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Alzhiemer's

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posted on Jul, 6 2015 @ 06:29 PM
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originally posted by: Aldakoopa
My thoughts are with you and your family.

I was in a very similar situation as you a couple years ago. I'm currently 24, but back in December of 2011 my dad started acting... strange. He was put on paid administrative leave (or something like that) from work in the spring of 2012, and was then diagnosed with Alzheimer's in the summer of 2012 and could no longer work and had his license to drive revoked, sparking the idea that he could get a scooter since they don't require licenses in NC. By the end of 2012 his speach was starting to get slurred, he was convinced somebody "stole his scooter" that he never had, and had no sense of time; He would sleep for a couple hours at a time and would wander around, often going outside in the middle of the night looking for his scooter, going to houses around the neighborhood and looking in odd places for this scooter; including under my sister's kitchen sink in the cabinets! If it wasn't so sad it would be funny...

But you're right. It's just like watching someone die slowly in front of you but there's no way you can help. By the spring of 2013 my dad could no longer talk and was having trouble walking. He fell many times that spring/summer, trying to walk but falling over. It wasn't much longer and he couldn't walk at all, and he passed away in his sleep at the age of 61 in late fall of 2013.

It was about 18 months from the time that he was diagnosed until he passed away. I miss him every day... but not the way he went out. I miss who he was before. My mother took care of him the entire time, with the help of my sister, brother-in-law, and I, and in the later stages some home hospice workers.

I'll never forget the morning my mom called about 2 or 3 AM, crying saying he had died. I've never gotten dressed and out the door so fast in my life, to go be with her. When my grandma came over, walked into the room and looked at him and said "My baby boy!" and started crying...

Alzheimer's is a terrible, terrible disease that I wouldn't even wish on my most hated enemies. Every time I hear or read news about a breakthrough in Alzheimer's research, or a possible treatment being tested, I always stop what I'm doing and pay attention. If I could I'd help out in ridding the world of this terrible disease, but there's nothing I have to offer. I was so glad when Joe from NLBS donated money to the Alzheimer's foundation. Stories like yours hit close to home for me.

Thanks for sharing your story, and once again, I'll keep you in my thoughts. I wish you the best, and I'm truly sorry for what you're going through. Stay strong.


Don't you wish more people could somehow understand this disease without having first hand experience? For me, I gave it little thought until I had to experience it.

Again, IMO the major issue is giving the person suffering and thier families help in the form of well trained/educated medical professionals. Which are eventually needed around the clock. Too many people/families go at this alone. Isolated. The future projections are troubling. Millions of people are going to develop Alzhiemer's in the near future, with no real structural plan in place to help with care.



posted on Jul, 6 2015 @ 08:38 PM
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My father died of early onset Alzheimers. He was diagnosed at 61 and died at 68.

His decline was much slower than your mothers, but the progression was the same.

At the end he was "living" in Vietnam during the Tet Offensive, he lived through in real life being in a bunker with 25 men, 4 of whom came out alive. His last speech was reliving that experience over and over and over. A true living hell.

We finally decided to disallow all medications except for palliative care (comfort care) pain and anti-psychotics, anti-depressents. Thankfully once we did that he died within a few months. Alzheimer's patients frequently get infections that go unnoticed because they are unable to articulate where the problem is or what it is. So a lack of antibiotics was what finally gave him the peace he so deserved. It was a very very difficult decision for my sister, mother and I, but we decided to give him into God's hands and take medicine out of the equation, except for comfort. We have never regretted our decision because his life was no longer a life, when he did speak, he was normally reliving the hell of Vietnam and knew only my husband (an army soldier) at the end.

I truly understand your pain.

I am now at the age where my Father first showed symptoms and live in abject terror that when I forget where I put my car keys, it is the first sign that I am entering the path to hell that is Alzheimer's. If I get it, I will insist while I am still "there" that from that moment on I will receive only pain and psychological meds to keep me free from psychological and physical pain. I'd rather die quickly of untreated pneumonia or a urinary infection or an infection from a cut, than to live for years in the hell hole of Alzeheimer's disease.



posted on Jul, 6 2015 @ 08:47 PM
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originally posted by: angelchemuel
I empathise with what you are going through. I lost my grandmother and mother just 2 years ago to this filthy disease.
It's heartbreaking.

