Do people with Alzheimer's actually "suffer"? No offense intended,

[mike1963]

I have no experience with anyone who has been afflicted. I guess what I'm asking is, do they actually "feel" or experience the sort of misery we seem to ascribe to the ailment? I'm thinking about Steven (Stephen?) Hawking who has some other kind of disease which as I understand has ravaged his body but left his mind sharp and intact - a situation I can appreciate being horrific and exasperating but is somewhat the reverse of what Alzheimer's appears to be...a mental deterioration rather than physical.

Could it be, clinically at least, considered a form of 'mental illness'? I've encountered a few people who clearly are 'nuts'...and
they don't seem to be particularly bummed-out or unhappy, just goofy.

It's said "ignorance is bliss" which has more than a kernal of truth...does someone with ALZ automatically be 'suffering'?

[dogman]

1. They suffer plus.

They don't understand what's going on and become anxious. There are several stages however and I would guess in the final stages they are less aware.

[Kinkistyle]

2. Well, I am sure the moderate cases must suck

I think the milder cases, where the people are still aware and conscious of their situation and surroundings and remember long-term stuff (their birthdays, kids' address, etc...), but for the life of them just can't remember where they left their keys, or if they turned off the stove every single day, that pretty much sucks.

[interceptor]

3. Yes

Think of all the times you've forgotten a word. Or forgotten where you put something. Its like that all the time, only worse. They get frustrated because they can't put sentences together, or remember what they wanted to say. They stop remembering family names and faces. I suppose someone in the terminal phases wouldn't really know how bad things are, but most Alzheimer's cases are in the earlier stages.

[Don_G]

4. Yes

There are currently cases where the victims of the Nazi concentration camps are confused enough to re-live their experiences at the smallest trigger such as waiting in a line for something.

[AlGore-08.com]

16. Rita Hayward had Alzheimers, read her bio "If This Was Happiness"

if you want to read a really moving account of somebody with the disease.

Here's what happens in the late stages of Alzheimers, from the Alzheimer's Association site:

http://www.alz.org/AboutAD/Stages.asp

Stage 7:
Very severe cognitive decline
(Severe or late-stage Alzheimer's disease)

This is the final stage of the disease when individuals lose the ability to respond to their environment, the ability to speak, and, ultimately, the ability to control movement.

Frequently individuals lose their capacity for recognizable speech, although words or phrases may occasionally be uttered

Individuals need help with eating and toileting and there is general incontinence of urine

Individuals lose the ability to walk without assistance, then the ability to sit without support, the ability to smile, and the ability to hold their head up. Reflexes become abnormal and muscles grow rigid. Swallowing is impaired.

At the end of Alzheimer's the brain forgets how to make the body function. At first the voluntary functions go, and eventually the body "forgets" how to make the lungs or heart work.

[kskiska]

35. I read the book – and I remember it as it happened

Newspapers printed pictures of a disheveled Rita being escorted off a plane, and reporters attributed her condition to drinking.

Her daughter, Yasmin (Aly Khan's daughter) is active in the Alzheimer's cause.

[Padraig18]

5. Oh yes, they suffer!

My grandfather died after suffering from it for 7 years, and I would not wish Alzheimers on anyone, not even Ronald Reagan.

[WilliamPitt]

6. Pray you never find out

[mike1963]

25. Well, I don't pray because I'm an atheist, but your reply is a bit vacant

of detail...is there more or was that just a flip response?...
:eyes:

[WilliamPitt]

40. Is this better?

Ronald Reagan is dead now, and everyone is being nice to him. In every aspect, this is appropriate. He was a husband and a father, a beloved member of a family, and he will be missed by those he was close to. His death was long, slow and agonizing because of the Alzheimer's Disease which ruined him, one drop of lucidity at a time. My grandmother died ten years ago almost to the day because of this disease, and this disease took ten years to do its dirty, filthy, wretched work on her.

The dignity and candor of Reagan's farewell letter to the American people was as magnificent a departure from public life as any that has been seen in our history, but the ugly truth of his illness was that he lived on, and on, and on. His family and friends watched as he faded from the world of the real, as the simple dignity afforded to all life collapsed like loose sand behind his ever more vacant eyes. Only those who have seen Alzheimer's Disease invade a mind can know the truth of this. It is a cursed way to die.

http://www.truthout.org/docs_04/060704A.shtml

[2bfree]

42. I agree.......

Even thought I have never been a Reagan fan I teared up when I heard his farwell letter, I think it took real courage to do that. Just the thought of knowing the terrible way your life was going to end and then writting out a letter telling everyone good-bye was heart wrenching. I wouldn't wish Alzheimer's on my worst enemy.

