I have DVR'd the entire series to watch when I can - and watched part 1 - the Memory Loss tapes last night - and some of the stories blew me away - especially Woody - who sang so beautifully with his group! and sadly after did not remember doing it. My beautiful mom was diagnosed 3 years ago. Of course I have to keep the tissues near by - the one that disturbed me was the sweet man at the end in Hospice who was dying - on camera! I just felt so intrusive with that one. I wished they had just let us assume the worse and let the family be alone with him.
I will write more after I watch the rest - but wanted to comment felt this first part was excellent! thanks

Dear Hertfelt,
Thanks for watching and sharing. I'm so sorry to hear about your Mom.
I feel the opposite about the dying part. I think it was wonderful of this family to allow us in on what is normally such a private, precious time. I feel by showing death perhaps it will help others not be so afraid and to understand that death is a part of the life cycle. We weren't meant to live forever. We all will die sometime.
Years ago most people died at home surrounded by their loved ones. Personally, I feel that is the way it should be (if possible).
I hope and pray that I am able to stay home with my family to the end with the help of a good hospice.
Again, thank you for sharing. Please, come back after you've seen the rest and share your thoughts and feelings.

I would like to explore "Death" a little more. Up until a year and a half ago, I was an avid skydiver (it got too expensive always renting my chute and the plane ride), and jumping from 14 thousand feet.

Here's what is puzzling me: When I left the door of the plane, I knew there was a chance my main chute might malfunction and I also knew that I had an auxiliary chute if that were to happen.

But what if they both didn't open?

Thinking back on it, with my arms outstretched and my legs bent at nearly 90 degrees and soaring through the quiet sky yet to pull the cord, I was okay with that!!!!!

So tell me please, if you know, will I be that "okay with that" - dying with my family all around me?????

Why does that scare me so bad?????

Thanks

Bill

Bill, for me it's about CONTROL. Back when I had a really fast motorcycle that I took a few chances on, I didn't worry about becoming 100 yards of forensic evidence in some high speed accident. It was my choice, and I was having more fun than a barrel of monkeys.

I don't see much of a comparison to dying of Alzheimer's, and I'll bet you don't either, now that you think about it.

I offer loving appreciation to the show's family that let us share their loved one's death on screen. I've been with people when they died, and it doesn't get more powerful than that moment, even with a stranger on the roadside.

I don't know, Buddy. I guess it's just the apprehension of dying which is scaring me.

Like that first jump.

Man! If you were to see that video, you'd think "that is one scared guy".

There have been times recently when I would have welcomed the Reaper if he'd come to visit me in my sleep.

Tough subject to nail down, isn't it, partner?

Bill

Dear CR,
You're right. It is a very tough subject. It's a subject that needs to be talked about openly and honestly. Our society has pushed death so far back and away with all this technology that people fear death and don't want to talk about it. Some people think it's morbid.
But, just as everyone who is born will die; Each of us will die in our own time.
What frightens you about dying with your family around you?? Is it the possibility of a slow death? A painful death? That you can't say goodbye? or you're afraid you won't die like a man? Or fear of the unknown? Fear of being alone?

Think about it and let me know.

Hang in there.

Lisa,

There is still so much I'd like to do. I want to see both my grandkids succeed in life, for one thing.

I wanted to get my pilot's license, learn to scuba dive, write a book. Oh God, So MANY things.

What frightens me the most is losing everything and not knowing anyone anymore.

Yesterday I watched a film with the late Robert Young, called Mercy or Murder and it was as scray as any Frankenstein or Freddy movie I have ever seen.

Thanks

Bill

Death is a discussion we need more of! Really!

My consistent question has always been this: Death limits birth, life sits in between. Is that it? We spent another thread on the spiritual and I do not mean to raise that here. Life as we know it following our birth is so abruptly ended; can there be any more after? If there is anything after or if there is not how we handle living and deal with death has consequences.

I look at my life’s future of slipping into the fog bank of later stages of AD and wonder, do I want to go there? The answer to that is easy. NO WAY! Do I want to take control of that? The answer becomes harder.

When I was first diagnosed and had my partner in law practice to do estate planning taking my diagnosis into AD into account I was appalled. I had enough funds saved to see my wife and I through retirement. If however I were to be institutionalized, (eg nursing home, assisted living or in home hired care) I had no outside help. I had too much in savings to qualify for government assistance, neither Medicare or health insurance pay. My financial advisor told me I did not need long term health care and I like an idiot accepted that advice.

