and a way to keep research and education going.

 

Thanks for putting your heart and soul into this topic and for finding the courage to share it with us. you might consider sharing it around other places, too, not just GA. It's something everyone should read.

hello Sir

i'm glad You found it, and joined the conversation

my little blog is a place where i'm learning to share these things, Sir

sharing it elsewhere?  that's actually intriguing

 

thanks for reading and commenting Sir

 

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55 minutes ago, mollyhousemouse said:

tim shared this article with me a while back, i hope that "memory care" becomes more and more like this

http://projects.thestar.com/dementia-program/index.html

 

I've just been reading the article and watched the video. I've never heard of it before but I have to say this needs to be the way Alzheimer care is provided everywhere. I wish it had been like this for my Dad.

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