Dementia/Alzheimers disease, etc: has anyone experience with it?

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My grandfather's sister is currently in hospital, and she doesn't know why, or where she lives, or who me and my sister and cousins are. My grandfather himself walks to the front door when he wants to go to the kitchen and literally doesn't remember five minutes ago. It's more than just forgetfulness, it's dementia.
We've always known that this would happen, since my grandfather's two other siblings were also losing their grip on reality completely in the years before their deaths. Their father probably had some form of dementia, although it was never actually diagnosed. But the fact that at one point he didn't recognise his wife or children anymore says enough.
My father and aunts will probably also get it. And me, too (I've always looked more, behaved more and thought more like my father's part of the family).

My brain has always been the only thing that sort of made me stand out, the only part of my body that has done some good things for me. And the thought of losing just that part that makes me little bit more than ordinary, or that makes me me for that matter, is one I can't stand (this, btw, is also one of the main reasons I'll never, ever, try anything more hallucinagenic than a cup of coffee, apart from probably pot, which only in some cases has this effect). I have no problem with ageing physically, as long as I have my brain doing what it should do, and as long as I can keep observing what's happening around me, relativise what's happening and so on; my grandmother is my great example here: she suffers terribly from arthritis but she still drives her car around, she took a computer course, she uses the internet, a mobile phone and watches the news everyday. My grandfather on the other hand, doesn't know how to use a normal phone, and everyday at work I see people who are completely freaked out by the mere existence of the pin/chip thingey. I don't want to become like that, but the chances are 25% (and probably even higher) that I will.

Now, I've always promised myself that I will get out before I don't recognise my sister or children (If I have any) anymore, and jump off some freakingly high building or something like that. But what if I forget that, too, in my shorter and shorter moments of lucidity? What if I completely lose myself, like my father's aunt, and only become a nuisance and a painful memory for the people I love? Seriously, I'd rather get cancer (no offence meant for people who have lost loved ones to this disease).

My question to you is, do you have any experience with dementia? Do you know people who have it? And please, please, can someone tell me it isn't as bad as I fear it is? (😉)
 
Skanky Vamp
Skanky Vamp
both my grandparents on my father's side had it, to varying degrees.. it is difficult.
I've always promised myself that I will get out before I don't recognise my sister or children
but you don't really realise that though.. it's just 'where the heck did i put my car keys' it's not as though you are really aware how bad you are.

And well, pardon me for being blunt but, talk is cheap. When the situation is staring you smack dab in the face and the reality of never seeing your children, grand-children or great grand-children again sinks in, I think you would sing a different tune.
 
First off my condolences, it's hard on the family. Thing is...even if you are old and feeble and have dementia, your family that loves you probably would not want you to be all that and alone. Its a tough row to hoe, thats for sure.

we went through it with my grandma's sister...Aunt Addie...and it was scary. She had Alz. and could not remember her 2nd husband of 30 plus years, she thought she was still married to her first husband who passed away during WW2. So when she saw her current husband she called him everthing from an old pervert to far worse, even attacked him.

What made this worse is that she reallly didn't recognize any of the family, except for me, and she thought I was her little brother...I think?

My grandma had passed away not long before Addie started getting really bad, and i felt an odd responsibility to look out after her for Grandma.

You just have to accept that you might have to do things out of character to help them cope, for instance in my case i hate to lie, but Aunt Addie made a liar out of me many times.

When she wasn't talking to me like we were old buddies planning her breakout or telling stories about things we never did but she remebered doing with her brother, she'd ask me...."I know you, you look familiar, who do you belong to."
I'd answer that i'm Laveda's grandson to wich she would demand to see her or beg me to sneak her out away from all the strangers.
Like a mook I first told her that her sister had passed away, she would sob and cry and in 5 minutes time be asking me who i belonged to again.

Potential for a pretty sad loop there, so I did something I don't like doing, I lied. It went from me telling her Laveda's busy and doing ok, to a more satisfactory "you know who i am" then we would plan her escape...

I think i became closer to my great aunt when she was loosing all her memories than I had ever been when she was fully aware. They don't remember much and that has to be terrifying, but if you help them mind that comfortable niche, or encourage whoever in your family is lucky enough to spark a memory flawed factually or not, you'll do a lot to help them, your whole family really.

If you were my family, paperdoll, and you were suffering under those circumstances i would not want you to just go away. I respect that you don't want to be a burden, but thats not always how people view those that need care. family does not take care of family because they have to, but because they want to.

Good luck and if you ever need to talk, I'm sure you know that you've got friends here.
 
I am sorry to hear about your situation. I would make the following suggestions.

1. Worrying about it (as it relates to you) is maybe counter-productive. Your ID here on the site lists you as 18 so chances are you will have a long, happy and productive life before this disease could affect you, which it isn't guaranteed to do.

2. Yes, use your brain. A lot of folks never do. They just go through life enjoying the "Instantaneous - Gratification" lifestyle. Learn a second language, learn a musical instrument, do cross-word puzzles or other brain teaser type activities. The brain is a muscle so put it to work, make it strong.

3. Here is my absolutely personal perspective so you can take it with a grain of salt or not, your choice.

DOCTORS ARE EVIL. What I mean is that like Marketing Executives they are in the business of FINDING diseases, NAMING diseases, RESEARCHING to find CURES for diseases and finally INVENTING MEDICINES TO SELL US.

