Big topic here: I cared for an aunt who died with Alz a few years ago, and learned yesterday at a favorite cousin is showing symptoms. Maybe the medicines get too much money and attention. But having a brain is what being a person is all about... In cosmic terms, that may be the best way to fight, even thought...

...it doesn't matter. This is not meant to cause more pain to blog readers who are going through this with people they love. But the end of life really, really sucks for almost everyone, whether they have mental decline or not. It's painful and expensive and smelly and degrading and terrifying.

More than squabbling over precious resources, I wish people just acknowledge this more often (as stoically as possible) so that fewer would be surprised.

(Here come the Boomers: That may get the job done.)

Yes, says Gray: "Doctors and healthcare funders need to question whether it would be better to invest in more doctors and nurses and better social support rather than spending huge sums of money prescribing these expensive drugs."

Afragginmen, here. We're going through this right now with my dad. And as Crid so aptly put it It's painful and expensive and smelly and degrading and terrifying. (Crid, not to worry, I'm getting a handle on it all, but it is a daunting task.)

And tiring. Especially when dad's stay at the hospital (or in his case, the rehab center) is contingent on having someone with him 24/7, so that he doesnt't hurt himself. The nursing home can't provide someone for him 24/7 because they're short-staffed. Between my mom, my brother and I, and some of mom's friends from her church, we've been doing okay covering him. Even the 90-year-old guy who lives down the street from us has offered to hang with dad a couple hours a day. His (the neighbor's) daughter had him (the neighbor) put on Aricept last year, when he was in the hospital after a fall where he broke his leg. After a week, he was more delusional than before! They took him off it, and he's regained his faculites, and then some. He gets up and walks the whole neighborhood every day, bless the man! He went to visit my dad when dad was still on the Librium, for alcohol withdrawal (which exacerbated the dementia) and told my mom he was worried about my dad!

And now for the expensive part: for the first 20 days dad was in the hospital, he was covered 100%. After 20 days in the facility, it starts to cost my parents $64/daily. This is in addition to anyone we would have to hire to stay with him 24/7, at a cost of $18/hourly. It adds up really fast. If mom was to put dad on Title 19, which is state aid, she would first have to disinheret him, which means taking his name off of all their assets; she'd have to liquidate all, or most, of her assets, sell either her house or mine, get rid of their second car, and have less than $10K in the bank. After all the hard work my parents did to get themselves to a place where they didn't have to worry about money anymore, they're right back at square one. Mom and I are going to talk to a lawyer to see just exactly what she has to do in order to save what they have left in stocks and other assets. It's almost like they set you up to rip you off.

On another note, for those people taking care of a loved one like we are, the book "The 36-Hour Day", by Nancy L. Mace, is supposed to be really helpful. Mom's reading it now, and I'll be reading it when she's finished.

Flynne (and Crid)-

You have my sympathies. I won't tell you it's easy. Watching someone die from Alzheimer's is probably the hardest thing in the world you will ever do. It took my Grandmother 11 years.

But it would be nice if we could find a way to stop or reverse it. The present treatments don't seem to cut the mustard though.

ALzeimers is scary. I think it's probably harder to accept than terminal cancer. Most of us live in fear of losing what makes us "us" even more so than death. So I'm sure there is a booming market for things that "might" help, a little. Doesn't make it right of the companies, but really people-research your OWN meds! I even look up the antibiotics I get, and on occasion decide I don't care to take something based on the minor benefits vs side effects. I use only salt water flushes for sinus infections now, for example.

I know pregant women who have been prescribed tra-ma-dol (trying to avoid spam filter), a nonnarcotic pain killer, that has been linked to in-utero deaths. You just have to be the final say in your care. No one else cares for you like you, or can take the time you will.

My father is on Aricept, and it's not doing squat for him. Honestly, I think the benefit is that my mother gets to feel like they're doing something.

Grr, I should read all the comments first.

"it's almost like they set you up to rip you off."

First, I can't imagine what you're going through, Flynne. I helped my mom go through it with grandma, but that's just not the same as a parent and I know it. But, how is expecting them to pay for his care with their money being set up to be ripped off? Do you really think they should get welfare when NOT broke? We have a lot of people heading into old age, many more than are under it. That just can't be supported, to get subsidized care. We are going to have to go back to caring for our elderly in our own homes. They probably won't get as "good" care, but they won't linger as long either. Having dealt with this with Gma, mom and I have had many talks about what she does and does not want. So I am luckier than a lot, having her directions to go on. And IV fluids and mush food aren't on her list of OKs.