[2Design]

45. Wow that is some article...nice concise writing that brings home

all the many pages that others have posted into one article. Nice. Thanks for that. I like being educated. Even if I am late in realizing the truth.

eileen :)

[bluestateguy]

7. It isn't just a cognitive erosion

Eventually all of the physiological processes in your body dhut down. I lost my own gradmother to this disease 6 years ago--which is why I don't take kindly to jokes about it--and I can also tell you that it has a terrible effect on a whole family.

[mike1963]

32. Please believe that I meant no jokes about it, I was just asking a questio

question about something I know little about. If it were to inflict my mom, age 89, I would certainly be more than concerned. I asked by way of desiring information. You have produced more than enough. Thanks.

[gmoney]

8. well, slipping away can be agonizing...

It doesn't happen overnight, and the process of slipping into the memory loss can be extremely depressing and demoralizing. Plus, most cases are not "TV happy" cases of "absent mindedness", but rather result in acute paranoia, or violent rage, or severe depression. In many cases, the body outlives the brain, so the patient must be restrained to prevent violence against family and caretakers.

It's also torture for the families to watch their loved one transform into a helpless (or violent) stranger, and the caregiving demands are enormous.

My dad's father had it, and he was something of a mix, but it was painful to see this brilliant man reduced to a shell of himself. He lasted a couple years with full-on Alzheimer's, but some (like Reagan) live much longer in a hellish limbo. My dad has said if he starts showing signs, to just leave a gun out where he can find it -- he'll know what to do.

I wouldn't wish it on anyone.

[Dogfolks]

30. It's not always the worst that's left

As sad as it was, my mother at least was reduced to all the sweetest parts of her. I was so afraid the opposite would be true, because she always could be rather unpleasant.

She became like a sweet little kid. Until it got worse. It always gets worse.

But it's not always violent.

[kcwayne]

9. Yes, they do

The disease progresses in stages. In the stage where they alternate between dementia and self awareness (as in the old self), there is extreme exasperation at the recognition of loss of control. They live in a Kafkaesque nightmare.

As full dementia sets in, who knows how much anguish is there?

[union_maid]

10. They suffer a lot

When my uncle first started to experience the symptoms he tried to kill himself. In between being totally out of it, for a long, long time, there are periods of being aware and knowing your mind is going away. Then as it gets worse there's confusion and fear much of the time. Every situation is unfamiliar and only the people that you're with literally all the time are familiar at all. By the end my uncle went into panic every time my aunt left the room. He didn't recognize his own kids by sight but was so dismayed when he was told who they were. He lost control of his bodily functions because he couldn't remember what you're supposed to do about those things. He had to ask what to do with dinner when it was served to him. He didn't remember how to eat or that he was supposed to eat, but through all that he was sentient. He was not a vegetable. He simply had lost every cognitive ability that's required to function. He knew it, too. He was deeply depressed through most of it.

[neomonkey]

11. A professor ...

in one of my psychology classes said that early on in the disease when the patient is first showing symptoms, that they alternate in and out of "blackouts" - the blackouts being periods of time where the disease seems to kick in. The blackouts become longer and longer and the patient knows this, and the moments of lucidity can be torturous, especially as they become fewer and shorter. I personally don't know anyone nor have ever known anyone with Alzheimer's so I can't vouch for the accuracy of this.

Either way, it's not a pretty disease.

[carpetbagger]

12. Advanced Alzheimer's involves physical debilitation.

Typically, you end up with a guy unable to go to the bathroom, unable to stand, then even to sit. Skin breaks down, hallucinations, joints develop contractures. Ultimately, Ronald Reagan died of pneumonia, which is the most common way to check out, and a pretty decent sign of physical debilitation.

The prevalence of severe pain in advanced dementia is equal to the prevalence of severe pain in advanced cancer.

[TNDemo]

15. Hi RSammel!

Haven't talked to you in awhile. Listen to this guy, Mike - he knows what he is talking about.

[mike1963]

37. Hee, well thanks. I really don't know much about this particular subject,

but I do know about some other things...airplanes, engineering, and politics (if it's the right kind) :D

hahahaha

[TNDemo]

13. They suffer both physically and mentally.

Some have horrible hallucinations, terrible fear, though a few lucky ones are happily demented. My mother died a year ago from it (and her mother and my FIL shortly before) and she was completely frozen and unable to move the last year. I am sure every time we moved her it probably hurt a great deal. Finally became unable to swallow and that is when she died. They suffer a lot of falls and when they are in pain they are unable to tell you if they are pretty far along. I would notice my mother's jaw swelling and know a tooth had abscessed or notice inflammation but she could not tell me or point it out. It's a hell of a way to go.

