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At my wit's end -advice please - Carers UK Forum

At my wit's end -advice please

Share information, support and advice on all aspects of caring.
I am looking after my 25year old daughter who was recently diagnosed with MS. She has completely isolated herself and has not left the house for 5 months. I have recently found out that she has not been taking her tablets, not following the advice of her physiotherapist and cancelling her appointments (tele)!with the psychologist.
If I question or challenge her it makes the whole situation worse and when stressed all her symptoms appear to,worsen.
I can't go on living like this just treading on eggshells and cannot speak to her doctor without her permission. Where do I go from here? Do I just put up,with it or become a bit tougher but in a caring way? At the moment I feel like a coiled wire but know I have to keep strong for her sake.
Hi Maxwell,
Personally I think you should
become a bit tougher but in a caring way

I also suggest researching as much as possible about MS yourself. I quickly googled newly diagnosed with MS in denial, and came up with this link which explains how people go through different stages in their reaction to the diagnosis:

https://someonelikeme.ca/toolbox/emotio ... diagnosis/

This links to a Canadian website, but it's still relevant and there must be UK organisations with websites too.

Hi, I do feel for you - it's every parent's nightmare when a child is seriously diagnosed, so I do understand your worry and frustration.

May I say something that I hope will be seen as 'helpful'? Would your daughter find a way of 'getting a grip' on her situation (which does, yes, sound like denial - very understandable in the circumstances of such a diagnosis), if she took to actively researching the latest developments in managing and treating MS, and the future likely prospects for the disease?

I say this because when my husband was diagnosed with cancer, I knew I found it helpful to try and make myself something of an expert on his particular cancer, and what the latest was by way of treatment, what was coming along, what medical trials were taking place and so on. It made me feel more 'in control', and fed considerable hope for the future.

Please please take on board for your daughter that medical science develops all the time, that what can't be done yet, may well be done in the near future, that what seems to your daughter to be a grim grim diagnosis at such a young age may well, within her lifetime, even maybe within the next decade, become far, far less so.

The key message I learned from my husband's diagnosis was that we humans can live without many things - but not without hope. Hope is essential.

I do hope this can be seen as a 'helpful' post, at such a difficult and distressing time for you and your daughter.

Kindest wishes, Jenny

PS - if your daughter doesn't want to become a 'researcher' perhaps that's something that would give you seeds of reassurance and hope??
Just another quick thought - would it be an idea for you to check out some of the MS forums that are targeted at younger folk, to see how others have coped with the diagnosis, plus, maybe, to encourage her to join as well. If she gets in touch with others who are in a similar position to her she may, I would hope, realise she is not alone, and that others, too, can give mutual support and maybe practical advice as well.

After all, that's what we do here on this forum for carers! :)
Thanks Melly and Jenny I really take on board what you are saying and that article was very well written and informative.
I believe knowledge is a good thing and learning about all the drugs and trials is very important. However I think my daughter over researches and over thinks. In fact she probably knows more about MS than most doctors!
It has become the centre of her world at the moment , pushing away all her friends and perhaps being a bit of an ostrich. I dont think that she is at the denial stage after what she has been through I believe it is a combination of fear and anger.
So I think possibly it is my problem that I get frustrated over her inability to move forward and just cherry pick the advice given. What worries me most is that she tends to over exaggerate symptoms , maybe it is attention seeking I dont really know but I do worry that I dont always believe her . That is why I am having a difficult time.
OK, well that sounds quite a bit 'further on' in the MS 'journey' that both you and your daughter are making, so that has to be 'good' doesn't it (ie, she's not stuck in denial, and she's clearly engaging with the medical research etc etc).

In terms of her 'exagerating' her symptoms, I wonder whether that is a kind of protective behaviour? If she faces the worst possible scenario, then it can't 'take her by unpleasant' surprise' perhaps? (I can remember my husband gloomily assume he had several types of cancer probably, as well as the one he did have!).

Would it help her if she kept a medical diary, I wonder? So that every day she notes down, as 'clinically' as she can, just what she is experiencing, and that may give something of a long-term log for her, in terms of then being able to see whether the condition is progressing, or stabilising, or pausing or diversifying, etc etc?

I do think though that her being in contact with other MS patients of her own age would surely be helpful? She may find now, alas, that 'everyone else' belongs to a different world.....when my husband was diagnosed I came up with the term 'Cancerworld'....we had been shunted off from the real world, and now had to live in Cancerworld....and only those who also lived there really understood what we, and they, were going through?

