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-   -   EXTREMELY rapid deterioration.. it's not normal. (http://www.healthboards.com/boards/alzheimers-disease-dementia/13944-extremely-rapid-deterioration-its-not-normal.html)

Rinoa 03-28-2001 06:59 PM

EXTREMELY rapid deterioration.. it's not normal.
 
Hello, my grandfather has altzheimers and dimentia... I'm seeking the exact cause of it. About 2 years ago he suffered what we think was a mini stroke, and about a year ago he broke his hip. He moved into a senior living center and was on independent living until about a month ago. He had had the symptoms of beginning altzheimers for quite a while before then, but he was still living on his own and pretty much independent. at that point we decided to move him to assisted living. they began to give him toprol (100ml), but a few weeks later we discovered that he was recieving 200ml. When he went on assisted living, he began to rapidly decline (and i do mean rapidly), so as to bring him to present day... where he has the advanced symptoms of altzheimers. ONE MONTH! we all know that this isnt natural- all of the nurses at the community where he lives says they have never seen anything like it. he was on excellon(sp?) for about a week and then was just taken off of it recently. if anyone has any theory as to something that may have caused this decline, PLEASE reply... thank you so much...

------------------
Nurse: "Take your pants off and lie down."
Grandpa: "I'll give you two cents."

It's amazing how a laugh can come out of something so horrible, isn't it?..

Rinoa 03-30-2001 01:26 PM

just as a follow-up, he is now much worse than he was when i posted this originally. he doesnt talk, doesnt remember HIS GIRLFRIEND WHOM HE OBSESSED OVER OFTEN, he cant even stand, and he banged his head up. i often wonder how much time is left... :( please reply

Mace 03-30-2001 08:37 PM

Rinoa,
Both my father and mother in laws had Alzheimer's and the times we saw them progress the fastest was due to medications or pain. In their case pain was the most noticable factor with both. The problem with both is they didn't complain about pain saying it hurts but it's just not a problem. We were usually able to figure out where the pain was coming from, once it was a fall, another time a lung infection.

Good Luck. God Bless, Mace

rolla 04-10-2001 04:29 PM

Hello Rinoa,
Almost 12 years experience of the AD bring me some ideas about the evolution of the desease.
Our grand'ma went through all these years with strong degrading steps.
Two years ago the all medical corpus explained us it was the end ... she was totally dependant, partly unconscious, fixing away a point during hours, with no more sign of contact with anything. She could not eat, masticate and even drinking trough a "pipe" brought almost nothing. She was livid, hard alike a branch of tree, her intestinal transit didn't work anymore and she had terrible difficulty to breath because of a strong double pneumonia!
We decided to avoid a part of the prior medication she was usually taking and maintained her at home by us.
With intravainous antibiotic and a 24 hour's care of the family - and much love - she recovered pretty well!
Now, two years after, she almost never went through further negativ steps!
She recognizes the family members, has become stressless and smile very often. She is still uncontinent and cannot eat herself, but she has begun speaking a little again...after two years off! I mean she begins speaking and after some clear and accurate words she mixes again the words. But it is encouraging!
The experience is positive and brings hope that we are going to have her happy and painless for still quite alot of good monthes or maybe years. We communicate alot! The children are very often around her for playing, playing music, ....and we invite old friends of her she recognizes again. They are all very happy, herself also.
All this to share some private and non professional experiences with you and to encourage you to feel as well as possible in such a situation.
One always should stay positiv for ourself and for the suffering parent.
Another thing, when someone with AD falls - it seemes to be a consequence and not the source of the desease. It occurs when a next negativ step has just occured, alike an attack.
About medication, one thing is very important is to give a good vaccination against pneumonia!
We maintain our grand'ma in a normal rythm of living and her vital fonctions work again pretty well! Of course we know it is not an eternal situation...but life is better for her and all the family now! The experience is extremely positiv for our children who react very well. I help my wife as much as I can, but she is very courageaous!
Of course such a result is maybe only possible if we really take good care about the suffering parent.
We think alot about you and wish you much hope and even joy with your grand'father.
May God bless you and your parent!
With my best feelings.
A Swiss friend, Eric.

