Early Onset Dementia

May 18, 2015 12:17 AM

vingverm

Views

1323288

Likes

9880

Dislikes

234

This was taken in 2005 or so. At this point, Jacquie had Pick's Disease, but it had been misdiagnosed as menopause. She would be about 48 here.

On the beach, around 2010. Lots of Jacquie around. She can't remember too much hough.

2010 again. Riding on the back of dad's motorbike was one of her favourite things to do. She got quite terrified when the helmets were on, but once moving had a blast. This had to stop in 2011, when an on-bike paranoia attack nearly caused an accident.

Beach-time walks. Weight is falling off. Conversation is non-existent.

The birth of her first grandchild. She had been looking forward to being a grandmother for years.

Still knows how to party. #yolo.

Cuddles with her 14 month old grandson. He's very careful with her, knows she's special.

She doesn't walk very much anymore. And she has lost a large amount of weight.

Fun times at the beach. She's 58 here. Her eyes aren't always open, and if they are, she's staring into the void.

Sometimes we'll move to her to beanbags on the floor.

She still smiles and laughs sometimes. I have no idea why. I really hope she dies soon.

*EDIT: 2016 Update: http://imgur.com/a/72caA

Thank you for that last line. that sort of honesty is not often seen or heard.

11 years ago | Likes 3 Dislikes 0

I helped take care of my aunt for ten years. I understand the last line.

11 years ago | Likes 8 Dislikes 1

This makes me sad.

11 years ago | Likes 624 Dislikes 2

My heart goes out to you OP. She looks extremely cared for, thank you for that.

11 years ago | Likes 9 Dislikes 0

Damn. That last line.

11 years ago | Likes 48 Dislikes 2

We buried my Grammy in February. We lost her 10 years ago.

11 years ago | Likes 4 Dislikes 0

Sorry, forgot to add: As hard as it is, I really understand that last line

11 years ago | Likes 2 Dislikes 0

I'm sorry OP. :/

11 years ago | Likes 13 Dislikes 1

Damm. What an ordeal for everyone involved. Last line hit like a truck...Just...sorry.

11 years ago | Likes 21 Dislikes 0

Holy Hell that's scary, OP. She's the same age as my mom. I always joke about her losing her memory... I don't think I'll do that anymore...

11 years ago | Likes 42 Dislikes 1

Actually, you need to - sometimes humor is the only weapon you have to hold the sadness back. Be serious when needed, too.

11 years ago | Likes 4 Dislikes 1

That last line may seem dark or harsh. But until you live with someone you love that has had that happen you won't understand.

11 years ago | Likes 27 Dislikes 1

This is why people need to have conversations about death & quality of life, even though they are uncomfortable. She can't specify her (1)

11 years ago | Likes 28 Dislikes 0

wishes if she hasn't already b/c she would not be mentally competent. Could not make a DNR, etc. My heart goes out to OP. Slow death is hard

11 years ago | Likes 21 Dislikes 2

We were instructed that once she reached a certain point a DNR was to be put in place and no measures would be taken to save her. It helps.

11 years ago | Likes 1 Dislikes 0

After a certain point, it's not terribly hard for the family to make that decision for you, but once my grandma realized she had ALZ she did

11 years ago | Likes 2 Dislikes 0

This is why euthanasia should be legal

11 years ago | Likes 3 Dislikes 0

Damn. That last statement :'( I totally get it though.

11 years ago | Likes 5 Dislikes 0

And this, ladies and gentlemen, is why you should all write a living will. Make decisions for yourself while you still can.

11 years ago | Likes 6 Dislikes 1

Sadly the only thing you can do is take your own life before you lose so much of your mind you can't remember. NY times had an article 1/2

11 years ago | Likes 2 Dislikes 1

following a woman's story who did this: http://www.nytimes.com/2015/05/17/magazine/the-last-day-of-her-life.html

11 years ago | Likes 1 Dislikes 0

As a health care provider who works specifically with alzheimers/dementia patients, sometimes you do hope they pass soon. It's not a life

11 years ago | Likes 3 Dislikes 0

Sorry to hear that OP. My grandmother has Huntingtons disease. Very similar, I know the heartbreak.

11 years ago | Likes 10 Dislikes 0

My dad died of Pick's in 2013, that last line is nothing but the truth.