[mike1963]

39. Thank you, I defer to your own regrettable experience.

I imagine you realize I was not engaging in any sort of deprecation, it was a quest for some insight. It's hard for me to imagine how difficult it would be for someone to deal with ALZ (I've recently been trying to handle a somewat bizarre situation in my own family....brother in law going through a sex-change and trying to keep my sister sane...)

[TNDemo]

43. Will we be seeing you on Jerry Springer??

Your poor sister. Did this come as a big surprise? Any kids?

Alzheimer's sucks much worse than I ever dreamed until I went through the whole process (cubed). However, I have to say some of my best laughs have come from it too. You have to laugh to stay sane and some of the things they say and do are pretty hysterical. And then of course you look at them and get a glimmer of who they used to be and start crying again.

In a "what goes around comes around" situation, one of the most miserable ladies I ever met was at my mother's nursing home. This lady got Alzheimer's about age 50 and she was about 57 when my mother was checked in (they were the two youngest). She used to be the nursing supervisor of the Alzheimer's ward at the indigent hospital. She often thought she was at work and was all the time carrying around the water pitchers, etc. They said she was a real witch to work for - treated her employees like dirt. She was the most miserable and tormented woman I have ever known with Alzheimer's. Crying in terror and despite electroshock, multiple drugs trials, etc. nothing could placate her. Her husband was still trying to work and take care of their handicapped son and the $4,000/mo. nursing home expense (cheap) got to be too much. He had to move her to the indigent hospital and now those same employees she tortured are now taking care of her.

[Rowdyboy]

14. In the early stages, after diagnosis, they are often very aware

that sanity is slipping away. What could be more frightening than the prospect of living long after you've lost consciousness? In the later stages, it doesn't matter as much to the person with dementia. It's the family that suffers the most.

[Malva Zebrina]

17. you will never find out because you will not be capable of parsing that

there is nothing that annoys me more than these ads that feature some woman, obviously an elderly woman by the sound of the voice, saying that she has been diagnosed as Alzheimner's diseease and that she has taken care of her care with some institution or such and now is much more relieved.

No, that is NOT the case.
Alzheimer's patients do GO TO INSTITUTIONS because no one , except the very wealthy and priveledged can stand to take care of them day after day, twenty four hours a day.

The next question is--how did people, families, cope with this disease before there were any things that we know now as "nursing homes"?

What did people do when confronted with this in their aged parents say in 1735?

How did they manage? Did they send their loved ones who were at that time considered delusionsal, or possessed by the devil, off to some other home or other?
Did they send them to prisons?

[kskiska]

41. Maybe way back in 1735 few lived long enough

to get the disease. They probably died of other things first.

Still, there weren't nursing homes until maybe the last 40 years or so. There were "convalescent homes," but were probably price-prohibitive to all but the rich. But until recent years, few reached 90 or 100.

[buddhamama]

18. yes, they suffer terribly.

my grandfather had Alzheimer's.

the beginning stages were particularly rough because he knew it was happening and couldn't do a damn thing to stop it.

he couldn't speak toward the end,
i don't know what he thought or felt.

is it a horrible disease.

[boxster]

19. It's the transition that can be the most difficult.

My best friend's father was an extraordinarily intelligent and sharp guy. He always took immense pride in his intelligence.

For him, beginning to lose his mind to Alzheimer's was incredibly difficult, because he knew it was happening and he knew that there was little he could do about it.

It was very disheartening seeing this very smart, very bright guy deteriorate before our very eyes. One day, he would recognize my friend - his son - and other days, he wouldn't. As the process continued, he basically just gave up on life.

So, to answer your question - suffering is most certainly a part of the disease, especially in the early-to-mid stages.

[Divernan]

20. Quality of life is largely negative.

Imagine having loved to read your whole life, and now you can't remember the paragraph you just finished, let alone the characters or the story thread. Same for watching television programs/films. And even if the long term care facility you are living in is very comfortable, you can't make any friends there because you can't remember anything about yourself to tell others, And of course family members also suffer. You go to visit your Mom or Dad, and they smile pleasantly when you walk into their apartment and you think they know who you are, and then they ask you something like, "Now are both your parents still living, dear?" Or, "Do you have any children?" They are happy to have company and they make an effort to be sociable, but the second you leave, they forget you were ever there. And you call the next day and they know who you are while you're talking to them and they get upset and say "Why don't you ever come to visit?" And they know they can't remember and it upsets them. Their lives are very lonely and their days are long and boring - which leads to depression. It's a very sad condition.