rolla 04-10-2001 04:34 PM

Hello Rinoa,
Almost 12 years experience of the AD bring me some ideas about the evolution of the desease.
Our grand'ma went through all these years with strong degrading steps.
Two years ago the all medical corpus explained us it was the end ... she was totally dependant, partly unconscious, fixing away a point during hours, with no more sign of contact with anything. She could not eat, masticate and even drinking trough a "pipe" brought almost nothing. She was livid, hard alike a branch of tree, her intestinal transit didn't work anymore and she had terrible difficulty to breath because of a strong double pneumonia!
We decided to avoid a part of the prior medication she was usually taking and maintained her at home by us.
With intravainous antibiotic and a 24 hour's care of the family - and much love - she recovered pretty well!
Now, two years after, she almost never went through further negativ steps!
She recognizes the family members, has become stressless and smile very often. She is still uncontinent and cannot eat herself, but she has begun speaking a little again...after two years off! I mean she begins speaking and after some clear and accurate words she mixes again the words. But it is encouraging!
The experience is positive and brings hope that we are going to have her happy and painless for still quite alot of good monthes or maybe years. We communicate alot! The children are very often around her for playing, playing music, ....and we invite old friends of her she recognizes again. They are all very happy, herself also.
All this to share some private and non professional experiences with you and to encourage you to feel as well as possible in such a situation.
One always should stay positiv for ourself and for the suffering parent.
Another thing, when someone with AD falls - it seemes to be a consequence and not the source of the desease. It occurs when a next negativ step has just occured, alike an attack.
About medication, one thing is very important is to give a good vaccination against pneumonia!
We maintain our grand'ma in a normal rythm of living and her vital fonctions work again pretty well! Of course we know it is not an eternal situation...but life is better for her and all the family now! The experience is extremely positiv for our children who react very well. I help my wife as much as I can, but she is very courageaous!
Of course such a result is maybe only possible if we really take good care about the suffering parent.
We think alot about you and wish you much hope and even joy with your grand'father.
May God bless you and your parent!
With my best feelings.
A Swiss friend, Eric.

flydurango 05-18-2001 07:01 AM

hey you need a mri and fast this could be a sub dural hematoma on his brain... meanings a blood clot in the brain or swelling of the brain ...no time to lose alzhiemers is usally a longterm introduction not a short term or overnight type it also could be from multiple mini or major strokes

babeodear 07-25-2001 01:46 PM

There was a lady that shared the room with my mother and she passed away very quickly after she was diagnosed. We don't know what her meds were but she became very mean and was gone in a month. I wonder if there are different varieties of alzheimers? I also think the story about the lady who was on a G tube that showed some recovery is very interesting. My Mom never rallied after her pnuemonia when she had her g tube. Even with suctioning her lungs and keeping them clear. I think she was just tired of it all and ready to go. She had been a nurse and her greatest fear was to go through what she went through.

Stephanie Baziuk 08-10-2001 05:34 PM

Beware of use of Psychiatric Drugs for Alzeimers/Dementia.

I could already write a novel on this topic.
Dad went into rapid decline after he had a hairline fracture to his skull. This developed into dementia.
What I discovered from my expereinces with dad, I could write a novel about.
Here is the summary of what and what NOT to do.
1. Do NOT !!!! NOT!!! allow physicians to administer psychiatric drugs to dementia victims. (Chemical restraints, sleeping pills, medication to curb anxiety etc.)
WHY ?
Psychiatric drugs further kill brain cells...cause dopey behavior, depression, most drugs at first curtail agression then actually accelerate agression in most cases after prolonged use or high doses. Cause frailty and therefore people become more prone to falls.
Example: Haliperidol kick started Dad's Diabetes. A living hell that we survived. (a little tid bit of information that no doctor or nursing home informs you about)
Loxipine almost killed my Dad. Caused his throat and swallowing muscles to paralyse. He almost starved and dehydrated to death. He was so frail that he almost contracted pneumonia.
He became so weak and frail from this medication that it accelerated his demise.
Never Never ever, leave a dementia person unattended in a hospital. No one gives a dam if the person has eaten or not and especially the people who bring the meals and take them away again.