11 years ago | Likes 6 Dislikes 0

My dad is 61 and has dementia. It's really hard. I am 24 with no family and had to put him in a home. :(

11 years ago | Likes 484 Dislikes 3

:( Sorry to hear mate, keep positive if you can.

11 years ago | Likes 1 Dislikes 0

I'm sorry. You did the right thing.

11 years ago | Likes 4 Dislikes 1

I was an only child from a single mother. My mom died from a brain tumor 5 yes ago. She didn't recognize me in the final days before passing

11 years ago | Likes 2 Dislikes 0

I'm so sorry. I have a feeling my 55 year old father might be developing something like this, he has a hard time remembering some things :/

11 years ago | Likes 2 Dislikes 0

Its really tough especially when you're young, message if you ever need to talk.

11 years ago | Likes 88 Dislikes 1

Me too. Been there, around your age. You will never regret this time, hard as it may seem.

11 years ago | Likes 9 Dislikes 0

You did the right thing. People with dementia are a real danger to themselves and need 24 hour care in proper homes.

11 years ago | Likes 2 Dislikes 0

I feel you man. Was the only one to really help my mother while she had her strokes. Being a caretaker Is the hardest thing I've ever done.

11 years ago | Likes 3 Dislikes 0

I was 19 when I began to care full-time for my family with alzheimer's. Feel free to message me or Skype anytime. I'm Here.

11 years ago | Likes 55 Dislikes 0

Your entire family have alz? Damn...

11 years ago | Likes 8 Dislikes 2

I don't know why you got down voted for that.

11 years ago | Likes 3 Dislikes 0

if its a good home they will take good care of him, stay regular with visits. you did the right thing.

11 years ago | Likes 2 Dislikes 0

Hey, never feel guilty for doing what you know is best for someone you love.

11 years ago | Likes 3 Dislikes 0

I''m in the same boat. Message if you need an ear, okay? I can actually say I know how You feel, but I'm so sorry you're going through it

11 years ago | Likes 3 Dislikes 0

<>

11 years ago | Likes 2 Dislikes 0

Please message me if you need someone to talk to.

11 years ago | Likes 2 Dislikes 0

My dad ended up the same way. Mom hung on caring for him as long as she could, even after a 2nd heart attack. Let me know if I can help.

11 years ago | Likes 2 Dislikes 0

That's rough :( you're strong

11 years ago | Likes 3 Dislikes 0

Hey, if you still use imgur can you message me? What were the first signs that things were slipping?

5 years ago | Likes 1 Dislikes 0

I work as a CNA and also had a grandmother pass recently who was suffering from alzheimer's. If you ever need to ask a question feel free.

11 years ago | Likes 7 Dislikes 0

And that's ok. We had to put my grandma in a home and luckily the dementia kept her from hating it because she didn't know any different...

11 years ago | Likes 4 Dislikes 0

That's the best and worst part of alzheimers/dementia. They don't remember anything, so they don't realize where they are.

11 years ago | Likes 2 Dislikes 0

The Last Sentence... So many feels to feel.

11 years ago | Likes 511 Dislikes 4

It was kinda the same thing with my great gran... Alzheimers and Dementia. She would phone early in the morning and forget who she called or

11 years ago | Likes 1 Dislikes 0

why. She could hardly string together more than a few words... and then she just kinda went silent. She didn't suffer long, but it hurt :<

11 years ago | Likes 1 Dislikes 0

this is exactly what happened with my grandmother. For the sake of my mother i used to think the same thing. She passed. In my mother's arms

11 years ago | Likes 6 Dislikes 0

Who wants a ride on the feels train?

11 years ago | Likes 2 Dislikes 1

My grandmother had early-onset alzheimers. Apparently that type is more apt to run in families. I am normally scatterbrained and tend to 1/2

11 years ago | Likes 4 Dislikes 0

forget things and lose track of things. I'm terrified. 2/2

11 years ago | Likes 4 Dislikes 0

I am the exact same way. My mother and aunt both had early onset. I tell myself it's stress and try to work on managing that. But who knows.

