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Ever Have A Relative/friend With Alzheimers?  
User currently offlinePs76 From , joined Dec 1969, posts, RR:
Posted (2 years 5 months 3 weeks 3 days ago) and read 1785 times:

Hi,

I don't know if this is really the right forum to ask but thought I'd try to get some more experiences if possible if anyone's had with alzheimers disease. My experience was from an aunt and uncle (my Mom's sister). Although they used to live in Chicago and us in the UK we saw them both quite a lot growing up and as teenagers. They were both quite healthy for most of their lives and even up to a few years ago my Mum used to speak to her sister on the phone daily. The problem came for them when they moved house from Chicago to California. I'm not sure why they moved but they left behind a lot of friends and relatives and ended up quite isolated and it (I think) had a bad effect on their health. My aunt was always a very social person and my uncle a keen businessman who did well for himself but when isolated my aunt developed alzheimers and my uncle too with Parkinsons also. My cousin took care of his sick parents for a couple of years until he could no longer manage it and they were forced to put them in hospice care. Although this was the only option he had left they hated leaving their house and their health only deteriorated much more when in a home. Last year my aunt passed away and my uncle is still in the home but barely sees anyone or says anything.

My Moms other sister and her husband live in Bournemouth in the UK and are also quite isolated now as their kids all have families of their own and they don't drive any more. My aunt repeats herself a lot and forgets a lot of things when you tell her now. She talks always about seeing where she grew up in Iraq and going back to Baghdad like it was beautiful in the 40s! Both my mum and cousin have told me that she is acting very much like my other aunt when she developed alzheimers.

My mum says that when she grew up in Iraq where families and extended families tended to stay together much more as people grew up there weren't such problems as alzheimers and dementia as people got older. I don't know if there's any truth to that but it's what she thinks.

Anyway this is probably a very inappropriate forum to ask but just thought I'd do so as I didn't feel like going to one of those health forums.

Any opinions/experiences welcome.

Many thanks,

Pierre

25 replies: All unread, showing first 25:
 
User currently offlineDocLightning From United States of America, joined Nov 2005, 20336 posts, RR: 59
Reply 1, posted (2 years 5 months 3 weeks 3 days ago) and read 1780 times:

Yeah. My mom has AD (Alzheimer's Dementia). I don't think it's histologic Alzheimer's because my grandparents both had the same and neither had histologic AD on autopsy. But clinically, it's AD.

Very frustrating, because they don't remember that they don't remember. So they will swear up and down that they aren't having any trouble with their memory, refuse all help, etc. And then they forget to take their meds. There are meds for it. They don't change the ultimate outcome, but they can turn back the clock by a few years.


User currently offlinevikkyvik From United States of America, joined Jul 2003, 10335 posts, RR: 26
Reply 2, posted (2 years 5 months 3 weeks 2 days 22 hours ago) and read 1747 times:

My step-grandmother had Alzheimer's. It's one of the most difficult things I've ever seen a family have to go through. My stepmom was the one who was the most involved with everything (of course, her siblings helped too, but one lived in Oklahoma for the first few years, and the other worked), and it was incredibly difficult on her. Her father was deteriorating at the same time, though physically, not mentally.

Honestly, I should have been a lot more helpful than I was. No excuse really, other than I just didn't really know what to make of the whole thing, and really didn't know what my place was.

Anyway, she hung on for quite a long time. For the last few years, she was in an Alzheimer's facility, which was a huge relief (spots are very hard to get). It was heartbreaking to see someone who used to be so vital and full of life reduced to basically a shell of a human being.

Terrible condition. I don't even like talking about it. I saw that movie The Notebook awhile ago, and when it got near the end, I almost cried. And I don't cry at movies, especially not at more chick-flicky movies. But I just couldn't really take it.

Really makes you realize that once you start losing your memory, you basically start lose who you are as a sentient human.



How can I be an admiral without my cap??!
User currently offlineRara From Germany, joined Jan 2007, 2168 posts, RR: 2
Reply 3, posted (2 years 5 months 3 weeks 2 days 19 hours ago) and read 1716 times:

My grandmother had it. What I remember as the most chilling moments were actually not moments of dementia, but sudden moments of clarity. Like when looked at me at a family gathering, and said "there are all these people around me, and I should know them, but I don't know who they are." Followed immediately by the usual pretence of normality which they always do.