As another member has mentioned, I too am taking coconut oil, not daily, just when I feel an 'urge'. I have told my children, as I am a candidate for it down the maternal line, that they are to put me in a home and only visit when they want to, not because they feel they should. They have already seen their grandmother and great grandmother die of it.....and that is quite enough.


Jane



I too started on coconut oil, I drink at a minimum 3-4 cups of coffee a day, and am doing everything that I see repeated from reputable sources as a preventative.

I am terrified personally, my grandmother and father both died of alzheimers. Grandmother at 10 years older than I am now, father was diagnosed at very close to my current age.

There is nothing in this world that terrifies me more. If I am diagnosed, I will get my first tattoo, it will say DNR (do not resuscitate) and it will be in the middle of my chest under my bra. I might even purposely get an infection which would be a much better way to die, and not actually be suicide.



posted on Jul, 6 2015 @ 10:30 PM
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An interesting article:

www.usatoday.com...

Basically talking about the oncoming Alzhiemer's situation. In generic fashion.



posted on Jul, 6 2015 @ 11:04 PM
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originally posted by: grandmakdw
My father died of early onset Alzheimers. He was diagnosed at 61 and died at 68.

His decline was much slower than your mothers, but the progression was the same.

At the end he was "living" in Vietnam during the Tet Offensive, he lived through in real life being in a bunker with 25 men, 4 of whom came out alive. His last speech was reliving that experience over and over and over. A true living hell.

We finally decided to disallow all medications except for palliative care (comfort care) pain and anti-psychotics, anti-depressents. Thankfully once we did that he died within a few months. Alzheimer's patients frequently get infections that go unnoticed because they are unable to articulate where the problem is or what it is. So a lack of antibiotics was what finally gave him the peace he so deserved. It was a very very difficult decision for my sister, mother and I, but we decided to give him into God's hands and take medicine out of the equation, except for comfort. We have never regretted our decision because his life was no longer a life, when he did speak, he was normally reliving the hell of Vietnam and knew only my husband (an army soldier) at the end.

I truly understand your pain.

I am now at the age where my Father first showed symptoms and live in abject terror that when I forget where I put my car keys, it is the first sign that I am entering the path to hell that is Alzheimer's. If I get it, I will insist while I am still "there" that from that moment on I will receive only pain and psychological meds to keep me free from psychological and physical pain. I'd rather die quickly of untreated pneumonia or a urinary infection or an infection from a cut, than to live for years in the hell hole of Alzeheimer's disease.





Thank you. Thank you for your post and sharing your experience.

This is another part of the equation. If we can or should provide life ending procedures. Not that you went there but you're scratching on that surface.

All I can say is if I was diagnosed with Alzhiemer's I would like to die my own way on my own terms. Which would be much earlier than the natural progression of the disease.

Choices like this require education. Most people don't know what Alzhiemers has in store or will go into denial when diagnosed.

My personal view, for myself, for my own life, would be a quick and painless death rather than being subjected to the disease. The only question would be at what point. I would perhaps make that decision myself. Without input from doctors. After diagnosis of course.

But ya, that's a whole other "debate". Should people be able to make end of life choices? To end their own lives... Is life "worth" living with this disease? It can be, to an extent. Not the late stages. Early and mid yes, but not the late stage. Life can still be enjoyable with Alzhiemers. There is joy to be found. Quality of life, living to be respected- life...but not at the late stage.

If I'm ever diagnosed I would like the option to end my life when the quality of life ends. This is a touchy subject. Another thing that should be discussed/debated. I would be heartbroken if my mom decided to end her life but I would understand. At this point she can't make that choice, so we're going to do everything within our power to give her quality of life.

In a perfect world we wouldn't be confronted with such "choices". I choose the path of least suffering. For myself.



posted on Jul, 7 2015 @ 12:12 AM
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a reply to: JeanPaul

I feel your pain.