It could be, perhaps, that she is in a phase of still coming to terms with her diagnosis, and that when she does, at some point she will 'come back' and be able to have both identities - as an MS patient and as 'herself' - which may mean that she can once again meet up with her friends, socially engage with them, emotionally engage and so on??

It could be, perhaps, that you've already reached the stage of being able to 'come back' and rejoin the real world (that's not really the right term, is it? I suppose I mean the non-MSWorld of 'everyone else'), but she isn't ready herself yet.

I'm also wondering if there are any forums out there for parents of adult children with MS, who can give you more insight into what to 'expect' when a child is diagnosed, so that you can then put your own daughter's reaction into perspective??

I'm sort of feeling my way here, so please do make allowances I would ask, if I'm being clumsy about it!
You are certainly not clumsy Jenny and I think you have hit the nail on the head. She hasn't really accepted the diagnosis and maybe I am a bit ahead. The problem with the exaggerating is that I never really know what is happening. It's almost as though she reads about a symptom and the next day she has got it.
I think the way forward for menis to just listen without commenting but not be permanently available.
It's wonderful,to come on here an off load! I will keep you dated if there are any changes.
Glad I didn't sound too clumsy!

However.....look, one other, additional or even complementary possibility has occurred to me, which MIGHT possibly be in play here, but of course I have no idea, I only put it out as something to consider maybe?

One of the things I know, with hindsight, that I did by way of reaction to my husband's diagnosis was to sort of go, not in to denial, but maybe a better term might be 'discounting'??? I knew he had terminal cancer, but I sort of mostly 'ignored' it. Obviously there was treatment, and doctor's appointments and hospital etc etc, so yes, it was a HUGE, and overwhelming part of our lives....but, for all that, I knew that I also clung (probably desperately!) to some semblance of 'normality'.

I know I ran with the assumption, that somehow he would outrun the cancer, that 'one fine day' it would all be over and we'd get our normal lives back, and so on and so forth.

The reason I say this is because I wonder whether something similar might be happening here, with you???? (Again, PLEASE, this is only a complete speculation!). But do you think there is any mileage in wondering whether you want your daughter to stop 'going on about' MS, because you would rather 'ignore' it? (Just as I wanted to 'ignore' my husband's cancer)???

I don't think it's the same as denial, but more a kind of psychological refuge maybe, or a coping mechanism possibly, a way of 'minimising' the impact on one's life post-DX?

IF IF IF IF there is the slightest traction in this in your own circumstances, I wonder therefore whether you and your daughter are in a kind of tension/tug of war, with you saying 'Yes, I know you have MS, but let's focus on non-MS life!', not being comfortable with what to you is her 'over-focus', and her saying 'Mum, MS is the biggest thing in the universe for me right now and I have to pay it my total attention still'.......?????????????? Do you think she might be pressurising you to pay what for her is the 'right' amount of attention to her condition? So that it ends up with her constantly 'pushing' the MS at you, and you constantly 'withdrawing' from it?????????????

Again, even more so this time, please do excuse me if I'm barking up completely the wrong tree. It was simply something that rang bells with me as a possisble possibility, given my own psychological reactions to my husband's DX. That said, it's probably a bit too late in the day for too much amateur psychological theorising - time for bed instead!!!

(It does sound, though, from what you say, in respect of 'new symptoms' that she's still exploring all the ramifications of her DX, and isn't done with that stage yet.)

As ever, wishing you well at a very worrying time for you both, and I do hope that things will stabilise soon between you, and you won't have to feel so anxious for her, or about her. Kindest regards, Jenny (and I do hope I haven't overstepped the mark here....)
Please don't even imagine you have overstepped the mark. What you have said makes complete sense. Yes I have tried to keep things as normal as possible, is that a type of denial? Maybe but MS is more life changing than life threatening so when I see her hiding away from everything and just existing rather than living that's when I get really upset.
I guess that I have lost my way as much as she has and I treat her like a child which is totally wrong So she has now become over dependant on me. Well meaning friends tell me -look after yourself or you have a life as well but at the moment I find it so hard to find enjoyment as the guilt sets in !!

Jenny I really appreciate you taking the time in the middle of the night to offer such helpful advice.! If it is not too imposing would you mind if I send you a pm?
Hi - just sent you a PM.

(I'm not usually awake so late, but I made the fatal mistake of staying slumped in front of the telly instead of shifting myself to head for bed!)