This is so sad. I remember going to visit my great grandmother at her nursing home. She knew my Mom and her brother but she thought I was my Mom's sister. My mom was probably about 34 at the time and I was 8. She recognized her sons (my Grandpa and great uncle) and I remember her asking them to take her home. She knew she wasn't at home and she just wanted to go back there. I will never ever ever forget the look on my grandpa's face when she asked him that.
@kkatt: If this helps you at all, a very common believe in Alzheimer's dementia is the inability to recognize home as crampyscamp mentioned. People with Alzheimer's often leave their own homes when they can to wander and inevitably when asked where they are going (even while trying to get out of their own house) they will say they are "going home". Or they need to go home or some similar concept.
I've always found that spiritually intriguing given that the home they seek isn't the one they have.
It's true, you're "freed from your memory." But unfortunately (in my dad's case), I still had enough bad ones for both of us. And it drove me fucking nuts that so many people around him who had not experienced the truly terrible things at his hand that my brother and I did were so eager to have us make nice and pretend like everything was, and had always been, fine.
@Marsgaret: Here is a column from Newsweek you should read: [www.newsweek.com] It is about when relief is what we feel when someone dies. I am very sorry that you experienced this.
The father of a family member's co-worker (I know - awkward) recently died after a shockingly short battle with Alzheimer's disease. His family had just regretfully put him in a home because they weren't equipped to to take care of him.
Anyway, his daughter went to visit him a week or so before he died, and while he didn't remember her, she said she was surprised to find that he was really happy there. Apparently he thought his roommate was an old buddy and they were teenagers camping together. From what I heard, he was like that until he died.
Imagine: to be freed from your memory, to have every awful thing that ever happened to you wiped away - and not just your past, but your worries about the future, too. Because with no sense of time or memory, past and future cease to exist, along with all sense of loss and regret. Not to mention grudges and hurt feelings, arguments and embarrassments...And that's the fantasy, isn't it? To have your record cleared. To be able not to merely forget, but to expunge your unhappy childhood, or unrequited love, or rocky marriage from your memory. To start over again.
I was just fantasizing about this this weekend. It seems like I chew over the same things I've chewed over for years: this humiliation, that humiliation, this angry episode. Years!
There's a good chance I'll get Alzheimer's. I don't look forward to it at all, but I do look forward to losing all these bad memories.
@Maulleigh: There are ways to let them go for good while "sane". I'd start by reading The Four Agreements and then move onto The Power of Now. It takes a lot of work, but it's very freeing to not punish yourself for something over and over and over....
My grandfather doesn't recognize his own reflection anymore. The last time I saw him, he was trying to offer Cheetos to the man in the microwave door. Sometimes it's hard to find humor in the most ridiculous things.
@bureaucrette: Oh this made me so sad. My dad died last year after a long struggle with Alzheimers, and there were so many heartbreaking moments. The worst was when he woke up in the middle of the night and asked me 'Am I dead? is this hell?' The sensation of not beng able to know what is going on in their heads is really painful.
Watching my grandmother slowly dissolve into Alzheimer's over 20+ years (early on-set and slow-progressing) is a part of my childhood that stands apart from that of many peers. Her life was sad enough to begin with, and one would not accuse her of being a funny person even when she was well. That said, the disease is one which, thankfully, is eventually unnoticed by the person afflicted. Leleux makes a beautiful point - it opens doors for reconciliation that is cathartic for family and the afflicted alike. My grandmother, thinking I was her long-dead younger sister, was able to say those things which she had not been able to say 40 years earlier; and I hope that it made her burden lighter in her twilight years.
@AtomiClash: I'm sure you made a difference to her. I think the hardest thing to deal with (at least for me- both grandparents on my father's side had dementia and "lost" me before they lost my older brothers) is them not remembering who you are. I can remember so clearly the expression on my grandfather's face- knowing that he should know who I am, but really having no earthly idea. I think it takes a lot of strength to allow someone you love to do that.
Alzheimer's is prevalent in my family. I'm not sure if it's hereditary or not, but I recently had a conversation with my mother. She told me that after watching both of my grandmothers so mentally decayed at the end, that she's decided to stockpile pills so she can just end before she gets that bad.
What a terrible conversation, and what a terrible, terrible disease.
