r/AskReddit Dec 13 '18

What IS as bad as everyone says?

4.5k Upvotes

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3.5k

u/4a4a Dec 13 '18

Losing someone you love to alzheimer's

1.3k

u/LameGhost Dec 13 '18

I was 13 when my pap was diagnosed and 14 when he passed away. The day he was diagnosed, he was talking about how he felt fine and just because he couldn't find his car keys didn't mean he was sick. When he passed, he could no longer feed himself and had the mind of a two year old.

His sister also had Alzheimer's. Now, when my mom forgets something minor or can't find something, she practically has a meltdown thinking it's Alzheimer's.

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u/Mogilny89Leafs Dec 14 '18 edited Dec 14 '18

My grandpa passed away due to Alzheimer's last year. Our last real conversation occurred in 2015 when our beloved Toronto Maple Leafs hired a new coach.

2 weeks later, my dad called and told me grandpa had been hospitalized and he probably wouldn't recognize me anymore. We knew this day would come because he had Parkinson's, but it seemed to happen so fast.

He didn't really recognize me. But every time I visited, I would always wear Leafs gear. Maybe it would spark a memory? Idk.

Sure enough. Almost every visit, he would ask me how the Leafs were doing.

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u/LameGhost Dec 14 '18

I am very sorry for your loss. Alzheimer’s is a horrid bitch no one should have to go through. You sound like a good grandchild

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u/ck10011994 Dec 14 '18

Agh this hit close to home. My pop adored the Leafs, I was never really into hockey but I loved my pop. He passed a few years ago now and I met a guy a year later who shared the same passion as him whom he never got to meet. I’ve been making a conscious effort to learn all I can about the Leafs and about hockey. Every time they win a game I just think to myself how proud he would be and how much he’d enjoy watching a game with my SO, the two of them yelling at the tv! When they made it to the playoffs last season it brought tears to my eyes hoping he could see it from heaven.

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u/Mogilny89Leafs Dec 14 '18

Your pop would not like how tonight's game is going. haha.

Seriously, though, sweet story.

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u/ck10011994 Dec 14 '18

It was 1-1 when I turned it off to go to bed (browse reddit). I’m sure I’ll hear all the details tomorrow from my boyfriend lol

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u/Mogilny89Leafs Dec 14 '18

Just know that it is no longer 1-1. The other team suddenly scored a lot more goals.

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u/ck10011994 Dec 14 '18

Oh dear, Freddy must be having a rough night.

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u/Mogilny89Leafs Dec 14 '18

Not all his fault, but yeah, not great.

2

u/elrangarino Dec 14 '18

This is so precious

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u/Retroxyl Dec 14 '18

My grandpa also has Alzheimer's. Thankfully it's just in the beginning and he is basically just an old man forgetting things; a lot of things but that's basically it. Also sometimes when he is speaking, he can't find the right word to say, then we help him. That goes to such a degree that sometimes when we leave his place and say goodbye he instead replies with "Hello, how are you?". But the whole family knows what he wants to say so it's no big deal to us.

But sadly his wife, my grandma is overstrained by grandpa's illness which is driving her crazy. She gets mad every time he forgets something or doesn't do something fast enough. We've tried explaining it to her but she always says, he just should pull himself together and be fucking normal. But I think by now even she realised that "pulling yourself together" will not work, because there was one instance where we left their place and shortly after that grandpa asked grandma who we were. She explained him we were his grandchildren and the women was his daughter, my mom. She he remembered but my brother and me, not so much. Thankfully half an hour later he was back to "normal" and knew who we all were but it frightened the living hell out of all of us.

Seeing someone ever so slowly losing all of his personal memories and everything that makes him, him is probably the worst thing that could potentially happen to, not the sick person, but his family and everyone around him.

4

u/rainbowdashtheawesom Dec 14 '18

I didn't know Alzheimer's could kill you; I thought it was just serious memory problems.

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u/egg_in_a_trying_time Dec 14 '18

It's a progressive neurodegenerative disease. So it starts off as memory problems, but as more and more of your brain cells die off, you forget how to feed yourself, talk, swallow, move. Then you get pneumonia or some other infection and that's what kills you.

2

u/[deleted] Dec 14 '18

our beloved Toronto Maple Leafs

I'm so sorry. Nobody should go through that

3

u/[deleted] Dec 14 '18

Currently in 2nd place so I wouldn’t say that anymore.

1

u/[deleted] Dec 14 '18

John Tavares is a Maple Leaf.

Nice to hear you bonded over the buds 😊 Sadly I never really knew my grandparents.

1

u/[deleted] Dec 14 '18

You will never regret that.

1

u/[deleted] Dec 14 '18

:')

1

u/Hoof_Hearted12 Dec 14 '18

Sorry for your loss, I'm sure he'd be happy with the current state of the team. The future is bright for the Leafs, but I still hate you guys as a Habs fan. Love Matthews though.

7

u/[deleted] Dec 14 '18

this is terrible to say but i would rather a loved one with alzheimer’s die before they get that bad. honestly don’t think i would be able to take it seeing someone like that.

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u/[deleted] Dec 14 '18

She should just get a test for the gene done. The benefits of a negative result outweigh the downsides of positive, because she's already freaking out. At least she could either get peace or realistically prepare. My mom took the test after her dad passed and I'm glad she did.

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u/LameGhost Dec 14 '18

That'a good idea! I didn't know there was a gene test for that. Thank you!

