If you were diagnosed with Alzheimer's...

I don't think it's possible to know what a late stage Alzheimer patient perceives his or her quality of life to be.

Perhaps it's blissful or merely dull. It's difficult to imagine that it might be perceived as horrific by the patient.

Obviously from the outside looking in, it's horrific, but then we are imagining ourselves in that condition with our lucid thinking and intact memories.

The problem with taking one's life during the stage where there remains moments of self-awareness is that you are robbing yourself of those last remaining moments.

I suppose that if those moments consist of nothing more than dread, remorse, and anguish, one might want to lose them, but they would truly need to be horrible for me to want to take my life. After all, the disease eventually kills your self. I don' think I would find myself willing to lose any possible moments by pulling the trigger before the disease does.

Of course it's impossible to know now how I will feel when those moments come and so it would probably make sense for me to start making plans for the possibility of suicide if and when (God forbid) I am diagnosed: securing enough paid meds to allow for a fatal overdose.

I think the most gut wrenching issue with the disease has to do with one's family.

Ideally, I would like to be able to tell my familiy that if, when I enter the final stages of the disease, I become an emotional and/or financial burden on them, they have my permission and encouragement to end my life.

Of course, there would be enormous legal, moral and emotional issues associated with such an option, and so it's feasibility is highly doubtful.

Instead, the decision will circle back for me to wrestle.

Do I take pre-emptive measures and end my own life before it becomes an emotional and financial burden on my family? Would I be doing them a service motivated by love or would I be robbing them?

Quote ..Would I be doing them a service motivated by love or would I be robbing them?
How can you "rob" someone..that in the see able future will become a vegetable as I have said before " if it you were a dog, you would put be put down"

I don't think we can be sure that, whether they admit it or not, our loved ones would prefer that we die rather than having to see or take care of us during the latter stages of Alzheimer.

Not everyone deals with these emotional situations in the same way.

I have, after all this time, no bright ideas on this. My experience of later stage alzheimer's is entirely horrible and very long lasting, and it wasn't me that had it.
My mother had no mind and no body left. It hardly bears thinking... but, as they used to say, needs must.

I worked in a nursing home for about a total of 4-5 years.

There's just too many ways it can go to decide now what I'd want then.

Yes, it does come down to, in the end, being in bed, being total care.
Then again, there're lots of things that could cause the same thing.

When I think of Dr. Stephen Hawkings, and the brilliant work he's done, I don't know how he resolved himself to be trapped in his body.

With alzheimers, when you mind goes, you can still enjoy your body.

I've known so many people with alzheimers, and with a good many of them, I've learned absolutely wonderful things, right where there were at that moment.

I learned how to cha cha from a wonderful woman named Babe. Seventy something years old, and boy could she cut a rug. Babe thought her husband Joe was still alive. Sometimes she'd get terribly upset and mad, but couldn't remember why (usually it was because a staff member had to tell her to get out of where ever she was, like someone else's room). She didn't have a clue who I was from one day to the next, but if she happened to wander into my office, she would sense I was a friendly face she knew. "Whassa matter Babe?"
"oh.....I'm just gonna jump out a window...no one cares" It didn't always work, but most of the time I'd get her to calm down by asking her what she was going to defrost for Joe's dinner.

"oh jeez....I hadn't even thought about that....I think I have a pork roast....."
me: "Oh I love pork roast! Do you make roast potatoes with that?"

Just because Babe had alzheimers, and I watched her decline over the years, that didn't make her less intelligent. In fact, Babe once gave me some wonderful advice about marriage, when she was to the point of not remembering her daughters face.

Charlotte Baum.
When I met her, she hadn't been able to verbalize coherently for years, and hadn't walked for months. Charlotte was however, a pistol. Some of the more serious minded residents, one's with all their faculities, just couldn't appreciate Charlotte. She didn't know how to move her wheelchair with her hands, but she could get that baby flying down a hallway, faster than you could walk, her little feet pedaling away. She delighted in traffic jams, and although she couldn't string 3 words together that made sense, she could have won a academy award the way she got her point across.

