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At my wit's end -advice please - Page 2 - Carers UK Forum

At my wit's end -advice please

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Well after all the great advice I received on this forum, I found the strength to be firmer and also step back a bit. However as Jenny said - be prepared for some sort of "tantrum" and that definitely has happened.
I have noticed a pattern in my daughter's behaviour and when there is something planned that she doesn't want to do she will fall back on her symptoms. So now I am finding it increasingly hard to know what is happening as she always seems to experience new relapses .

She was due to go into hospital for in patient rehab and this has now been delayed twice June and July were cancelled and she was supposed to go into hospital next week - but lo and behold I get a text saying that the nurse has confirmed she is relapsing again and she knows they wont take her to do intense physio if she has to rest ! I really don't know what to believe anymore. She hasn't seen a consultant for 10 months and she hasn't seen the MS nurse for several weeks.

I hope that I do not come over as heartless but I really do not know what to believe anymore. I can understand that she is anxious so maybe this is her way of preparing for the worst possible scenario. I have tried talking with her but all I get is " you don't understand, only people that are as ill as me can understand"

I have been so distraught these last couple of days that I even contacted a care home near by to find out if they had rooms for respite for young adults. Someone is phoning back tomorrow but I already feel guilty just thinking about it. And if she refuses then maybe I will book myself in before I have a nervous breakdown although I think I would prefer to be on a beach somewhere nice and hot !!
So sorry to hear about the latest 'kickback'....I suspect that's what it may be, you know, her 'kicking back' at the 'new regime' you are starting to instigate with her. She's trying to 'renormalise' back to what things were like before when she (with the aid of her MS!) was 'running the show'.

When you say she says 'you can't understand!'....what I hear, I fear, is the classic child's 'ultimate retort' of 'Well, I didn't ask to be born, did I?!' (followed by a dramatic flounce out of the room!)

Would it be worth trying an 'escalation' do you think? So that when she does her 'You don't understand you don't have MS' etc etc, you simply say along the lines ' What I DO understand is that looking after you with MS is a pain in the neck! It's not MY fault you've got MS, and I am not here to be your whipping girl! I will HELP you help yourself, but I will NOT abet you in NOT helping yourself!'

(That's probably expressing it a bit bluntly ,but you get the idea!)

'Power dynamics' in families are nearly always characterised by one member of the family 'calling the shots' and if the others start to 'rebel' then the shots start getting more frequent and more dramatic, in a desperate attempt to reassert 'dominance' in the family. This, I wonder, may be what your daughter is doing.

You are 'forcing' her to confront her own fears about the disease, demanding that she stops hiding in her room and expecting endless special treatment, and demanding that she stops 'evading' the hospital treatment and medical check ups that she is either fearful of, or maybe only 'avoiding' because she knows the medics will 'expect' more from her than she now wants to give - they'll want her to make an effort she would prefer not to? (Maybe, yes, because she fears her performance won't be good because of the disease??)

As for respite, I think it's an excellent idea - whether it's for her, or for you! It sounds like you need a bit of a break from each other before you commence on Round Two of 'Getting my Daughter to Reclaim her Life Finally'.....

All the very best to you - things CAN get better! Stay strong, and hang on in there (but get a break as well!)
Well I think I am finally reaching my breaking point and realised how manipulative and much stronger my daughter is than I had wanted to admit. I have been making excuses for her saying she is stressed and anxious but this last couple of weeks things have escalated. The local community rehab team have been wonderful and want to help but she keeps cancelling and now I think that they will probably discharge her. I believe she is mentally unstable and has behavioural issues but regrettably can't force her to speak to a psychologist as she always cancels. Someone was supposed to come this week and assess her but when I asked her what time the appointment was she told me the lady had contacted her to say she couldn't come as she was leaving and someone else would be in touch. I find that hard to believe as she had only made the appointment a week ago.
As before she hides away saying she is relapsing and can't do anything and when I make things tougher for her she finds new symptoms to hide behind. As this is such an invisible illness there is no way of knowing how bad she really is short of seeing a consultant. Regrettably MS is not regarded as an emergency so appointments can take months . And what would be the point she would only cancel.
As you can tell I really do not know what to do anymore and am on the point of packing a bag and just leaving but I couldn't dump my husband in this mess. He works full time and is snowed under with work at the moment. I refuse to pay for a Carer as that will make her more of an invalid. As it is when my cleaner comes she is making her run up and downstairs all morning!
I am not trying to belittle what my daughter is going through but I don't believe she is as bad as she says she is but regrettably I feel she now needs this illness to define her . If she gets better she will be expected to do more and start participating so her relapses have become useful tools .
Sorry about this long rant but I have hit a brick wall and on top of that I feel that my heart is being torn out.
Maxwell, hi - sorry I haven't yet replied to your PM but I'm visiting MIL so Internet tricky. But just seen your post here (at my bro's this evening) so must reply!

