Should I read 'Still Alice'?

[4boding]

Good Evening,

I think we are at an early stage of dementia, which of course means there's a long road ahead. A friend has urged me to read the novel Still Alice, to get a better sense of what dementia is. She says my relative who I care for should not read it. I've only read a couple of chapters and am reluctant to continue. I have a feeling it will make me want to run and hide.

Isn't it better to wait and see?
Shouldn't my relative read it, especially since she's substantially in denial about her diagnosis?

Any thoughts gratefully appreciated.

 

[tabitha1]

hi 4boding

I've just read Still Alice; I couldn't put it down!! My mother has AD and it really made me appreciate how the person with the illness can be feeling and it gave me more understanding of how to behave towards them.

I must emphasise though that Alice has Early Onset AD, she is only 50 and this form of the illness progresses often more quickly. Maybe your relative shouldn't read it, it may alarm them considerably, but I strongly believe that you should. It never helps to put our heads in the sand, much as sometimes we would like to. I find it much more useful to have an idea of what to expect and therefore to be forewarned. I really found it to be illuminating and an honest and believable account of the experience of Alzheimers.

take care

 

[Canadian Joanne]

I found it a very interesting read and I thought it gave some insight on how a person with AD might be thinking. Having said that, my mother behaved completely differently. My signature sums up my thinking on this.

If you don't feel comfortable reading it, don't. Everyone reacts differently and what helps one may hinder another. I don't see the point of your relative reading the book, TBH. They won't learn from it, in my opinion.

 

[CeliaThePoet]

I read it with a sense of dread, but my dread was really not justified, and I enjoyed it, actually. It's an amazing work.

 

[creativesarah]

I read it and as a sufferer I found it very helpful but I know not everyone would.

Its well written and I found it laid aside some fears for me.

Everyone is so different, when you have met 1 person with dementia you have met 1 person with dementia!

I personally would recommend it to anyone in the caring position as it gives an inside view of how it feels and is very enlightening

but that's only my opinion!

 

[Grannie G]

I haven`t been able to read any of these books.

As soon as I started them I put them down, realising they might not apply to me and I was giving myself unnecessary grief.

 

[rajahh]

I got lots of books when Gordon was first diagnosed and they all distressed me. I made the decision to stop reading any such books, and gave mine to charity shops.

As Canadian Joanne says everyone with Alzheimers is unique so I found some of the books, frightening, and some made me feel inadequate.

Jeannette

 

[Witzend]

The only book I ever tried to read was 'Contented Dementia' (got it from the library) but I didn't finish it. As a family we were pretty clued up about dementia by then, having lived with it with 2 relatives for so long (not both at the same time) and all I could think was, yes, all very well, but in some cases (inc. our 2) it doesn't matter what you do or try, or how bending-over-backwards patient you are, or how far you never argue, and do all the things you are told, the person is never going to be 'contented'. They will still be anxious/fretting/confused, whatever, so often about things you can do absolutely nothing about, since they exist only in their own heads and sometimes they cannot even name what is bothering them. At least that has been our experience.

In particular one thing that often enraged me was the often glibly-given advice to 'distract' someone. I would want to scream, Do you honestly think I am too bl**dy thick to have thought of anything so simple? How on earth do you 'distract' someone who is absolutely, determinedly fixated on something and will keep going back to it again and again and again, like a wasp to a jam jar?

Yes, I'm sure e.g 'let's have a nice cup of tea' works for some people, and all I can say is that they are lucky and I would have envied them, but it never did work with our two, at least not for more than half a minute at a time.

 

[Saffie]

I haven`t been able to read any of these books.
As soon as I started them I put them down, realising they might not apply to me and I was giving myself unnecessary grief.

It never helps to put our heads in the sand, much as sometimes we would like to

I am very much in Sylvia's camp with this but I can understand that if a carer has no understanding of dementia and has not met it before, then probaby it is helpful to read books about it.

Having had a mother suffer from Alzheimer's over 30 years ago, when it was barely heard of outside the medical profession and relatives remarked that she was 'going funny', I have had previous experience of it.

Incidentally, the consultant who saw my mother, when we expressed concerns about what we had been told might happen to my mother, said that we should not worry about it as it might very well not happen - and it didn't. As Joanne has said, everyone is different.

