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At my wit's end -advice please - Page 3 -Carers UK Forum

At my wit's end -advice please

Share information, support and advice on all aspects of caring.
I'm with BB on this. Coming back home to her Princess Tower (!) is NOT an option. You have to tell her this (again and again) and tell the rehab staff too, and say she has to be prepared to live in her own flat, on her own. No carer. (How many other MS patients have full time carers?????)

You've come SO far with your daughter - just getting her into rehab was a MAJOR achievement. But as you say, if she comes 'home' (to you!) then it's all been wasted and you're back to square one.

I do think it's time to 'step back'. Her 'home' is now her flat. Not your home.

It's going to be hard - there will be tantrums (or similar!). Tears and pleading.....but who said motherhood was easy????! ......

One thought...IF you have to compromise at all, then I would compromise on the Carer issue. The 'deal' would be that your daughter comes out of rehab and into her own flat (because that's home to her from now on), BUT she can have a part time carer for a fortnight/month, to 'adapt her' to living independently.

I wonder if the rehab place has any thoughts on the transition - as you say, they'll have seen it all before! Also, they might have an index of carers for MS patients who know what the key issues are going to be.

My thinking is that if your daughter goes to her flat, and the 'blow' (!) is softened by having a carer to begin with, then you can ease off the carer, who can turn up less and less often. In the end, the bottom line is that YOU control the carer situation because you pay for it. Unless your daughter can pay for her own carer, if you stop paying them, they'll stop going (unless she gets some kind of NHS/SS funded care - but that's up to HER to sort out - not you!)

In the meantime, great she's finally in rehab, and I'm sure she's learning a lot (even if she doesn't want to!). Remember, there'll be a significant difference, on her past behaviour record (!), of what she SAYS she can/can't do and what she ACTUALLY can/can't do! She wont', I promise you, be able to 'fool' the rehabe experts - they'll have seen it all before and know when she's exaggerating/trying it on, etc etc (and will understand why - and will have seen that fearful reaction in many patients over the years)

Wishing you all the best - you are SO much further on than you were when you first posted. Now just hold the line, get her flat ready for her, let her have a temporary carer to transition her, and then move her in as soon as she leaves rehab.

It can be done!!!! :) :) :)

Cheering you on, Jenny :)
Thanks all for your supportive advice. I totally agree that coming back here is going to be problematic. The only worry we have at the moment is that she is going to start a disease modifying treatment in about 3 weeks time and as it is a a strong drug( type of chemo) with possible severe side effects she cant really be left on her own for about a month. She has to have injections everyday for 5 days and although we were told she was going to be admitted this has now changed as they dont have a bed for her - surprise surprise.So I will have to take her in a taxi everyday and bring her home

After thinking about it all night and all morning I believe that at the moment my only options are to insist she goes to her flat and just move in with her for a month then try and get a carer in once a day for a couple of hours. Or if she does come home then stress she will not be in her room ( will get a padlock !!) but the spare room which is one floor down. Feeling ill just thinking about it!
If she cannot manage at home then either the NHS or Social Services must arrange carers for her, or residential care. After all, if you lived at the other end of the country this would be done so she could have the trestment. So don't keep stepping in, step back and let the authorities do what they are paid to do.
Because she is in a private hospital at the moment they can only arrange for a carer through an agency which she couldnt afford.However she told me that Social Services is coming to assess her but the earliest they can come is 1st December. I think we will have to have her home until SS can get something organised. She cannot stay where she is so there is not really another option. Also I do appreciate she is very worried about this forthcoming treatment so she needs the support but I have told her that coming home for the next few weeks is on our terms and where she sleeps is non negotiable.
I am sure that things will settle down eventually. Just have to have faith.!!
NOT TRUE! I had a knee replacement in a private hospital, post discharge care IS available equally to private hospital patients but the hospital may not be familiar with the process. Ask to see a senior administrator in the hospital.
I still think it's best if she comes out of rehab and goes straight to her own flat. And yes, if you need to 'sleepover' while she's having this chemo-style treatment, I still think that is preferable to her coming to you - because I suspect that psychologically she will have 'retreated'. Yes, padlocking her old Princess Tower would be a help, and you could, perhaps, regard the 'spare room option' as an 'emergency possibility' if absolutely necessary. But surely better for you to sleepover with her for a few weeks during the treatment period, gradually handing over to a carer as the treatment ends.

Personally, I think THE priority is NOT letting her come back to her 'childhood home', but to stay in her 'grown up home', ie, her flat.

It's taken you SO MUCH EFFORT to get her OUT of your home - please don't undo all that good (and painful!) work by 'giving in' and letting her come back again.

Tell her if she's a good girl she can come home for Christmas! (But back to her flat on Boxing Day!)

Also, just a thought, but when she comes out of rehab, can you organise some sort of 'celebration' for her, with all the family welcoming her with a 'surprise party' or somesuch, to make her feel she's achieved something important.

And, can her friends rally round as well?