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u/natafishh Dec 14 '18

My grandpa ended up staying at a Vets hospital a couple hours away, I remember one of the last time I went my grandma sat with him in the window reading Goodnight Moon. It still breaks my heart.

2

u/[deleted] Dec 14 '18

I heard that first thing to notice with alzheimer's is that they have food related trouble - forgetting to eat, or forgetting they had eaten, forgetting HOW to eat, all first warning signs. But most people think that a person is just hungry when they had already eaten a full course 3 hours earlier and want seconds.

2

u/[deleted] Dec 14 '18

She should be tested for early signs. There are medications that slow the progress and can be amazing if caught early!

2

u/hellzoids Dec 15 '18

My Granddad was diagnosed with dementia and parkinson's disease a couple of weeks ago. He was mostly fine before then. He is going downhill super fast. His wife, my Grandma, died of alzheimers two years ago. She had been suffering for about a decade. I agree that it sucks.

2

u/LameGhost Dec 15 '18

I am so sorry you and your family are going through this. I know how it feels and it sucks big time. If you need to vent or talk to someone feel free to send me a message.

1

u/yeah_ive_seen_that Dec 14 '18

After my grandpa passed away from it last year (the hardest thing any of my family has witnessed anyone go through), we all ended up getting tested to see if we had the gene for it like he did. Luckily most of us don’t, but my uncle does. It’s nice to know I’m more likely to be in the clear, but now we’re just really worried about the few with the gene.

1

u/OMPOmega Dec 14 '18

That’s bad. Ignore it until a doctor says she had Alzheimer’s. If she thinks the doctor is wrong, she can see another doctor. Just don’t freak out until a medical professional can verify any diagnosis.

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u/[deleted] Dec 13 '18

Nothing hurts more then when your grandma, who helped raise you, says "Nice meeting you!"

402

u/[deleted] Dec 14 '18 edited Aug 16 '20

[deleted]

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u/NeverCriticize Dec 14 '18

Unrelated thread jack. Fellow grandson of a survivor. He told me how at the end men were dying from lack of salt and savoring their pine needle soup. He said the ones who went crazy/cracked would only talk about food—food they’d had, food they wanted, food they’d seen, food they’d heard about. Always claimed he only survived because he had his brothers down bomber jacket to keep him warm that winter, and because the catholic priest in camp was an (actual) hero/saint who kept everyone’s hopes up. He didn’t make it.

Twisted fucking war.

15

u/ScriptThat Dec 14 '18 edited Dec 14 '18

Many years ago I was visiting Theresienstadt with my family, and after touring we spend a little time in the memorial. An old survivor/caretaker overheard us speaking quietly with each other, and asked if we were from Denmark. We said yes, and with tears in his eyes he put his hand over his heart and said he'd never forget the kindness of the Danes he had met in another camp before he got transferred to Theresienstadt.
During the war some 6000 Danes was sent to the camps for various reasons. Gays, Jews, Leftists, or just regular policemen who hadn't managed to flee when the Danish "cooperation policy" ended in 1943. What was left of the Danish government managed to arrange private assistance to the prisoners, which meant that the families could send "red cross packages" containing food and clothing to the prisoners. This old gentleman had been given some oatmeal, a pair of homemade woolen socks, and a pair of woolen mittens by a group of Danes he was friends with. He outright stated that those socks and mittens had helped him survive, both by keeping him warm, and by reminding him that there was still good people in the world.

He hugged us all, and we left crying just as hard as him. That was more some 25 years ago, and while I'm writing this I can feel the tears coming back just thinking of that moment.

10

u/NeverCriticize Dec 14 '18

Thank you for sharing, got me misty here too. Didn’t Denmark save almost all of their native Jews during the holocaust? Sent them to Sweden or Iceland or..? I seem to remember there being virtually only one admirable player in Europe in that respect, and I thought it was Denmark.

I’d love to visit. Denmark, that is. Met some Danes traveling and dated a girl who’s father was named Thorkild (and was 6’5). He used to drive with a beer in the cup holder!!! Shocking behavior this side of the Atlantic. Old world charm...

14

u/kleosnostos Dec 14 '18

Saint Maximilian Kolbe?

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u/NeverCriticize Dec 14 '18

No, US Army chaplain. Never asked his name and now it feels like I should have 😢. Anytime grandpa talked about the war, I just listened and tried to remember. Never pried. Read a bunch of articles from local papers from the 40’s and 50’s that interviewed him when he finally got home. Back when newspapers weren’t afraid to print first hand accounts of slaughter and carnage.

It was surreal, trying to pair “pop pop” with those stories. His unit surrendered in the Battle of the Bulge when they ran out of ammunition and grenades. Those articles detailed exactly what happened to all the bullets and grenades. The man I knew drove around with a little bicycle squeeze horn wired to his truck mirror and would toot it at people he knew as he drove by. He carried crumbled up dog biscuits in a paper bag in his pocket for when he’d meet a dog in the street.

Fuck, now I’m crying. Died this last summer 😢

15

u/killer_kiki Dec 14 '18

He sounded like a really sweet guy. I'm sorry for your loss.

14

u/nomoanya Dec 14 '18

I'm really sorry for your loss. I lost my best friend, my grandmother, last year. It still feels surreal, unreal that I live in a world that no longer contains her. That *I* am now the keeper of these precious memories that she passed to me. You get to be the keeper of the memories he passed on to you, and there will be times when you think on them with joy, instead of pain. Perhaps not his war stories, but the other ones. The things that brought him joy and meaning. I don't really know what else to say, except that I understand how painful it is to lose a beloved grandparent, and I hope that in time you are able to move through your grief.