11 years ago | Likes 1 Dislikes 0

You can be tested for the gene. My grandfather-in-law was the only one of 7 siblings to not have it/die from it. He just had to know 1/2

11 years ago | Likes 1 Dislikes 0

if he should prepare himself for it in the future. He didn't want to leave it up to change or miss signs.

11 years ago | Likes 1 Dislikes 0

Don't feel guilty! You are normal for feeling this way.

11 years ago | Likes 11 Dislikes 0

Dementia is a sad and terrifying disease, my heart goes out to you & your family

11 years ago | Likes 25 Dislikes 1

I cant think of many things more terrifying than being a prisoner in your own body, your mind slowly slipping away, I'm sorry OP

11 years ago | Likes 2251 Dislikes 4

This is why despite my own religion I support abortion for the babies born with mental and physically handicaps. Anything else is monstrous.

11 years ago | Likes 1 Dislikes 1

This type of dementia is thought of as being outside of that experience, because you don't know you're slipping away.

11 years ago | Likes 4 Dislikes 0

My dog had similar. She enjoyed smelling the flowers every lap around the yard just like it was her first time. I found it rather blissful.

11 years ago | Likes 1 Dislikes 0

Dementia ward nurse here. They really don't know what's happening to them. It's the relatives who suffer.

11 years ago | Likes 3 Dislikes 0

I agree,had a friend's father with ALS, that was terrifying to watch, and insanely difficult on the family, primarily b/c they cared so much

11 years ago | Likes 1 Dislikes 0

My pain levels were so high my speech and cognition were inhibited. Was trapped inside for two years like that. It's hell. I wish her peace.

11 years ago | Likes 3 Dislikes 0

She may not be aware that life has changed. Her self identity may very well be dead and she is an entirely new person. (Not literally new..)

11 years ago | Likes 6 Dislikes 1

This of often not the case until the very end with most types of dementia.

11 years ago | Likes 4 Dislikes 1

Check out 'Johnny Got His Gun'

11 years ago | Likes 2 Dislikes 0

That's one of my biggest fears.

11 years ago | Likes 1 Dislikes 0

Told my SO that if I get like this I want him to kill me. That's not how I want my life to be and it terrifies me to think about

11 years ago | Likes 12 Dislikes 1

Even if you tell us it's still so hard. Because once you're gone you're definitely gone.

11 years ago | Likes 3 Dislikes 1

What really freaks me out is seeing when they have those moments of clarity, and knowing that they are still in there, a tiny bit

11 years ago | Likes 5 Dislikes 1

That seems a whole lot to ask of your SO. Would hate it to be in their position.

11 years ago | Likes 1 Dislikes 0

We have that kind of relationship, thankfully :) I can trust him with absolutely anything.

11 years ago | Likes 1 Dislikes 0

I can become crippled and wheelchair bound so long has I have my mind and voice.

11 years ago | Likes 1 Dislikes 0

As a hospice caregiver for a friend with ALS, can confirm. Worst. Thing. Ever.

11 years ago | Likes 30 Dislikes 1

A Pink Floyd song come to life. Or vice-versa. Powerful, powerful, powerful reminder of how fragile we are. (Sting)

11 years ago | Likes 1 Dislikes 0

Being mentally there in a body that can't do a damn thing, stuck to machines. That's my fear.

11 years ago | Likes 186 Dislikes 0

Homie, those new bionic legs are actually pretty dope.

11 years ago | Likes 2 Dislikes 2

I work in a vent home and have a guy here who has ALS. Hes so smart. Has degrees in sciences. Very funny man. I adore him. Breaks my heart.

11 years ago | Likes 68 Dislikes 0

Stephen Hawking?

11 years ago | Likes 1 Dislikes 0

No he doesnt have als. I cant remember what he has at the moment

11 years ago | Likes 1 Dislikes 0

My grandmother has Parkinson's disease, she was a geologist who met my grandfather while they worked on RADAR during WWII. You can still see

11 years ago | Likes 14 Dislikes 0

that intelligence behind her eyes but she can barely talk these days. It breaks my my heart but it must be soul destroying for her.

11 years ago | Likes 9 Dislikes 0

Im so sorry :-(

11 years ago | Likes 2 Dislikes 0

My best beloved is in a care facility with ALS and can no longer speak. Wish we could get him an eye tracking control for his laptop.