Funny moments too. Once, when she was already beyond everything, we needed to do some legal stuff with her possessions, my grandfather's bequest etc., and not wanting to go through the trouble of declaring her certifiably insane, we actually had to do the opposite and have a notary testify her sanity.   So halfway through the proceedings, everything went rather well, she signed some documents etc., and then she suddenly said to the notary (total stranger): "My, Peter, how much you've grown recently!" Tense moment, but he smiled it away and declared her to be of sound mind and disposing memory...

But yeah, it sucks. Terrible condition for everyone involved.



Samson was a biblical tough guy, but his dad Samsonite was even more of a hard case.
User currently offlineNoUFO From Germany, joined Apr 2001, 7966 posts, RR: 12
Reply 4, posted (2 years 5 months 3 weeks 2 days 17 hours ago) and read 1701 times:

Yes, in fact I visited him last week. It is painful to see a once intelligent, professionally successful and sought after man trying to keep himself busy with math worksheets for 1st graders - often failing to solve them. He has severe difficulties speaking one single meaningful sentence. It never gets more elaborate than "It is quiet here. That's nice." And he doesn't recognize anyone, in fact sometimes he would get upset because he thought I was some sort of an intruder, maybe even a burglar. I try seeing him about every three months (he lives about 700 km away from here), and everytime I am there, I notice one or another change for the worse.

At the same time, it seems that he's calm and pleased with his situation. That was different when he recognized that he was suffering from dementia. Back then he was often depressed I am afraid - he never told me he was, but it seemed reasonable. Now it is mostly me who is struggling, but that's okay I guess.

I am just glad he lives in a flat he shares with other patients suffering from dementia. The living group provides a friendly and much more open atmosphere than the typical retirement home.



I support the right to arm bears
User currently offlineSTT757 From United States of America, joined Mar 2000, 16907 posts, RR: 51
Reply 5, posted (2 years 5 months 3 weeks 2 days 17 hours ago) and read 1695 times:

Yes my beloved Grandmother, she was a really special person to me and it was hard for me that she didn't recognize me anymore. One thing the Alzheimers did was not only change her mental state but her physical state, she looked like a totally different person then the person I knew prior to her onset. I remember the last time I saw her, she was in our kitchen and I was giving her a hug and kiss as her and my Grandfather were leaving to Winter in Florida. I don't know how to explain it bu after I hugged and kissed her she looked at me and it was her again, for a few seconds she looked like the person I remembered, like her soul reentered her body. She looked at me a whispered that when I was a little kid I didn't like all that "funny stuff". That was the last time I saw her, she died while in Florida a few months later. However that one moment in my parents kitchen has stuck with me all these years later.


Eastern Air lines flt # 701, EWR-MCO Boeing 757
User currently offlineDocLightning From United States of America, joined Nov 2005, 20336 posts, RR: 59
Reply 6, posted (2 years 5 months 3 weeks 2 days 11 hours ago) and read 1649 times:

Quoting Rara (Reply 3):
Funny moments too.

My grandmother spent her last few years in a nursing home. The last time I saw her, we sat with her while she had dinner, but we didn't eat. When she asked why we weren't eating, my cousin gave her a different answer every time: "We already ate!" "We're waiting for our food! But go ahead! Yours will get cold!" "We just had our plates cleared, Nana!" Every time, she just bought the answer and then three minutes later would ask us why we weren't eating.

Later, I commented that it was interesting that there didn't seem to be any men in her facility. She answered: "Well, men don't usually come to resorts like this."    I guess it's best that she thought of it that way!