I see what you're saying, Momof3, but I also know what Flynne means. I was researching nursing homes for both of my parents when it looked like they might both need more care than I could provide, and it worked out that even if I sold their home, their sole major asset, and used all their savings, we could afford a nursing home for two people for three years. Then they would have been at the mercy of whatever help we could get from the governent.

As a single woman, me quitting my job to care for them was not an option. It was a real kick in the teeth that 50 years of saving and financial responsibility got them three years of care, even as I understand the economics of it.

Well, here's the thing, momof3: even with all the money my parents have, which isn't a hell of a lot, my dad's medical care is STILL wicked expensive. They don't WANT to have to ask for help, they're going to NEED to. Even wtih the insurance they have, there are still costs that are beyond their means to pay, unless my mom sells either her or my house, which pushes us all into one house, until I get another job and can afford a mortgage again, and unless she liquidates all the money she has left that was supposed to support her after my father passes. My parents, because they are retired and living on their pensions, fall into the "not having enough money to support ourselves in a meidcal crisis via our insurances and incomes, but having too much money to qualify for assistance" category, as opposed to being at poverty level and qualifying for assistance, or being well-off enough to not have to worry about it. Kind of like when I was working and making decent money, but not decent enough to qualify for a mortgage or able to afford a decent rent, but making too much money to qualify for Section 8 housing. Such is life. We're dealing with it, we'll get by somehow. Although I would hate to see my mom have to go back to work at age 71.

EXACTLY, MonicaP. And it isn't getting any better.

Ultimately, it is the family or the state that has to provide this care. I have a relative with Alzheimer's, so I'm not unsympathetic or ignorant of the problems. Yes, Insurance should probably refuse to pay for an almost ineffective drug. The bigger question is, what do we do?

The ugly truth is that there is not enough money to do everything. If you took all the money from all the rich, there still wouldn't be enough. Do you deny some kids college educations because the money would be better spent on caring for the aged? What right do you have to decide for them?

Those are the kinds of choices choices we're going to face. The ugly fact is that the young already subsidize the old. There is a limit to what they can do, even if they were willing. With the way our economy is now, that limit is shrinking, not growing. Who will care for Amy? It's not going to be her children; she has none.

But the end of life really, really sucks for almost everyone, whether they have mental decline or not. It's painful and expensive and smelly and degrading and terrifying.

Yep, I'd say this is right. Crid's entire post up there is very insightful. I've worked a great deal with older people, and they're generally terrified of cognitive decline; they see their friends or family losing it, or see themselves losing it, and know they could be next. Some research suggests that if we live long enough, everyone ends up with dementia; the time course just varies.

I'm so sorry for all who are dealing with this. My mom's long-term significant other (she wouldn't marry him because he was a financial wreck, though otherwise a great guy) died with deep dementia. She's a tough cookie, but it was truly awful for her. I didn't see too much of it, but I do recall the chilling feeling watching this smart, funny man be replaced with a someone alternately confused, terrified, and occasionally almost himself.

I understand why people grasp at anything that might help.

Death is inevitable, I dont know why people try so desperatly to avoid it.

You want my two cents - once your brain goes whats the point? Your no longer you.

And since the sate says its illegal to kill yourself or assist in a suicide let the state pay for the care.

Have your mother sign over all her assests to you, claim poverty and let the state pay the whole bill.

You keep falling back on that Amy. What if all your friends die before you do? Will you pre-emptively eat a gun?

I would, the human body on average is only good for 30 to 40yrs

Anything after that is gravy compliments of 1st world medical care and cleanliness.

Seriously can ANYONE give me a ration explination as to why we should remained locked in a rotting bag of meat when it has long since ceased to function?

Actually, if you make 70, there's little reason not to make 100. Any inherent bugs in the system would have been discovered by then. My 89 yr old great great great aunt (like a Gma to me) was out raking her leaves the other day, found a snake in them, and killed it with the rake. I"m not sure what part of that is coolest, I think being capable of raking is awesome at that age. She's still herself. WOmen in my family just live long. WHich is not to say we don't face these things, my Gma was in her 90's when she went on a mental walk and never returned, and lingered for years till my mom had enough and pulled all care.

Another great aunt in her 90's just died. She was in a nursing home 6 months. They thought she was going and called in hospice. At some point in the night, the hospice lady leaned over and said "she's not with us now". At which point my Aunt reached up and smacked her and said "yes I am!". Too funny, she had a "normal" patch even there at the end.

