Sorry to hear someone if your family is going througbh this Onyx - all these posts will be hard to read, and I'm sorry if I add to your distress - but I remember wanting to know everything as well
- TBH, it's pretty gut wrenching at times... I felt I grieved for my grandmother when she had the diagnosis, more than when she actually died. I couldn't visit her at the end, I knew that she didn't want to live this way and that made it so painful to see her. We had extended family in other states who did not understand why we didn't see her, and as such we don't see them anymore either, which is sad, but really - she wasn't grandma to me by then - I wish I could have spent more time with her, but I wanted to spend more time with MY grandma, not this empty shell that was left....
sorry to be so depressing - but there is no denying it's a tough journey. I read something at the time that said the average time someone lives following diagnosis is 9 years - I remember holding onto that at the beginning, and at the end, wishing it would happen sooner. it's yuck that's for sure. There are mixed feelings of grief and relief when someone dies following a long illness, so don't beat yourself up if you (or other family members) have mixed feelings at any time throughout this. It is all normal. Remember that everyone in the family will deal with it in their own way, you can support each other by not judging each other for this - if my cousins had been able to say - I wish I could make this easier for you, and I hate this too - it would have been really helpful.
my advice, is to spend as much time as possible with the person now. Fun times, just doing the normal things you all enjoy - take lots of photos and video of them the way they are now.
one of my cousins made a photo album and put pictures of everyone in there so grandma could look through it - which was nice. It made us feel better, even if she didn't look at it.
last thing though - also remember that each person's experience will be different, my grandma sort of 'lost herself' after having surgery for a duodenal ulcer, and that was when she was 'gone' to me. they say it is much more difficult when they do go under anathestic, and then she never went home, so there was nothing familiar for her either. The longer they stay at home, the better in terms of their memory - but they have to be looked after as well, so all these factors need to be weighed up. it may be longer and much easier for your family. and I sincerely hope so. try not to get too distressed by these negative stories, it's unfortunate that's it's a degenerative disorder, so the outcome is sad, but there is always hope that it will be a smoother ride for you guys xxx xxx
best wishes...
Mummapan, just highlight the blank section and you can see the white text (kinda cool trick really!)
My story is also not a nice one. I called my mother and asked her for some more definate answers as she was the one who cared for G most of the time. G passed away just under 3years from first been diagnosed. He was originally prescribed a drug called Aricept which is suppose to help slow down the disease progression. There are also other drugs out there that are suppose to help do the same thing.
G lived on his own for alot longer then he should have. In the end he had to be forced out of his home into care as he became very violent and was dangerous. My took him meals everyday but he would forget to eat or she would find the food in the laundry instead of the fridge for example. My mother tried to care for him at her own home but it wasn't really possible as she was worried G would get lost as he wasn't familiar with the farm, he would hurt himself or my younger brother. G was a trademan and remembered his building skills but not how to use them. He would try and climb up anything to get on the roof, use a hammer to knock holes in places that shouldn't be etc so he needed to go to a place where he was safe. What happened when eventually he did go into a facility catering for his needs was he was very aggressive. He would pull other residents out of their beds, throw things and get very violent. He was on an anti-phychotic drug to help with this but they couldn't get his dose right. As G was dangerous he was transfered to a mental health hospital but what happened here was he was sedated which ultimately led to him passing away. The sedation meant he couldn't eat and he was not able to be mobile so he got pneumonia (from aspirating on fluid) and then been immobile wasn't able to cough anything up) and he passed away fairly quickly (about 2weeks later) so unfortunatelty trying to find the best dose of G's medication to manage his agression is what led to G's death sort of in the middle of the disease progression. When G was diagnosed mum was told to expect about 10years.
G was abit of a hermit before been diagnosed. Mum visited him everyday for as long as I remembered so mum and his others children were G's only real life outside his home. When G was first diagnosed which was probably a few years after mum started noticing the little forgetful things. G refused to talk about the future. Mum says she really regrets this. The only answer mum would get was G was not leaving his home and he was not going to a nursing home. In the end when G had to leave his home as he was hospitilised and was not safe to go back home mum had to apply through the Guardianship Tribunal to get a Power of Attorney. These were things mum wanted to get in place before G got to the stage where he couldn't make decisions for himself. G was very difficult and would just refuse to talk about it. Mum believes things wouldn't of got so bad had G moved into the nursing home along time before he did. The family were not in the position to care for G themselves. It really was a 24hour job and all his children had young families themselves. Mum's sister refused for G to go to a nursing home and came down to get him to care for him herself. She really didn't know what to expect and within days G ended up in hospital over 1000kms from where he was living. Then Mum's sister blamed it all on my mother and they have not spoken in the 4years its been since G died.