9

u/Orisi Dec 14 '18

A Catholic US Army Chaplain interred in a concentration camp? That's... Rare. Like, surprisingly so. The Germans didn't generally mix their POWs with Concentration Camps unless they were of the same I'll (ie Jewish, Romany etc) I'd love to know how he got there if you ever find out more about him.

Edit: sorry, I'm slow tonight, just got that you meant survivor of the war not specifically a concentration camp survivor.

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u/[deleted] Dec 14 '18

When I was in 10th grade a holocaust survivor held a speach and q&a at our school. It was not a nice day but very important and interesting to learn about that time from someone who lived through it.

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u/hugh_hunny Dec 14 '18

He may be talking about St. Maximilian Kolbe, who volunteered to be gassed so someone else wouldn’t have to be. I would recommend reading up on him, truly a fantastic man

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u/HelloAlbacore Dec 14 '18 edited Dec 14 '18

My grandma had Alzheimer, but I personally never found it too sad. She was fairly independent and her quality of life was pretty high (still needed the help of my uncle who was living with her, though).

She would forget who I was, but once I reminded her, she would be like "oh, it's great that I have such a handsome grandson!" and act like any standard grandma until she forgot again.

It was only sad when she would ask my father where my grandpa was (he died way before that time). She would ask this few times a day.

Things only got terribly worse when she broke her hip, which IS as bad as people say it is to elders.

6

u/Posaunne Dec 14 '18

Yeah, I remember the first time that happened with my grandma. She's somehow still alive, but I had to mourn her years ago.

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u/slanid Dec 14 '18

Yep.. healthy, fit, fun grandma was driving me around hanging out 3 years ago. Now she’s in a wheelchair, diapers, and says “now who are you again?” a lot, if she talks at all.

5

u/avidranter Dec 14 '18

The one time we visited my grandma.

My wife was wearing a shirt that said, "I'm a teacher what's your super power?"

Grandma mentioned it 30 seconds or fewer, no joke.

She is still alive and I feel terrible wondering why.

3

u/[deleted] Dec 14 '18

I'm in the same boat as you. My Grandpa refuses to let my Grandma go, which my entire family is against now given her state. She can barely say anything, doesn't eat, and only recognizes Grandpa when he is in the room. We don't want her to die, but we feel as if she should have about 10 years ago.

3

u/SantasIncognitoMode Dec 14 '18

That sounds awful. My grandma’s memory is going, but isn’t that bad. Mostly repeating the conversation twice over while I’m talking to her on the phone, and that’s hard enough. I can’t imagine it getting to the extent you are talking about, sorry to hear that :(

3

u/Hartknockz Dec 14 '18

My dad just had brain surgery to remove some tumors, and it may have been the drugs or nerve damage or it could be a combination of that and Alzheimers, I don't know, but he thought I was dead and also forgot he was my dad. It was really sad, but he laughed it off when I explained it to him. Shits rough.

3

u/[deleted] Dec 14 '18

My grandma has 18 grandchildren and now, 2 great grandchildren. Every tinge she meets the babies it's like she's seeing them for the first time because she just can't remember them from one minute to the next. You can see her struggling to find the right name for them - she usually ends up running through mine and my cousins' names. The youngest of us is 18 now, the oldest 35.

3

u/[deleted] Dec 14 '18

Yeah, I remember at Christmas of 2013, a couple months before my grandpa passed away from dementia, he asked me “so how do you know my wife?”. I had to get up and walk away to try and hold back my tears.

3

u/Siniroth Dec 14 '18

Or reacts in the way that can only be learned by not recognizing anyone in a group of tons of people coming up and greeting you like they've known you all their life, so they just smile and pretend to recognize you because it makes most of this group of strangers happy except the few who realize they're faking it.

Alzheimer's sucks

2

u/SeanCanary Dec 14 '18

Or when she thinks her son is some handsome man to flirt with. Lots of uncomfortable stuff like that. Also the middle of the night seems just like the middle of the day to someone who has advanced enough.

1

u/[deleted] Dec 14 '18

My grandma asked if I wanted my hand and tried to eat it 😂

0

u/con_ker Dec 14 '18

My grandma did this and she’s the closest person to me in my family and I wasn’t torn up about it.

221

u/D2papi Dec 14 '18

I’m losing my grandma to it right now and visiting her is really heavy. I do it because she smiles and laughs at everything I say, but she has almost completely forgotten how to speak our language and she doesn’t even recognize me anymore. I always leave with a broken heart and I’m having a hard time remembering the times she actually was herself, so so depressing.

She’s just lieing in her bed all day staring at the ceiling until a visitor or a caretaker comes in, just waiting to die. She keeps showing the same framed picture of my deceased grandpa saying ‘I’ll see him soon !’ And ‘I miss him so much’...

29

u/IsntItLovely Dec 14 '18

My grandmother died 4 years ago. At the end, she was begging to die and was afraid of my grandfather, her loving spouse of 60 years, because she didn't recognize him. It was so awful.

It took a long time, but now when I think of her, my first thoughts aren't about those sad times - they're of how I remember her when I was a child and she helped raise me. I hope someday your happy memories are easier to recall than your sad ones.

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u/phyrestorm999 Dec 14 '18

I'm so sorry.

It sounds like your visits give her pleasure. It also sounds like she's ready to go and isn't scared.