Please hang on in there 'in principle' - though perhaps having a weekend away might be a good idea! Could your husband cope for a weekend while take a breather??

It does sound like 'escalation' just as you say. Have you seen your own counsellor/therapist, to describe your daughter's behaviour now, and got any feedback on it?

I would say 'mum to mum' (nothing more than that!), that 'holding the line' with your daughter is absolutely essential. She's pushing your buttons, pushing at the boundaries, and seeing if she can get you to 'break' and then oh bliss, everything can go back to (her!) 'normal' and she can be comfy and cosy and 'back in charge' (!!!!)

Would it help you to discover what actually would happen in a bad sense if any of the new 'symptoms' she describes and discovers turn out to be real? What's the worst that can happen? Also, what would new symptoms mean for any treatment/meds? Would anything actually change if these new symptoms are real?

Possibly one thing you could do if she's claiming new symptoms mean you 'must' take her food up etc tc, is to do just that - but take up the most boring and unappetising food you can think of ! That might test her resolve! The message is 'if your symptoms are real, you can't come downstairs but you'll be hungry enough to eat boring food' (Think 'bowls of brown rice' or something equally boring!). If, as you suspect, she's just inventing them as a power play, then odds are she'll prefer coming downstairs to eating bowls of brown rice!

As for your cleaner - simple - tell her NOT to take any 'orders' (or begging!) from your daughter. That she needs to be more independent, and if your cleaner won't do this, then you have to tell your cleaner you don't want her coming to the house any longer.

I would recommend 'benign neglect' - if your daughter wants to throw her 'tantrums' you let her - and blank her. She wants a response - so you don't give her one.

I know it's SO easy for me to sit here and tell you to be 'immune' to her, but I do feel that's what it will take.

Wishing you all the best, and even if you can't take the whole weekend off, how about disappearing all day tomorrow and having complete 'me time' to yourself.

And vent away here all you like!
Thanks Jenny for your advice. I agree that perhaps trying to become immune is a good idea otherwise I get too drawn in. Particularly when I go out and receive a constant stream of texts. I have now decided that I will only reply to the "positive " ones.

I am still continuing with the lunch downstairs . I leave it for her and go out so,it is up to her to decide what to do. If she doesn't want to come down then she has to wait for me to return and that could be anytime in the afternoon. Needless to say she hasn't missed a meal yet.
I think,I know my daughter better than she knows herself but am still worried about what this is isolation is doing to her mind. Is there anyway I can get an assessment without her permission or will all psychologists etc say it is up to her?

As I mentioned before there was supposedly someone coming last week. But that never happened and I have a feeling my daughter cancelled. She is very good at doing that.
I really feel that I have hit a brick wall, and so much want her to find the motivation to move forward. All the professional team (physio ,nurse and OT) have said that with a little work she is perfectly able to lead a near normal life but she doesn't seem to want to,hear this!

I am sorry to keep going on about the same problems but frustration just gets the better of me.
Hi - very glad to hear you are leaving her for lunch - and isn't it revealing she doesn't go hungry after all???!!!!

As for the psych stuff - alas, I think, from what I've read here in the MH section, that ONLY if the patient agrees will any assessement or treatment be done - only sectioning can 'force' treatment. But others here may be (sadly) a lot more experienced than I on this.

