Hi,

My mother has early onset alzheimers, and I would estimate she has had it for 3 years so far (since the onset of symptoms). She is 55 right now.

I have read that alzheimers duration does not differ if it is early or late onset. Does this mean that she will continue to have it for another 5 years (assuming she has it for the average duration of 8 yrs from the onset of symptoms) ?

If so, this means she may die before 60, so young! Is this accurate?

I just want to know what to expect for her as well as myself as a caregiver.

Thank you all
omar

Hi all,

Omar's original discussion asked if the duration was only about 8 years. As some of you know I care for my wife. She has been diagnosed with Dementia but no known reason or specific diagnosis to say whether it is EOAD, Pick's or anything else. She is now 57 and completely confined in bed. She is also receiving Hospice care. As many know, Hospice doesn't usually get involved unless there is less that 6 months left of the person's life. She has received this attention for about 9 months now and has been authorized for another 3. We'll see how much more there is. As best we can figure this disease started about 8 to 9 years ago when she was in her late 40's. There is no known history in her family and as we know she has never suffered from any trauma. So what has caused this? Your guess is as good as any. Medications haven't seemed to have any effect at slowing this disease down eithr. About a year ago she was up walking around with help and she was very attentive, responsive and could still use basic words. One year later she can't do anything except lay in a bed and stare into space. Will she be here a month from now, a year, two years, who knows. Only God can say for sure.

For my own health and wellfare I have a live-in that is in my home and takes care of her while I go to work and do other little things for my sanity. I still spend a lot of time taking care of her weeknights and weekends but, I do get to go play golf one day a week and go out one night a week to listen to music. I don't have any friends or girlfriends so whatever I do is usually alone. This is my life and I am sure there are others that may have a similar one. I don't know if my discussions answers any questions or concerns but I do hope someone reading this gets something out of it.

Bill G.

The person with AD can live anywhere from 2 to 20 years,maybe more...............

I still attribute my mothers state of mine from the fact she had many surgeries witin a short time span, she lost her best friend and sisters and brothers.The final straw was her viweing her brother in his casket.She changed in front of everyones eyes.More grief then she could handle .Plus the anesthesia is rough on the mind

quote:

From reading the many postings, it seems to me that the doctors (neurologists) do a terrible job of educating us. If they did their job by telling us what to expect through the various stages, we wouldn't all be comparing notes.

GD, there is loads of stuff that docs don't understand about these diseases and theories and bits and pieces of the puzzle come out every day... I agree that there should be more time and energy by the medical system to EDUCATING caregivers with the best knowledge that we have. What usually gets explained is the scientific, empiracal stuff - they NEVER tell you specifics about hands-on caregiving or trials and tribulations of nursing homes, where to get resources and assistance, etc. For that you have to talk with folks who are walking the walk, either in your own community or on a forum such as this.

quote:

what could have caused this insidious disease to destroy our loved ones' minds

I understand enough of the scientific stuff to understand what happens and the resulting behavioral and physical changes that occur as the brain is destroyed, but how it BEGINS is a large, pretty grey area...

I think many of us have seen that physical traumas and especially emotional traumas hasten the onset of these diseases. In Mom's case, my sis and I can trace back her behavior changes YEARS before - she was exhibiting symptoms little by little - but the auto accident she suffered in '99 was the turning point. She did make a comeback, but it was short-lived. She is bedridden now and her disease seems to have plateaued for the last couple of years but she is slooooowly declining.

No one can REALLY tell anyone how long someone will last or how quickly they will go or how the disease will affect them... waaaay too many variables to those questions! Things can honestly only be explained in ranges - of behaviors, ranges of physical disability, ranges of lifespan, etc. A prognosis is an educated best guess.

The only thing you can count on (at the very least) is that a caregiver is in for an emotionally rough ride from beginning to end. I HOPE that you will understand that the guilt you are feeling is needless! As your mom's caregiver, you are responsible to get her the best care to make her life more bearable as you are able to. Different crcumstances make for different solutions - there is no one right or wrong way! If I had been your age in similar circumstances when Mom needed care, I might not have been able to have made the same choices as I did when she needed care when I was 50 and the kid was graduating from high school. I think you are doing a courageous job with a heart-wrenching situation. Many blessings to you!

quote:

Originally posted by Grieving Daughter:

In my mother's case, I think depression may have been a catalyst. She lost my father to cancer, my younger brother in a car accident, and, later, a male friend that left her after many years of a relationship together. What are your theories?

You know, I think many of us have observed this. My mother had been primary caregiver for my father through his long and tortured decline due to complications of diabetes. They had been married 50 years when he died.

Then, in rapid succession, we lost two of my mother's brothers and a nephew to ALS. My mother's mother died of old age. A very dear brother-in-law also passed away of cancer. All this in about two years.

So, for a long time it was difficult to even determine whether my mother was mentally ill with something like a psychotic depression or schizophrenia---or whether it was one of the dementias. She certainly was at least depressed.

Also, at the same time however, my mother had a couple of automobile accidents in which her head took a pretty good lickin'. So we are also left with the question of whether the accidents might have precipitated her decline, or whether they were a symptom of it in progress.

So many questions. But, again, I think this is a very common observation.

I just wanted to weigh in on the discussion about EOAD progression. From reading the many postings, it seems to me that the doctors (neurologists) do a terrible job of educating us. If they did their job by telling us what to expect through the various stages, we wouldn't all be comparing notes.