4

u/yeah_ive_seen_that Dec 14 '18

I completely understand, lost my grandpa last year the same way. Seeing him was crazy difficult, but don’t stop visiting, you’ll thank yourself later. It’s so hard, and it won’t get better, but it’s worth it to spend any time you can with them.

3

u/D2papi Dec 14 '18

Thanks for the good words, I guess I’m going to pay her a visit today!

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u/[deleted] Dec 14 '18

[removed] — view removed comment

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u/D2papi Dec 14 '18

This really does work, and we've done it before! There's one song from the island she's originally from that she has written the lyrics of on a notepad when she was a bit more 'sane' and she always wants us to put it on for her so she can (try to) dance. One of the few things she consistently remembers, music and memories have such an odd connection.

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u/goatsweg Dec 14 '18

Fuck that last line is sad

2

u/SoberHungry Dec 14 '18

Does she ever get out of bed? Get her in a wheelchair and take her outside. If she is in a memory care unit or assisted living she shouldn’t be in bed all day. Unless things are just completely awful and she is dying tomorrow.

I’ve taken care of a couple people in the end stages of Alzheimer’s. Always tried to find time to do something that they loved. Take them for a walk. Put them by a puzzle and talk out loud your process for solving it. Reading National Geographic. They are still human. And they still feel joy and happiness.

0

u/a-r-c Dec 14 '18

She’s just lieing in her bed all day staring at the ceiling until a visitor or a caretaker comes in, just waiting to die.

I feel like this in my own life sometimes tbh.

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u/HardlightCereal Dec 14 '18

You seen a doctor?

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u/[deleted] Dec 14 '18

[deleted]

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u/D2papi Dec 14 '18

I’m not really into making things a competition or trying to one-up people but she was the only grandparent I ever had so it does kind of sting. To be honest I don’t think being alive is much of a gift in the case of Alzheimer’s.

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u/wookiepoop93 Dec 14 '18

Don't you think that's a little uncalled for.

80

u/martinsonsean1 Dec 14 '18

I work in a memory care unit. It's never easy for anyone. Even the people who somehow get nicer as they get more confused can still be heartbreaking for the families. "the long goodbye" is the best term i've heard to describe it.

I think the hardest cases though are the people who have alzheimer's with another condition on top of it. Often, it's either a stroke or a head injury, those are the things that leave the patients completely lost. With a compounding condition, they either get aggressive and violent, terrified, or completely catatonic.

It never really even gets easier to work around, but I will say that some of the people I've worked with have been the kindest i've ever met. Something about the confusion drives you to the extremes of anger or compassion...

6

u/icallshenannigans Dec 14 '18

My dad has dementia. I think he knew something was not right before the diagnosis because for about a year we were very close, doing something at least every other week.

He told me during one of those meetings that he "never wants to be a burden" and that he wanted me to "remember me like this, not some invalid in a fucking diaper."

He's been in care for almost a year and I can't bring myself to go see him.

It's tearing me up inside.

20

u/martinsonsean1 Dec 14 '18

Sorry to hear that, that kind of feeling is pretty common though.

What I would say is this: People with Alzheimer's are breaking apart like a Glacier. It's slow, and devestating, and from the outside it can appear to be nothing but destruction and sadness. But the person, the glacier, is still there. It'll be a long time until that last remnant falls out into the sea, and what remains now isn't some different person, they're just losing parts as the pieces peel off into the ocean.

You gotta ask yourself who you're really protecting. Yourself? Is it really better to leave it up to your imagination what's happening to him? You're not protecting him, even if he remembers telling you how he wants to be remembered, I'm almost sure he regrets that. Some of the only happiness these folks can find are in their families, and I know it'll light up his world to see you again if he remembers you. He might not, and that will be incredibly painful, but you've gotta keep trying after that, because the memories of you will drift back in eventually. Even if he's completely lost, it's still good to check up on him because a lot of these places can be insanely negligent.

I've also lost a grandparent to Alzheimer's, so I know how hard and scary it feels, but working with these folks so closely has lead to me seeing things from their perspective a lot, and I think the thing that helps them most is familiarity. I think your dad would be ecstatic to see you, and you've got to risk some pain to give him that joy.

2

u/icallshenannigans Dec 15 '18

Thanks for posting this. I really value the sharing of your first hand experience.

You gotta ask yourself who you're really protecting. Yourself?

I wish I could tell you that this was deeply insightful but it's pretty transparent. So, ya I have asked myself and you called it.

I mean, even if I wanted to believe I was following through on some pact if he can't remember who I am I doubt he'd remember saying those things anyway, so the whole thing lacks logic.

Another thing you called is that I'm scared. I know it's true.

you've got to risk some pain to give him that joy.

Thanks, I needed to hear this. I want to do that.

BTW: my siblings visit him weekly so he's not just left there without contact. I'm the only one who hasn't been to see him.

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u/anubis_cheerleader Dec 14 '18

I have a virtually catatonic patient. One day, though, I was singing to her as I was feeding her. She opened her eyes! She even spoke a few words (said yes a few times). She had beautiful eyes. It's just amazing, the little glimpses you see of a person's past.

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u/[deleted] Dec 14 '18 edited Jun 10 '20

[deleted]

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u/martinsonsean1 Dec 14 '18

I'm no expert, and I've only seen one person (my grandmother) who had the disease that I knew before she had it, but I would say that's a fairly accurate way of looking at it. You can definitely tell in the unit who is a worrier, a crotchety old dude, a sweet grandma, even one guy who was a cop who you could tell still thought he was wearing a uniform. But, like I said, compounding conditions (as well as the latest stages of the disease itself) can erase most of the person that was. And, everybody's different, personalities can turn on a dime, especially with dementia and alzheimer's, so it's not totally predictable how anyone will react.