Both Loxipine and Haliperidol caused more side effects than helped anything. Tardiff Dyskinesia was only one devastating side effect. A rare form caused all of us to go crazy with my dad's incessant loud gasping..

Things to do that have worked marvelously.
1. Vitamin B6 nourishes the control centre of the brain. Other B vitamins aid in relieving depression.
Daily exercise, walks, relieves depression. Depression will further muddle the mind. Keep the person active and connected to normal life.
Use multi vitamins and especially the B vitamins. It seems that a body expereincing an injury or serious stress depletes the body of B vitamins. Make sure that these are first repleniished. Make sure the body has adequate iron.
Prescription drugs should be a last resort and I mean a last resort!!!!!
If you value your loved ones life, keep them out of nursing homes if you can possibly handle it.
Drugged people lose the will to live.

My dad is off drugs completely now for two years and he's doing the best. He's calm finally, we've got his medicine induced diabetes under control, we have his rare form of tardiff dyskinesia completely cured. He's still not talking but he's human again. He reacts, he understands us and has a life.
NEVER NEVER, take a doctors word for anything....always question everything and read the side effects of medication very carefully. Do NOT only rely on one source of information as all side effects are not always listed in one publication.
Remember, Doctors see a patient for 5 minuites. They do not always monitor the medication they prescribe. They are human and have limits as to how many patients they can keep track of.
Trust is a word that should be reserved only for those who love you..

gizmolove 08-14-2001 07:21 AM

Point-Counterpoint

Dear Stephanie,

Sorry to hear about your dad. I am writing you to tell you that my case is just the opposite (in some ways) as your dad's. My mom was diagnosed with AD in 1998. She was diagnosed in April and she died in October. Here is my experience.

When mom was released from the hospital she was given the base minimum drug amounts according to state law. I guess that many nursing homes and private doctors had been keeping the elderly "doped up" in this state and we have new laws that have come into compliance with the "anti-drug" agenda of state and federal interests. She was on Zoloft for depression and on Respidol (?spelling) for delusions and hallucinations, and another drug for sleep and one for the Alzheimer's and I don't remember them, but I think that one was Aricept or similar. She was pretty bad when she was diagnosed and 5 nursing homes turned her down for care. That was fine with me because I had just gotten her out of one that had been trying to kill her for the past 8 months, so I took her home to care for her.

The little bits of medication that I was allowed to give her helped some. At least she wasn't a screaming maniac 24 hours a day any more. She even allowed me to cream her arms to get rid of the terrible brushing that the nursing home had inflicted upon her, and the tares on her skin started to heal up from the rough treatment of the nursing home aids. But, mom would still scream and holler and cry when you tried to clean her or bath her. (She was intolerant to rough touch, water, and being moved; especially turned over in bed). She was still having some hallucinations, but they were not aggressive ones and she was quite calm on the most part.Then after 2 and 1/2 months, after pretty much begging the doctors to increase the med's, she started to be awake all day and all night as well with terrible delusions and she was keeping me and my husband awake with her screaming and crying and loud talking. After going 5 days without sleep and the fourth of July weekend coming up with no help or end in sight, I called her Medicaid counselor and was told to put her back into the hospital.. Where upon 56 more nursing homes turned her down for care. (She was 24/7 full nursing care and complicated with total aggression and Psychotic behavior---no one, no one in this town would take her.............)

That is, until the hospital called the nursing home that had been trying to kill her. OH THEY HAD ROOM, AND OF COURSE THEY HAD TAKEN HER BEFORE SO THEY WERE QUITE PREPARED TO TAKE HER AGAIN. I said,
"absolutely NO." The hospital said well we can't keep her, so she was transferred, and that was that. I spent a month trying to get her out, and after 3 more falls in three weeks (luckily no more real damage), I finally got her out and to an Adult Care Family Home. (Group Home). Her care giver, KAY, worked closely with the VNA, Visiting Nurses Association. Kay was amazed in how much the nursing home managed to get mom's drugs increased. With the help and documentation of the visiting nurses, Kay managed to get mom's med's increased even more over the next month and a half. (Aug 1- Sept. 20th).