[Bridget Burke]

21. Yes.

From the first intimation that something is wrong through various periods of fear, confusion & depression until the last of the memories are gone. Often the worst memories become new for a while--until they, too, are lost. If they live long enough, their personalities may, indeed, become so wiped out that most of the suffering is being done by their survivors.

Alzheimer's (or dementia, generally) could definitely be considered "mental illness"--many of them have physical roots. And there's more to mental illness than being "goofy".

[Nevernose]

22. Yes.

They know THE ENTIRE TIME that something is wrong with them, but they've lost the mental faculty to know exactly what or even to express themselves. In the latter days they scream because they cannot remember how to speak, or wipe their ass, or chew their own food. They do not know when a wife is speaking to soothe them (who the f___ is this lady touching me?) or know when their own child is speaking to them (why the f____ are these kids touching me?).

Mere words cannot express the horror I have seen in a grown man's eyes.

It is, without doubt, the most horrible way a person can die.

[Wickerman]

23. Try this page for a better understanding of Alzheimer's

from the caretaker perspective, but also to get a small taste of the life that is lost. Download the .pdf if you like - written by an older guy with some fairly stiff language, yet pretty good stuff.
http://www.caringfornorah.net

here is a bit of sample text:

LORD, HELP ME TO CARE FOR NORAH
SHE SUFFERS MORE THAN I

After being out for 20 minutes Norah did not recognize her apartment block nor the suite in which she lived. (A true experience.) We need to be very aware of what is happening to the Alzheimer person.

In this poem, we see Norah struggling with her Alzheimer condition. She is like a drowning person who is clutching at anything she can reach, to try and keep from going under.

Above all, she wants to retain her individuality as a responsible person. She states that she is going out, on business, "to the bank". She always did these things before without asking anyone. Was she capable of going to the bank alone, now? She didn't really know. Probably it was a dare to me to see if I would stop her, and an attempt to maintain her self-respect.

When I said I was coming with her she had me acquiescing to her will, and it disarmed her. She felt relieved and her negative intention slipped away. We walked out peacefully with a spirit of closeness between us. Once outside the cold air and her weak physical condition soon brought back the realities of life to her. After 15 minutes she was glad to go back. On our return she was faced with more of her mental weaknesses.

When we arrived at Kiwanis Chateau she did not recognize it as her home, nor our apartment when we entered it. It's a shock of unbelief when you can't recognize your home after being out of it for 20 minutes. It would shake me right to my innermost being, if it were me. She faced it with unbelief. How could this happen to her? We moved into Kiwanis in December, 1988, as soon as the construction was finished. Because it was a Life-Lease venture the applicants for apartments had a considerable say in its planning. Norah had gone to many meetings involved with this process (without me). I let her go alone so that she would feel it was her decision to move into the place. The incident in "What Now?" occurred about two or three years after we moved in. Perhaps it had not fully settled into her memory, or maybe her memory was already receding into the past.

It is a fearful experience to think of this happening to a person.

[0007]

28. Thanks for the insight and the link

[bluedog]

24. my family was told mom

has the start of it.Its called "sundowning".

where one is confused and anxious about where they are.she had heart trouble and was on some meds.

she began bleeding when urinating and thought it was natural fluid.....
thats when the doctors told us she was in the 1st stage...its heartbreaking to see her.she knows us at first and then loses it in mid sentence....

[doni_georgia]

26. Yes they do

My grandmother knew what was happening to her early on. She anticipated what was going to happen as the disease progressed, and it was torture for her. As she worsened, she would have days where she was lucid followed by days where she didn't know who or where she was. Gradually the periods where she knew what was happening dimished to nothing. The worse part was that she would have these - for lack of a better term - temper tantrums, where she would hurt herself and others. She would scream, and scream and scream like an infant, but there was nothing we could do to console her. We never knew what was causing the screams, but they were terrible. This woman was one of the strongest people I have ever known. She was the epitome of dignified. To see her go through what she went through was the worst experience of my life. Like I said in an earlier post - I wouldn't wish that on my worst enemy. We were lucky in some resepcts because she died after suffering for only two years.