11 years ago | Likes 8 Dislikes 0

So true... I'm using what you said in one of my songs. Wrote it down in my notebook with your name next to it so i don't forget

11 years ago | Likes 1 Dislikes 0

Well i dont really know what to say to that, im flattered. Thank you

11 years ago | Likes 1 Dislikes 0

Hey thanks for the reply, now this will be way easier to remember! And my new mixtape will be spoken word, so I think it will fit :)

11 years ago | Likes 1 Dislikes 0

It's such a beautiful day.

11 years ago | Likes 1 Dislikes 0

I believe in the afterlife, and this scares me most, because it's just a no-man's land between point A and point B. I would want to die.

11 years ago | Likes 1 Dislikes 0

Im 18 and I was recently diagnosed with ALS (last month). Everyone says stay positive but tbh I'm terrified of being trapped in my own body.

11 years ago | Likes 86 Dislikes 1

I would be too. hopefully its the slower progressing one like Hawkings has?

11 years ago | Likes 1 Dislikes 0

I know it's hard, but u have to enjoy the rest of ur life. Maybe a life where ur trapped with fear is worst. I Wish u courage & happiness !

11 years ago | Likes 7 Dislikes 1

I know this will sound horrible but have you thought of getting a DNR and doing up an advanced directive? They can save a lot of pain later

11 years ago | Likes 25 Dislikes 2

((Hugs))

11 years ago | Likes 7 Dislikes 0

I have Paranoid Schizophrenia, I can tell you going crazy and knowing somethings wrong but being afraid of seeking help you know you need is

11 years ago | Likes 13 Dislikes 0

a special kind of hell people ask me why I don't like horror movies anymore. The short answer is when you live through that kind of crazy

11 years ago | Likes 12 Dislikes 0

Any horror movie just seems so tame and stupid.

11 years ago | Likes 6 Dislikes 0

Also a paranoid schizophrenic. This exactly.

11 years ago | Likes 4 Dislikes 0

I appreciate the blunt honesty of that last line. I'm so sorry for your loss, OP.

11 years ago | Likes 2581 Dislikes 3

I didn't feel bad for wanting my granddad to die for his own sake. I felt bad for wanting him to die for my sake. He consumed all my time.

11 years ago | Likes 2 Dislikes 0

Those are very valid feelings. The guilt and the desire of that wish can tear you apart. Don't let it. You are human. Give yourself a break

10 years ago | Likes 1 Dislikes 0

Visiting my great grandmother at the home had me feeling the same way. She had no idea who I was and kept saying "help me".

11 years ago | Likes 9 Dislikes 0

As someone who lost both their grandparents to alzheimers... this is definitely a scenario where they are in a better place.

11 years ago | Likes 5 Dislikes 0

Agreed. So often the caregiver doesn't get a chance to share their conflicting feelings about who the person WAS and the shell they are now

11 years ago | Likes 3 Dislikes 0

totally agree. my nan's been like this since 2010. change her diapers 4x a day, she doesnt remember who i am. it just doesnt help the heart

11 years ago | Likes 182 Dislikes 2

I guess I can say that we were lucky. I think it started in my Nana around 09, but got bad about 2-3 years ago, she passed away Nov 2013

11 years ago | Likes 2 Dislikes 0

I know how you feel. Hit me up if you ever need to chat

11 years ago | Likes 7 Dislikes 1

Shit man. That's some real shit. Being a caretaker Is the worst thing in the world and the best feeling in the world. Feel free to messageme

11 years ago | Likes 43 Dislikes 2

"the worst thing in the world and the best feeling in the world" that so gets it, it's perfect.

11 years ago | Likes 22 Dislikes 1

My mother had a bad stroke. As her caretaker it was the hardest thing I've ever done. But I wouldn't want to be doing anything else.

11 years ago | Likes 5 Dislikes 0

Bless you for doing that.

11 years ago | Likes 11 Dislikes 1

Shit, I'm so sorry. I'll be here to talk if you need to.

11 years ago | Likes 4 Dislikes 0

I felt the same with my grandma. I was sad, but relieved. I still hate myself sometimes for feeling that way.

11 years ago | Likes 2 Dislikes 0

My grandma is 90 and much is similar to this scenario.It really is painful seeing her as a shell of who she was.