So, now that my husband has Vascular dementia, I very much want to put my head in the sand and indeed, it is only by doing so and fosussing on the present, not looking forward, can I even attempt to cope.

 

[Grannie G]

It never helps to put our heads in the sand, much as sometimes we would like to

I try not to put my head in the sand but I do believe in not worrying about tomorrow because we have no idea what tomorrow will bring.

Seize the day and try to make the most of it.

Both my mother and father had dementia.

When my father had it, it wasn`t even known as dementia, it was diagnosed as fluid on the brain.

My mother, my father and my husband all presented with extremely different challenges and behaviours.

But if anyone gets information, guidance and support from these books, then good.

 

[lizzybean]

I hear what you are saying Saffie, yet you are on here & obviously read posts/threads so in effect you are not burying your head in the sand, you are constantly learning albeit other peoples problems/difficulties & I know you are aware that these may or may not happen but you are still coming across all these things?

 

[Brucie]

I thought this book was really excellent.

I read it ages ago and, while it in many ways reflected the journey my Jan had, it didn't upset me.

For me, the experiencing of caring for a loved one who has dementia does not make me unable to read or see things about other people, even if there are close similarities.

Neither does any dissimilarity cause me to steer clear, as it is only clearly wrong or misinformed presentations of the condition get me riled.

Everybody is different, and needs to make their own informed decision. However, this particular book was very good.

I don't go out of my way to find representations of dementia in any form, but neither to I avert my gaze when I happen across one.

 

[Rageddy Anne]

I'm one of the " know your enemy" brigade....so I read Still Alice, and also Keeper, and learned something about what might or might not happen in my husband's case. It didn't seem likely that he would gain anything from reading them, and he never showed an interest in them when they were around.

 

[HelenInBC]

I really liked the book. I read it about 5 years ago after my mom was diagnosed with AD. I often think of how the character "felt" when I experience a situation with my mom. I think it helped me to see it more from the perspective of the person with the disease. It didn't scare me, as I already knew quite a bit about AD. I think it gave me a better insight into how it must feel to have it.

I recommend it.

 

[4boding]

Thanks to everyone for their responses to my question. After posting, I did read the last few chapters and might dip into it again. Perhaps, by doing so, I missed the worst of it, but Alice's condition is different from my relative's so I'm not going to get too spooked.

 

[Trisha4]

My husband is in the early stages and also his Alzheimer's presents as aphasia so he struggles with words, numbers and understanding. My personal choice is to read books as escapism so wouldn't choose to read a book about Alzheimer's. However I do find this website hugely supportive and interesting. I know I've said it in other responses and posts but I did find the CrISP course for carers of dementia sufferers I attended very very helpful. I think it Is worth remembering that the path of Alzheimer's and dementia in general is different for every sufferer whilst also gaining support from the fact that others are experiencing similar situations. Carers are also different and find their support in different ways.

 

[Saffie]

you are constantly learning albeit other peoples problems/difficulties & I know you are aware that these may or may not happen but you are still coming across all these things?

Lizziebean, I have only been on TP for just over 3 years and my husband was already in the severe stage of dementia when I arrived.
I found TP whilst searching Deputyship and have received much advice and support on financial matters here covering a number of areas and still do so.

I haven't actually been looking for advice about what might or might not happen to my husband in the future. I will take what comes and continue to deal with it as best I can.
What TP has given me is fantastic support to face what comes as well as great companionship which has has kept me steady through some rocky times.

I also read to escape the worries concerning my husband I live with daily and feel that my life is too full of dementia already to wish to my reading matter to concern it too.
However, I do realise that such books are important and help to further the understanding of this disease that blights so many lives. One day, in the future, I might very well find solace in reading them.

 

[Ann Mac]

After seeing this post, I found this book online, and downloaded to my kindle. I found it an incredibly moving and sad read, very well written. Reading the author interview at the back, she spent a lot of time talking to a lot of people with early onset dementia, so I guess that explains why it felt very believable to me .

I am one of those people who feels that I do better if I have all the information - I want to know what might be ahead, I have a (probably very naive and stupid) inbuilt belief that if I know what might happen, I'll cope better. So I've read maybe half a dozen books - not from experts, but accounts from people who have lived this journey, and for me, I've found that even 'recognizing' certain similarities in their journey, has helped.

Its a personal thing, and a case of just 'whats right for you, is the right thing to do'