User currently offlinedarthluke12694 From , joined Dec 1969, posts, RR:
Reply 7, posted (2 years 5 months 3 weeks 2 days 11 hours ago) and read 1643 times:

My Grandma had Alzheimers. I'm 18, and all of my life she had it. I can barely remember when I was little when she was actually normal and could move around and talk. But as the years went on, it got worse. For probably 10 years, my grandma couldn't walk on her own, eat on her own, go to the bathroom on her own, or even talk, just the occasional mumble. She sat in her chair all day and watched tv with my Grandpa (but what else could they do?). But she never went to a facility. My Grandpa took care of her everyday, all of those years, he never even thought once of putting her in some sort of facility. He took care of her by himself. He did everything for her, dressed her, fed her, etc. Unfortunately, that meant my Grandpa was stuck in the house 24/7. The only time he could leave was when someone came and watched her, which was about once a week (my parents and I live 6 hours away, so we couldn't help much). But if that isn't love and dedication, then I don't know what is. Sadly, she died about 5 years ago because she got sick, and her body just couldn't fight it off. She had Alzheimers pretty bad, but I knew for a fact she always remembered family. Every time we came to visit she had a huge smile on her face when we walked through the door and we just knew she knew who we were.

User currently offlinelewis From Greece, joined Jul 1999, 3678 posts, RR: 5
Reply 8, posted (2 years 5 months 3 weeks 2 days 11 hours ago) and read 1642 times:

My grandmother. It started with her being forgetful but then she started forgetting who we all were and was connecting us with people in her very early age. She lived with us for a long time in this state but then she had to be taken to a care facility as she needed continuous medical supervision. Then it started seriously affecting her motor skills and her behavior changed. She passed away about a year ago, in her final days she couldn't even get out of bed. It is truly a very frustrating condition since the person stops being the person you knew all the years. I can't even imagine how it is to live for years without realizing where you are, why and who are the people surrounding you.

User currently offlinerfields5421 From United States of America, joined Jul 2007, 7607 posts, RR: 32
Reply 9, posted (2 years 5 months 3 weeks 2 days 10 hours ago) and read 1627 times:

My mother passed away in March 2008 after years of Alzheimer's. She lived over 13 years in nursing homes, completely unaware of anyone and uncommunicative. She only lived so long because my father visited her almost every day, fed her 3 meals a day for years, walked her every day possible, and made himself a pain in the rear to the nursing home staff so that Mom got the best possible care.

The disease also claimed her mother, two older sisters and a younger brother. The last remaining brother has Alzheimer's.

My oldest first cousin, now 70, hates what she percieves as the rest of us looking to see if she is showing signs.

Being within spitting distance of 60, it is on my mind whenever I'm forgetful.

We can now look back and see where my mother's mental abilities were slipping in 1978 - 30 years before her death. By 1988, she could not be trusted to drive or keep the household financial stuff. By 1992, she could not recognize any of her six children, or her husband most of the time.

One of my few good memories of that time was in the summer of 1993. I was water skiing behind Dad's boat and fell hard, giving up for the day. As I climbed into the boat, Dad joked to Mom "Betty do you want to ski?" She said Sure.

And there we were - pulling a 68 year old woman down the lake on a slalom ski behind a boat with her husband and oldest son - she could not name either of us, or identify our relationship to her if asked. With a smile a mile wide on her face, having a wonderful time.

PS - she was 42 before she ever learned how to ski.


User currently offlinena From Germany, joined Dec 1999, 10817 posts, RR: 9
Reply 10, posted (2 years 5 months 3 weeks 2 days 8 hours ago) and read 1592 times:

Alzheimer and dementia are more or less the same if it comes to what is really happening.

My dad was in the first stages of dementia (started after a minor stroke) when he suddenly died from a second stroke (thankfully I have to say in retrospect). It was very hard when he called in the family to confess that he was suffering from dementia, 5 months later he was dead. Sitting next to my mom, he justs slipped from his seat, over. My oldest aunt is currently losing her mind, but she´s in her late 80s. At the moment she is at a stage were she still recognizes me, but she has to ask. And she´s asking 10 times a day what day it is. The only thing that interests her is the weather forecast on TV, only to forget it 10 minutes later.

I remember the mother of my best friend who had Alzheimer (she´s dead since), . We were standing at the pool of the Spanish house of my friend where she had only been once before, and she turned to me saying " oh, I still remmeber when my little boy swan in the pool decades ago". Scary.

The mother of another friend had Alzheimer too. She was an Alcoholic. She could not remember if she had drunk one glass, or two bottles of wine. That was the moment her sons took her to a nursury home wher she died after a few years. She was cared for as she and her sons are all rich.