"And I said fluhshaludu on my tatledunk and go maknal when pluuey."

One other thing. Charlotte had the voice on an angel. If music was playing, she'd be there.

One day while I was working, Charlotte, all 80 pounds of her, whipped her wheelchair through my door, and didn't stop until she slammed into the wall opposite. Well, actually, that how she usually came in anywhere, but that day ended up differently for me.

Me (not even bothering to look up): 'lo Charlotte.
Charlotte: Muckamikee sloboob!

Charlotte was in a pensive mood that day, and swung her chair around to quietly sit a spell.
Softly, while gazing out a window, she started singing. I stopped dead with my work, and sat in awe while she sang. Her whole soul was revealed while she sang her wordless song. I didn't feel sorry for Charlotte at all, that she didn't have friend or family member that anyone knew of, that she couldn't feed herself, that she didn't even remember I was sitting there. Charlotte could sing.

Oh sure, I've known others who would grind their teeth, shriek, lash out...but, just like with everything, it's a stage.

I just don't know I would give myself up on the fear I'd end like that, when I see how people like Babe, Charlotte, Lou (he's a man I learned some serious lessons about love and forgiveness from) Miriam and dozens of others were, at least for a while, enjoying what they had.

I watched Charlotte die. One say she took to her bed, and was gone in a week. She had one hell of a ride though.

I watched others go downhill, and I can remember the last time I saw many of them, before they passed on.

I'd watch family members come and be so upset that their mother and father where no longer "there"
The funny thing was, they were always more upset than mom or dad.

Well, except one daughter I remember. I really had to admire her for her honesty.
Her mother Eva Glutch, loved nothing better than to walk around all day, her arms loaded down with towel and sheets she "found" on clean laundry carts, stopping to take a washcloth and wipe down the surface of anything she could find. She didn't talk, minded her work, but always had a smile on her face. When you said good morning, she'd nod her head at you in a regal way, and bestow her smile on you.

I asked her daughter if Eva had always been that way with cleaning. She said "No, not really, but then again, she never smiled either. If they ever come up with a cure for alzheimers, I never want my mother to have it. She was a strict mean woman, and look at her now."

Well, like I said, I've seen a lot of bad too.

I'm sorry about you mom osso. really.

Thank you, Chai. I still cry for her nearly forty years later. Not often, mostly there is a closed door on that.



Oh, and I do get there are intermediate times, and don't want to be a poopity head. Still it is a devastating phenomenon.

Thank you for that post, Chai. It really helped me understand.

Being Australian I have to say there is very little actual elderly suicide here. Lots of people wish they could but when it comes to it most of us cannot do it. regardless of our condition.

Sadly I believe the most common form of suicide is driving. Deliberate accidents if you like, Police acknowledge this but cannot be certain of numbers. But it is one of the easist and quickest ways to go. People just kill and maim others though which is extremely sick.

Australia, part of, had euthenasia briefly a few years ago. The Northern Territory brought it in as the Chief Minister wanted it. His father had needed it and didn't get it you see.

But the central government, pious bastards, over ruled that law and it's been back to punish those that try to kill again.

Clearly suicide has it's issues if legalised as some would abuse it but they do now anyway. It would just be good if people had a choice and could choose a quiet, painless and peaceful way to exit without harming others.

Having faced the suicide dilemma myself, depression, I found I did not have the guts and also that I wanted to live. Regardless. ALzheimer's or any other disease, I think they are all as dreadful as each other. I've had depression now for 48 years and I find I can live OK with it. Not back then but I learnt. Of course I still have full cognitive function and I suspect that is the key to living with whatever. Pain is the thing we can't bear.

If you want to go then go now, while you can. Just prepare your family so they do not blame themselves and know it's your preferred lifestyle if you like.

Do not offer God as a comfort to anybody as their first thought will be "Why does God allow this illness?". A justified question I say.