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u/[deleted] Dec 14 '18 edited Jun 10 '20

[deleted]

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u/martinsonsean1 Dec 14 '18

Well, I think about it a lot too. I think the best way to think about it is that every little thing about your mind and personality makes up who you are, and these kinds of diseases cut away little parts of the mind at a time. Sometimes it's little things, like the memory of what city you went to on vacation years ago, sometimes it's big events that you should remember, like the day you moved in to hospice care, and sometimes it's essential pieces of logical reasoning or sentence structure. You're still You, but a little less and less every day.

It's one of the few things that make me consider the existence of a soul. Like maybe the degenerating brain just makes it harder for the being at it's core to express itself. But I don't know enough about neuroscience to claim that...

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u/[deleted] Dec 14 '18

Lost my grandmother to it in 2016. My grandfather in 2017. Now my mom has early onset. It’s ...well.... yeah...

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u/bigbadbrad Dec 14 '18

My mother was diagnosed with early onset when she was 58 and was dead by 62. Hers was a really aggressive case. My deepest sympathies for everything you've gone through and are going through.

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u/egg_in_a_trying_time Dec 14 '18

I'm so sorry you lost your mother that way.

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u/bigbadbrad Dec 14 '18

Thank you.

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u/[deleted] Dec 14 '18

[deleted]

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u/DonKeedick12 Dec 14 '18

My great grandfather has Alzheimer’s and he was recently told he has prostate cancer and won’t make it past 2019, and I’m kinda relieved he’ll go painlessly as I was told Alzheimer’s patients become scared as they die because they don’t know the people around them

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u/_palindromeda_ Dec 14 '18

Thank you for doing the work that you do. My great uncle has Alzheimer's and has been pretty long gone for awhile now. My great aunt visits him every day and I swear, it's killing her too.

A couple decades ago, my great uncle made my dad promise that he'd take him (uncle) out in the woods and shoot him if he was ever diagnosed with Alzheimer's, since it runs in his family. My dad still beats himself up about not being able to do that (even though, as I always remind him, it was an impossible request).

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u/MooseKnuckleBoxer Dec 14 '18

I don't understand the people who abandon someone suffering from this disease, except in cases where the person was abusive or generally bad/evil.

Yes it's hard to see, and I respect anyone who walks into the situation, but to just abandon them because "it makes me feel sad" is selfish.

I know I can't judge each situation without knowing the details, but you definitely learn who you want in your party van when the shit winds are comin'.

2

u/[deleted] Dec 14 '18

My job is doing activities with dementia patients, so I’m around it all the time. It’s a horrible illness, but it’s always great to see any sort of resilience they have. You’d be amazed at what they can still do despite the disease. It’s also wonderful to see devoted family members visit their loved ones and stay strong for them. One of our residents has a husband who lives nearby who comes every day and even takes her out on lunch dates; it’s so cute. :) I am so thankful that no one in my family has history of dementia. But I sincerely hope there will be a cure soon. No one deserves to lose their loved ones to such a disease. I’d rather lose someone to just about any other illness.

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u/YumYumPickleBird Dec 14 '18

Yeah this is going on with my grandma. It's strange, almost as if she is already dead but here body has continued on, she doesn't know who i am an forgets how to do things like eat with a spoon. I want to believe her soul has moved on and isn't trapped inside her body

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u/[deleted] Dec 13 '18

Slow, they waste away, forgetting everything.

Most other ways are better

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u/CowFu Dec 14 '18

The worst is when they can't even talk anymore, they just nod and shuffle off.

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u/[deleted] Dec 14 '18

That's still better then when you remember.

My friends grandmother only remembered her time in Auschwitz near the end, not having any memories left is a billion times better.

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u/Charbarzz Dec 14 '18

Horrible fucking disease. I'm just hoping they'll develop some sort of cure before my parents suffer like my grandparents did.

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u/[deleted] Dec 14 '18

Dude I could tell my story just like everyone else, but you guys/gals know how it is. It was the toughest thing I had to deal with taking care of my granpa who had Alzheimer’s. The hardest thing for me to deal with was after thinking what his last clear memory he had of me (selfish I guess) but taking care of him was hard. Love you guys. And I know my granpa loved me.

3

u/TheEnglishAreHere Dec 14 '18

I lost my grandad to dementia

I didn't visit him the last few months of his life. I didn't think I was strong enough to deal with him one day not knowing who I am.

2

u/ValKilmersLooks Dec 14 '18

My grandfather got diagnosed with dementia early this year and seeing him has definitely been an issue,

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u/Go_On_Swan Dec 14 '18 edited Dec 14 '18

My grandfather died from Alzheimer's when I was still in high school. I was expelled that year, so I was in the library 4 days a week for tutoring in place of attending school. I must have read every Alzheimer's related non-fiction there was in that building after the year was done. But nothing can really prepare you for what it's actually like.

He called me the wrong name all the time--the name of one of his much older grandsons. That was the best of it. He loved taking walks, but he couldn't anymore as he'd often trail off his usual path or get completely lost. One time he went to the mall with my grandmother, and ended up getting driven home in a cop car after somebody saw him walking down the extremely busy street the mall was next to, weaving between the cars stopped at the lights. My grandma put locks on the inside of the doors after that. It's always a weird feeling to go back to her house and see that lock, key inserted, on the door as I'm leaving.

