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Spending Time With My Aunt With Alzheimer  
User currently offlineAR385 From Mexico, joined Nov 2003, 6474 posts, RR: 32
Posted (3 years 11 months 2 weeks 6 days 1 hour ago) and read 2268 times:
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I came to Argentina to mostly spend time with my family and with my aunt that I very much love who was diagnosed with Alzheimer 10 years ago. My cousins took the opoortunity to take a break so most of my days here in MDZ, aside from a little sigthseeing and the bars at night I spent with her.

It´s been very hard. I had never spent time with a person with that awful disease and it´s not really something that I would like to do again. She was such a strong willed, intelligent, physically active lady and now she is just an entity with the personality of a small child, in her good days.

Memories come and go and she breaks out crying and gets full of anguish because she wants something that does not exist anymore or wants to go to a place that is just not there anymore or wants to chat with someone who´s been dead 15 years. When I tell her, very sweetly, she breaks out in sobs.

Se recognizes me sometimes, others thinks I´m her late husband or one of her sons.

She forgets to feed herself, but then believes she just ate, so if you are not careful, malnourishment is just around the corner.

Sometimes she slees the whole night, other nights she just wanders around and i have to get her back to bed, sometimes 3-4 times a night.

What an awful disease, I really hope with all my heart that a cure is found soon. Seeing that wonderful woman that my aunt was, in her current state is just so sad.

12 replies: All unread, jump to last
 
User currently offlineflyorski From United States of America, joined Dec 2004, 996 posts, RR: 1
Reply 1, posted (3 years 11 months 2 weeks 6 days ago) and read 2246 times:

That is a really touching story. I wish you the best, and I agree, I hope a cure can be found. It sounds really strong of you to deal with her in this difficult state. I have been fortunate enough to not know anyone personally afflicted with this disease, however its apparent its really difficult on you. Good luck.


"None are more hopelessly enslaved, than those who falsly believe they are free" -Goethe
User currently offlineWarRI1 From United States of America, joined Sep 2007, 9202 posts, RR: 11
Reply 2, posted (3 years 11 months 2 weeks 6 days ago) and read 2245 times:

A terrible disease, my sympathy to you and your family.


It is better to die on your feet, than live on your knees.
User currently offlinecomorin From United States of America, joined May 2005, 4903 posts, RR: 16
Reply 3, posted (3 years 11 months 2 weeks 5 days 14 hours ago) and read 2182 times:

AR385, I was very moved by your post and thanks for sharing. It's scary to see a loved one suddenly not be there, just like that, not to mention how unsettling it must be for them.

There is no cure and this is a progressive disease. Hopefully medical science will at least progress to a point where the the symptoms can be arrested.

I wonder what is the best course of action for the patient and the family. The cold finality of a nursing home or stay at home with family and familiar surroundings?

All said and done, must feel good to do what you can and be of help to your Aunt.


User currently offlineMWHCVT From United Kingdom, joined Oct 2008, 728 posts, RR: 0
Reply 4, posted (3 years 11 months 2 weeks 5 days 12 hours ago) and read 2151 times:

I understand this all to well, you and your family have all of my sympathy as Alzheimer's and Dementia are truly terrible conditions for the suffer but even more so for the families of the suffer. Once it has truly taken hold at least you can take some solace from the fact that due to the nature of the disease the suffer is often unaware of there suffering and forget quickly after they have become upset, in situations as you have described.

My grandmother who died in late October this year had suffered with this disease for well over 10 years and it was truly heartbreaking at times and often very hard work, I would often sit with and talk to her for an hour or more and we would have the same conversation 20 times over.

I will always miss my grandmother as she was the only living grandparent that I had but I am glad that she has finally been released from the disease, I am sure you will understand my sentiment in this point.

Best Wishes.

Matt
MWHCVT



Must think up a new one soon, slow moving brain trying to get into gear ;)
User currently offlineAeroflot777 From Russia, joined Mar 2004, 3012 posts, RR: 26
Reply 5, posted (3 years 11 months 2 weeks 5 days 10 hours ago) and read 2133 times:

Quoting comorin (Reply 3):
I wonder what is the best course of action for the patient and the family. The cold finality of a nursing home or stay at home with family and familiar surroundings?

AR385, thanks for sharing.

My great grandmother had this disease - definitely hard on all those involved. It might be very tough mentally and emotionally to have the conversation 10 million times over again in a span of one hour, but once they are gone - you'll miss it, no matter how tough it was.

My great-grandmother was in a similar position - wanted to go home to a place which no longer existed, read the same page in a book over and over again for longer than 7 years. Thought I was her son on one day, her grandchild the other. Wanted to see family members that were no longer alive. Luckily, my grandmother (who just passed away herself less than a month ago from cancer) took great care of her and made sure she was fed and taken care of.