My mum has dementia and so we prescribed coconut oil, fish oil, vitamins B & C garlic & zinc.

She began to come back to us, getting more aware and awake day by day. We were also seeing her and interacting every day.

Then the complaints began to came in from one particular nurse. We later found out that she complained to the Doctor who, in turn, suggested that there might be some negative interactions with mum's meds. We even had a relative with Power of Attorney side with the Doctor.

So we were forced to stop the supplements. The result was that within a week, she didn't recognize anyone, was permanently upset and confused.



posted on Jul, 7 2015 @ 01:31 AM
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I am deeply sorry you have to go through this. In 2013, I lost my grandpa due to this horrible disease. Many of the things you described are relate-able for me. I was always there for him from beginning to end. Most of my family couldn't bear to see him go through it so they stayed away for the most part. Come to find out that my Uncle has this disease the beginning of this year. It is horrible and I do not wish it on anybody. I hope you can get through these hard times.



posted on Jul, 7 2015 @ 07:47 AM
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originally posted by: JeanPaul

originally posted by: grandmakdw
My father died of early onset Alzheimers. He was diagnosed at 61 and died at 68.

His decline was much slower than your mothers, but the progression was the same.

At the end he was "living" in Vietnam during the Tet Offensive, he lived through in real life being in a bunker with 25 men, 4 of whom came out alive. His last speech was reliving that experience over and over and over. A true living hell.

We finally decided to disallow all medications except for palliative care (comfort care) pain and anti-psychotics, anti-depressents. Thankfully once we did that he died within a few months. Alzheimer's patients frequently get infections that go unnoticed because they are unable to articulate where the problem is or what it is. So a lack of antibiotics was what finally gave him the peace he so deserved. It was a very very difficult decision for my sister, mother and I, but we decided to give him into God's hands and take medicine out of the equation, except for comfort. We have never regretted our decision because his life was no longer a life, when he did speak, he was normally reliving the hell of Vietnam and knew only my husband (an army soldier) at the end.

I truly understand your pain.

I am now at the age where my Father first showed symptoms and live in abject terror that when I forget where I put my car keys, it is the first sign that I am entering the path to hell that is Alzheimer's. If I get it, I will insist while I am still "there" that from that moment on I will receive only pain and psychological meds to keep me free from psychological and physical pain. I'd rather die quickly of untreated pneumonia or a urinary infection or an infection from a cut, than to live for years in the hell hole of Alzeheimer's disease.






This is another part of the equation. If we can or should provide life ending procedures. Not that you went there but you're scratching on that surface.

All I can say is if I was diagnosed with Alzhiemer's I would like to die my own way on my own terms. Which would be much earlier than the natural progression of the disease.

In a perfect world we wouldn't be confronted with such "choices". I choose the path of least suffering. For myself.


Thank you, having seen the late stages twice now.
Well my choice is not to endure it.

I will however, during the early stages make it quite clear
that I am not to be given any life extending meds, to include
blood pressure meds, and will make it clear
that I am not to be given antibiotics or an IV or any surgery,
for any reason. I would prefer to go in the early to mid stage
when one is normally a sweet person who is sad
and a little confused; than to have to endure
the last stages and put myself and my family in hell.

By stopping all life extending meds and procedures,
it is not the same as suicide or murder.
It is letting nature take its course without interference.
When we did this for Dad,
we felt that we were letting God decide when he should go.

Dad was a pastor and had visited all the nursing homes
in the area, he choose his own home in the early stages.
He actually accepted going the nursing home in very well,
and mumbled at the time, is it time,
its time when he was lucid, very sad and heartbreaking.

He requested that meds be withdrawn
when he had to enter a nursing home.
But we waited until he was "living" in the
Tet Offensive to actually do it,
because it is such a hard thing to do
and some of his meds were really life saving
and going off them would mean certain death in a short time.

Thanks for the thread and the discussion.

I can't discuss this with family members yet
because when I try they all say "you are fine, you won't get it",
but the odds are against me with my grandmother
and father having it and my dad was early onset.