My grandma, who died in the 1970s when I was still a young boy, nmust have had something like it too. She died in her early 70s. The only thing I can remember of her is that she´s sitting in the kitchen peeling potatoes and singing always the same strange song about the illfated Roman warlord Quintilius Varus.


User currently offlineNoUFO From Germany, joined Apr 2001, 7966 posts, RR: 12
Reply 11, posted (2 years 5 months 3 weeks 2 days 7 hours ago) and read 1569 times:

Quoting na (Reply 10):
The mother of another friend had Alzheimer too. She was an Alcoholic.

Then perhaps it was the Korsakoff's syndrome - a different form of dementia than Alzheimer.
Many people consider Alzheimer and dementia synonyms when, in fact, Alzheimer always means dementia, but dementia does not always mean Alzheimer.
The Alzheimer desease is just the most frequent form of dementia.



I support the right to arm bears
User currently offlinePs76 From , joined Dec 1969, posts, RR:
Reply 12, posted (2 years 5 months 3 weeks 2 days 7 hours ago) and read 1563 times:

Hi!

Many thanks for the replies. It was interesting reading people's experiences. I never really saw much of my aunt when she was ill since she lives 4000 miles away. I feel sad that's she's gone but she lives on in my memory and I'm very glad that I spent many summers with my brother staying at her house in Chicago and having good times.

Many thanks,

Pierre


User currently offlineAir380 From United States of America, joined Jul 2005, 181 posts, RR: 0
Reply 13, posted (2 years 5 months 3 weeks 2 days 5 hours ago) and read 1549 times:

My father died last year of dementia. He had it for at least 10 years and spent his last 2 in a nursing home. At the end, he could not swallow and since he signed a living will, he did not get feeding tube. I am still feeling that he was dehydrated/starved to death and struggle with that. I would have given him something to ease his passing.
He was a smart guy and it was a blessing that he did not know his condition.


User currently offlinePs76 From , joined Dec 1969, posts, RR:
Reply 14, posted (2 years 5 months 3 weeks 2 days 4 hours ago) and read 1531 times:

Hi!

Quoting NoUFO (Reply 4):
Yes, in fact I visited him last week. It is painful to see a once intelligent, professionally successful and sought after man trying to keep himself busy with math worksheets for 1st graders -

My Dad doesn't have alzheimers fortunately but is in a wheelchair now and can't really move or talk. He was a very successful businessman who made millions. Now he plays connect 4! It's good to get his fingers moving. I am only very thankful that his mind is still in tact and his condition is not terminal.

Many thanks,

Pierre


User currently offlinearmitageshanks From UK - England, joined Dec 2003, 3645 posts, RR: 15
Reply 15, posted (2 years 5 months 3 weeks 2 days 2 hours ago) and read 1516 times:

Quoting Air380 (Reply 13):
My father died last year of dementia. He had it for at least 10 years and spent his last 2 in a nursing home. At the end, he could not swallow and since he signed a living will, he did not get feeding tube. I am still feeling that he was dehydrated/starved to death and struggle with that. I would have given him something to ease his passing.
He was a smart guy and it was a blessing that he did not know his condition.

My grandfather had alzheimers for about 10 years and died two years ago. The last 3 years were the worst and the last year he was basically bedridden and unable to do anything for himself. Our family hated seeing him suffer such a terrible protracted death asked the doctors if they could do anything to make him more comfortable, they said yes, and he was dead less than 24 hours later. We all knew what was going on but it was for the best.


User currently offlineNoUFO From Germany, joined Apr 2001, 7966 posts, RR: 12
Reply 16, posted (2 years 5 months 3 weeks 2 days 2 hours ago) and read 1510 times:

Quoting armitageshanks (Reply 15):
asked the doctors if they could do anything to make him more comfortable, they said yes, and he was dead less than 24 hours later. We all knew what was going on but it was for the best.

That's what a living will is good for. Ask your GP how to write one.



