when is too much information too much?

[creativesarah]

Hi I just wondered if anyone has been on a Local Health Authority course for those with dementia or something similar.
we are in a bit of a dilemma at the moment one of the guys at our house went on one, as he has recently been diagnosed with Alz. Before he went on it he was struggling with things and to begin with it seemed helpful. Recently he seems depressed and is more aware of the implications of demntia and perhaps ignorance is bliss. He has now started refusing to join in some of our activities. We live like an extended family, and having seen me working through my dementia related struggles I had hoped this would help.
He refused to come out with us on Saturday even though everyone told him how loved he is and how we would mis him on the outing and when we got home the hall was full of boxes and he said he was moving out. We were gobsmacked, fortunately he has gone to stay with some understanding friends so we know he is in a safe place.
We have put the boxes back in his bedroom!

we are planning to move to a smaller house at the end of the year ( 7 bedrooms not 10) which will also have a smaller garden and we wonder how much this has unsettled him too. It's not too far away and is in a better location near a library and shops and Gym and although it's on the edge of town and is a walkable distance it is surrounded by a wood with lots of lovely places to walk and much better access to buses which will be fantastic as I can't drive any more.

Just wondered if anyone had any experience of new knowledge being overwhelming

 

[Shedrech]

Morning creativesarah
I have no answer to your question. I read your post last night and just didn't know how to reply. What you've written has really made me think - it's a salutary reminder that every person is an individual and we can't get in the head of another.
I only know dementia from the perspective of a carer, and dad didn't talk about his diagnosis or seem to engage with the words Alzheimer's or dementia - but I can only say that from what I saw and what he didn't say, I don't really know what he thought or felt.
Sometimes carers write about getting a diagnosis, and it being a means to access support and how the person is 'in denial' - but we are not that person, and often the diagnosis seems to come at a point when the person themselves is not able to take it in.
I'm personally very grateful to those members who have a diagnosis themselves and post about their experiences. It's the closest I, as a carer, can get to an insight into how it is to live with the various conditions.
I have often wondered what those members think about what carer members post - and am very glad to read response from each of their points of view.
There is so much more information on dementia 'in the ether' than in past years - and quite right too, the more we all know the better !? BUT there's the crux of your question - now those diagnosed also may have much more of an idea of what they, and those close to them, may be facing. With any condition, some people cope better by collecting all the information they can, others ignore everything - there's no right or wrong way to react. However, if there's more information out there, it's more difficult to turn away from it. And let's be honest any diagnosis of this nature is bound to be initially overwhelming; how can anyone take in such knowledge easily - anything that changes our lives is daunting.
The guy in your house did choose to go on the course - it wasn't something he just bumped into - so in some way he did want information, and at any point he could have walked out. And now, I guess he just needs to work his way through in his own way. He has gone to 'understanding friends' and he has you all back at your house - he must know he's welcome back any time - so, as you say, he is safe and not alone.
In the longer term, having been with you in your circumstances will no doubt offer him a point of reference and a fellow traveller. Maybe just now he needs to work out what his diagnosis means to him in isolation, before he emerges again and moves with you.
Sorry if I've gone on too much - your post made me stop and consider and I'm trying to write out my thoughts. It's a profound question.
I hope all works out well for you all.

 

[marionq]

Sarah you raise an important point. What do PWD feel about their situation and their future? Would they be better not to know? We have been very honest and open from the start about John's Alzheimers but I am not at all sure if he ever thinks about it. He certainly never raises the subject or expresses an opinion or anxiety about it. If it crops in conversation with eg some medical person he does not react at all.

I think we all plod on trying not to be too worried but who knows what another thinks. Your friend is evidence it does worry some.

 

[Sue J]

Sarah I so want to reply to your post but can't formulate my thoughts or get the words today - I hope I can come back to this - in the meantime am sure you are all continuing to reassure your friend and helping him through what is a big change for all of you. I agree though too much 'dementia' info can be too much - living with the symptoms daily is usually plenty to be getting along with
Best
Sue

 

[creativesarah]