Anyway, I think it's really not the state's job to care for them once it gets to the point that it's really just dying. An eventual inability to care for the elders is what kept people from lingering in this pseudo-life for years back in the day. I think it's time to go back to that.

Luj, people have lived to very old ages, even before real medical care. The japanese for one. I think saying your body craps out at 30 is really odd, and something akin to a statement a teen would make.

Again Flynne not picking on you or your situation, just using it as a larger example of what our government should or even is capable of doing.

My parents have three children, and not one of us would be able/willing to take care of them should their situations deteriorate. They would need real medical care, not just someone watching over them and changing the sheets when they don't make it to the bathroom. The task would likely fall to me, since my brother and sister have issues involving various levels of asshattery, and the best I could do is try to find a good nursing service. Having children to ensure future elder-care is poor planning.

But I think the problem with Amy's plan is that no matter how well she manages her money and saves, it may not be enough.

I'm with lujlp (though I too think that's rather too young). When I was a stupid 19 year old and the thought of old age freaked me out, I said I wanted to die at 50. Now that I'm 51, I figure anything from here on out is gravy; half feel like I cheated death. (Just kidding. But c'mon cheesy novels would make death come a reaping calling you out on naive youthful statements.) In my 40's, I laughed at my younger self but now, health problems are occuring and life is getting difficult and that's with a daughter helping me out. Thank God (pun!), I'm not all alone in this world.

Now I'm back to thinking that wasn't such a far off estimate. At least for me. So far, nothing I can't live with but things are getting so hard. I can't do half of what I used to, arthritis is starting to be a real issue (insisiting on further x-rays and have also found some in lower back and hip and still have more x-rays I'm gonna insist on because of pain, stiffness and discomfort) and it's just making ordinary everyday things so hard. As I said, not unbearably, yet and it'll be easier when I retire (if I haven't detoriated further), but, man, I do not think I want to live to be 100.

I think we should have the option of opting out when we choose. I have certain standards I feel I must maintain to be comfortable living that my daughter is well aware of. Once they're gone, the merciful thing would be to let some doc give me a script that if I take, I go beddy-bye and never wake up. I've lived a full life. I'd like to hang around to see the first greatgrandbaby (if any) born but, really, I'm fine with going any time now and, if things get too difficult to be at least somewhat independent, rather hope I do. I defintely would rather die of a stroke than survive one with increased loss of function.

momof3 I said 30 to 40yrs on average
after which things stop working so well

The on average part is key, factor in all the infant and child mortality rates and it offsets any outlier living to 120

And Monica, sooner or later no money is enough to stave off death

Back to the effectiveness of drugs.

Another example is the drug Plavix. If you read the literature it is less effective than aspirin and has more side effects -- especially ripping up your stomach. Cost comparison about $1.50 vs maybe $0.10 for an aspirin.

Almost every major killer - including dementia - has been shown to be delayed/slowed/avoided by good diet, exercise, weight maintenance, and mental activity. Social interaction is also a factor.

I've lived overseas for almost 20 years. Every time I go stateside it seems that the people - and the portions - have gotten bigger.

People don't want to do the work, they want to just pop a pill. But reality doesn't work that way. One of the terrors of old age is that you can no longer outrun or ignore that truth.

Taking care of yourself earlier on probably has more of a "statistically significant" impact on dementia than Aricept.

Taking care of yourself earlier on probably has more of a "statistically significant" impact on dementia than Aricept.

Yep. Cardiovascular heath correlates negatively with the likelihood of dementia. For those of us who aren't showing symptoms of dementia, exercise is the best deterrent. A couple of glasses of wine a day, and NSAID drugs may help, too. As does nicotine, if I recall correctly, though, regrettably, most nicotine delivery mechanism are not without their own health risks.

> Taking care of yourself earlier on
> probably has more of a
> "statistically significant"
> impact on dementia than Aricept.

"Statistically significant" has no patience for quotation marks. It means something very specific to people inclined to rational analysis.

You're absolutely right that people should attend to their good health, and it's particularly embarrassing that Americans don't bother.

But on the other hand, you're kind of begging the question. When caring for my aunt (who lived gently like an angel yet suffered early onset), I met plenty of deeply senior people in her facility who didn't show symptoms until very late in the game. They thrived in perfect clarity until their late 70's or mid-80's, and then fell into dementia... Only to live babbling in diapers for another seven to ten years, because they'd been so "lucky" (and conscientious).