When I had mom on Zoloft for example, the lowest dosage of it, I believe, is 5 mg. The doctor had the Pharmacy cut them in half, and I was instructed to give her 1/2 of that tablet per day.That would be 1.25 Zoloft per day. By September mom was on 4 tablets of Zoloft per day.Full tablets, and that is 20 mg per day. All of mom's drugs were increased to this higher level I remember the visit that we had on September 22. This would be the last good visit that I had with her. (October 22, she would be 84 years old).. She was smiling and happy. She remembered a joke that Kay had told her, and she recounted it to me perfectly. She not only remembered it but she understood it and was able to tell it to me without a hitch. We laughed and I'll never forget her great smile. I had my old mom back again. I fell into Kay's arms in the kitchen in thanks, for all of the work that she had done for me and for my mom.And I told her to please, please thank the nurses too. The next week I went and mom had a terrible cold I assumed that Kay was treating her with the same over the counter as the family had. (They all had it). A few days later I went to visit and found out that for 10 days the VNA had been calling the doctor and asking for something for mom's cold, and for 10 days (4 times) he had been turning them down. I called him, and after much frustration; I finally said, "My mother is not going to die from A COLD !!" He said, "Phenomena is an old man's best friend". I repeated my statement and I called in an ambulance and took my mom to the hospital. But, it was too late. After 5 days in the hospital and less than 24 hours back at Kay's she was dead.

Some say she died of old age. Some say Alzheimer's, because that's what she had. I guess that you could also make a case that she died of Pneumonia as well. She also had congestive heart failure, (the signs were diagnosed by the hospital a few days before her death, but were there, one and a half years before her death and ignored by her doctor -- repeatedly !!!) (Oh yea, turns out that the medication for Congestive Heart Failure? My dog had been on med's for that for over 3 years, drugs that my mom never got to save her life. Guess that I would have been better off if I would have taken my mom to MY VET, instead of HER DOCTOR all of those years). But, I know what really was the cause of my mom's death. She had a ****ty doctor.
There is a lot of that going around. !!!!!!!!!!!
THAT CAN KILL YOU AS WELL, AND NOT PLEASANTLY EITHER.

And, speaking of ****ty doctors, sounds like you have one as well. See, Alzheimer's does not come on by a blow to the head, or by a skull fracture, or exterior bruising or damage. AD is a disease at the cellular level, it does not come on over night and it is NOT the result of an injury Alzheimer's does not happen as a result of a stroke, or a blood clot to the brain, or water on the brain or swelling of the brain or as the result of ANY OTHER PHYSICAL DAMAGE OR INJURY NOR IS IT DUE TO ANY OTHER PHYSICAL CAUSE. It is just as much a long tern permanent cellular degenerative disease as cancer. AD however unlike cancer is not curable Alzheimer's is permanent brain damage and it is irreversible. All you can do is to treat the delusions, the psychosis, the psychotic behaviors, the anger, aggression, the inappropriate behavior patterns, sleeplessness, and the depression; and, all of the other symptom that is part and parcel of this terrible, horrible ---- disease.

SO PLEASE, ANYONE READING THIS DO NOT WITHHOLD NECESSARY MENTAL HEALTH DRUGS FROM A LEGITIMATE ALZHEIMER'S SUFFERER. !!!!!!!