Anyway, my mother was diagnosed when she was 61 years old. She just turned 66 in March. Her decline was very rapid from 2002 through 2006. She finally stabilized in latter part of 2006 through present. Now she is in the "advanced" stage. She still walks, feeds herself, recognizes me although she doesn't know my name or relationship to her. I wrongly thought at the beginning that I had "time" on my side through each stage. I was not prepared for the rapid decline, nor did the doctor warn me. Although he later told me when I asked, that the younger a person is when diagnosed with AD, the rapid the progression. Too little, too late was that bit of info. The person I used to know for all intents and purposes is gone. Because I, myself, am 41 years old, I am not able to care for my mother at home due to work and family commitments. My mother is a widow and only has me to take care of her, so she is in a home and I carry guilt for this everyday of my life.

I'm sure many of you, like me, have asked yourselves, what could have caused this insidious disease to destroy our loved ones' minds. In my mother's case, I think depression may have been a catalyst. She lost my father to cancer, my younger brother in a car accident, and, later, a male friend that left her after many years of a relationship together. What are your theories?

May, I had heard the same thing from my husband's doctor when he was diagnosed with rectal cancer. He told us about the various treatments and I just wanted the one that would cure him. He informed me that they, the doctors, "MAY" get one of them on a clinical trial. Needless to say Doug's "clinical trial" was NOT the one. Makes me see red!!!!

May Im pretty sure I heard that one too. The problem is how do we circumvent these idiots.
Go to Canada for our meds? My Aunt and Uncle do
Im going to have to ask her exactly how she goes about it I just have to wait for this dang weather to clear up out here. Its nasty.

A FRIEND OF MINE HAD A FRIEND WHO WORKED IN CANCER RESEARCH.He told her, in 1956 a cure was found.He was taken from his position and placed out of the public eye.They chose to not come forward as it would hurt the economy, put people out of jobs.I was told this by another person not long ago.These drug companies, doctors, care faciltiies have big money in lobbing with our representatives.Why do you think we do not have a natl health care system.Of all the rich countries out cost are the highest.Money talks and bull shit walks.

Gosh Lynn your a brave soul..I dont know what to say that wouldnt sound... well you know.
Im sure youve heard it all. So I wont even go there. Are you doing all right now?

The old problems I had was being very argumentative,& gripey.We thought I had MS,but wound up with AD.I was tested for everything under the sun.Have Hypothyroid,&Pernisious anemia.I get B-12 inj.every month,plus my thyroid med.I take Razadyne,& have the last four yrs.before that I took Aricept,until it stopped working.

quote:

Originally posted by SnowyLynne:
I was diagnosed nearly 9 yrs.ago.Every person is different.

Lynn do you keep a journal of your days?
I dont mean to be disrespectful so if I am tell me to bugger off.
Are you taking meds or vitamins?
Are you ever aware of any symptoms stemming from AD?

I was diagnosed nearly 9 yrs.ago.Every person is different.

I am taking care of my mother-in-law. Her AD started around age 55. She is now 69. She has been incontinent for about 6 years, totally bed bound for 3 years. She has not used words in 4 years. We puree her food and feed it to her for the last 4 years.So, early onset has not been quick for her.
Cindy O

I hear you OC but it still goes back to the same ole same ole How to make the almighty buck.
In order for these miracle cures to come out of the woodwork the government is going to have to come clean #1... going to have to make this a priority #2
Now In my little world...I dont see that happening anytime soon! lol
God forbid they actually put someones needs ahead of their own wallet.

You have to wonder, the American Cancer Society has been around since the 1950s and with todays technology you would think they would have found the cure to cancer. Sure, most cancers are cureable but what about lung cancer? Dana Reeve's didn't even smoke and yet she contracted this deadly disease.

If Stem Cell research is approved, I hope they can find a cure to all types of non-cureable illnesses.

quote:

Originally posted by mae:
These pharmaceutical companies are making millions on drugs for the symptoms.They are not interested in a cure.You know that the mighty dollar sets the tone for what does or does not become a priority.They take into consideration the money that is generated with Nursing homes, health aides, medicine.They worry about jobs as much as they do a cure.

I hear you loud and clear on this point! Its disgraceful how these people play god with peoples lives...And still no remorse.

THE AD THAT IS FROM A GENE IS THE EOAD.I believe we have a member who had his young son tested for the gene and proved positive for the possibility.Many who have experienced sever head injuries are good candidates for AD and Parkinsons.The one thing they emphasize is early detection.is no cure, as yet .I hope to heck they will find one soon.These pharmaceutical companies are making millions on drugs for the symptoms.They are not interested in a cure.You know that the mighty dollar sets the tone for what does or does not become a priority.They take into consideration the money that is generated with Nursing homes, health aides, medicine.They worry about jobs as much as they do a cure.

quote:

Originally posted by OCSurfCity:
Bunny when I was studying biology in college we discussed possible reasons behind dementia. One time they said it was called by too much aluminum that accumulates in the brain. Well, that proved wrong.

Research also says to keep your mind active. Read, play tennis, play games, build things, etc. Watching TV does not count.

Interesting but again she was a very active person and not really a tv watcher (my uncle wouldnt allow it) I just remembered something though. She had a very bad accident when she was young with a serious injury to the head. I wonder.