A favorite anecdote from Sagan is starting to rot, because people don't understand that electronic communications used to be billed by the word:

| a celebrated newspaper publisher sent
| a telegram to a noted astronomer: "Wire
| collect immediately five hundred words
| on whether there is life on Mars." The
| astronomer dutifully replied: "Nobody
| knows, nobody knows, nobody knows..."
| 250 times.

Nobody knows what will happen. People hate that, and want to talk about the things they do know, because that's how humans start to solve problems. But we don't know much....

Except that the end of life is in all probability going to be a horrific, and perhaps lengthy, experience.

What to do?

[A] Collect as few regrets as possible: Don't fuel the fire.

[B] Write your gratitude into the registry right now.

> Or, if I find out I get dementia, I
> plan on killing myself before I go
> totally off the beam.

First of all, we've covered this.

Secondly, when people lose a small portion of their clarity, they turn up their game. They think it's a head cold or normal aging or whatever. (Being intelligent can work against people here as well, because smarties can cover their problem longer.) Then when they find out they're actually degenerating (and being pestered by loved ones to surrender independence), sheer cussedness becomes involved. And (ahem, Amy): The more strong-willed and independent the personality, the stronger the fight.

So degeneration continues. And by the time they're over the edge of the beam, they've lost the concentration required to, um, protect their interests.

Reading that earlier thread is highly recommended.

I watched my grandfather suffer through alzheimer's for years before he passed. It was one of the hardest things I've ever had to watch. It makes you feel completely helpless. At the same time, let me play devil's advocate for a minute here...

I worked in an assisted living facility as a caregiver after college. I worked in the alzheimer's unit there. Here are a few of the things that I learned from that experience. I don't know if it will ease anyone's pain or anxiety, but it's just a few thoughts.

1. There is an initial "hump" for all alzheimer's patients. It is in the early stages of the disease, when they are aware of the fact that they are forgetting things. It's horribly frightening for them. Gentle re-orientation helps to ease their anxiety. Reminding them of something without pointing out that they SHOULD already know it is the best.

2. After the initial hump, many alzheimer's patients regress. I noticed that alot of them regress to the happiest times in their lives. Some of my coworkers would try to re-orient them. Reminding them that they have a family and are not teenagers any more, for example. I went the other way. I would try to figure out "where" they were and go along with them. For example, I was informed by two of my residents that they were fishing, so I asked if I could join them. They were more than happy to oblige. At that stage, I found the re-orienting them upset them and in some cases angered them.

3. Once over the hump, alheimer's is much, much harder on their family members than it is on the patients themselves. They only know the world as they perceive it, not as it may be. It's devastating for family members to not see someone "be who they used to be". They are someone new now, and I've found, can still be quite funny, loving, and articulate. You just have to have the patience to follow what they're saying sometimes. I know the difficulties in this.

As for the medications, I never saw that they made much of a difference. I found that by embracing the person they are becoming and loving them, they typically maintained better health without the aid of medication. They will continue to market these products, as there is a growing billion-dollar-a-year industry for them, but please make sure you understand what all the effects of the medications will be. I saw too many of my residents over medicated and unable to communicate anymore.

Aricept has made a difference in my MIL, but it hasn't stopped the slide. Before Aricept she was talking slo-o--owly, walking slo-o-owly, a month later she was walking the same speed as me, albeit with a cane. She started to read books again. Just generally more alert and 'with it' than she had been in a long time. However, her short-term memory is getting worse all the time,it seems. I am not really sure what the Aricept was supposed to do....it seems to have made her more alert. I long suspected depression, but try and get her to a doctor...I wonder if the Aricept helped her mood-wise. There has been a big change in her outlook. Is it the Aricept or a fluke? The only way to tell is to take her off it and see, which we're not willing to do.

Some people do have problems on it, I've heard about that.

You're absolutely right, Renee. My father's dementia is far harder on the rest of us than it is on him. In the early stages, he would accuse us of lying to him or moving things because he would refuse to admit that he'd forgotten. The paranoia has abated now, and he's still a sweet, loving man most of the time. Unfortunately, now my mother is in denial. Despite an actual diagnosis, she's convinced that he would remember more if only he'd pay attention.

Monica, my experience with the disease is that you'll learn all sorts of things about forgiveness that you didn't know before, perhaps including towards the self. You're mother presumably knows him as a loving, disciplined man who, at her request, could conquer his own bad habits when she asked him to. Be patient with her.