Haven't though about all this in quite some time. Thanks for your post, as it made me re-live the memories - which were thankfully pleasant. Never let negative thoughts overshadow the positives in life.

Aeroflot777


User currently offlineAR385 From Mexico, joined Nov 2003, 6474 posts, RR: 32
Reply 6, posted (3 years 11 months 2 weeks 1 day 9 hours ago) and read 1997 times:
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Quoting flyorski (Reply 1):
That is a really touching story. I wish you the best, and I agree, I hope a cure can be found.
Quoting comorin (Reply 3):
AR385, I was very moved by your post and thanks for sharing. It's scary to see a loved one suddenly not be there, just like that, not to mention how unsettling it must be for them.
Quoting comorin (Reply 3):
I wonder what is the best course of action for the patient and the family. The cold finality of a nursing home or stay at home with family and familiar surroundings?
Quoting MWHCVT (Reply 4):
Once it has truly taken hold at least you can take some solace from the fact that due to the nature of the disease the suffer is often unaware of there suffering and forget quickly after they have become upset, in situations as you have described.
Quoting Aeroflot777 (Reply 5):
AR385, thanks for sharing.

flyorsky
WARI1
comorin
MWHCTV
Aeroflot777

From the bottom of my heart, thank you very much for your kind words and your support. I was wary of posting the above because a.net can sometimes be pretty heartless and I was afraid my post could have been misconstrued as looking for the pity of others or trying to call attention to myself. Your posts really lifted my spirits.

Comorin: Currently there is a huge, sometimes acrid debate on what to do with my aunt. My cousin, the eldest son, wants to institutionalize her. Not because he is lazy. He really is in charge of all her affairs and the house. If a light bulb burns out he is there that same day to change it. My aunt is alone from 8AM to 6PM. At 6PM the Geriatric specialists come and most afternoons my cousin tries to be there with her at least a couple of hours. But he has 2 kids, one 14 years old and the other 11 and a wife. So there´s so much he can do.

His brother, my other cousin is an idiot "artist" trying to make it in LA whose perspective, obviously, is a bit skewed. He doesn´t even send any money and his opinion is that what should be done is what my aunt wants. WTF??? I understand that being so far away, you don´t really get an accurate perspective on things but I find his behavior shallow and selfish

And I really feel with my hands tied because living in México there is just so much I can do except offer moral support, although every afternoon I was in MDZ I spent with my aunt until the caregivers arrived. I really wish I could do more.

Eventually she wil be institutionalized. Unfortunatley she is not there yet. In some instances, if you sit down with her and you don´t know she has dementia, she´ll seem to you the swetest most intelligent lady. But the OSEP (Obra Social del Empleado Publico) has already told my cousin that unless she is institutionalized all the subsidies for her medicines and her geriatric caregivers will be suspended, as they won´t be liable for something bad happening. Since my cousin did not have the heart to put her in a home, the subsidies dried up. Fortunately money is not an issue.

MWHCTV: You are right. It is a blessing that whenever she gets distraught for whatever reason and bursts out crying, 5 mins. later she forgets about it and all seems well. But for those of us around her, it is painful.

I sincerely hope they find a cure. And I get really, really upset and furious when I hear religious leaders or right wing politicians in many countries constantly trying to block stem cell research, which as far as I know, is one of the most promising venues out there yet for a cure

I never sympathized with Reagan, but boy do I have a new respect for Nancy now.

Thank you all for your support and your kind words.

My aunt, a lovely lady



User currently offlineWolverine From Germany, joined Aug 2006, 412 posts, RR: 0
Reply 7, posted (3 years 11 months 2 weeks 1 day 9 hours ago) and read 1989 times:

I can imagine, what it feels like, to see a beloved one in such a state. And it is hard to deal with this situation.

One of my uncles suffers from Alzheimer. He was once a successful businessman, he had a big house, 3 cars, went on vacation all over the world. Some day, he started doing strange things, first it was only small things, like putting the dirty dishes in the oven, instead of the dishwasher. He played it down, made everyone laugh about it. But it got worse. Until, someday, his wife found him, taking a shower, while he was still fully dressed. He also started to forget everything.
He then was diagnosed with Alzheimer. He takes medication to slow it down, but they are not working well.
Only a short time after the diagnosis, he had to sell his company, because he was no longer able, to do his job.
Now, nearly 10 years later, he is in a nursing home, sitting in a chair the whole day, watching TV. He doesn't remember his wife, nor his kids, or his former life. It is so sad, and he is only 60.



