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At my wit's end -advice please - Page 5 - Carers UK Forum

At my wit's end -advice please

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I'm glad it helps to bounce things off the forum! Are you in any forums specificually for families of MS patients, as I would think that they would know exactly what you are going through - that constant oscillation between wanting your daughter to 'buck up her ideas' and then back into the fear that the MS is really limiting her.

In respect of what the MS is doing to your daughter, would it be sensible to get back to the rehab people, and get their take on how your daughter is? ie, if THEY say, in their expertise and wide, wide experience, having seen loads of MS patients, that 'yes, she could do this, but no she couldn't do that'....then that would be your 'objective corrollative' to what your daughter is saying to you.

The main problem, I think, is to know the difference between:

- what the MS is doing to your daughter
- what she THINKS it's doing
- what she wants YOU to think it's doing.

Now, each of those is potentially different, but your problem is you just don't know! Which is why it might help you to get a 'top down' take from the medical and rehab experts. (I appreciate that what the MS is 'actually' doing to her varies day by day, etc.)

I do think you have to be able to trust your daughter's reports about her abilities/inabilities. But that raises the tricky question of whether she actually BELIEVES she is more incapacitated that she 'actually' is.

And that in itself raises yet further questions about WHY she believes that (ie, if she does!). You've already mentioned the dreaded 'secondary gain', whereby she clearly gets sympathy, attention and, above all that precious 'get out of responsibility free' card (!) - but there may be more to it than that.

I guess that's why I'm suggesting to you a 'proper' counsellor, even a full blown psychiatrist/psychoanalyst etc?

Because they would not only (I would hope!) have that complexity of analysis, but also, and I think this maybe is my final 'layer', which is what your relationship was with your daughter BEFORE she was diagnosed, and also what the overall family dynamics are.

On that point, being a little 'waspish' (!) here, but is one of the reaons your daughter is say 'playing up' at the thought of your disappearing on holiday is because she knows her dad and bro won't be fussing and agonising over the way you do!!!!!????????????? Just a thought!
I have a friend who was diagnose with MS when her profoundly handicapped son was a baby. 20 years on she walks with a limp, but lives a full life, had two more children. What I find so sad about your daughter is her lack of fight to do as well as possible. I know someone else, also diagnosed young, who decided not to have a family or strive for her dreams, I've had some awful things happen to me, but have always tried to make the most of every day. Everyone is different, is there anything at all which makes your daughter make a special effort for? Could this be a key to helping her think beyond her illness? Or does she seem to think her life is over before she's given herself a chance? Does she know anyone else with a disability to ncourage her?
I am on a Facebook page for parents of children with MS in USA, but they mainly are just that - children or teenagers. However they are very supportive and it is good to know one is not alone.
As far as talking to therapists - well I think over the past couple of years my daughter has seen at least 6 different physios including the ones in hospital. They all say the same thing that she is capable of doing more but seems to hold back. I have spoken to 1 psychologist and 1 neuro psychologist ( with her permission ) and they both said the same thing - anxiety disorder, possible PTSD , avoidance etc .. . They also agreed that we as parents are in a very difficult position and should stand back but remain as supportive which we are doing as much as possible. This sort of behaviour I suppose has built up over the years (even pre ms) so it will not be sorted over night and she has got to want this for herself.

As I mentioned before she has started hypnotherapy and maybe the fact it targets the subconscious might be the trigger she needs to learn to relax and gain the confidence and motivation to move forward.

We feel we have given both our kids a loving but reasonably firm up bringing but I have certainly not been super mum! We are only human and my daughter who us an adult should realise . I do know that many people with chronic conditions do tend to become rather selfish and inward looking - which is sort of understandable.
It is a new day - so let's see what it brings ! I will post again if the hypnotherapy has any effect over the next couple if weeks. The therapist has told me that the greatest percentage of his clients are all people suffering from anxiety/PTSD etc maybe because anti depressants only mask the problems.?
I'm also wondering whether there could be an element of 'involuntary co-dependency' in the toxic mix of why your daughter 'won't' (or feels she 'can't') make anything of her life????

I don't get the feeling you 'want' to be 'co-dependent' on/with her (hence my use of the term 'involuntary') but that your chronic 'maternal guilt' (which is common to ALL of us!!!!!!!) is 'making' you feel 'responsible' for her. You would far rather not be - as in, would far rather there were no actual need for your daughter to have any 'hangups' at all!!! - but because you are her mum, you feel you 'should' be involved in all her mental anguish.