I agree with all of the rest of the letter that you wrote. Never leave a loved one in a Hospital or nursing home or any care giving environment unattended and unprotected. Monitor their care on a continuous basis. Vitamins + minerals are essential to good health, especially Vitamin B and B Complex is good
"brain food". And don't forget potassium,. As far as a
program of exercise goes, that depends on the person. My mom was yelled at for years to get up and to be "independent". WALK, WALK, WALK....
First of all the doctor let her hip rot away with osteoporosis, and she was walking on bone + part-bone, part-thin air. And, secondly; with AD the person should not be yelled at to "WALK" with brain damage
any more than you should harp at Christopher Reeves to get up and walk with spinal cord damage..... ( It's one thing to be encouraging, another to be down right cruel )

And lastly, as far as trusting anyone other than loved ones to take care of someone,especially doctors, nurses and health care professionals and care facilities and other institutions; ....
I fully agree.
But even sometimes the people that love the sufferer of Alzheimer's turn away. Sometimes it's because they really ARE uncaring. But most often it's just because they just can't take it any more. The accusations, anger, yelling, raving and ranting and the mean and spiteful attitude. Many a spouse, a child, a relative, have turn away finally, because of the horrible abuse that they just can no longer bare. AD is an illness. It is a mental illness at the cellular level just like cancer. It destroys lives. It kills people and sometimes it murders the family as well. And it tortures and destroys relationships. What it does to the body is sad. But, other diseases can also just kill you. No other disease kills souls, hope, love, and relationships, and human dignity quite as cleanly and swiftly and effectively, and as irreversibility as this one. It's not just what it can do to your body, but what it does to the human mind. And what the repercussions of that mind altering condition causes. The loss of human relationships is the real grief factor here. It's not just the loss of the body. It's the very essence of the person, that is the real loss.

As to your doctor and the care of your dad. Sounds like you shouldn't be trusting your doctor either. If you got a legitimate diagnosis of AD form your dad's doctor and he is treating a skull fracture with mental illness drugs, sounds like you should be seeing your
attorney instead of your dad's doctor. New, he may have been treating the "Alzheimer's-like" or "Dementia-Like" symptoms caused by your dad's brain injury; but I doubt very strongly that he is treating your dad's sudden attack of AD caused by a fall. THAT'S JUST NOT POSSIBLE.

As you know, the only way to positively diagnose AD is thru an autopsy. To properly diagnose AD with any certainty one must rule out physical causes and for that, brain scans, x-rays, and blood tests (for chemical imbalances) are done, to rule out all physical causes for the symptoms What you have left is a disease at the cell level, and this disease attacks the brain and permanently destroys cells --- slowly and methodically. It is irreversible, and incurable. So, if I were you, I'd look again at that "skull fracture" there was "physical" damage there. And if left untreated, and if not treated properly, then you have a case for a hell of a law suite.

You know I really hated to give you that piece of advise. One reason is because I did get over my anger long enough to go to 1 Alzheimer's meeting once. Knowing that AD takes years and years to develope, and that this disease ran in my mom's family and that she
had been throwing all the symptoms for decades (known by; yet, untreated by her doctor). Like I say, I was so angry that no one had diagnosed her or treated her for 10-15 years with this disease. But, I pulled myself to an AD support group and my main question
and concern was, "How the Heck do you ever bet a diagnosis for this disease so that you can get treatment?" Three were 18 people there, with loved one's in all stages of the disease. The answer was, "Well, you don't" Everyone agreed that you just can't get a commitment from a doctor. They just won't put their butt on the line. Law suites I guess.?
So, if you take on a doctor for the treatment of AD, when it's pretty much clear as a bell, that there is a physical cause here, it could just further traumatize the Medical Profession into keeping quiet about AD, and therefore, many more patients will be denied the mental health drugs that they so desperately (and that their families and care givers so desperately), need.

At any rate, I do wish you and your dad well.


Take Care,
Hugs to you and to your dad,

Gizmo



Sallen 09-30-2001 03:44 PM

And there are good docs out there, believe me. My mother's doctor has my trust, mainly because he does everything possible to make her quality of life the best possible. She is on Zoloft (10 mg per day) for depression, and a drug for anxiety attacks. (We have a family history of both, not necessarily caused by her age.) He trusts me to let him know where she's 'at' in the area of memory, pain, ect. He is also *my* doctor, and while that is often not the best combination, for us it works very well. The most important thing is that there is a level of trust between us...he knows me, knows how committed I am to Mom, and also 'nags' me when he sees me not taking proper care of myself. I will be forever grateful that we found this wonderful, caring man to see to Mom's needs...



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