Face your fears, live your dreams! (No Fear)
User currently offlinesw733 From United States of America, joined Feb 2004, 6365 posts, RR: 9
Reply 8, posted (3 years 11 months 2 weeks 1 day 9 hours ago) and read 1986 times:

Never easy dealing with Alzheimers! My father died from early onset alzheimers not too many years ago...he was only 57. It was truly amazing how quickly it can progress, and what strains it can put on family members. In the end, we were thankful he passed quickly...there is no advantage to having them around if everyone - they, you, all the family and friends - are suffering. It has such a huge emotional, physical and financial cost on everyone involved.

User currently offlineFlighty From United States of America, joined Apr 2007, 8709 posts, RR: 3
Reply 9, posted (3 years 11 months 2 weeks 1 day 7 hours ago) and read 1962 times:

Quoting AR385 (Thread starter):
What an awful disease, I really hope with all my heart that a cure is found soon. Seeing that wonderful woman that my aunt was, in her current state is just so sad.

My best regards to you and your aunt. You are doing a thankless good deed (I mean so because your aunt can no longer fully thank you for it). My grandmother died of Alzheimer's disease, and I am concerned my father will get it too. It is a horrible existence with no right answers. I often thought the only redeeming quality was the dignity of the act of caring for the old and senile, that you see by the caregivers and relatives.

Personally, and this is just for me, I'd much rather die than have true Alzheimer's set in. And when others voice that opinion, I listen.

Quoting sw733 (Reply 8):
My father died from early onset alzheimers not too many years ago...he was only 57.

Oh my goodness, that is sad. Yet, you must be glad he did not suffer 20 years like that. Truly awful thing.  
Quoting Wolverine (Reply 7):
It is so sad, and he is only 60.

After reading your whole post, that absolutely gave me chills.


User currently offlinesw733 From United States of America, joined Feb 2004, 6365 posts, RR: 9
Reply 10, posted (3 years 11 months 2 weeks 1 day 7 hours ago) and read 1961 times:

Quoting Flighty (Reply 9):
Yet, you must be glad he did not suffer 20 years like that.

Yes, we were all very relieved when he passed. There was no advantage to him being alive...he didn't know us, he could barely communicate, he knew nothing about where he was or what he was doing, and it was costing a life savings to keep him in a nursing home. Honestly, what is the point in being alive in that case?


User currently offlinestratosphere From United States of America, joined Sep 2007, 1653 posts, RR: 5
Reply 11, posted (3 years 11 months 2 weeks 22 hours ago) and read 1915 times:

Quoting AR385 (Reply 6):
I sincerely hope they find a cure. And I get really, really upset and furious when I hear religious leaders or right wing politicians in many countries constantly trying to block stem cell research, which as far as I know, is one of the most promising venues out there yet for a cure

I absolutely agree. I have not always seen eye to eye with you but here I agree. I am a conservative but I really think there could be great strides with stem cell research. I feel for you I would not want to be in your position I guess I was lucky and not so lucky in that my parents had me late in life. My grandparents passed away all of them when I was 17 in 1981 and none of them ever suffered alzheimer's. That is one cruel disease. My mom just passed this year just shy of 78 and she was mentally sharp til the end. I could not imagine the pain of having a loved one know you one minute and not remember who you are the next. No matter how any of us in this forum agree or disagree unfortunately things like this can affect all of us one way or another. I know this is easy for me to say but be strong for your aunt. All you can do is be there for her when you can and you will have no regrets.



NWA THE TRUE EVIL EMPIRE
User currently offlineglydrflyr From United States of America, joined Jan 2005, 207 posts, RR: 0
Reply 12, posted (3 years 11 months 1 week 4 days 4 hours ago) and read 1771 times:

Some current research demonstrates that Alzheimers victims are greatly helped by the use of flashcards with the names of people present, as well as using them to convey information, such as reminding them of the deaths of people the victims seem to think are present. Probably has to do with the brain processing written info in a different way than spoken, but at any rate it seems to work. Try putting your name and relationship to her on one card, or putting your name and your mothers' name on a card. For example, "My name is Jack, I'm your sister Jills' oldest son"

I have a brother-in-law who is afflicted with this disease. He is in his late seventies and has been slowly declining for about five years. His sister, a retired nurse, found some info on a web site about very promising results of a study by the University of California using large doses of one the B vitamins. She is employing this vitamin, closely monitoring the results. So far, there does seem to be a perceptible lessening of the symptoms, and his attention does not wander or drift so badly any more.

As an aside, the victims of this disease usually remain physically active while the mind deteriorates. My younger brother died five years ago of a horrible condition known as Shy-Drager Syndrome, where the mind remains whole and lucid, while the body slowly fails, leaving the victims unable to move or talk. An excellent book on the subject is "The diving bell and the butterfly" where the diving bell is the body, unable to move, and the butterfly is the mind, traveling along on its' own flights of fancy.

Good luck, and thank you for your caring and compassion.



if ya gotta crash, hit something soft and cheap!
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