I have to think about it and decide now what to do and what I want.

My family is especially angry about the tattoo
I intend to get (DNR) that forbids all medical help
in an emergency if I am diagnosed.




edit on 7Tue, 07 Jul 2015 07:55:45 -0500am70707amk072 by grandmakdw because: format grammar



posted on Jul, 7 2015 @ 08:15 AM
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a reply to: JeanPaul

Please see my thread on Alzheimer's and share the knowledge

www.abovetopsecret.com...



posted on Jul, 7 2015 @ 12:36 PM
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originally posted by: angelchemuel
I empathise with what you are going through. I lost my grandmother and mother just 2 years ago to this filthy disease.
It's heartbreaking.

As another member has mentioned, I too am taking coconut oil, not daily, just when I feel an 'urge'. I have told my children, as I am a candidate for it down the maternal line, that they are to put me in a home and only visit when they want to, not because they feel they should. They have already seen their grandmother and great grandmother die of it.....and that is quite enough.


Jane



Visiting the care facility, ya. It was an adjustment for me. I kinda had a breakdown day before yesterday. The woman across the hall was moaning, very loud. The woman in the next room kept screaming "No, no no!". My mother kept looking at me...she was beginning to show signs of fear. That a stranger was in her room. All these things going on...I just kinda sat by her bed and cried. Had to leave rather quickly. Other visits have been good but it has been hard, adjusting to the various stages. Visiting is hard sometimes. I'll go a few days without going, just to "recharge".Then there's times I don't want to go but still do. Anyhow, my point, I wish my mom told me what you told your kids.

This may sound crazy, or selfish, but I've been thinking about, at what point is she "gone". At what point am I just visiting an empty shell? I don't know if I have the strength to literally watch her die in the end. My sister hasn't even seen her in a year. My brother goes once a month. Me and my father have kinda been going at this alone, as far as family goes. I'm beginning to get depressed. My courage or gumption has been slowly chipped away. It's probably time I go to some sort of support group. Or whatever.



posted on Jul, 7 2015 @ 08:56 PM
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I am so sorry, tears in my eyes, for you and for the suffering we must encounter, will it ever end.
There are really no words of comfort. I pray you find courage.
I agree with your aproach, the US is far behind other more civilized nations.
WIS

PS. Is that Jean Paul as in J.P. Sartre?


edit on 7-7-2015 by WalkInSilence because: ?



posted on Jul, 7 2015 @ 11:26 PM
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I lost my father to alzheimer's after my mother died of lung cancer and she fought hard. So I've seen both, and I can say that it was the cancer one that was harder on the whole family and my mother. She was fully aware of what was happening and when she died she was 65 lbs and had gone through 3 rounds of chemo to keep extending her life. This destroyed our family because it stretched her battle out over 2 years and it was clear from the beginning that there was only hope of extending life, not curing cancer.

The alzheimer's was also bad, but it wasn't as taxing on the family or my father. It seems to be socially acceptable now to take your Alzheimer's patient to a care facility at the point that they can't care for themselves or recognize you, but a cancer patient wants to be at home and doesn't lose their sense of self or mind. They want to be in their home and with their family. So it may seem callous, but you have no choice but to experience the slow crawl towards death. And I think its even more horrific for the patient who is conscious of the fact that they're slowly dying and suffering through the wasting. For me, the cancer death was far more difficult for the whole family and literally tore us apart. My father didn't appear to be aware that he was losing his memory or if he was, it didn't appear to be frustrating or scaring him in any way. He wasn't focused on avoiding death.

But having gone through both as a family member, I can say that they are the 2 worst ways to die - particularly for the survivors- and now the 2 most likely ways to die. I recognize that if 1 doesn't get me, the other will unless science catches up. I've lost most of my extended family to cancer now, so its a high likelihood. Apparently though, there is something in the Alzheimer genes that fends off cancer- or so they say. They found that Alzheimer's patients rarely die of cancer.



posted on Jul, 8 2015 @ 06:11 AM
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a reply to: JeanPaul

I watched my Grandpa go steadily downhill from Alzhiemers for 5 years before he mercifully passed away.