And of course, from her side of the fence, all her mental anguish (the anxiety etc etc), needs to 'feed' on something to keep going, and what it's 'feeding' on is your 'maternal guilt'. That, in this analysis, would be the source of the 'involuntary co-dependency' - the toxic 'mesh' between the two of you.

So the unhealthy dynamic would be:

- she feels anxious (about 'everything' but focussing on the MS as the 'objective cause' of her anxiety)
- she exports that anxiety to the 'outside world' (radiates with her words and behaviour)
- you 'receive' her anxiety
- you react with 'maternal guilt' (as in, feel 'bad' that she feels 'bad' about herself and her situation)
- that 'maternal guilt' then reinforces her anxiety about herself.

I'm only speculating wildly here (!), but you never know.

What seems to come across, and this is NOT supposed to be 'criticising' but 'liberating' (!!!), is that in a way, you are the 'worst person' to help her, BECAUSE you are so fearful for her. I would say the same of my bro and SIL and my chronically-anxious niece! They fuss and fret over her, and don't want to push her forward incase it all goes wrong ....

Speaking of 'pushing forward' of course, the 'next stage' of the toxic dynamic is that, say, you go all 'bracing' on her, either in a friendly or exasperated way, eg, 'push' her to do something, and then of course, she will 'counter' by 'collapsing' and forcing you to revert to the way her anxiety likes it, ie, feeling guilty so you then 'share' her anxiety.

It's as if her anxiety is 'conspiring' to keep both her, and you, in its claws.

So, how to break free?

Well, the only way forward I can see is the 'firm/tough love' route, but you HAVE to 'hold your nerve' because she will (subconsciously,not necessarily 'deliberately') 'fight back' and 'collapse' to (a) punish you for trying to force her out of her 'anxiety corner' and (b) to 'prove' to you that SHE is right - ie, she 'can't' do these things the rehab 'did' push her too far, etc etc.

I do think that you having a complete break from her (ie, on holiday) would be a very, very good thing. It would give you a chance to 'renormalise' in your head, and gain some distance, and it would do ditto for your daughter - and as wondered, maybe 'expose' her to the more 'bracing' reactions of her dad and bro????
It's very encouraging from what you say that the medical experts think she is perfectly capable of doing more than she thinks she can, and that therefore the main 'block' to her doing that is in her own minds.

Minds are 'self-curable' (!) and therefore that surely is a much better position to be in, than if the block was coming from the physical impact of the MS.

I would say that their findings indicate that you are 'safe' to persue firm/tough love - whatever your daughter's protestations!

It would seem that in a substantial way, her MS is merely 'the vehicle' that is carrying her self-anxieties forward.....
Just a thought, are there any special holidays your daughter could go on? I have read of holidays where you can have a helper one to one. I know that I get very jaded during the winter months, and look forward to getting out and about when the better weather arrives. From this experience, I just wondered whether your daughter really needs a break from home (and also therapy?) so that she can join in with other young adults facing health challenges, in the hope that it might lift her mood.
I think that's a brilliant idea - but I think Maxwell should get her holiday first!!!!

One problem, though, I foresee (maybe I'm being too pessimistic), is that her daughter may not actually want to go away with her mum to places where there are other MS sufferers, as the other MS patients will show her up....ie, I am getting the feeling that one of the key reasons her daughter likes to 'hide' at home is that it enables her to think of herself as 'iller' than she is, and seeing other MS patients having a much better time and being more 'able' will 'expose' her......?????
Jenny you have hit the nail on the head. I am sure my initial anxiety over her condition fuelled her stress ( although she was always anxious even as a child) so the combination of that and MS is too hard for to handle.

You are quite right I am the last person to be able to help as my "helping " is just making things worse and I am sure deep down she really does not want this dependency.. I am also sure that she has to achieve this in baby steps so one achievement will lead to the next.

Even though it is early days I can already see a slight change in her behaviour. Firstly I hardly get anymore texts!!, secondly she is sorting out her appointments and I believe will see the psychologist next week. So all positives after only a few days of pulling right back.

Regarding the planned holiday -I think my poor husband will be miffed if I went off without him. So my daughter will have to organise her care for those few days.

I just pray that she finds the strength and peace of mind to overcome and deal with the situation. I think that if she can get on top of her anxiety she will have a much easier ride with the MS. After all stress affects the immune system and you cannot separate the mind from the body.