25 or more years ago old people would regularly get SENILE in their old age. Forgetful, confused etc. etc. My Grandmother didn't recognize me at the end and thought she was back in her childhood home. But they didn't call it Alzheimers. Then along comes new technology that can pinpoint exactly what is happening in the human brain and they have to give it a name and it gets a lot of press and suddenly Alzheimers is a big problem.

Progress is great and obviously by identifying the causes they may one day find a cure but in the meantime the PANIC that this causes is a sad side effect.

So did my Grandmother have Alzheimers? I have no idea. Will I get it if she did? Possibly. Am I worried? Not at all because it is out of my control and to worry about it won't help.

Again, my condolences but the best advice I can give you would be to have a good life. One way or another we all end up in the same place. I could care a rat's derriere how I get there as long as it's after I turn 85, after a good life and with my boots on.

Uncle Rory
 
One of my grandma´s had it. She wasn´t someone I met every week (or even month)so it´s not like I had to live with it constantly. It came gradually of course and when I realised it was very bad was when we could talk for over one hour on the phone about three subject each of them taking like 2 minutes to go through. But when we did see her it was hard. I have to admit that I put my concentration elsewhere. Not that I ignored her or anything. More like we would take turns talking to her. I remember one christmas when she told us how happy she was to see us since she hadn´t meet us for so long. We´d been visiting her two days earlier. And she didn´t get what all the decorations were about. When my grandfather finally gave up on taking care of her on his own and she got into the hospital he more or less forbid us to see her. Since we´d only feel bad seeing her that way and even if she might know who we are for a few seconds but wouldn´t even remember that someone visited one minute after we left. Sounds harsh by him to say so I know. But with the trouble of traveling to see her anyway I did what he asked. So when she died I hadn´t seen her for about a year.

As for myself. I know females are more likely to get alzheimers but I still dread I get it. It´s not like it´s impossible or something. I don´t want to be dependent on anyone else if I don´t even know what I´m doing. I want my brain to work as good as it can. It´s not like it´s on top now as it is. But I´m 99,7% sure I wouldn´t be able to do anything about it if I would notice it (as in gradual memoryloss). I´d probably want to wait until it got worse and when I reach that point when I now think I wouldn´t want to live anymore, I wouldn´t realise it. So I´m just hoping for the best.

It´s a very hard situation and I feel for you. *hugs*
 
My grandmother has severe short term memory problems, but scans reveal no dementia or Alz, just a part of aging. She doesn't see hallucinations or anything, but she is as daft as a brush (see the vent I made yesterday) and drives my mother nuts. She asks the same question every 15 seconds, and sometimes can't remember what she is saying mid sentence (but hey, we all get that sometimes). She was always crazy, but now she can get quite nasty and say really hurtful things - she has lost her reasoning and ability to judge social situations, not to mention the self care. She has to have a cleaner now.

Some days she gets a little upset that she is 'all dafty' as she puts it, but most of the time she is completely oblivious to how her problem affects everyone around her. So for the person with it? In her case, not as bad as you might think, but for the carers? Bloody terrible, and relentless. My Mum can't help but lose her patience, horrendous as it may seem.

Sorry I can't offer you more hope than that.
 
My Gran has it...although she's only got mild Alzheimers although the doctor say it will more likely then not begin to degenerate again. Most commonly she asks the same questions over and over again, or calls everyone the wrong names, forgets where she's going or what she's doing...stuff like that. I'm just scared that it will get to the point where she'll have no idea who i am..
 
I don't have much to say on this, not had much dealing with it BUT there is a show in BBC 2 this Wednesday that I will definitely be watching.


Terry Pratchett: Living With Alzheimer's For BBC TWO, UK

Bestselling author, Terry Pratchett, is 60 years old and has recently been diagnosed with early onset Alzheimer's disease - but he's not going to take it lying down. He wants Alzheimer's to be sorry that it ever caught him.

As part of BBC TWO's documentary strand focusing on mental health and wellbeing subjects, BBC Headroom, where high-profile personalities tackle a subject matter of personal importance to them - we join Terry Pratchett as he journeys into his uncertain future living with Alzheimer's - a world ultimately without words.

Having sold almost 60 million books worldwide, Terry is a man whose imagination is in constant overdrive. The prospect of living without memories or words frightens him.

"I used to be a high speed touch typist. I laughed in the face of the spell checker. But then one day last year, it all started to go wrong."

Cont - Terry Pratchett: Living With Alzheimer's For BBC TWO, UK
 
Oh! I saw a trailer for that show. I haven't read anything he wrote but apparently he's a housemates favourite writer so I guess we will be watching together 😉
 
My aunt Betty died from Alzheimers last year. It was so sad.... watching her.... deteriorate. She was always so full of life, so fun to be around, great sense of humor, very witty & smart. The day the cousins had to sell her house & put her in a "home" was the saddest thing. She kept remembering a time when she was just married, & kept saying her "new groom" would be home any minute, & she had to make sure dinner was ready for him - she kept telling the cousins to "put my china back!" as they were moving things out of the house. God, it was sad.

I don't know much more about the disease, except that it robs you of someone you USED TO KNOW and love. That person really doesn't exist anymore, & neither do you, in their mind.

The last time I saw Aunt Betty, she thought I was 5 years old, and asked me how I liked my kindergarten teacher. I was 42 at the time. 🙁
 
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