We also have a high number of highway fatalities which might be suicides, "single car accidents", as in crashing against overpass bridge abutments at top speed in a clear night with the car's brakes in perfect order. It's done - if deliberate - to spare the relatives' feelings, and also because life insurance policies may not pay anything in case of suicide. Makes sense to me.

If I may ask: when you say you've suffered from depression for half a century, what do you mean, exactly? There's all those medications out there supposed to cure depression, or at least alleviate the symptoms. And is suicide supposed to be only undertaken by the depressed - I would have thought the "single car fatalities" might not be depressed at all, just deciding to make a clean exit due to some terminal medical diagnosis, or to protect their families' finances, or both.

I'm glad she's enjoying going out, but from what I've experienced, eventually, they all become the living unconscious. Some are happy at the stage you mention, some are angry and belligerent.

But the saddest part of what I witnessed were the children who lost their parents before they died. I saw so many patients/residents sitting in their chairs, drooling and sleeping and not knowing what was going on around them. Yes, as I said, I can't speak to their quality of life, but I saw their families suffering and I wouldn't want that for my family. What a way to be remembered. Not for me.

A friend of mine had a father in his early 80s with Alzheimer's and he was bloody driving around not knowing where he was even going. He and his wife would be off to the grocery store and when she'd try to give him directions he got irate and went the other way. Would you trust this guy in a car? He shouldn't have been driving! His reflexes were much slower, for one thing, but when you add confusion and anger to that, it's a scenario for disaster.

My ex's mother is getting senile and she's had three accidents in three months. She gets confused and doesn't remember where she's going and she's more tentative as a driver as a result. Yes, she still wants her independence, but I don't think it should be at the expense of others on the road. They eventually took the car away from her and since she can afford taxis, that's what she does. It's safer and hey, it helps the economy. Plus, she'll now never kill anyone in her Toyota.

That was a bit of a digression, but still...

We had one guy, Frank, in the nursing home who had Alz and his wife, Betty used to come and visit every day with their little pooch. She was a happy, sweet woman, always well-coiffed and smartly dressed, a perky, cheery old lady. I went back to visit the home one day, a couple of years later, and learned Frank had died. I was up on the dementia floor and noticed this woman lying in a recliner, all mussed up, hair not washed, drooling, mismatched clothes. I asked who that was and they told me it was Betty! I was shocked and saddened to see her decline. They told me she almost set her apartment on fire; because the focus was on her husband nobody noticed what was happening to her. She had Alz, too, it turns out.

I guess it's kind of like pediatric nurses who deal with dying and ill children and are put off having kids of their own. Once you see what could happen, it makes you think twice.

Dunno, Mame. Both my grandparents had Alzheimers, and my grandma spent last 2 years mostly in bed (it was quicker/different for grandpa..and I was younger, so don't remember it that well). It was still her, she had better moments and worse. But it was her and we loved her, i didn't see it as a painful or wasted time really. This was in a village, so she lived in her own house with my mother's sister...that's just what you do in a village, take it day at a time all your life anyway. I learned not to judge her reality through my own. She did not remember me as me, she thought I was my mother when she was a child. My mother she did not recognize at all, but still. Would not want her to take her own life, ever. It would not have been easier for us - if family is the consideration here.

I do agree mame it's infinately more difficult for the children to accept seeing the changes in their parents, then some other caregiver.

Like I was saying above, the adult children were the one's who'd get so upset.

Unfortunatley it often comes out at anger directed at either the person with alzheimers, or the people taking care of them. They know they can't make their parents better, and are upset/angry that no one else can either.

Something that many people may not realize, is that someone with alzheimers can differentiate between what is really happening around them and what's happening on, let's say, the TV.

So, if someone is getting shot or beaten up on a TV show, they will think it's really happening, and can think that's it's happening to them. I've had family members storm into my office and say "my father says 5 or 6 people were standing around his bed last night stabbing him with knitting needles! he said he yelled and screamed fo help, and no one came. What are you going to do about this?!!"