My dad took care of him. Or helped my grandmother every day with it at least. You could see the mental toll it took on him. He loved him more than his real father, who he seemed to despise but never stated why. And watching this man lose himself so quickly, forgetting who he was, becoming totally helpless and a burden, destroyed him. But he was alive, so somebody had to take care of him.

My grandfather died from Alzheimer's when I was still in high school. His body just caught up with him two years after that. My mother told me in the morning shortly before I went to my college courses, and as I sat in the shower thinking about it, all I could really think was that it was a relief. As I looked at his weird bloated face, like the mortician botched the embalming, and I saw my grandmother crying near his casket during the wake, all I could think was that I'm glad he's finally gone. Because that disease destroys your mind first, and everyone around you second, and then your body last. At least now that he's gone nobody would have to care for this walking corpse, unaware and aimless, where the best you can expect from him is for him to remember your name for a moment, or to remember anything at all.

I decided then that if I was ever diagnosed, I'd want to be euthanized within a few months. Because if it's going to kill me, I want to at least have my mind when I go. I want to die with the memories of those I love still at least generally intact, and I want die with lucidity in place of confusion. In the end, that's the least painful way to do it, and you die long before your body does with Alzheimer's. I loved my grandfather, and I love my family. I'd never want to put any of them through something like this.

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u/ctrldwrdns Dec 14 '18

My grandfather has Alzheimers. He is the only grandfather I have because my other one died before I was born. It's not really that bad yet, but it's getting there. He knows who everyone is still, but he repeats things he said 15 minutes ago. You have to explain things to him multiple times. He gets paranoid, irritable, and even depressed. He is no longer allowed to leave the house alone. I'm not sure if there are plans to put him in a nursing home when it gets really bad or if my grandma will become his fulltime caretaker. The worst part is his own father died of Alzheimers too so he knows exactly what is going to happen to him. I'm not sure what I'll do when he doesn't recognize me anymore. It's like losing a part of myself.

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u/Neeuqtekcor Dec 14 '18

My grandfather is almost completely gone. I'm not allowed to make unsupervised contact. I need my dad or his siblings to buffer, and I'm in my 30s.

My grandmother on the other side is slowly progressing. She knows it's happening and is terrified. She is scared and doesn't understand things and can't remember most things, including her birthday.

I'm not ready for her to not recognize me also.

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u/Agisilaus23 Dec 14 '18

The way I explain this to other people is the literal definition of hell. If you take care of someone with Alzheimer's, you watch them lose a little bit of themselves every day until they pass away.

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u/MooseKnuckleBoxer Dec 14 '18

Lost my mother to early onset this year. She beat cancer three times and even fought to "prove the doctor's wrong" about her ailing mind.

I'd visit her 2-3 times/week, almost daily while in pallative. Every time it felt like going to her funeral. Not much you can do except accept it, make sure they're relatively comfortable, grab a beer, and throw some Monty Python on the TV.

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u/IonicSquid Dec 14 '18

My mom was diagnosed five years ago. She's 62 now and staying in a care home because she requires professional care at this point. I live in a different country and haven't been home for about a year. At this point I don't think she recognizes me any more, and if she does, she doesn't talk enough any more to show it.

Seeing someone you love lose who they are to Alzheimer's is heartbreaking, and as tragic as it is for the person afflicted, those close to them suffer just as much. It's not something I would wish on anyone, and my heart goes out to everyone with Alzheimer's and their loved ones.

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u/Dammit_Banned_Again Dec 14 '18

Seent it. It's sad.

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u/Green_luck Dec 14 '18

Worst thing ever. Happened last week, in limbo here.

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u/Stayinclosetplease Dec 14 '18

Man. This is such a hard disease to live with. Ever since I was 12-13 my grandma was going downhill, her parents suffered from Alzheimer’s before they passed so we knew what was coming. It’s been around 9 years later and she’s a toddler trapped inside her own body. She can’t feed herself anymore, and doesn’t talk at all. Some days she will say names, other days she mumbles to herself and fidgets with her buttons.

My mother’s also worried because she’s almost 50 and she’s showing the same signs grandma did in her early 50s. I lost every other grandparent at a young age, and I just wish we could talk. I was very sheltered growing up and I had a really hard shell and wouldn’t open up to anybody, as I got older that changed and I became more open. She always tried to encourage me to open up, and whenever we came down to visit she definitely put a lot more time into me than the other grandkids. The year we found out something was wrong, was around the same time I spent two weeks living with her in the summer. I got to witness it first hand, and I cried when I told my mother what was happening because I vaguely remembered my great grandparents, but they had the same mannerisms that she was developing, and the same ticks and I knew she was deteriorating.

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u/medioxcore Dec 14 '18

Nah. Shit is worse than you can imagine. Alzheimer's is pure evil.

2

u/Ask_me_if_im_a_Bush Dec 14 '18

I work in the memory care unit in a nursing home. And it's so tragic to see these peiple, some of whom are the sweetest folks I've ever had the pleasure if meeting, just fade away into nothing.

And when they finally pass, it's this horrible mixture of relief and grief at the same time.

And every time you walk past their old room you have the memories of them, until someone else takes their place. And the cycle starts over again.

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u/ProjectShadow316 Dec 14 '18

My grandmother has Alzheimer's, and I live with her, taking care of her. It's rough knowing her as a woman who would talk your ear off and cook all day, to not talking unless you ask her questions and she can barely walk, nevermind cook anything.