You are right OP, its a horrible disease in the fact that they are pretty much dead. The person they were no longer exists except for brief and rare moments of clarity that you describe.

They never remember you, or any good memories you've had with them, and you get to watch someone that you care about slowly fade away.

One thing I am very concerned about is my Dad is 75 now and I can see he might be getting it just like his father did.

I wish I could say something to make you feel better. Just know you aren't alone.



posted on Jul, 8 2015 @ 07:41 AM
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a reply to: JeanPaul

There seems to be some part there all the way until death, even if it's very small. Glimpses of a person we once knew, a bit like a ghost.

I have found that some things really seem to "stick" for some people though. For my grandmother, it was dogs. She never really had any through her life, and never had a huge interest, but they make a massive impact.

It really is difficult.

I try to just hang out like normal. In some ways, it really is a lot the same. I also notice that this type of inclusion works pretty well, even if the words said are gibberish. She is still telling stories, even if the words aren't there. It's almost like another language, and there are some relatable experiences that are shared.

We also learned that bi-weekly visits are best. More frequent or less frequently seemed to cause confusion issues. Kind of interesting, really.

And yes, the sick and infirm get ditched very quickly at nearly any age above 18 for any long term or terminal illness. Maybe a carryover behavior from much earlier days as a species?
edit on 8-7-2015 by Serdgiam because: (no reason given)



posted on Jul, 8 2015 @ 10:34 AM
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a reply to: JeanPaul

Kudos for bringing this to us, unlike cancer there is no coming back from dementia.

The fact that one can achieve so much in life only to forget it-it's unfathomable. Your spouse, your children...all lost in time, robbing people of their memories inflicts a pain that must be hard to endure for all involved.



posted on Jul, 8 2015 @ 09:21 PM
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Protips for staving off neurologically degenerative diseases:

(general)
• Regularly physical exercise
• Do not suck on death sticks or drink alcohol habitually
• Avoid trans fats, sugars and preservatives
• Exercise the brain, irrespective of age (*neural plasticity)

(specific)
• Gain as much new experience as possible -- even taking a different route to work makes a different (new information = new neural pathways); travel
• Read, write, watch and generally entertain oneself with activities that tax the brain (e.g., video games you find hard, books you find challenging to read (Shakespeare), learn new languages, take IQ tests) -- brain dead Hollyschlock KILLS braincells.
• Do everyday activities in a different way (e.g., brush your teeth with your unaccustomed hand, wash dishes using hands in the reverse manner you normally do)
• Exercise out of your comfort zone (e.g., anaerobic exercise / interval training; concentrate on form, tempo and technique over heavier weights / faster speeds)
• Avoid cranial trauma, of any kind; be it through sport, accidents, violence (*Chronic Traumatic Encephalopathy)
• Avoid aluminium contact with body (e.g., use gloves if you climb aluminium ladders often, use protective gear if you work in an applicable industry).
edit on 8-7-2015 by AlexJowls because: (no reason given)



posted on Jul, 9 2015 @ 09:04 PM
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a reply to: AlexJowls

Everything you said has a positive benefit and can postpone the onset of alzheimer's, but from what I've gathered its impact is on the order of maybe 3 to 5 years if you have the Alzheimer's gene. All of those things increase blood-flow in the brain, which is helpful. And 3 to 5 extra years is nothing to balk at.

Where those things really help more is for dementia that is not based on the Alzheimer's gene. Inactivity can result in an Alzheimer's like brain degeneration that is completely avoidable.



posted on Jul, 11 2015 @ 02:48 PM
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a reply to: JeanPaul


Alzheimers is an awful, awful disease. And, it's one disease that takes all the pleasure out of your golden years. It doesn't seem fair that some people have to greet death like that. You shouldn't feel guilty for putting her into a specialized care facility. It isn't like you had the money to put her there, and refused. You have nothing to be guilty about. I know. I felt the same way when my Mother and my Wife died.

This to shall pass.




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