@Samanthrax: My mother feels the same way; she wants to go to the Netherlands for euthanasia if she ever faces the kind of dementia my grandmother suffers from. A lot of the stories here involve sufferers becoming lovely and kind, and capable of sharing feelings and thoughts in ways they couldn't before. My grandma, on the other hand, is angry and mean now, and just rakes my mom and her brother over the coals when they go to see her. Me, she just sort of nods at disdainfully and ignores. It's awful for everyone, including my grandmother, I'm sure, as I can't imagine being that full of anger is any more pleasant than being on its receiving end.
@Penny_Esq: Yeah, my mother's experience is that her mother turned angry, mean and spiteful thanks to the disease. The last time Mama went to see my grandmother was in the late 90s; she hasn't subjected herself to the torture since because it's awful to hear the things that come out of her mouth.
My own grandmother has Alzheimer's, and it was early onset. I have never met her for this reason. She demanded to be "locked away" because she was no longer the person she used to be and would only steadily worsen from there. I wish I could have met her and seen what she used to be; now, all I have is faded pictures I occasionally dig out of the many shoe boxes with pictures and the mental image of an ailing, frail woman who is at the mental age of a toddler at most.
@sarah.of.a.lesser.god (aka Mrs. BrutallyHonestHobbit): I firmly believe she did it with the intention of sparing her two daughters and other family members pain. My mother visited her in her nursing home in the late 90s and it apparently was very traumatic because this woman was truly no longer her mother. She did not recognize her daughter and said some truly awful things, the kind that slip out when you have no recollection of what polite is and who you are speaking to. It's just awful all around.
I am deathly afraid of either of my parents getting Alzheimer's. My father is 60, my mother 58. Watching someone fade slowly into the semblance of what they once were is just a terrifying, traumatic thought.
@musicpup rodstaff: I'm so sorry your family had to go through that. My dad is so young that when he's at places like the grocery store, people get really frustrated/angry because he constantly does things slow/wrong and they think he's an asshole or idiot. He has a lot of days where he just wants to hide from society.
@musicpup rodstaff: My grandfather, mother's dad, was ravaged by Alzheimer's.
He forgot he beat my mother and her siblings for YEARS, and killed my grandmother. He was a loving, docile man.
It tortured my mother and made my aunt, well, not happy, but relieved. It made my mother more angry than ever, and my aunt feel that since he suffered his whole life, up until that point, at least he had some years of peace.
I sided with my mother. We haven't lost our memories and we still have to live with everything he did. It was/is one of the worst and challenging life experiences in my life.
He died 3 years ago. Quietly, peacefully, in his sleep.
@rosasparks is entertained by bobby jindal: That's incredible and tragic and I don't know if I'd had it in me to forgive him, either. It seems unfair that someone who subjected others to that amount of physical and emotional torture should get an easy way out by forgetting. Those who witness the progression of Alzheimer's can never forget, nor should they. I'm sorry your family had to go through that. -hugs-
@sarah.of.a.lesser.god (aka Mrs. BrutallyHonestHobbit): That's exactly what I'm afraid of. My father has a tendency to be flaky, forgetful and bumbling; he's been that way ever since I can remember. How far could it progress - if he had Alzheimer's - before it would be noticed? I am so sorry about your father, and I think people should shut the hell up in grocery stores. The only time anyone ought to be worried would be when a customer is drunk or stoned out of their mind.
@haguenite: the fact that it is coming at us like a freight train and the powers that be seem to be sitting on their hands about it are really the more important things to be scared about.
keep in mind that there is no such thing as an alzheimer's survivor. nobody diagnosed with alzheimer's survives it. the only thing that survives are the relatives left behind, and being a caregiver for alzheimer's often can lead to an early grave due to stress alone.
we as a nation are not prepared at all for alzheimer's. there's no surgery, no chemo treatment, and no cure.
@rednrowdy: I would love to respond, but I'm not quite sure what your point is. I know there's no survivor's of Alzheimer's. I know it's degenerative, dehumanizing and then you die. This is why I'm happy I could put a legal, humane end to my life if it ever hit me.
@J.D.Regent: There are a lot of diseases that would make me scream for euthanasia, actually, but Alzheimer's scares me so much because my brain is just so me. I have never been a physical person, my life is inside my head. If I couldn't control that, I wouldn't know what to do with myself.