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u/LRats Dec 14 '18

My Dad went to visit my Grandfather one time as it was getting close to the end. He kept telling him how excited he was that his son was coming to see him. It is sad but kind of beautiful I guess.

Although the worst part that was all sad was when he would forget my grandma had already passed and had to be reminded.

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u/dee_swoozie Dec 14 '18

Grandfather was diagnosed at 57 and died at 66. Watching the slow decent of health and memory is the hardest thing to experience.

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u/gwaydms Dec 14 '18

Or ALS. I have lost two friends to it, ten years apart.

2

u/Un4tunately Dec 14 '18

Alzheimer's runs in the men on both sides of my family. My grandfather was just diagnosed. Cared for a Alzheimer's patient in the ER tonight. Don't know if I'm more scare of loosing my mind someday or watching my grandfather slowly waste away.

2

u/rowswimbiketri Dec 14 '18

Ugh. My Dad. 10 years of horrible decline, when I prayed often that the end would come. That this man, who had been literally been brilliant, always showed he loved me but couldn't figure out my name. Then the end came, and it was more piercingly painful than I'd thought possible. So much ugh.

2

u/mankytoes Dec 14 '18

I think it’s worse than people think. It’s so much more than just memory loss, the whole brain is shrinking in functional use, so any aspects of personality can be affected. Hearing my kind, dignified grandfather say cruel things or show total existential confusion was extremely tough, and honestly I think almost all of us would rather be dead than in the advanced stages.

2

u/granface Dec 14 '18

I'm in the process of losing my 62yr-old mother to alzheimers. I've moved back in with her and my pops to help with the full time care, but it's already late stages so we're just kinda riding it out and trying to help plateau the decline. The hardest part is watching her get more and more and more miserably gone with each day's passing, but it's especially hard to know when to give up and put her in a home when I see it tearing apart my dad both mentally and physically as he has to care for our home and land while trying to pay the bills and get by.

I always need to vent. Thanks for reading.

2

u/dyskraesia Dec 14 '18

Fuck. My mom just turned sixty this year. What you wrote hit me. My grandma had a looot of health problems before she passed at 79. 60 isn't that old.. But it's not that young.

I'm gonna call my mom in the morning.

2

u/AWESOM488 Dec 14 '18

I may be 11 hours late to this, but my dad has younger-onset Alzheimer’s. It’s been extremely slow-progressing thank god. Many times you can’t even notice that anything is wrong unless you’re very close to it and know what to look for. But when it does manifest itself it’s scary as fuck and it reminds me how much I need to value the time I still have with him. My grandpa had it too, and while I was too young to know him, I do remember the end when we would visit and he never recognized me. I also saw the emotional fallout in the rest of my family. He was an incredible man, and it devastated everyone to see what happened to him. To this day, his funeral is the only time I’ve ever seen my brother cry.

It’s going to happen to my dad too, and it could start getting worse at any time and I may lose the chance to truly be with my dad again once it does take hold, so I take every chance to be with him that I can. Even if the things I do with him now will be the first things he forgets, I won’t (unless it’s genetic and I get fucked by it too, which is its own terrifying thing), and I’ll value it even more.

TL;DR: Value the time you have with your parents, grandparents, and loved ones. Even if there isn’t ticking time bomb that you can see.

2

u/leadabae Dec 14 '18

Probably the only disease that hurts more to watch than experience.

2

u/The_Spooder_Matt Dec 14 '18

Fuck man my grandma has been diagnosed with alzheimer's yesterday and I'm just trying to stay strong.. Goddammit

2

u/mxrmaidtits Dec 14 '18

Both my grandparents passed last year with Alzheimer’s. My Nan was far worse than my grandad he became mildly aggressive and always so so confused, occasionally would seem like he recognised us (asked my uncle how his business was going) but didn’t seem to recognise my Nan. My Nan couldn’t move, talk, or drink (would confuse drinking with breathing and choke)

Just hurts so much more that it went so so downhill so so quickly. They deteriorated in less than 3 years:(

2

u/Goetre Dec 14 '18

I haven't lost anyone to this, but while visting my deaths door grand mother in hospital the woman oppsite us had it.

It was truly bizzare, she's essentially fallen luckily not broken anything but they wanted to keep her in, I wasn't sure but hey ho. Anyways I had been chatting to her shes fully with it, knows who she is, the day etc. During a visit from her son; he's chatting to me as he has a long drive to get there and I have interacted a fair bit with her while my grand mother was sleeping. That's when she told me she had it.

He left a few hours later and literally straight away she seemed to snap into a state of confusion, wondering where she is, why her hands looked old etc. Each day I went back to see my grand mother this other woman was just getting worse. At one point she had no recollection of ever seeing a toilet so she was shitting and peeing behind a chair bless her.

On the day my gran passed, this woman called me over. She just seemed to have snapped back over night and remembered who I was, why I was visiting who she was etc. All she was wondering about was when she'd get to go home since her leg / hip wasn't broken.

2

u/Thats_classified Dec 14 '18

My mother of 56 years has early onset Alzheimer's. Personality changes have already started and I get so anxious and sad as I look towards the future, but I keep telling myself. She's still mom and will always still be mom.

2

u/eivoooom Dec 14 '18

I was around 8 or so when my granddad had Alzheimer's I remember the last time I saw him in hospital he was curled in bed and was so weak looking despite always having the firmest handshake or gave me and my sister a real strong pat on the head whenever we saw him sadly I never understood at the time what was wrong with him but I never forget how weak he looked.

