This is topic If there's a devil, Alzheimer's is one of his greatest creations (Good news added!) in forum Books, Films, Food and Culture at Hatrack River Forum.
I recently went back to visit the l'Arche community I lived in a while back. As always, it was bittersweet, feeling like an outsider where I used to be home.
But as I was talking with one of the few assitants who remember me, I discovered that my friend Jane (the one from my landmark) has progressed into the latter stages of Alzheimer's.
Last time I visited, she was very vague on knowing who I was. But we still had a few smiles, and some laughs like she used to. Our own little in-jokes. The time before, she took a while to recognize me, but there were even more laughs and smiles. Time before that, she knew me when I reminded her who I was.
Now she doesn't recognize hardly anyone. Her physical condition is getting worse all the time, and she spends most of her time medicated so she doesn't injure herself by accident (she's always been lively and unconcerned about risks).
She was (is still) one of my dearest friends. And I'm terrified. I miss her so much even now.
There's no real point to this, except if someone has any advice on how to try to cope. I've never been through something like this before... Both my grandpa and my nana were never very close to me, and it wasn't so drawn-out. So... thanks for listening to me ramble, Hatrack.
[ July 02, 2005, 11:23 PM: Message edited by: Eaquae Legit ]
Posted by rivka (Member # 4859) on :
(((((EL)))))
My grandmother's descent into dementia was very slow. She spent over two years not recognizing her own kids -- but occasionally thinking a grandchild (who looks much as his father had as a child) was her son.
It's very difficult to deal with. *hug*
Posted by TMedina (Member # 6649) on :
Everything has a purpose, even if we don't understand it.
Which is cold comfort, but in the face of such pain, there is precious little else to cling to, save the memories of better times you carry inside.
-Trevor
Posted by Kwea (Member # 2199) on :
Bullshit.
Sorry, but for the last 7 or 8 years of her life my grandma, who had lived with us at one point, thought I was my father.
It is because of this type of thing that I believe in a clockmaker style God...one who made us, and let us free to live. I don't think this is to test us, or that psople we love go through this for some unseen purpose, nor do think it is all part of a plan specifically.
It is just the way it works, nothing more and nothing less.
Sorry you had to see her like this, and that she is gone although her body lives on.
Kwea
Posted by Eaquae Legit (Member # 3063) on :
Some of her is still there. She still has the talent of yelling the loudest most embarrasing things possible. I'm going to be making my visits more frequent. Before, it didn't feel urgent, but I want to be with her and love her still, while I can. And I will always thank God that I had the chance to know her.
Posted by Kwea (Member # 2199) on :
That is the same way I felt about seeing my grandma. Even though I always left in tears, heartbroken, there was no way my parents could have convinced me to not visit. We lived in MI, and she was in a home with her daughter watching over her in PA< so I didn't see her a lot, but I thought of her often.
I still do, years later, adn regret that I never really got to know her at all as an adult. She wasn't at my wedding, and never got to meet my wife.
But she is in my thoughts often, almost as often as my other grandama, sho I DID get to know a bit as an adult.
[ April 12, 2005, 01:53 AM: Message edited by: Kwea ]
Posted by rivka (Member # 4859) on :
Kwea, I understand that this is something that you feel strongly about. But it is something that others -- like myself, and I would guess Trevor -- also feel strongly about. Until such time as God comes to you and tells you to your face that there is no reason or purpose, you do not know.
You can choose to believe whatever you wish. But that does not mean it's ok to put down Trevor's beliefs . . . which I happen to share. I do not claim to know what the purpose is. I leave that in God's hands.
Posted by Kwea (Member # 2199) on :
He can think what he wants, but I don't believe it, and find the very idea evil and wrong.
I am not saying I know for sure, but if God meant for her to be that way, then I will see him in Hell, for that is where he belongs.
Kwea
[ April 12, 2005, 01:56 AM: Message edited by: Kwea ]
Posted by rivka (Member # 4859) on :
And I find the idea that God does not control every detail of the universe evil and wrong.
But I'm being very careful to not use insulting or inflammatory language. I'd appreciate the same courtesy from you.
Posted by TMedina (Member # 6649) on :
I don't believe, actually.
But I know there are people who do and draw strength from that belief. It would be remiss of me as a human being not to recognize that and offer what compassion I can in a form they could accept.
-Trevor
Posted by TMedina (Member # 6649) on :
And Kwea, I appreciate the strength of your feelings on the matter but is there any purpose to denigrating the comfort people find for themselves?
-Trevor
Posted by rivka (Member # 4859) on :
quote: I don't believe, actually.
Oh, good. I mean, not good that you don't believe . . . well, not bad, necessarily . . . uh . . .
*regroups* I mean, good, because I was very startled and thought I was seriously misremembering things you had said in the past. Glad to know I can keep you in your assigned pigeonhole, Trevor. Posted by Telperion the Silver (Member # 6074) on :
I work in a retirement commons with an Alzheimer's unit attached. Interesting place... It was very sad and scary when I first started, but I got used to it after a month or so. Fortunatly I'm only security so I don't have to take care of their hourly needs. Eventually you stop acting like you are around the dying and just think of them as people. The cure for any fear/prejudice is experiance! Posted by Storm Saxon (Member # 3101) on :
Eaquae,
Just enjoy your friend for who she is now. So what that she is forgetful and doesn't know what she used to? You and she can still enjoy things together on her level--food, companionship, touch, jokes. Alzheimer's, while very hard on those around the person suffering from it, doesn't cause the person who has it to suffer at all. I say this both as someone who helped take care of his grandmother when she had it and as someone who was around it constantly in a long term care facility.