As a nurse I've nursed many people with Alzheimer's. I think that when they have come to us (I worked in a high care facility) then the stage they were at was already passed the worst of it to the point where they didn't recognise their loved ones. When they got to this stage they do seem more content and happier. G never got to this stage. He was still in the stage where he remembered Mum and knew she had left him in the one place he always refused to go.
The other girls have given some really good advice especially on supporting each other. I would also encourage someone in your family that is closest to your loved one been diagnosed with Alzheimer's to try and find out things that this person would want to happen if and when they get to the stage where they are unable to make important decisions for themselves and also to get a power of Attorney if one is not already in place. As G lived alone it took months to get this in place and mum did not have the ability to have the electricity, phone, insurances etc cut of so G was getting billed included late fee's for months after he had moved out. G was on a pension so mum had to pay these bills herself.
My grandfather has it and has been living with it for about a decade. It's slow in his case. But it is dreadful to see him decline and never know if he's having a good day, where he can remember your name for more than 5 minutes, or a bad one.
TBH, he is one of the few people I wish were dead. It is heartbreaking not just for the family but for him as well. A few years ago he went through a stage of every morning waking up, not seeing my grandmother or her things around (she died almost 20 years ago) and thinking she'd left him. I wouldn't wish it on anyone. But now he can't remember her - so it isn't so hard for him, in a way. Having said that, at the start, he was just forgetful - it wasn't so bad. It really does depend on how quickly the disease sets in.
my grandmother had alzheimer's but we're not sure exactly when it started - it really became prevalent after my grandfather died. we think he must have been covering up small things so that we didn't know. i think also that his death caused the disease to accelerate. however, from that point it was around 3 years before my grandmother died. i think one of the hardest things for me was not knowing whether it was going to be a good day or a bad one. there were phone calls all through the night accusing us of never visiting her (my mum is an only child & used to work full time but would cook a week's worth of meals on the weekend & we would drive them down to my gran each weekend, she lived about an hours drive away) & on the way to my 21st she had to ask to dad who's birthday it was & the name to write in the card (i was the only grandchild). those things were tough. in the end my parents moved my gran to a home that was a 5 minute drive away & we could visit often. plus we knew she was getting regular meals etc.
my gran was a lovely, gentle, vibrant woman who wore heels well into her 70's, still wore tailored skirts & would put on make up each day. i only had one set of grandparents in australia & i doted on her. it was tough to watch her struggle with the disease and see her change completely from the person i had grown up with, sharing secrets & teaching me to bake. she could be very aggressive/angry/nasty and that was so different from how she'd been before.
it was also really tough to watch my mum struggle with the emotion & strain of it all. as an only child she was carrying the burden herself (with support from dad & i, but it was still an enormous burden). she went from being a healthy size 12-14 to not eating & she lost so much weight she dropped to an unhealthy looking size 8. she also started gambling a bit & it was just a really tough time all around. i think lots & lots of support for the people carrying most of the burden is an absolute must - the disease definitely affects more than just the person with the disease.
i can't help with any medication that was prescribed, sorry.
Both My nanna and my papa have dementia. Papa is pretty much in the final stages now. He has no clue who anyone is or what is going on. My nana isn't quite that far gone yet. The one thiing people often don't realise is how nasty these usually kind and gentle people can become. My nana is a right piece of work at the moment. She it cruel and derogatory in almost everything she says about anyone. Even when she is complimenting it is a backhanded kind. It can make it very hard on those people trying to care for her. You need to grow thick skin and remember that it is the desease not them who is talking. My grandparents have always enjoyed a drink, but began to drink alot more when dementia started. Partly as a coping mechanism I think, but also because they would simply forget that that had already had a drink. So as the desease progressed they both became alcholics, which in turn made the desease progress faster.
xxx
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