@haguenite: I figure it is more painful for the people around me than for me. It's the one blessing of Alzheimers that the afflicted is at some point spared the pain of consciousness of what is being lost. I'd sooner take euthanasia for an affliction that was causing me a lot of physical pain. I suppose I believe there is value to my life with or without my intellect.
@haguenite: This is kind of morbid, and it makes me terribly sad to think about it, but my mom has made it quite clear that if she ever gets dementia or Alzheimer's or some other condition that robs her of herself, she wants to go to Europe with friends and family, take a nice vacation, and then go to the Netherlands to die.
Oregon has had a Death with Dignity law for at least ten years, but you have to be terminally ill and within six months of dying in horrible pain. Washington just passed a similar law; former Governor Booth Gardner has Parkinson's and campaigned heavily for it, but he still won't be able to take advantage of it because it has the same strictures as the Oregon law.
@J.D.Regent: Yeah, it definitely would be more painful for those around you, especially when you stop "coming to" and realizing you're ill altogether.
I think euthanasia is a lot like abortion. Get it done if it feels right to you. If not, then don't do it/have one. Alzheimer's falls under the "unbearable suffering without possibility of recovery" (paraphrased) clause in Dutch euthanasia law, and I think that says something.
@haguenite: Not that I'm disagreeing with you, but I wonder when / how one can consent to euthanasia in an Alzheimer's case. At least in American debates about euthanasia, there seem to be proponents saying that people who can make their own decisions should be able to choose it, and I agree with this, but with Alzheimer's patients who go in and out of lucidity (and who probably wouldn't want to die until they were "out" more often than not), this would be much more difficult to discern.
@mysterygirl: You need to get your affairs in order the moment you get the diagnosis, basically. You can make sure it's done when you stop being lucid altogether, for example.
Alzheimer's unlocked two things about my grandmother no one ever knew: she speaks fluent, nearly unaccented French and plays the piano like a trained musician. She never did or spoke about doing either of those things until the day she sat down at the piano in the rest home we moved her to or the day she just stopped speaking English. It's been a bizarre journey.
@Triphena: My father's mother immigrated to the US back in the 1930s and never spoke any German because we thought she had lost it. After her stroke, she hardly spoke any English but suddenly was fluent in German again. The brain is a mysterious thing.
@sarah.of.a.lesser.god (aka Mrs. BrutallyHonestHobbit): my great granny lost her english at one point and only spoke hungarian, her first language. i think because you lose the things that are closest in time first, sometimes you appear to "gain" skills learned very early in life and later forgotten or neglected.
@sarah.of.a.lesser.god (aka Mrs. BrutallyHonestHobbit): Years ago I saw a show about a woman who had moved from Sweden, I think it was, to the US as a very young child back in the 40's. The family all began to study and speak English as home as much and as quickly as possible, she spoke English in school and her son said that as a child, she had always said she had forgotten all the Swedish she had known. And then she developed Alzheimers and forgot all the English she had ever known and spoke only Swedish for the last 10 years of her life.
I think that may be something like what's happened with my grandmother, like I don't think it's some savant quality, I think these were things she learned as a young woman and then, for some reason, put them away in her mind. Like, my mother distinctly remembers her mother telling her she couldn't help her with her French homework because she didn't know any. Which is just bizarre, because she didn't hide any of her other accomplisments or skills. It is, and unless there's some huge medical advance in the next year or so, will remain, a mystery to us.
@Triphena: My grandmother turns 90 today, and is fairly lost in her own mind with alzheimers. About two months ago, she reverted to using the "plain" speech that she grew up with as a Quaker (thee, thou). She has also started to get up at 4am "to do the farm chores" which she has not done since leaving Ireland. In a million years this is not where I would have guessed her brain to go, but it is extraordinary.
@Triphena: My grandmother lost all of her vocabulary -- in English and Ukranian -- except for an incredible array of curse words in both languages. I am not kidding you. For the last few years if her life, the only thing I ever heard her say were "blyat," "sooka," or "jesus fucking christ."
One of my worst fears is getting lost inside my own mind. I don't think I'd have the fortitude to find a bright side, per se, but this story is certainly an inspiration to try.