Did you manage to get any #me time# over the weekend?

Emotional immunity is very hard to develop as we mums are 'programmed' to feel everything they feel (and more!). It will take practice, and constantly reminding yourself it's for their own good......

I do think that YOU continuing with counselling is bound to help - not only helping you deal with your daughter, but getting the counsellor's take 'by proxy' on what might be happening in your daughter's head - and how the interplay between the MS and herself is playing out. In other words, what sort of mental state might your daughter have outwith the MS, and to what extent the MS is a 'vehicle' for her to attach her hangups and problems on to? Most obviously of all, is the MS providing the 'attention focus' that she is enjoying (back to secondary gain again I suspect!)

In practical terms, can you escalate on the 'DIY lunch'? Would it help to sit down with your husband and plan your campaign, and the series of 'next steps' that gradually withdraws your 'pandering' and 'forces' her to become more independent. Could you do this in conjunction with any psych help available to YOU (even if your daughter is evading it!)

Have you managed yet to have a stern word with your cleaner for when she's next in? To ignore your daughter!

Hang on in there - it will be tough, but if you cave in, you're back to ground zero.

Wishing you all the best, Jenny
Ps - re the texting? Where does she text you? I mean, is this when you are out of the house, or in?

Texting you while you are in the house is a no-no! I have a friend whose daughter used to text her from her bedroom wanting to know if dinner was ready! Ridiculous!

Tell your daughter you will automatically delete, unread, any texts she sends you while you are in the house. If she wantst to talk to you she can come downstairs and talk to you face to face. The constant texting is just nonsense, and I don't care if it's how the young communicate. It's now how our generation does and that's that! :)
Thought things were on the up when my daughter decided to go into hospital for rehab. She has been there a week and I cannot see an improvement . In fact I would say she is worse or maybe it is all put on for me as I am getting text after text on how the physios push her etc.

I do not go in to see her everyday but went yesterday to speak with the staff and was so impressed They are all really lovely, caring and understanding. I apologised on her behalf hoping she wasn't being too difficult but I suppose they are used to it. I think they believe that it is fear of failing so she just doesn't try . That does make a lot of sense.

My worry at the moment is that we want her to go back to her own flat and she wants to come home. However I think that she will just go back to her old ways of lying on her bed all day getting weaker and undoing all the good work she is doing at the moment. I have to add that we are paying for the this rehab ( an eye watering amount ) which I do not begrudge in any way. She was on the list at the local NHS hospital but she said that they couldn't tell her how long she would have to wait so as we felt she really needed to build up,her strength we said just book and go privately. I have just found out on chatting to the GP that she was offered a place at our local NHS hospital and turned it down - I was totally gob smacked !

Yesterday the physio mentioned a Carer and no way could we afford to pay for someone full time so I really don't know what to do. If she had gone to the local hospital they would have kept her there as long as was necessary 3 weeks or even 3 months and would have made sure she could do things for herself such as cooking ,cleaning doing her washing etc. But now we will be back to square one and short of having to get a physio to come to the house every day I can see that that this rehab package of three weeks will have been totally wasted.

What on earth do we do?
She is an adult with her own flat. Either the NHS arrage a care plan with SSD to go there or she accepts the previous local hospital placement. Make it very cear that youing back to your place is NOTone of the options. This is time for some Tough Love, when you gather up every ounce of emotional strength and fight to get your own life back. Otherwise she is going to rule your life forever more.
This is slightly off-topic, but may be useful: According to Japanese government figures released in 2010, there are 700,000 individuals living as hikikomori with an average age of 31
https://en.wikipedia.org/wiki/Hikikomori

Hikikomori (ひきこもり or 引き籠もり Hikikomori?, literally "pulling inward, being confined", i.e., "acute social withdrawal") is a Japanese term to refer to the phenomenon of reclusive adolescents or adults who withdraw from social life, often seeking extreme degrees of isolation and confinement. The term hikikomori refers to both the sociological phenomenon in general and the people belonging to this societal group. Hikikomori have been described as recluses, loners, or "modern-day hermits."[1]