My aunt is now in the nursing home. She has had Alzheimers now for 12 years. She has known no one for the past 4 years. She is a lot calmer than my grandma was. She seems to be in her own little world. She does not seem to be suffering, but no one knows what she is feeling or thinking. Worst thing is, a second aunt has just been diagnosed with Alzheimers. It clearly runs in my family. My own mother has Parkinson's and she is already losing memory as well. It terrifies me.

I don't care how despised or even evil a person is - I would not wish this on a single soul. I cannot joke about it, and will not rejoice in the suffering of others. Ronald Reagan was a father and a husband. His loved ones were not responsible for his policies when he was President. Two of his kids did not even agree with his politics, but they loved their dad. I'm sure for them his death comes as somewhat of a relief, but they're grieving none the less. I can't tell anyone here how to behave, think or feel. I have made my own feelings on this issue well known.

[Dogfolks]

27. It's Just Plain Awful

For everybody!

My mother was diagnosed at almost exactly the same time as Reagan. She, too, was physically healthy as a horse when she got the news, but she died in 1998. She had a living will, so there was no feeding tube.

It seems to me that the feeding tube just means the unfortunate victim of one fatal disease is forced to hang around and wait to get some other fatal disease rather than being allowed to die of the first one they got. Reagan died of pneumonia, not Alzheimer's.

I'll bet Reagan had a feeding tube, which means EVERYONE suffered just that much longer.

[Cleita]

33. Apparently this is their version of pro-life.

Alzheimer's patients who have gotten to the point that they have forgotten to swallow their food, drink and other reflex actions that we take for granted, need to be given hospice care. They are made comfortable, food and drink are withheld, and they given a saline solution with increasing doses of morphine to ease the pain until they pass.

[Amaya]

29. They suffer...more then you can imagine

I work with Alzheimer's patients and it's the cruelest disease I have ever witnessed.
In the beginning of the disease, they know what's going on and what's happening to them. They are terrified. To watch a person slip into oblivion is just tragic.
In the end they lose their ability to walk, talk, and eat. They die. It's a slow death.

[DeepModem Mom]

31. I don't know what my mother feels, or thinks --

although, oddly, she often says to the staff at the nursing facility in which she lives, "I'm dead." Although she hasn't recognized me in years, she still tells me she loves me, and often says the same to the staff. All at the facility want to go "home," and a recent newsletter printed an article about the different things "home" might mean. (My mother talked of going "home" when she still lived in her own house.)

The Reagan spokeswoman said clearly today that Mrs. Reagan felt "relief" at her husband's passing, and this admission was, to me, another sign of NR's dealing with this horrendous disease in an honest way. Her advocacy of stem cell research is another.

[Cleita]

34. I you are asking if they suffer physical pain, yes they do

as much as you or I do even if they can't express it. The above posts should tell you the mental pain they suffer as well.

[alcuno]

36. Initially, yes. And if I have to hear anymore about Nancy's sacrifice,

I'll become ill. She has had people giving round the clock care to her husband. Those of us who couldn't afford it have had to do a lot more than hold hands with the patient.

[TNDemo]

38. Yep - there would be some real Medicare reform

if people in Nancy R's income range had to do the 24/7 of caring for a relative instead of paying for it.

[Cleita]

44. Nancy and family I don't think paid for any of this.

For an ex-president, he no doubt has the best medical plan available at taxpayers expense. Too bad the taxpayers and their families can't enjoy similar health plan benefits when the time comes.

[Poiuyt]

46. Obviously, everyone's different

My mother has been in the Alzheimer's ward of a nursing home for a year now, and she is very happy. She has always had a very positive outlook on life and this has remained. She loves to go outside and sit in the sun or flirt with the male patients. She doesn't make much sense when she speaks, has trouble walking and doesn't like to eat. I think it's usually harder on the family and the nurses. I don't mean to say that she never has bad days, but I'm glad that her personality has stayed the same.

[playahata1]

47. To answer your other question about Stephen Hawking:

Hawking has lived with amyotrophic lateral sclerosis (ALS)-- a.k.a.: Lou Gehrig's disease -- since the 1960s.

In ALS, the body degenerates, but the mind stays sharp. ALS sufferers are fully aware of what is happening to them; it is said that living with ALS "is like being a participant in your own funeral." Just ask Hawking, Lou Gehrig (whose diagnosis in 1939 kicked ALS into the public consciousness), Jim "Catfish" Hunter, Charles Mingus, David Niven, and others who suffered/are suffering from from ALS all about it.