My dad is 61 and has early-onset. It can be really, really hard to look on the bright side of this, mainly because it makes him so depressed and impotent (i.e., he can't continue his business, find baseball box scores on the internet, measure foods for cooking), The only positive is that it has made him focus much more on his relationships with me and my sister and he has become so more open with his emotions and thoughts. So while it hurts every time he refers to my son Sammy as "Johnny" and my heart breaks when he can't remember the name of his own illness, at least he is not curling up within himself and talks to us about painful things in our family past before he can't remember them anymore.
@sarah.of.a.lesser.god (aka Mrs. BrutallyHonestHobbit): I'm so sorry to hear that. I wouldn't call my grandmother's Alzheimer's a blessing in any way, in large part precisely for this reason - I was sad for her, and sad for me, but heartbroken for my father. The idea of my parents no longer recognizing me rocks me to the core.
Nonetheless, at least in my grandmother's case, there were benefits for which I am grateful. After a lifetime of working hard and being tough as nails, stretching each penny to its farthest and demanding the best from herself and everyone around her, my grandmother was finally able to relax and just enjoy herself. I've read that Alzheimer's starts by taking off that social veneer, and without that need to present herself as totally in control and invulnerable, she was able to make a bunch of new friends, enjoy a glass of wine in the evening, take pleasure just in holding our hands.
@sarah.of.a.lesser.god (aka Mrs. BrutallyHonestHobbit): My dad turns 61 this year, and I'm constantly afraid of him getting sick, but I always figured we have a while. My parents getting sick and/or dying is my greatest fear, bar none. Good for you for coping with it well so far (it seems).
@sarah.of.a.lesser.god (aka Mrs. BrutallyHonestHobbit): so sorry to hear about your dad. My grandpa suffered, it was pretty awful to see someone you love become a different person. He died of a heart attack at 81 and I was actually sort of relieved because he was fully on the down slope at that point heading towards hospitalization and I didn't want that for him.
@tell Dolly Parton again: Realizing that you have to be a caretaker to your parent (one with whom you have a complicated relationship) is just so strange. I hope your dad stays healthy.
@Laulau: There can be certain benefits. Like I said, my dad is now in touch with his emotions in a way that he refused to be for my entire life. I saw him cry for the first time at Christmas, not because something had gone wrong, but because he just wanted to talk to me openly about our relationship. It was heartbreaking but also extremely therapeutic for both of us.
@sarah.of.a.lesser.god (aka Mrs. BrutallyHonestHobbit): Both grandparents on my father's side had dementia (never diagnosed as Alzheimer's), so I assume that my father will follow in their footsteps. My grandmother was so angry at my grandfather as he drifted away- and she hid her own symptoms as best she could (she was a very very clever lady and came up with all kinds of tricks). I hope that if my dad does end up that way that the rest of my family can find a little grace within ourselves to deal with the fallout.
@sarah.of.a.lesser.god (aka Mrs. BrutallyHonestHobbit): The bright side is, you still have him now. My dad died of cancer at 67 last year. I'm sure I don't have to tell you to treasure every moment you have together, no matter how imperfect it may be.
@Samanthrax: at the risk of sounding like a total dork -- did you ever read Strangers in a strangeland? There's the one part in which alien, Michael Valentine discovers human humor and his statement of it is "I've found out why people laugh. They laugh because it hurts so much… because it's the only thing that'll make it stop hurting."
@tomatoheart: I read that in high school when I raided my father's scifi collection for new reads. I think it's time for a re-raid and re-read. Didn't Heinlein write it?
@Speeble: yes, it's a Heinlein. To be fair, rereading it as an adult and a feminist woman made me want to throw things, but it was a huge part of my teenage life and lexicon.
@Samanthrax: Last night PBS had a special on Carol Burnett. I never realized how tragic her life was - two alcoholic parents who died young, poverty, having to take care of her little sister. But she is clearly hella funny.
i'm always surprised at the reactions i get when i tell people that i have two male assistants. they think i'm a total ballbreaker or sleeping with them. tee-hee, a woman bossing around men! so kinky!
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I've always found that spiritually intriguing given that the home they seek isn't the one they have.
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He died this past December. I did not cry.
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Anyway, his daughter went to visit him a week or so before he died, and while he didn't remember her, she said she was surprised to find that he was really happy there. Apparently he thought his roommate was an old buddy and they were teenagers camping together. From what I heard, he was like that until he died.