Morning creativesarah
I have no answer to your question. I read your post last night and just didn't know how to reply. What you've written has really made me think - it's a salutary reminder that every person is an individual and we can't get in the head of another.
I only know dementia from the perspective of a carer, and dad didn't talk about his diagnosis or seem to engage with the words Alzheimer's or dementia - but I can only say that from what I saw and what he didn't say, I don't really know what he thought or felt.
Sometimes carers write about getting a diagnosis, and it being a means to access support and how the person is 'in denial' - but we are not that person, and often the diagnosis seems to come at a point when the person themselves is not able to take it in.
I'm personally very grateful to those members who have a diagnosis themselves and post about their experiences. It's the closest I, as a carer, can get to an insight into how it is to live with the various conditions.
I have often wondered what those members think about what carer members post - and am very glad to read response from each of their points of view.
There is so much more information on dementia 'in the ether' than in past years - and quite right too, the more we all know the better !? BUT there's the crux of your question - now those diagnosed also may have much more of an idea of what they, and those close to them, may be facing. With any condition, some people cope better by collecting all the information they can, others ignore everything - there's no right or wrong way to react. However, if there's more information out there, it's more difficult to turn away from it. And let's be honest any diagnosis of this nature is bound to be initially overwhelming; how can anyone take in such knowledge easily - anything that changes our lives is daunting.
The guy in your house did choose to go on the course - it wasn't something he just bumped into - so in some way he did want information, and at any point he could have walked out. And now, I guess he just needs to work his way through in his own way. He has gone to 'understanding friends' and he has you all back at your house - he must know he's welcome back any time - so, as you say, he is safe and not alone.
In the longer term, having been with you in your circumstances will no doubt offer him a point of reference and a fellow traveller. Maybe just now he needs to work out what his diagnosis means to him in isolation, before he emerges again and moves with you.
Sorry if I've gone on too much - your post made me stop and consider and I'm trying to write out my thoughts. It's a profound question.
I hope all works out well for you all.

Thank you Shadrack
I feel comforted by your kind words and deep thought

 

[creativesarah]

Sarah I so want to reply to your post but can't formulate my thoughts or get the words today - I hope I can come back to this - in the meantime am sure you are all continuing to reassure your friend and helping him through what is a big change for all of you. I agree though too much 'dementia' info can be too much - living with the symptoms daily is usually plenty to be getting along with
Best
Sue

living with the symptoms daily is usually plenty to be getting along with
I totally agree I am struggling at the moment and just about to put up my next fundraising exhibition next week

Thanks for your kind words

Sarah

 

[sleepless]

living with the symptoms daily is usually plenty to be getting along with
I totally agree I am struggling at the moment and just about to put up my next fundraising exhibition next week

Thanks for your kind words

Sarah

So sorry you are struggling at the moment Sarah. You have always been one of the most positive posters, and I do hope you can overcome these difficulties.
Please remember how much pleasure your work gives to so many people, not least on here, and how wonderful it is that your creativity will raise useful funds.
I do hope you enjoy your exhibition, and send you my best wishes.
xx

 

[creativesarah]

So sorry you are struggling at the moment Sarah. You have always been one of the most positive posters, and I do hope you can overcome these difficulties.
Please remember how much pleasure your work gives to so many people, not least on here, and how wonderful it is that your creativity will raise useful funds.
I do hope you enjoy your exhibition, and send you my best wishes.
xx

Thank you sleepless I am going to start posting again!

 

[Sue J]

Sarah, sorry to read things are tough, moving into to Winter with shorter days makes it more so. Am really pleased to read you are going to do another exhibition though, am sure it will lift your spirits as you lift other's with your beautiful pictures. As before would love to come but alas not up to it, nonetheless I wish you all the very best with it.
Love
Suexx

Yep, keep posting

 

[realist1234]

Our mum was diagnosed with Alzheimer's in her 80s and we felt as a family that a formal diagnosis would just depress her, so we just talked about her having 'memory problems' due to her age. Indeed we often laughed together about her forgetting things. I am not convinced at all that it is always appropriate for an elderly person in their last few years of life to be given such a diagnosis given that there is no cure, and their thinking and memory will just get worse.

 

[black night]

I've vascular demeñtia can some one help

Hi Sarah I'm a member of the sensory trust creative spaces I started our group every wendsday morning to start with it is good but I seem to lose my way I know my vascular demeñtia isint getting better I've come to terms with it .but hear in Cornwall NHS trust is absolutely terrible I now can't move my left hand and arm I've got to wait three mouths to see a roomatoligist .Stephen

 

[creativesarah]

I am sorry so sorry that you have got to wait so long for an appointment Steve

 

[antbrod]

Alive Inside

I am sorry so sorry that you have got to wait so long for an appointment Steve

I am sorry to repeat myself but I think that if you watch a video on youtube called "Alive Inside" it will help you cope with the illness better. The video is about how Music helps patents recall lost memories and allows them to communicate while they are listening to the music.

 

[creativesarah]

My friend Fred has now relocated to a house in Northampton with other members of our church. We are hoping that when we have moved house he will return to be with us.
We think the prospect of the move was overwhelming for him. Well it does seem a big step.

 

[Sue J]

My friend Fred has now relocated to a house in Northampton with other members of our church. We are hoping that when we have moved house he will return to be with us.
We think the prospect of the move was overwhelming for him. Well it does seem a big step.

That's good Sarah, I hope the move goes well for you all and Fred joins you