I know, you would think they would realize some sort of satanic cult wasn't roaming the halls at night, and that since there were no holes or bruises on dad maybe this didn't happen. But, it's your dad saying this, and you want to hold on to the belief he can still at least tell you what's happening.

heh....this other lady italian lady would tell everyone all day long how hungry she was. She was another 80 pound soaking wet woman who could eat all day long. The aides where always bringing her extra sandwiches from the kitchen, and never left overs. Her sister, who was obviously an excellent cook by the aromas, would come with home cooked southern italian meals, made just so. She'd lodge compaint after complaint how we were starving her sister, and how the only thing she ever got to eat was what she would bring.

One day I was charting at the nurses station and "marie" was munching on a cheese sandwich and coffee. Right after she finished her sister showed up, and marie started shouting "I'm starving, I'm starving" while she still had bread crumbs and a dab of mayo on her chin. Sis started in on the "you don't feed her" stuff, and I told her I just watched her eat.
"Nooooo.....she didn't eat"

cross posted.

I like that, learning not to judge her reality through your own.

Just got this in an email, funnily enough.


MY LIVING WILL

(picture of old lady in a bikini at her computer)

Last night, my friend and I were sitting in the living room and I said to her, "I never want to live in a vegetative state, dependent on some machine and fluids from a bottle. If that ever happens, just pull the plug."

She got up, unplugged the Computer, and threw out my wine.

She's such a bitch....

~~~

People think God hates people who suicide, when in reality he doesn't only Catholics hate people who suicide...

Why do people think suicide is always such a Grim thing? Only a few religions actually think it is a bad thing, the truth is if a person is suffering why would God punish someone seeking releasing from their pain? would he really send them to eternal damnation just because they stopped another 20yrs of being a Alzheimer's patient?.. Now there are bad reasons for suicide, and they are escape for things like you just committed a crime those reasons are not sound... and from an ethical standpoint is not a good reason to commit suicide. That sort of person needs to stay on earth and pay for their crimes. Better to pay for your crime here than pay for it in heaven.

What about if you were diagnosed young with Alzheimer's? what would you do? I know someone who was diagnosed at the age of 33, the same age as me, which is very scary if you think about it. The only true way to diagnose it is to go in for a memory diagnostic from a Nero psychologist and then go to a neurosurgeon with the results and have them do advanced brain scans beyond the standard MRI's, basically they have to map your brain with the newer technology and map out plaques and watch the growth and development of new Alzheimer's plaques. http://alturl.com/849t I used a short url service to shorten the url so everyone wouldnt have to type the original url.

I just read a book about this - a woman who taught at Harvard- a cognitive psychologist developed early onset Alzheimer's disease (in this book - it wasn't a true story, but it was written by a neuropsychologist- so I assume she portrayed all the symptoms and the progressions of the disease accurately).

It was one of the saddest books I've ever read - and it brought up some interesting issues- a planned suicide being one. She set her blackberry alarm to ring every morning at 8:00 am and she'd see five questions typed:
1) what month is it
2)where do you live
3)how many children do you have
4)Where is your office
5) When is your birthday?
and a message: 'If you cannot answer any of these questions, go to your computer and open the file named Butterfly and follow the directions you read in the file immediately.

Later in the book - she tries to follow the directions and between the time she read what she was supposed to do on the computer and found the pills she had hidded in her bedside table (directed there by the instructions in the file marked butterfly) though she held the pills in her hand, she'd forgotten what she was supposed to do with them.

I would see what could be done about treating and/or slowing down the degenerative nature of the disease.

Beyond that I don't know.

As I've indicated, I'm not sure I would want to pull the trigger on myself before the disease did, and I don't know that my family would either.

It's easy to say you will kill yourself rather than (fill in the blank), but you can't know what you will do until you are in the moment. We're hardwired to survive, and what seems like it would be unbearable now might be worth putting up with when it comes down to it.