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I was just fantasizing about this this weekend. It seems like I chew over the same things I've chewed over for years: this humiliation, that humiliation, this angry episode. Years!
There's a good chance I'll get Alzheimer's. I don't look forward to it at all, but I do look forward to losing all these bad memories.
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What a terrible conversation, and what a terrible, terrible disease.
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It's not fun.
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Although I had to watch 3 Grandparents health (Mental & physical) deteriorate; not in a million years would I give up the time I had with them.
I am truly envious of people who get to know their grandparents as adult grandchildren.
I was a child when mine passed or became ill.
A grandparent is a special thing, something not everyone is lucky enough to know.
It is so very sad that you never got to meet yours.
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I am deathly afraid of either of my parents getting Alzheimer's. My father is 60, my mother 58. Watching someone fade slowly into the semblance of what they once were is just a terrifying, traumatic thought.
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He forgot he beat my mother and her siblings for YEARS, and killed my grandmother. He was a loving, docile man.
It tortured my mother and made my aunt, well, not happy, but relieved. It made my mother more angry than ever, and my aunt feel that since he suffered his whole life, up until that point, at least he had some years of peace.
I sided with my mother. We haven't lost our memories and we still have to live with everything he did. It was/is one of the worst and challenging life experiences in my life.
He died 3 years ago. Quietly, peacefully, in his sleep.
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Sorry, I amend my comment.
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@sarah.of.a.lesser.god (aka Mrs. BrutallyHonestHobbit): That's exactly what I'm afraid of. My father has a tendency to be flaky, forgetful and bumbling; he's been that way ever since I can remember. How far could it progress - if he had Alzheimer's - before it would be noticed? I am so sorry about your father, and I think people should shut the hell up in grocery stores. The only time anyone ought to be worried would be when a customer is drunk or stoned out of their mind.
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There's not a lot that scares me as much as this illness.
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keep in mind that there is no such thing as an alzheimer's survivor. nobody diagnosed with alzheimer's survives it. the only thing that survives are the relatives left behind, and being a caregiver for alzheimer's often can lead to an early grave due to stress alone.
we as a nation are not prepared at all for alzheimer's. there's no surgery, no chemo treatment, and no cure.
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@J.D.Regent: There are a lot of diseases that would make me scream for euthanasia, actually, but Alzheimer's scares me so much because my brain is just so me. I have never been a physical person, my life is inside my head. If I couldn't control that, I wouldn't know what to do with myself.
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Oregon has had a Death with Dignity law for at least ten years, but you have to be terminally ill and within six months of dying in horrible pain. Washington just passed a similar law; former Governor Booth Gardner has Parkinson's and campaigned heavily for it, but he still won't be able to take advantage of it because it has the same strictures as the Oregon law.
03/23/09
I think euthanasia is a lot like abortion. Get it done if it feels right to you. If not, then don't do it/have one. Alzheimer's falls under the "unbearable suffering without possibility of recovery" (paraphrased) clause in Dutch euthanasia law, and I think that says something.
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I admit it's tricky.
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I think that may be something like what's happened with my grandmother, like I don't think it's some savant quality, I think these were things she learned as a young woman and then, for some reason, put them away in her mind. Like, my mother distinctly remembers her mother telling her she couldn't help her with her French homework because she didn't know any. Which is just bizarre, because she didn't hide any of her other accomplisments or skills. It is, and unless there's some huge medical advance in the next year or so, will remain, a mystery to us.
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Nonetheless, at least in my grandmother's case, there were benefits for which I am grateful. After a lifetime of working hard and being tough as nails, stretching each penny to its farthest and demanding the best from herself and everyone around her, my grandmother was finally able to relax and just enjoy herself. I've read that Alzheimer's starts by taking off that social veneer, and without that need to present herself as totally in control and invulnerable, she was able to make a bunch of new friends, enjoy a glass of wine in the evening, take pleasure just in holding our hands.
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@rednrowdy: Hugs.
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MUST. RESIST. CRYING.
Ugh. Too late.
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How often that is true.
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i'm always surprised at the reactions i get when i tell people that i have two male assistants. they think i'm a total ballbreaker or sleeping with them. tee-hee, a woman bossing around men! so kinky!
le sigh.