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Averia Light

Averia Light

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Haukur said :
I think the hardest part of this disease is when they forget who you are. I had an older sister pass from this, in the end she did not remember who any of her family was.

Surprisingly, I don't really care about her remembering me or not. I got excited at her remembering my name (even though she said it to my daughter), because of the false hope that she could have recovered some of her memory.

It is much harder for me to watch her become a prisoner in her own head, more or less. She has become violent and paranoid, because she is obviously upset about the things happening around her without her consent, really (ex - being put in memory care and, well, locked up). But, the anger feeds into the paranoia and it manifests as insane accusations, but you can't talk her out of them. They are her truth. Then, she is losing the ability to do pretty much anything. And she gets frustrated and paranoid about that. Even when she is calm, you can't really talk to her as she doesn't understand you and she doesn't make sense.

But the hardest part is to see that this is going to be how it ends for such a remarkable woman who truly did remarkable things in her community. And now, she is probably just a chore to the workers that go home and complain about her. She would have never wanted this, but there just isn't a lot of alternatives. And I swear I'm not going to let her know all the pain I have known

18-Nov-2019 23:37:58

Averia Light

Averia Light

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qhi said :
I can relate when people say about challenges with memory. My granddad has dementia- he's 95. As we live on opposing ends of the world, I don't really have the chance to talk to him <specifically> on a daily (or weekly/monthly) basis <I should speak regularly, but he is generally sleeping/resting when we call>, so I can't really tell how bad the symptoms have gotten, even though my aunt keeps us posted on his health. From when I have spoken, he talks about me assuming that my older cousin's 2 year old son is me (as we share the same name) - and at times asks where my grandmother is (which brings tears to mine and my families' eyes, as she passed away around 21 years ago).
Conversations are pretty painful emotionally when we manage to speak to him, more so for my dad.

Your aunt is probably hiding a lot, tbh. And, it is for the best. You don't necessarily need the heartache of knowing. I know I don't say a lot to my own brothers and I say absolutely nothing to the younger generation.

That being said, he at least seems coherent, even if he is confused. I would encourage you to talk to him more, because not even 3 months ago, my grandma was in the same condition. I went every other week for a long time and I skipped one weekend to do something or other and the next time I went, she declined rapidly...and has been declining quickly ever since. I thought I had more time. I did not. And I swear I'm not going to let her know all the pain I have known

18-Nov-2019 23:42:42 - Last edited on 18-Nov-2019 23:44:27 by Averia Light

FiFi LaFeles

FiFi LaFeles

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My father-in-law lived with us for a number of years after his 2nd wife died as he seemed to be neglecting himself and it was upsetting my husband. We didn't realise at the time it was the very early stages, we just thought it was an elderly gent who'd been used to being 'cared for' by the wife.

Over the course of a few years it escalated into short term memory loss, forgetfulness to a high degree and occasionally bizarrely amusing episodes such as standing at a bus stop for 6 hours until the Police found him .... "waiting for the French team to arrive".

It soon got to the point where I had to stop working as he'd go wandering if left home alone, often inappropriately attired, or let the dogs out of the garden into the street, leave the gas hob on, leave lit cigarettes in precarious places ... and so on. He became dangerous to himself and others.

About a year before he died the black moods commenced, very fractious and argumentative about nothing, serious loss of appetite, forgot how to wash and shave so we had to assist him and ensure he wore clean clothes daily, no interest in his hobbies at all any more, couldn't understand TV programmes, became afraid of everyday objects such as the washing machine and periodically had no idea at all who we were or where he was.

It sounds perverse but I was glad when heart failure took him before the total disintegration of the person he once was occurred.

Alzheimer's is a long, cruel and ugly death for the individual and everyone who cares about them.
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18-Nov-2019 23:58:58

qhi
Feb Member 2016

qhi

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Averia Light said :

Your aunt is probably hiding a lot, tbh. And, it is for the best. You don't necessarily need the heartache of knowing. I know I don't say a lot to my own brothers and I say absolutely nothing to the younger generation.
I don't think so - as a doctor, she generally provides us all details about his health, from his sleep patterns, to his behaviour problems. That and my eldest sister frequently goes overseas to meet him and watch over him and what not (she's a neurologist), so we get information on both fronts.
It's not that we're young (we're all 20+, one 30s+) but with the profession we're in, as all of us (my siblings) are in some shape or form in fields related to neuroscience (so I guess they assume we can handle the information) and in my family we're fairly open about discussing about the eldest generations health and challenges they may be facing (collective minds think better on how to help)
Averia Light said :