Finaly, not sure how 'beautiful' her flat is, but could you and she do some 'shopping' for it, so that it's all 'lovely' for her, so she can feel it's her private and perfect territory??? Good mum-daughter bonding too, perhaps?!!
PS - do you think she's making any friends in rehab? It would be great if she did - even if they don't live close by, they can pal up and stay in contact via social media/visits, etc etc etc? If she says she hasn't made any friends, check with the staff - they may think differently!)

PPS - can you book her in again (finances allowing!) for, say, a few days in the New Year, or something she can 'look forward to' in terms of checking her progress etc etc. That might be reassuring for her??
Well haven't reported in for a while. But I am glad to say that my daughter is still in rehab and will be discharged this weekend. I am not entirely sure that she has got as much out of it as she could but she went and was compliant most days. I believe that the hospital has been in contact with the local team who will eventually visit her to keep up with the work done.

I am embarrassed to say that she will be coming home until care is arranged . However we have come to an agreement that she will only use her room for sleeping , she will come down for all her meals ( using the stairs as physio) and that from after Christmas
she will go to her flat on weekends. She has agreed to move end of January after her treatment. Regrettably the treatment has been delayed as it was found that she needs a chickenpox vaccine before commencing plus a blood test 6 weeks later. So to lower her anxiety over this time we have agreed to the plan.

Just hope that she sticks to this but we have had several long chats and the psychologist here has been great, just hope this can been continued from the locAl hospital as I think everyone understands that most of her problems are caused by anxiety - catch 22 situation.
I have laid it on the line that she must put more effort in herself , the team at the hospital have been wonderful, very patient but she can be very taxing. The psychologist has explained to them that they were in no way failing her but when she refuses to do something it is her way of remaining in control.

I am feeling reasonably up beat but also a little worried that she slips into her old ways but I have made it quite clear that if she doesn't stick to the agreement she will have to move into a care home and rent her flat out to pay towards the costs.

Wish me luck, and the strength to keep sane!!!
Hi Maxwell, that's not ideal, but what is? However, it does sound an excellent compromise given the circumstances. As Christmas is coming up, it can be difficult getting hold of people, so I suggest that, just in case, you ask for a phone number you can ring if you hit a stumbling block during the Christmas period, for your own peace of mind. Hopefully, things will go well, and it won't be necessary.
Would it be sensible to draw up a contract for her before she arrives back home? This would set out what she is, and is not, to do while at your house (emphasis - YOUR house!) (SHE has a perfectly good flat of her own, that's HER territory!)

This may sound odd but it's becoming a popular practice (so I read in magazines!) for parents to do when their 'boomerang' children come back home - the contracts set out the do's and dont's, specifically so that their now-adult children don't 'revert' to infantile behaviour (from not tidying their rooms to thinking that a meals-on-demand service operates!!!!)(etc etc)

If you and your husband sit down this evening to write down your side of the contract, what behaviour you require from her, and what she gets in return (starting with the privilege - and it IS a 'privelege' not a 'right'!) to live in your house), and then this sets out everything from the start.

The premise is, if it's not in the contract, it either 'doesn't happen' OR it is subject to 'separate negotiation' which ALWAYS requires a further concession from her (in exchange for whatever concession you agree to make in respect of whatever she's going on about!).

The contract really just has to say what you're saying here - ie, 'you will come down for all meals, without exception', 'you will perform the following household chores on a daily basis', etc etc etc.

This may seem 'overkill' BUT a written contract achieves two goals (at least!)

The first is that it clarifies expectations and assumptions on both parts - as you know (as do we all!), so much conflict in families (and the world!) is caused by each of us having different 'assumptions' about all sorts of things - your daughter may be 'assuming' for example that she has 'won', and is now going to 'get her own way' and 'come back home to be pampered and play the invalid' etc etc .

The second is that it formalises things, sets things out, and provides a framework and, perhaps most importantly, a point of reference eg 'hmm, does the contract say anything about free taxi rides by Mum to wherever you want to go? no, it doesn't. Right, that requires a separate negotiation, so, what are you going to do in exchange for a tax ride tonight?' etc

She may well and counter with a youthful (!) indignation that a contract is 'cruel and unusual' (!) and that it proves 'you don't love her' (!!!!), but the point is you are doing all this BECAUSE you love her, and you want her, desperately, to have as independent a life as her PHYSICAL condition permits - not her mental hangups about it constrain her to!

And, as you've already mentioned, the final most important thing in the contract is the 'term' of it. You've said end Jan she 'goes home' (or whenever it was), so yes, that has to be in the contract as well.

I'm glad you are pretty upbeat at the moment, and do hang on to that (at least in front of your daughter!) - a 'bright and breezy' 'can do' attitude will knock out any 'poor poor me!' attitude from her (you've been there before on that, I know)!, and a lot of judicious mix of praise and 'firm love', plus the 'break' you've had with her in rehab, surely must stand you in good stead.

(As a final measure, why not either write down all the 'bad stuff' that used to be 'the norm' with her before you started getting to grips - eg, read back your own first posts here!!! - so that you have a clear list of 'bad old days back then' to contrast with what WILL be the 'good new days' when your daughter comes out of rehab.)

As ever, wishing you all the best - as I said, you've come SO far from when you first 'arrived' here!!!

Kindest wishes, Jenny