Posted by Wendybird (Member # 84) on :
My grandmother is in the beginning stages of Alzheimers and I would say it does cause her to suffer. Every time she forgets my grandpa died Saturday and relives the moment she found him she suffers all over again. Its been hard for all of us, but I think it is more painful for her because the feeling of first finding out your loved one has died happens over and over for her.
Sorry to hear about your friend Eaquae.
Posted by Desdemona (Member # 7100) on :
It seems as if Alzheimers is so very common among people we know. As you may know, my Grandmother recently died of Alzheimers. I still can't get over it- it's so hard.
My grandmother also had MS, and was in some pain. She would sing disjointed christmas songs, usually Jingle Bells in the home. I can't help but remember. And cry for it.
Anyways, my heart goes out to everyone who has been affected by Alzheimers. It has been hard for my family, and I'm sure it is at least as hard for everyone else.
Well, back to the thread... sorry to hijack it with more of my stuff.
Posted by Eaquae Legit (Member # 3063) on :
Wow, what timing. Last night I got pretty teary over this again. I so desperately want to see her again, but I work the next couple weekends. Maybe I'll just have to run with it and go one weekday.
Posted by quidscribis (Member # 5124) on :
I'm sorry for all of you with relatives and loved ones who have Alzheimers. It isn't nice. An adopted grandmother has it, and she's not doing very well.
quote:Originally posted by TMedina: Everything has a purpose, even if we don't understand it.
Which is cold comfort, but in the face of such pain, there is precious little else to cling to, save the memories of better times you carry inside.
-Trevor
My grandfather suffered from dementia before he passed away, and it was a difficult thing for all of us. I never had a father, and he had just as much to do with my upbringing as my mother did, so watching his decline was extremely painful. However, you are right that carrying memories will bring a sense of peace- I had a hard time with his death because I don't believe, like everyone else in my family, that he is in heaven. Yet my memories of him are all that matter, and were all that mattered when he was alive and so there is no reason I should grieve. Yes I miss him, and yes I wish he knew what was happening before he passed away, but there is no reason in feeling remorseful.
Everything does have a purpose. My grandfather's death helped me to look at my life in a more positive perspective. I won't get into how his dementia gave me a new outlook, but I will say that Kwea it is possible to put a gain something from the loss of a loved one, even if in the end they don't know who you are.
~M
Posted by Eaquae Legit (Member # 3063) on :
So a bit of an update. For once I was brilliant enough to call ahead before I visit. First I called the old house Jane and I lived in together, to see if I could visit the guys there, and to get the number for Jane's house.
It was a good thing I did, because last weeknd, they closed the house down, and the two core members who were living there moved into nursing homes. Now, the community has always tried to care for its members as long as possible. In the past, even up till death. And they opened this house a couple years ago specifically to provide more specialized care for the members with dementia. So the fact that they had to close it really means that the ladies need a LOT of care. Professional, intense care.
It's just a matter of time, now, but it hurts so much. Ever since I met her I knew how hard it would be, but expecting it hasn't ever made it easier. It feels like a part of me is dying, and there's nothing I or anyone else can do. Even people's attempts at comforting feel empty, and I'm trying to take the kindness as it is meant.
I've never had anyone really close to me die before, and certainly not this long, drawn-out waiting. I hardly know what to do with myself. I'll survive, I know, but it'll never "be okay."
Anyway, thanks, Hatrack, for listening.
Posted by pink (Member # 8048) on :
I'm sorry for your loss. I am a RN that oversees a "Dementia and Alzheimers" unit in a nursing home, and I see the effect that the disease has on our residents, and mostly the families. This is an awful disease, and worse yet is that there is no cure, only treatment that is "supposed" to make it more bearable.
The good news is, that medically, we are right on the cusp of discovering what causes the disease. Drugs to counteract this specific disease is not far behind. I could try to explain it to you all, but does anyone REALLY want to hear about genes and taos? I didn't think so.
Once again, I'm sorry for your loss. I know it's hard. I speak from experience. Posted by romanylass (Member # 6306) on :
Eaquae, I am so sorry. I now this is hard for you. We are here to listen. Posted by Eaquae Legit (Member # 3063) on :
The visit today went so much better than I could ever have imagined. Her new home is definitely a more hospital-setting, but as they go, it's a pretty friendly place. We sat and "chatted" which mostly consisted of sitting there until one of us started laughing. She didn't really remember "me", but I think she knew it was a person who cares for her a lot.
She's going to terrorize the other residents, I can tell. They all seemed really quiet and withdrawn, whereas she is still loud, obnozious, and invasive. And while I do feel bad for them, I couldn't be happier, because that IS Jane.
I feel so much better for seeing her. Things could be a lot worse than to have a friend who laughs and laughs just because you're near.
![[Frown]](frown.gif)
![[Wink]](wink.gif)
![[Smile]](smile.gif)
![[Cry]](graemlins/cry.gif)
![[Kiss]](graemlins/kiss.gif)