I support the right to arm bears
User currently offlinerfields5421 From United States of America, joined Jul 2007, 7607 posts, RR: 32
Reply 17, posted (2 years 5 months 3 weeks 2 days 1 hour ago) and read 1505 times:

Quoting Air380 (Reply 13):
At the end, he could not swallow and since he signed a living will, he did not get feeding tube. I am still feeling that he was dehydrated/starved to death and struggle with that.

We are pretty sure that my mother finally died from choking on some food or water given by the nursing home staff. She didn't have a feeding tube either.

My father feeding her and trying to get her to drink water cause her to get some of the food or water in her lungs. She had three hospitalizations for infections caused by this during her last year. We children had finally demanded that he no longer try to feed her, and that he should not give her water.

I saw her on a Sunday afternoon before returning to Dallas two days after we had laid down these requirements for him.

Dad visited her the next morning between breakfast and lunch - demanded the staff clean her properly before he returned home for lunch and a nap. They called my sister about a half hour later and said they have found her dead in her room. My sister drove the 30 miles to Dad's house, woke him and told him.

While there is suspicion about how quickly she passed after this change - it is not something to pursue.

My mother talked often when we were teenagers as her mother was dying from the disease. She most absolutely did not want to be kept alive by any artifical means. She also insisted that if she got this horrible disease - we were not to work to keep her alive in a nursing home. To 'let her go'.

Dad will have to explain to her in Heaven why he didn't follow her wishes.


User currently offlinearmitageshanks From UK - England, joined Dec 2003, 3645 posts, RR: 15
Reply 18, posted (2 years 5 months 3 weeks 1 day 2 hours ago) and read 1457 times:

Quoting NoUFO (Reply 16):
That's what a living will is good for. Ask your GP how to write one.

I have one for myself as does the rest of the family. We made one for him, too. In the end though whatever the family wants is whats going to happen regardless of what the DNR or living will says.


User currently offlinechrisair From United States of America, joined Sep 2000, 2185 posts, RR: 3
Reply 19, posted (2 years 5 months 3 weeks 1 day ago) and read 1436 times:

My grandmother had it. It is an awful, awful experience.

User currently offlineNoUFO From Germany, joined Apr 2001, 7966 posts, RR: 12
Reply 20, posted (2 years 5 months 3 weeks 16 hours ago) and read 1403 times:

Quoting armitageshanks (Reply 18):
In the end though whatever the family wants is whats going to happen regardless of what the DNR or living will says.

I don't think this is right. If a living will is drafted precisely enough, the doctors should have little to no doubs about the will of the patient.



I support the right to arm bears
User currently offlinerfields5421 From United States of America, joined Jul 2007, 7607 posts, RR: 32
Reply 21, posted (2 years 5 months 3 weeks 15 hours ago) and read 1394 times:

Quoting NoUFO (Reply 20):
I don't think this is right. If a living will is drafted precisely enough, the doctors should have little to no doubs about the will of the patient.

Yes, and no.

Doctors are human, and when faced with close relatives strongly opposed to not sustaining life - they will almost always defer to the family.

It is not in the family's best interest, or in the best interest of the doctor or the hospital/ hospice to have a contentious disagreement at that unhappy time.

Normally a doctor, in the US at least, will want a court order to oppose a surviving spouse or child in a decision which would end the life, even if that decision is clearly spelled out in a Living Will and/or DNR.

This is why the most important part of making a living will is for the person to clearly explain their choices and reasons to their family.

We came to a point close to that with my mother over a feeding tube. My mother has long ago given power of attorney over her care to my sister, specifically excluding my father from making those decisions. She also had a living will and was very clear in it about not wanting a feeding tube if it became necessary.

When the time for that decision came - my father wanted a feeding tube. The nursing home consulting physician asked us children to all to come in for a conference. His point was that despite mother's documented wishes, if we could not persuade our father to change his mind - he would have the feeding tube placed. He was very specific that the only way he would go against our father's wishes was with a court order.

The point was that my father was not ready to let her go. It was necessary and important that we six children present him with support and understanding - but convince him that no feeding tube was what Mom wanted.

That way we went to the funeral less than a year later as a united family in our grief, not as a bitter, fighting family as I've seen too ofthen.

As much as a DNR or living will is for the patient - the decision is just as important to the surviving loved ones.