11 years ago | Likes 2 Dislikes 0

My grandmother died last August after years with Parkinson's and dementia. I felt so guilty being relieved when she died. Everyone cried 1/2

11 years ago | Likes 55 Dislikes 0

My Grandma had cancer (breast and then metastasized in the spine years later) and the last few years were rough. We cried, but were relieved

11 years ago | Likes 3 Dislikes 0

But I was just happy is was over. My family thought I was awful because I didn't cry. 2/2

11 years ago | Likes 41 Dislikes 0

Your family was awful for judging someone for grieving in a different way. I could say very unflattering things about them now, but won't...

11 years ago | Likes 4 Dislikes 0

It seems cold but you had already said goodbye long ago. I too felt relief when my grams died after years of not recognizing anyone.

10 years ago | Likes 2 Dislikes 0

I did something similar with my grandmother and great grandmother, heard they were dying some time before and so when they did I had no 1/2

11 years ago | Likes 1 Dislikes 0

more tears to cry, just relief and happiness that their suffering was over.

11 years ago | Likes 3 Dislikes 0

My grandpa died from complications of Parkinson's about 12 or 13 years ago. We knew it was time. He died when nobody was in the room. 1/2

11 years ago | Likes 7 Dislikes 0

it hurt, but nothing like watching my fun and active grandpa dissolve into an armchair for ten years. I miss him still. For 20 years now...

11 years ago | Likes 5 Dislikes 0

My grandmother also died when no one was in the room. The hospice nurse stepped out for 10 minutes, and that was when she went.

11 years ago | Likes 3 Dislikes 0

There comes a point when you have to stop being selfish to help those you love the most...that last line delivered those feelings flawlessly

11 years ago | Likes 33 Dislikes 2

Considering your username that was beautiful

11 years ago | Likes 6 Dislikes 0

That last line hurt.

11 years ago | Likes 2002 Dislikes 11

My grandma's respirations were 90 seconds apart in her last hour, every time she gasped for more air I got more upset. I wanted it to end

11 years ago | Likes 2 Dislikes 0

[deleted]

[deleted]

11 years ago (deleted May 18, 2015 4:39 AM) | Likes 0 Dislikes 0

[deleted]

[deleted]

11 years ago (deleted May 18, 2015 4:40 AM) | Likes 0 Dislikes 0

Read Still Alice.

11 years ago | Likes 2 Dislikes 0

There are fates worse than death...

11 years ago | Likes 1 Dislikes 0

I watched my great aunt gasp for breath for three days before she went. At some point, you just want their pain to stop.

11 years ago | Likes 87 Dislikes 0

This....all of this....

11 years ago | Likes 2 Dislikes 0

Nah. As someone who works on ambos, death is a blessing for quite a lot of people.

11 years ago | Likes 1 Dislikes 0

I hope you're dad's alright, the pictures show smiles covering up the sadness he's really gonna need you when the time comes

11 years ago | Likes 1 Dislikes 0

When my mom passed after an 8 year decline it was like finally breathing after almost a decade.

11 years ago | Likes 35 Dislikes 1

<>

11 years ago | Likes 2 Dislikes 0

It made my heart drop with sadness. I can't imagine being in that situation.My mom made me promise not to let her become a vegetable.

11 years ago | Likes 1 Dislikes 0

O

11 years ago | Likes 1 Dislikes 1

I had a great-grandma with Alzheimer's, she ended up forgetting *everything* for the last year or so of her life. I don't know about 1/2

11 years ago | Likes 45 Dislikes 1

souls and all that, but I think *she* was gone before her body died.... Crushingly sad to see her and know she was gone. 2/2

11 years ago | Likes 35 Dislikes 0

I thought the same thing last September when my grandma's health was fading from her dementia. She died in November. It was sad but...

11 years ago | Likes 7 Dislikes 0

My grandfather is 5 years into full time care because of a stroke he had. He can't talk but can understand us, seeing the pain in his eyes..

11 years ago | Likes 15 Dislikes 0

.I have been wishing the same thing that line says for 5 years now. I know he wouldn't want to be kept alive like this.

11 years ago | Likes 10 Dislikes 0

[deleted]

[deleted]

11 years ago (deleted May 18, 2015 1:47 PM) | Likes 0 Dislikes 0

You are not terrible for wanting her to not be in pain any more.