The consequence of paying for my own care was staggering. The government says both my wife and I have to pay down our estate before I qualify for aid. Once we do I can go on the county (great!) but my wife is left out in the cold. If our savings are paid down so I can qualify that means my wife does not have enough to support her. This violates every sense of being the “provider” that there is. I would rather be Dead!

So, why not? When I get to that point, like Joe plans in the AD memory segment of the AD Project, why don’t I go out and by the ash bin and get the job done?

I first approached this as a moral question. Where was the greater good? How do I exercise my responsibility? I have no need to live when my mind isn’t living with me. Why should I have the audacity, the arrogance to continue the life of me as a spoon fed self sustaining vegetable?

Having been raised a good Catholic, suicide absolutely forbidden; having become Jewish where life is held to be a sacred responsibility, having read and accepted the tenants of Buddhism as regards life, karma, multiple lives, I went to my Rabbi for advice.

She told me as I expected my life was my sacred responsibility, it was not mine to terminate it. Looking beyond that she said I should consider the responsibility to my loved ones. Was it fair to deny them whatever their lives required of them in responding to my disease? Looking at it though the concept of Karma this made sense. I was monkeying with their as well as my own karma. Perhaps it is their karma to care for me and my karma to accept that.

This made sense and I left it there.
But it hasn’t quite stayed there. “Why not” keeps being asked.

I do not fear death, I look forward to it. I do so with no particular urgency I can wait. But when it happens I am so curious to see what if anything is on the other side. I figure it has to be better than this life when one looks at the ubiquitous purpose that permeates so much of life. If there is nothing, nothing is lost!

But if I screw around taking my own life am I screwing around with whatever transpires beyond death? If I am a vegetable what am I screwing with? If I have interludes of some cognitive acuity does this make it different? If I direct it for after I am loony toons whose job and moral and legal turpitude is put at risk?

If the termination of our life is morally within our right, why not euthanasia?

My friend Mike,

You are a Godsend!

Thank You!

Bill

Alright, I'll tell you something if you'll keep it quiet. I've seen many, many people who intend to kill themselves in the near future, and people in Emergency Departments who tried to kill themselves just hours before.

My secret? Every now and then, I'd hear a story so impossibly tragic, that I had to lie to them. What could I say, that in their place, I'd want to die, too? I might say that if I knew them really well and believed it would help. But, not to strangers.

My wife knows that I don't want to get much worse, either. That's why in a moment of weakness, she made me promise that I'd never kill myself. No problem, I don't want to die . . . yet. But as my buddies are saying, there's that dark future. Probably by the time I want to kill myself, I'll be helpless to do it.

Alan,

I once posed the question "If I knew I were having an MI, what if I just let it happen?", on a message board, and the majority of responses was that I couldn't do that, that there were too many extrinsic factors involved.

What do you think?

Your Pal

Bill

For Mike:

"Life is a short warm moment, death is a long cold rest." Roger Waters of Pink Floyd.

The song is Free Four

Your Friend

Bill

Hey Guys and Gals,

As for Life and Death, I'm for Life, of course. However, I believe more in quality of Life than quantity. I do NOT believe in life at any cost! No artificial means whatsoever! If I'm unable to eat and drink myself just leave me be. There are good reasons people stop eating and drinking! The body starts shutting down and can't handle the food or water.


In the book "Still Alice" she faces these questions.

I'm not sure about the suicide thing yet. It would take some serious planning.

Waiting to see if a heart attack is killing me? There's got to be at least a one-hour tv show that can be made about that. I'm crazy enough to do that, but I hope everyone else is too sane.

I'm against suicide in general. Sure, anyone that is physically able to do it, can do it if they want. Problem is, everyone I've ever talked with who was thinking about it, had people that it would hurt if they suicided.

With hospice care and compassionate doctors, the last phase doesn't have to be too bad. And some people might need to be with us until the end, and they want that to be a while.

Great thoughts, Lisa and Alan. I don't know if I could off myself, but I catch myself being ambivalent about it.

Sometimes i think, "If it happens, it happens, I had a good time."

Other times, I'm not so sure.

Guess there's still some hope for me, huh?