And be very, very grateful that "the paranoia has abated." A couple years ago, when I was caring for my (gentle) aunt, there were two kinds of people who I used to see being moved into the "violent" ward of the facilties.

The first kind of person was the kind who had lived a life with violence anyway, so there was nothing new.

The second kind of person was the kind who'd never been violent at all. Sometimes they were simply overwhelmed with rage that they could no longer finish their own sentences, no matter how short they were. They can't remember what they were going to say, but they remember having the same problem two minutes ago; Something had been taken from them, and they were pissed. Other times the personality had been aggressively warped by the disease in some unseen way.

Both kinds of people were taken to the part of the building with triple-locked doors, sedatives, physical restraints and burly caretakers. And their families loved them just as much as we in the gentle wing loved our seniors.

I'm really sorry you had to go through that, Crid, and your aunt was lucky to have you. Most people would have run.

My dad is mostly steady emotionally as long as his routine is not disturbed. My mother is his steady anchor. In March of last year, she was in the hospital for a month for cancer treatment. I got a really good look at what he could be at his worst, if mom should die before him: me having to "steal" the car in the middle of the night so he wouldn't try to drive to the hospital; him calling me two or three times a day at work to curse and scream about what I was doing to him (namely, hiring a home aide to stay with him, which he didn't want).

The only way I could explain it to someone who had never experienced it before was, imagine a 3-year-old having a tantrum, then imagine that 3-year-old being a hundred pounds heavier than you are and having the same tantrum over and over because he couldn't remember the outcome of the last one.

Amy says she would off herself before it got that bad. I like to think I would, too, but I'm not convinced I would recognize it in time to do it.

> Amy says she would off herself
> before it got that bad. I like
> to think I would, too, but I'm
> not convinced I would recognize
> it in time to do it.

Word. As discussed above (and at the link for the earlier discussion), it almost never happens that way.

Listen, if anyone really wants to do that, go ahead. Nobody judges the suicides of ill people harshly.

Here's the scenario again: Being smart works against you, because you can cover your illness so your friends don't notice until it's fairly advanced. Being independent and willful works against you, because you'll resent it like Hell (as Monica reports) when people who love you try to help you. So then, when your will to live has finally left you, you probably won't have clarity or resources kill yourself.

I think people who breezily announce "I'll just kill myself" are at least being glib, and at worst making a tragic mistake.

"That's about a 4% difference, mostly reflecting a slower decline rather than positive improvement." Walk before running and Rome not build in a day comes to mind. These things will only be cured gradually. When the first cancer treatments started they were only slightly better than the disease now then can halt many cancers and even cure some. Using the same basic techniques that started cancer treatment only more refined. Cell specific chemo, high strength focused radiation, laprascopic surgery, etc. These are conceptually no different then high dose chemo and radical double mastectomies at the start of our cancer battle.

On one hand it is a waste of money but it's also money that the companies will pump into more research to find the cure. If one drug company has this then a different one will push for a better drug/treatment. Stem cells both patient and fetal have the most promise but those are naughty and can only be done with private funding.

> These things will only be cured
> gradually.

Are you absolutely certain you want a 100% cure for Alzheimers? (Not that we need to worry about it.)

Much misery of death is lost to those who can't perceive it, or remember it moment-to-moment.

I realize this silver lining is wrapped up in a big black cloud, but that's the kind of planet we're on.

Monica, you can have a kill switch put in the car so that it can be driven, but not by the person with dementia.It has to be placed so that the person affected with AD doesn't see it being turned on and off, or you can do it before and after they are in the car.

The Alzheimer's Association has a forum where you can ask questions, and get other helpful hints.

Monica, you can have a kill switch put in the car so that it can be driven....

A cheaper solution might be the
Battery Brain Gold (Type III) or something similar. The car won't start but you don't lose the settings on everything.

And if you buy it via Amy's Amazon page, she'll get a kickback.

Thank you Jim, I wasn't aware of that option. We took away MILs keys and got rid of her car as she was dangerous and sly to boot despite the dementia, and DH and I each have our own cars. On the AD forums, when the couple has one car and their partner has AD they have always talked about a switch. This is a great idea, I didn't even know that there was something like this on the market.

I'll post the link on the AD forum on the driving/car problems thread, thank you very much!

It would be relatively easy to bypass/remove for an average mechanic. However a grandmother without much experience under the hood probably would be halted by it. Not a perfect solution, but it is one to throw out there.

This is also good for cars that you have to park at an airport, etc. If a thief does get past the car alarm, he then has to get past this as well.