11 years ago | Likes 1 Dislikes 0

Both of my two aunts went through this. I loved them so much, but I can tell you that some days...That last line was very true. :'(

11 years ago | Likes 4 Dislikes 0

Not judging the thought but damn that's rough.

11 years ago | Likes 2 Dislikes 0

I've gone through that feeling with two pets, you comfort them as much as you can, and hope they go before it hurts to much.

11 years ago | Likes 6 Dislikes 1

But I can understand the pain... It's so much worse to be alive like that than to go on..

11 years ago | Likes 2 Dislikes 0

My grandfather spend 14 months degrading in a care facility. By the end of that, as much as it hurt to think of, the whole family felt that.

11 years ago | Likes 194 Dislikes 1

My grandma was the same way, she lived till 90 and had a great life. Her husband died in his 50s, it was time for her too see him again. :)

11 years ago | Likes 2 Dislikes 0

My brother died of cancer but his decline was so rapid I spent most of the time in denial, even though I knew death would be better for him

11 years ago | Likes 8 Dislikes 1

After a certain point, there's just too much pain with no upside, and the good days really aren't very good. It's just the best thing left.

11 years ago | Likes 49 Dislikes 1

Our grandpa was the same, except he spent years in a care facility. Tough farmboy couldn't quit living. Luckily dementia didn't set in (1/2)

11 years ago | Likes 11 Dislikes 0

until the last year or so, but it was painful to watch him waste away like that. He died in his sleep and was buried next to my grandma(2/2)

11 years ago | Likes 9 Dislikes 0

I have conflicting emotions about that last sentimence

11 years ago | Likes 4 Dislikes 0

My girlfriend and my best friend are both losing their fathers to alzheimers right now. They're both forced to live at home with them (1/2)

11 years ago | Likes 2 Dislikes 0

to take care of them. My girlfriend had to leave school, my friend is near 50 and can't go out to get a real job because he has to (2/3)

11 years ago | Likes 2 Dislikes 0

constantly be there in order to take care of his father. I've heard both of them say that they wished their own father was dead. Truth (3/4)

11 years ago | Likes 2 Dislikes 0

of the matter is that they are gone. There's nothing left, but the remains linger and create a living hell for those left behind to (4/5)

11 years ago | Likes 2 Dislikes 0

care for them. I fully understand the wish for release, especially since they're haunted by the corpse of those they once cared for. (5/5)

11 years ago | Likes 2 Dislikes 0

I remember my grandma telling us she was ready to go. It doesn't have to be cruel. It was a sad relief when she died.

11 years ago | Likes 4 Dislikes 0

My great grandmother thought my cousin was a burgular trying to steal her own baby... So it has its funny times in with the bad

11 years ago | Likes 1 Dislikes 0

I can't imagine a more terrifying point of existence than that point where you know your mind is going but it isn't gone yet.

11 years ago | Likes 142 Dislikes 1

That's what it's like when a psychotic episode is starting in schizophrenia/ mania, when you know you're becoming someone else

11 years ago | Likes 3 Dislikes 0

Wow I never thought about it like that, how scary that must be.

11 years ago | Likes 2 Dislikes 0

Ever read Flowers for Algernon? I can't recommend it enough, but be prepared for hardcore feels. Different circumstances but came concept

11 years ago | Likes 4 Dislikes 0

Flowers for Algernon fucked me up something fierce.

11 years ago | Likes 2 Dislikes 0

Pretty sure that's why Terry Pratchett "died of natural causes" a couple years after diagnosis.

11 years ago | Likes 4 Dislikes 0

I'm curious to know how aware she is of her condition though.

11 years ago | Likes 5 Dislikes 0

By this point I'd bet minimal if any awareness, I just meant towards the beginning of her illness before fully deteriorating.

11 years ago | Likes 5 Dislikes 0

I think I'd hate it more if my body was degenerating but my mind was still 100% there

11 years ago | Likes 6 Dislikes 0

Yeah that would also suck total balls like with ALS or MS

11 years ago | Likes 4 Dislikes 0

MS will eventually take a lot of your mind too. Or it did for my uncle. In just a couple of years he lost a lot

11 years ago | Likes 3 Dislikes 0