That being said, he at least seems coherent, even if he is confused. I would encourage you to talk to him more, because not even 3 months ago, my grandma was in the same condition. I went every other week for a long time and I skipped one weekend to do something or other and the next time I went, she declined rapidly...and has been declining quickly ever since. I thought I had more time. I did not.
His decline has been prominent too. I went last August for around 3 weeks (stayed in his room), and he was pretty fine from what I saw. It can be a factor of his age as well, but it's progessing rapidly, as he seems to be declining rapidly since then. It may just be that his symptoms weren't as prominent then, as they are now. I'll be going back in February, so I'll see then. Otherwise yeah, I'll try to call more often.
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19-Nov-2019 00:06:42 - Last edited on 19-Nov-2019 00:11:24 by qhi

Averia Light

Averia Light

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FiFi LaFeles said :
My father-in-law lived with us for a number of years after his 2nd wife died as he seemed to be neglecting himself and it was upsetting my husband. We didn't realise at the time it was the very early stages, we just thought it was an elderly gent who'd been used to being 'cared for' by the wife.

Over the course of a few years it escalated into short term memory loss, forgetfulness to a high degree and occasionally bizarrely amusing episodes such as standing at a bus stop for 6 hours until the Police found him .... "waiting for the French team to arrive".

It soon got to the point where I had to stop working as he'd go wandering if left home alone, often inappropriately attired, or let the dogs out of the garden into the street, leave the gas hob on, leave lit cigarettes in precarious places ... and so on. He became dangerous to himself and others.

About a year before he died the black moods commenced, very fractious and argumentative about nothing, serious loss of appetite, forgot how to wash and shave so we had to assist him and ensure he wore clean clothes daily, no interest in his hobbies at all any more, couldn't understand TV programmes, became afraid of everyday objects such as the washing machine and periodically had no idea at all who we were or where he was.

It sounds perverse but I was glad when heart failure took him before the total disintegration of the person he once was occurred.

Alzheimer's is a long, cruel and ugly death for the individual and everyone who cares about them.

Yeah, I kind of wished they hadn't artificially kept my grandpa alive. My grandma always took care of herself, so we have no reason to think anything will take her before Alzheimer's does.

In other words, I get it. I'm sorry it happened to you. And I swear I'm not going to let her know all the pain I have known

19-Nov-2019 01:29:16

Pinta77
Apr Member 2023

Pinta77

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I dont believe anyone I know has had to deal with Alzheimer's. I'm actually very fortunate in that most of the grandparents that I grew up knowing are still alive today, with the exception of my great grandma. I was fairly young when she passed. I know she was having memory issues, I'm not sure if it was Alzheimer's or not. If it was, the rest of the family didnt tell me. It is very painful watching a family member go through something like that.

Thanks for sharing your story with us. :) :O :P

19-Nov-2019 01:30:00

Averia Light

Averia Light

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Original message details are unavailable.

His decline has been prominent too. I went last August for around 3 weeks (stayed in his room), and he was pretty fine from what I saw. It can be a factor of his age as well, but it's progessing rapidly, as he seems to be declining rapidly since then. It may just be that his symptoms weren't as prominent then, as they are now. I'll be going back in February, so I'll see then. Otherwise yeah, I'll try to call more often.

I'm sorry this is happening. The symptoms seemed to ebb and flow for both of my family members who were impacted. Some days were good, others were not.

And, who knows, maybe your family will find the cure. And I swear I'm not going to let her know all the pain I have known

19-Nov-2019 01:32:17

Dong U Dead

Dong U Dead

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I worked in a psychiatric geriatric hospital for a few years, loved it. Sadly only a few of the patients got visitors regularly and all the funerals that I went too were packed with people <- I don't understand this. It's the living that needs people around them. I know it's hard seeing your family, friends, loved ones deteriorate, they still need you even if they don't recognise you, some days are good, others not so much, their personalities and behaviours may have changed for the worse please don't let this stop you from seeing them.

I know it's tough, please don't exclude your children, children are strong, tough individuals and can cope and learn and I feel this will make them a better understanding, compassionate individual and their presence may help not only your family or friend in a rest home but others around them. I know when my rowdy boys go to visit my mum, you see the smiles on all the other residents' faces.

My mother doesn't have Alzheimer's she's in her 70s and I don't get to visit her often, maybe twice a year if I am lucky. She chose a rest home which is hard to get to without a car and very expensive by public transport and a huge very long walk from the train/bus station. She's mostly very happy there. The staff are fantastic. When my mother comes into the hospital (about 40 minutes walk from my place or 1 section on the bus) for appointments or to stay I get to visit her then, which is good.
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19-Nov-2019 18:55:52

Averia Light

Averia Light

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What you are suggesting is nice and all, but simply not a practical solution. My grandma is, unfortunately, too unpredictable at this time. And I swear I'm not going to let her know all the pain I have known

20-Nov-2019 22:06:44 - Last edited on 20-Nov-2019 22:09:33 by Averia Light

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