One of my family has recently been diagnosed with Alzheimer's
Does anyone have any experience with this disease? What should I expect? How fast does it progress?
My Grandfather passed away from complications related to his Alzheimer's. He was diagnosed approximately 5years before he passed away. I've also nursed alot of people with Alzheimer's but I haven't known them before the disease so can't comment on how it affected them. I think Alzheimer's although a form of dementia is different in the fact it often affects younger people and the progression of the disease is quicker compared to other forms of dementia. My Grandfather was very difficult and probably had the worst case possible. I'll be back later to explain. Try not to compare one case to the next. My grandfather passed away at age 76. Be back later after bub is asleep.
One on the most important things to remember is when they cannot remember who you are or they say things that you know they would not have said before hand ....this is the disease speaking and you must not take it to heart. This can be very, very hard.
One way to 'cope' is when you walk out the door think of something amusing they have said and have a laugh. You are not being disrespectful but using this a way of coping.
It can be very sad watching a loved one change before your eyes.
There is no handbook for this disease. It can progress very quickly or take its time. Also the person can get very stressed as they know they are not remembering things that they should.
this doesn't really paint a nice picture, but I'm guessing you want the warts and all answer ... if not, don't read it. I'll make it white, just in case you don't want to
my grandma had Alzheimers.
she hid the symptoms for several years (from the late 1990s until the early 2000s) and so wasn't diagnosed until around 2004.
it started with forgetting general things, burning clothes when ironing, going to appointments on the wrong day, etc ... then forgetting people, forgetting modern social conventions, becoming incontinent, forgetting what she's doing, eventually forgetting everyone and everything ...
things progressed ...
some things were dangerous - she almost burned the house down a couple of times by forgetting that she was cooking dinner, etc ...
some things were awful - her driving became erratic and dangerous, so Grandpa just sold her car one day ... she was really mad for a few days, then forgot she had previously had a car, and then forgot she previously drove at all ...
some things were bizarre - she forgot you had to pay for things at the shops, and so she was "arrested" a few times for shoplifting ...
some things were cheeky and just like a toddler - if she didn't want to eat her food, she'd throw/spit it on the floor, or poke it down the cushions of her chair ...
there were some sad situations - she didn't really understand what was happening at my wedding, which was painful for Grandpa and Mum, and Grandma was previously the height of propriety and "occasions" were her thing. and before the wedding, she'd know something exciting was happening, but she couldn't put her finger on what it was - whether it was an engagement or a baby or a new home or a new job ...
there were some really sad times - when Grandpa died, she just didn't understand ... so she'd ask when he would be picking her up. When we told her he was in heaven, she'd ask where that was, was it past Sydney, etc ... and her relationship with Jesus was a really key factor in her life, and there came the time when she lost the concept of God ... that was hard to see ...
during the early years, Grandma became increasingly concerned - she knew something was wrong, but she was embarrassed, and didn't want to talk about it ... she'd know she was forgetting things, or that things were amiss, but she'd work harder and harder to cover things up ... she'd know she should know something - she'd recognise their face, but not know their name. She'd go out, and realise she'd forgotten stockings. She'd forget to whip the cream before serving dessert, and it would still be that runny stuff. She became incontinent. Grandma was incredibly "proper" and so these things upset her. We'd all gathered what was going on, and would try to help, but there's not much you can do ...
but mostly, during the last few years of the disease, she was just happy. increasingly happy and peaceful as she just stopped worrying about day-to-day things, and no longer *realised* that she was forgetting things ... and we paid attention to things made her happy - sitting in the sun, lollies, music ... so we just kept her happy and comfortable. and we visited quite a lot. that became harder as she forgot who we were, but apparently it helped, so obviously we kept doing it until the end.
she was trucking along at a slowly declining rate until Grandpa died. After he passed away, Grandma declined very quickly - but lived for another 3 years.
those three years she was in 24 hour care at a live in home specifically designed for people with advanced alzheimers/dementia which was necessary - even at night ... she'd get up at night and wander around, or go to the heater to get warmer, and sit right against it, and get burned if no one spotted her ... or she'd fall out of bed, and got injured ... having her living with family was just not doable - we all either have babies or stairs or full time jobs ... and even without all that, we all sleep at night!
so all up, she probably had a gradual decline for maybe 5 years, increased for 2-4 more years, and then Grandpa died, and she declined dramatically over just a few months, and then it kind of plateaued she did continue to decline gradually until she passed away.
Good luck with supporting your family member through this difficult illness.
How do you read the white response?
Two of my grandparents have had altzheimers... I will comeback later to tell you more... It is v tough ob the loved ones so my thoughts are with you x
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.
one other tip: have a family meeting before the disease becomes too advanced to agree on how certain things will be handled ...
eg: when will you not let your children drive with them? when will you remove their car keys or get rid of their car? when will you not allow them to have keys to your home? if they forget that someone (eg: their spouse) has died, will you tell them, or just say they are away or can't visit that day? if they stop liking healthy foods, will you just let them eat custard and jelly all day, or will they be fed by others? under what (if any) circumstances will they be put in full time care? who will manage their affairs?
if the person with Alzheimers has several immediate family members, questions like this can cause enormous disputes ... it was reasonably simple for us, as it was my maternal grandmother and my mother is an only child - we let her make all the decisions, and we just supported her ... but I'm one of 4 kids, and I would want to discuss things - many of them with the person present, if they were able and willing to participate - if it looked like things might be heading that way ...
as a nurse I strongly agree with what the others have suggested about having a family discussion early that includes the person who has been diagnosed with Alzheimers, about their wishes, how things might be handled and to arrange legal power of attorney and medical power of attorney while the person is able to make these decisions. Families can be torn apart on how a person with alzheimers should be cared for, it is even more difficult if some family members live far away as they may struggle to fully understand a situation that they are not seeing for themselves. This can lead to decisions being delayed and the ill person not getting the care they need while legal issues are addressed as well as putting a large burden of stress on everyone in the family at the same time you are grieving for having 'lost' the person you knew
I hope you and your family can be there for each other as well as for your Ill family memember
Once a person has a diagnosis of alzheimers, you are unable to apply to get legal power of attorney. You can however apply for a guardianship order through SATS. I have worked in aged care for 14 years as a registered nurse. One of my main jobs was to interview residents and their families prior to entry. My one and only suggestions to you and your family, is to make sure you do not leave it too late to start looking for care options. Waiting lists in care facilities are long, especially for males. You could be waiting anywhere up to a year for a suitable bed and unfortunately that means people hit a crisis situation and the person ends up bouncing around the public health system. You can apply for waitlisting once the person has recieved an ACAT assessment, they will either get approval for high or low care. Although the prognosis for people with Alzheimers is roughly 7 years it can be effected by numerous other things.
My auntie was diagnosed with it at the age of 45, she passed away 9 years later.
There is medication (aricept)that can be taken to help slow the process however the person would need to be assessed by a gerontologist as the medication needs approval before it is dispensed. The medication does only work for a short period of time.
All the best with it all, I am sorry to hear you are going through this.
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Alzheimer's
and her relationship with Jesus was a really key factor in her life, and there came the time when she lost the concept of God ... that was hard to see ...
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