User currently offlinestarbuk7 From United States of America, joined Apr 2008, 599 posts, RR: 5
Reply 22, posted (2 years 5 months 2 weeks 6 days 16 hours ago) and read 1335 times:

Everyone should know about this. Very interesting.

Coconut oil watch to the end - A Real Eye Opener!

http://www.cbn.com/media/player/index.aspx?s=/mp4/LJO190v1_WS

And here is some more information about coconut oil.

http://healthimpactnews.com/2011/80-uses-for-coconut-oil/


User currently offlineFlighty From United States of America, joined Apr 2007, 8765 posts, RR: 3
Reply 23, posted (2 years 5 months 2 weeks 6 days 16 hours ago) and read 1326 times:

Definitely when I am old, I will be treating myself with a .45 automatic, rather than deal with a confirmed Alzheimer's diagnosis. I've watched it and the decision to get out of Alzheimer's would be the simplest decision ever made.

User currently offline777 From Italy, joined Sep 2005, 515 posts, RR: 0
Reply 24, posted (2 years 5 months 2 weeks 6 days 13 hours ago) and read 1305 times:

I just had this experience around 20 years ago, when the father of my ex-girlfriend had the Alzheimer:.
At that time he was relatively young (between 50 and 55) and it has been shocking for me to see what Alzheimer means: impossibility to be independent (even in the simplest daily activities), unable to recognize relatives/friends for a large part of the day, sometime unpredictable/irrational actions.

Regarding some funny stories inside this tragedy, I have one related to my grandmother (not under the effect of the Alzheimer but with dementia senilis): years ago, before she passed away she called my mother telling her “hey, there is an unknown man in the house”. My mother ask her “OK, pass me him on the phone!”. He was my grandfather…

[Edited 2012-07-02 09:07:40]

User currently offlinezippyjet From United States of America, joined Sep 2001, 5540 posts, RR: 13
Reply 25, posted (2 years 5 months 2 weeks 4 days ago) and read 1172 times:

My mom (aka "B-Momma") has advanced "AD"/Alzheimers. Thank God she's in an excellent care facility which is minutes from my apartment. My mom is 80 and started developing it late in 2004 after she had major bowell re-structuring surgery afer her colonoscopy showed tumors. The operation was a success but all the anasthesia and the stress of surgery probably kick started the Alzheimers. At first she forgot things and gradually went downward. My dad tried to be the end all caregiver and it was a lot of stress. I could write a mini novel on some of the stories. Most are sad some believe it or not are hysterically funny. I can not stress enough! besides showing never ending love you have to keep your wit and sense of humor about you otherwise you will go crazy!

Sadly my dad (aka "B-Daddy") developed pancreatic cancer and passed two years ago. Toward the end mom went to a great assisted living home. Pat who ran it saved my mom's life. Right after Thanksgiving 2009, Pat checked up on mom and mom was swallowing and breathing funny (she has asthma). Turned out mom had a stroke and went to John Hopkins Hospital where she was in a coma for a couple days. Thankfully she awoke and my dad got her into Levindale (Hebrew Hospital and Geriatric Center for the Aged). B-Momma has been there ever since. Several months ago, my mom got a room in the new living center. It's almost like a hotel room. My dad would be happy for B-Momma as money was always tight in their household. My dad like Ralph Kramden always was working on some get rich fast / multi level marketing thing. The only silver lining to this cloud is because of mom's advanced Alzheimers she doesn't realize dad passed on. At least thats what we think. B-Momma can talk, fast and loud and every once in a while lobs an "F" bomb or two.
If you go to my facebook page you can see a couple pics of my mom. She sort of looks like a hairless Chinese Crested doggy (my warped humor). I take my hat off to the staff of Levindale. My sister and me feel B-Momma is in great hands!
B-Momma did get booted out of senior yoga because she kept yapping during the sessions.

Not to get political but one of the reasons the Republicans have 2 solid strikes against them is they pandered to the religious fanatics and blocked stem cell research setting the science back 20 years. Imagine where we'd be if Bush and his right wing bible thumbers and Ronnie Reagan didn't block stem cell research!



I'm Zippyjet & I approve of this message!
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