Bill

Do you all remember how AIDS was regarded when it first came on the scene in the early '80s.
First, if you had AIDS, you either were shooting up with dirty needles or you were having gay sex or you were doing prostitutes. But yet people feared using a public bathroom.
Many gay men had already been disowned by their families, so they died alone. And because there wasn't the drugs that they have today, they suffered.
Their lovers/partners couldn't take watching the slow painful death. Especially because so many of them were dying everyday.
So they had an underground suicide plan. Some threw "goodbye parties" and then later that night someone would set them up and then leave, and the victim would take the drugs that would kill them.
I doubt if their deaths were ever investigated. They were cremating the bodies and no one wanted to touch them for fear of catching it.

So then why isn't it okay for you to do?
Well it is your decision. But as one of you said, your love ones want to care for you and suicide would deny them that. Suicide would tear them apart and can weigh them down for the rest of their lives. And besides knowing the reason, they will blame themselves, that they should've done more.
When someone cares for a LO and sees how the quality of life isn't there, when the LO dies, they are sad, but at Peace and grateful that the LO is no longer suffering.

Someone mentioned that we avoid talking about death. But we don't talk about when we were born either....Why? Because we don't remember. So maybe our minds will be in that same state at death, meaning we won't know.

Anita, CR, Alan, Mike et al,

We don't talk about death because it's not generally a pleasant thing to discuss. Many people fear death and always keep it or any discussion of it far away from themselves.

Like the grim reaper and stuff like that.

Your right in that we don't talk a lot about are births because we don't remember them. But I've asked my Mom numerous times about the day I was born and what was happening and how she was doing and feeling. My daughter and I had the same discussion many times about her birth because she asked.
But why is it people don't really ask about death except to ask about people coming back after death?

Curiosity killed the cat. huh?

In my family, my darling wife will lift up her chin, focus on the positive, and keep moving. She doesn't like to talk about the darker side of possibilities.

On the other hand, I face adversity more by grabbing it's ears and kneeing it in the groin.

We compromise by doing it her way. (Pause for laughs)

I have a couple of great friends who will talk freely about death with me. It's surprisingly easy with them, even though they're both Christians, and I'm a recovering Christian.

Dear Alan,
Christians believe in life after physical death and some talk freely about death. I often think about being with my mother and father again, at some time in the future, of course.

I like your wife's plan, lift up your chin, focus on the positive, and keep moving. I sometimes think people are like sharks, we have to keep moving or we'll die. The trick for me is in not getting distracted, because once I lose my train of positive thoughts, I lose track, and have a hard time getting positive again. I'm constantly being bombarded by negativity and adversity. The only things I have to make me positive again are my Christian faith and now, my cyberfriends.

Iris L.

Iris, let's brainstorm some ways for you to get your positivity back.

I collect sayings that give me an attitude adjustment. I keep them on the wall, just to the right of my view of this computer screen.

You could do a similar thing with various Bible verses and other inspirational quotes. Reading them when you're off-track could be the ticket.

Any other ideas, anyone?

Thanks for the reminder, Alan. I have what I call my Book of Hope, which are inspirational sayings. both Biblical and non-Biblical. I also have my Book of Humor, which are cartoons, funny stories, and animal antics that I've cut out from magazines or downloaded from the internet. The only problem is I don't remember them. They were in my file cabinet, and "out of sight, out of mind". But when I bring them out, I have trouble finding them among the massive chaos that is my home.

Caregivers complain that their LOs deny needing help and resist help. What about those of us who know we need help but can't get any help?

Iris L.

quote:

Originally posted by Heartfelt:
Of course I have to keep the tissues near by - the one that disturbed me was the sweet man at the end in Hospice who was dying - on camera! I just felt so intrusive with that one. I wished they had just let us assume the worse and let the family be alone with him.

I understand your opinion on this. For me, that was perhaps one of the most important and comforting things. I saw a loving wife with her husband and I saw her husband going peacefully, no suffering, no struggle. He was in a peaceful room, no loud sounds or PA systems blaring, no institutional noises.

Iris, are you a church member? Those that take their religion seriously know to minister to folks like you. Something in that direction might be ideal for you.

Dear Alan,
Right now I'm going to continue my home Bible study and continue to communicate with my cyberfriends until things turn around. I need to be near people who know what I'm going through. I appreciate your concern.

Iris L.

The pieces to the puzzle may be sitting in 99 scientists' computers around the world, just waiting for emergence. Collective consciousness is a powerful phenomena. The world has technology that now multiplies knowledge exponentially. Hang on to the hope force. It is mighty. Some of the brightest minds among the whole of humanity are working around the clock to conquer this disease.

I watched my mother take her last breath, so that scene really hit home. Even though your loved one is in an advanced stage of Alzheimer's, it is still very difficult to make that final goodbye.