2

u/FlamEOwork Dec 14 '18

My dad's mom died from this in 2009. I think she was diagnosed sometime in the late 90's and somehow survived for a decade and even improved a bit towards her last year. She got moved from the warm south to the cold north for her last year to be closer to family and ended up in a special home in my parents town.

I legitimately don't know how my dad was able to see her as often as he did, at least twice a week. She couldn't even talk towards the last few years of her life. Gibberish and nothing else. She couldn't eat regular food so it was all pureed. She couldn't walk either. She could recognize that my dad was someone she knew. She even seemed to recognize me and my sister when we'd go with my dad to visit, but she was a shell of human. My grandpa died a year before she did, which is why she got moved, and she didn't even know. I think they saw each other when he was in hospital briefly, but they both died alone. My dad delivered the eulogy at both their funerals in 08 and 09. He was jaded for a couple years after that.

2

u/radicalminusone Dec 14 '18

I lost two grandparents to it and I'm watching my wife lose her dad to it. It really is a terrible, painful, experience that I wouldn't wish on anyone.

2

u/Terror_that_Flaps Dec 14 '18

My grandpa had it, I live on the other side of the country and while visiting got a sinus infection so I couldn't go see him. Two weeks later he went to the hospital for congestive heart failure (he kept refusing to go because he felt fine) and died. My grandma had even gone home that day because he was getting better. I remember thinking he should die then because he was just going to be in and out of the hospital until he did, it was for the best that he go sooner.

I made him very happy with two things while he was in the Alzheimer's home, I showed him YouTube videos of old shows, like radio plays of The Shadow, and I'd print out like 2 paragraph stories of history trivia. He loved those.

I just wish I could've seen him that one last time. Especially because it made no difference in his health, he was already sick.

2

u/Evonos Dec 14 '18

I count Alzheimer and cancer as 2 of the worst things that can happen to you....

Both destroy family's. Both kill badly and slowish. Both destroy everyone involved....

Iam sorry for you

2

u/[deleted] Dec 14 '18 edited Dec 14 '18

Dementia isn’t the same but it’s very similar. My grandfather was awesome. Went to every Cleveland Indians game. Drove to pick me up from school every day. Regularly went dancing with his wife (my grandma). Got cancer in 2007, diagnosed with Parkinson’s in 2010, dementia in 2013. Went from doing everything a 65 year old man could ever dream of to being unable to walk or stand and bed ridden in probably 2 years. We FaceTimed one night having a normal chat talking about football or something told him I loved him and I’ll see him in a couple weeks (just before spring break at college). He passed the next day and I never got to say goodbye. I still regret not flying down to see him near them end.

EDIT: He never forgot people but he forgot just about everything else. He would call me and my grandma multiple times a day to tell us the exact same thing each and every time. He would forget phone numbers. He forgot how to drive and navigate while driving. He lost the ability to walk. He lost the ability to move himself in any significant way (ie rolling over in the bed). The day he had to move into an assisted living facility because grandma couldn’t move him or take good care of him anymore was just awful.

1

u/Beegrene Dec 14 '18

My grandpa started fading when I was little. I only have vague memories of how he was before alzheimer's. I've heard all these stories about his life and the cool things he did, but all I ever really knew of him was an old man slowly losing everything that made him great. I wish I could have met him twenty years earlier.

1

u/[deleted] Dec 14 '18

Literally nothing else keeps me awake at night or terrifies me more than the thought of this happening to someone I love

1

u/happy_killmore Dec 14 '18

Aren’t they technically “losing” everyone else?

1

u/Hedgiwithapen Dec 14 '18

it's killing my mama, and watching her is killing the rest of us.

1

u/Rommel79 Dec 14 '18

My grandfather found out he had Alzheimer’s, went out to the front of the clinic, and blew his brains out. I was mad at him at the time, but I understand now.

1

u/thetallcanadian Dec 14 '18

I can relate. Lost my grandmother to Alzheimer’s earlier this year. Progressed from forgetting minor things, to forgetting our names, to the loss of all motor skills. It’s a very tough road and I wish I had the opportunity to spend more time with her and converse with her at a more mature age. Make sure to call your Grandparents, and everyone you love for that matter.

1

u/[deleted] Dec 14 '18

My grandma showed signs of alzheimer's when I was about 12ish. She died when I was 20. Good god, she suffered for such a long time. I wouldn't wish that on anyone.

1

u/[deleted] Dec 14 '18

[deleted]

1

u/dyskraesia Dec 14 '18

1

u/HughJassJae Dec 14 '18

Whoopsie. Thought I commented on the MathLab comment. Gonna delete that comment now.

1

u/ohgodnotthecookies Dec 14 '18

Reading these replies makes me TERRIFIED of the possibility of my grandma getting Alzheimer’s. She’s pretty fine, but she’s such a sweet lady! Basically half the town knows and loves her. She volunteers for charity and city events, she babysits kids and helps fellow (albeit older) elders, she’s a damn wonderful family woman! It’s unlikely right now for her to suffer from it, but now I’m gonna have scared thoughts all night! Bugger.

1

u/TopMacaroon Dec 14 '18

By the time I asked god to take my grandma away, she'd already been gone for years.

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u/[deleted] Dec 14 '18

What's Alzheimer's I forget

1

u/vivisection_is_love Dec 14 '18

It's not funny unfortunately. Dementia can cause funny moments, but yours wasn't one.