To be fully informed or fully depressed ??!!

[Sarahkins]

Hi all
My dad was diagnosed with Alzheimer's almost 3 years ago & it's now started to take its toll
I finding it hard to know how much to read up on Alzheimer's it's the old to be armed knowing what the future holds vs being scared on dads behalf. Arghhh finding it really a catch 22 situation. How have you all found reading up on Alzheimer's when it's affecting a loved one?
Also do many careers go to support groups & if so how do you find it helpful?!
Sorry this is all new & just trying to work out what to do to hello my dad, mum & I make the most of life dispite it's little hurdles
x

 

[stanleypj]

I think different people have different needs. Some need to know the worst that can happen right up to the end. Others are content to know the kind of thing that is likely to happen over a shorter time span and are prepared to learn more as they go along.

If you are trying to live in the present - which seems to be good advice - it might be better not to know too much about what the future may hold as this might preoccupy you and stop you making whatever you can of the present.

Hope this makes sense.

 

[min88cat]

I think everyone is different. I like to know what MIGHT happen and I do stress the might.m My husband would rather not know. When his mum enters another stage, I can reassure him that it's 'normal' and he can cope better. It's still hard but the problem is that no,two sufferers follow the same path.

Taking it one day at a time is best. Don't worry about what might not happen.

 

[Sunbell]

Hello and welcome to TP.

The thing with Alzheimers is that it can affect different people in so many different ways, there can be quite a few similarities along the long path but the symptoms which one sufferer has might not be the same for another.

What looking at information can do, in my opinion, is to make you aware of what could happen and by reading others post which are relevant to the symptom causing concern at the time, can help you with ways of dealing with it, if you get my gist.

Some carers feel better to post everything that is happening throughout their loved ones illness whereas some others like to keep it more private, it is up to the individual and you only need to read posts relevant to your query at the time that will not upset you. I hope you can understand what I am trying to say.

Sometimes too much knowledge and in depth discussions can upset some carers, it does with me sometimes so I don't read them e.g. someones dying moments, but on the other hand some carers do read these posts to share in another carers grief and try to give comfort, everyone is different.

Through my mums long journey (she is now in latter stages) it has helped me to know that things which are happening at any one particular time may have happened to someone else and I can gain strength from any information given to me. Also I like to try answer anyone elses queries if I have gone through that particular phase of the illness with my mum.

Hope you don't think I have been babbling on but it is the way that I find getting information is right for me when I feel I need to ask anyone on TP.

Best wishes to you and your dad.

Sunbell

 

[sarahp]

All I can say sarahkins is that like your question, most posts have relevance to how you have either felt or feel or may feel in the future. I personally try not to delve into the future and try to have the i will cross that bridge ethos.

I couldn't top the advice you have already been given. I have found great comfort in reading these posts and making you feel no longer alone. I have found strength in a short time from the knowledge and discussions of experiences shared with others.

It helps to get knowledge on how others deal with certain health issues and how to get certain help for your dad.

However it has also brought me through a range of emotions. As most have said it is very different for everyone, but its also soooo similar, ive had a few omg my mum does that moments. which has made me look at mum as alzheimers a
Little more than before, I thought it was just mum. This is mainly positive like when mum is having an akward moment that i used to take to heart which upsets me and like someone said it makes you realise phew its "normal" and makes me face up to its not mum being nasty to me because she's all of a sudden decided she wishes she hadn't given birth to me, it's AD. It has been upsetting too but I think with me anyway the upset has come from facing up, which is always a hard thing to do, but from that I have found strength and a fighting spirit. It raises questions that you wouldn't necessarily consider but it also gives answers to things you thought could never be answered. I agree with all of below really, I'm finding its good to stay with the moment and try to only read posts that can help you at the current time or you can give help to others.

I am sorry but I find it impossible like all you others to put my point across without an essay, maybe that is something you will all teach me to do )

 

[Witzend]

Hi all
My dad was diagnosed with Alzheimer's almost 3 years ago & it's now started to take its toll
I finding it hard to know how much to read up on Alzheimer's it's the old to be armed knowing what the future holds vs being scared on dads behalf. Arghhh finding it really a catch 22 situation. How have you all found reading up on Alzheimer's when it's affecting a loved one?
Also do many careers go to support groups & if so how do you find it helpful?!
Sorry this is all new & just trying to work out what to do to hello my dad, mum & I make the most of life dispite it's little hurdles
x

Personally I think it's good to know a fair amount - if only so you know such and such behaviour is 'normal' - or at least a lot of other carers are familiar. This is perhaps especially the case when friends/family haven't a clue, and maybe think you're exaggerating.

When I first encountered dementia with my FIL, it was maybe 15 years ago now and there was nothing on the internet - no support easily accessible at all. My FIL started having the most violent, terrifying rages - I don't think anyone believed me, not even my OH (not really) until he saw one for himself. Nobody actually said it, but I know they all thought I must be wildly exaggerating and the GP was utterly useless when I was truly getting desperate.
The only info I finally found was in a very thin library book on Alzheimer's, where the author described such rages exactly and called them 'catastrophic reactions'. It might sound daft now, but it was such a relief to me to know that this was in some way 'normal' for dementia - and I could show anyone else who was liable to think I was making most of it up.

So yes, I think I would always want to know quite as much as possible, but I do see why others might not.

 

[Canadian Joanne]

I'm the kind of person who reads up as much as I can. That's the way I'm built.

The important thing to remember, and what I tell the members of my support group, is that just because someone else's loved one suffers in a certain way does NOT mean that your loved one will behave in the same way.

I have heard of people who had been hard, mean and even cruel when they were well, only to turn into little teddy bears of people when ill. My mother, who was always so concerned with other people's opinions and how to behave in public, became aggressive, physically violent and swore like a trooper, to the point that I was asked if she had always used that sort of language when she was well.

So - prepare for everything and expect nothing is my motto.

 

[grobertson62]

Something that was said to me and stuck is
If youve seen one person with dementia.youve seen one person with dementia
In otherwords they are not all the same.
It differs from person to person and on different time scales
I read loads on vascular dementia. I needed to know. Dad took his own path.....
Hope this helps
Though for me living a day ar a time and chherishing the moments got me through

 

[zeeeb]

I read up like crazy. I need to feel prepared for what is to come. My psychologist keeps saying, enjoy the time you have with your mum, but I feel that I don't enjoy the time I have with her anyway generally, mostly. Its awkward and weird, frustrating, infuriating. So the best thing I can do is be informed so that anything that she / they can throw at me, its at least not a complete shock. And I have some kind of idea of how to deal with it. And knowledge that I'm most certainly not the only one who's had to endure this, not by a long shot!

 

[starryuk]

Well, I go through phases. Yes, I want to know what to expect might happen and be prepared if it does, then sometimes I want to forget about the future. Forget about Alzheimers and dementia altogether.

So in fact I am confused, worried and guilt ridden and wish I wasn't! So no help at all in fact.