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At my wit's end -advice please - Page 4 -Carers UK Forum

At my wit's end -advice please

Share information, support and advice on all aspects of caring.
Funny you mentioned a contract as I was just sitting down composing one!
I have to say it isn't straight forward as she does have difficulty walking at the moment and does need a wheel chair if going out. So it is not easy to say "goodbye -just get on with it"

What worries me as I mentioned before is that due to her anxiety and her habit of catastrophising there is no mileage in her getting stronger ? So she has got to decide . I am not (even if I could) going to make decisions for her. Yes she has got this horrible condition but hiding away and not making an effort isn't going to make things better. Until she realises that she has to put the work in. .
Will let you know next week if things have settled down and she is sticking to the agreement.
Wishing you all a good weekend.
Well it has been quite I while since I posted here and there have been many ups and downs since the beginning of December. Regrettably more downs and ups although I do try and hang on to the few positives.

The contract we agreed to when my daughter came home from rehab has proved not worth the paper it was written on but I suppose that is why people say contracts are there to be broken. We are back to pre- rehab days and I feel she really got nothing out of it. She hasn't followed through on any of the suggestions made by the physio, psychologist and occupational therapist. Once again she tells me she does physio every day, but I am never allowed to see her doing anything. She has had one appointment only with the psychologist although granted he was away until January but she still has not made an appointment claiming she has left several messages !!

She did agree to move into her flat temporarily on 27th December , but guess what on the day she just told me things had changed and she is now relapsing again so has to rest on her bed . As she has cried wolf so often I feel bad not believing her so I have decided for my peace of mind I will believe everything she tells me. She has been told to walk a short distance every hour and during the day to sit in a chair or sofa rather than slumped on her bed. When I remind her of this there is always an excuse of, fatigue, leg pain, vertigo,. I believe that her walking problems are more to do with inactivity than the MS as the consultant said at the hospital she still had good strength in her legs and with graded exercise could improve immensely but anxiety was holding her back. She has been told this for over 2 years so I cant believe they are all wrong.

I now realise that she wants to remain in her room and not grow up.. The psychologist explained that remaining as a child she does not have to make decisions and everything will be done for her. Once again I am stuck as I have had several talks about challenging herself slightly everyday, building up her strength slowly and pacing herself throughout the day. Each time I suggest going out for a drive or to visit the shops she agrees and then something crops up - an important phone call, fatigue, etc. I know she only agrees to shut me up and I just end up the nagging Mum!

She is starting hypnotherapy shortly which may take the edge of the anxiety and help her cope with stress but with her history of inconsistency I don't believe that she will do more than a couple of sessions.

We now have someone to come in a couple of mornings per week to give her a hand which does take the pressure off me but I still see no desire in her to make the effort to get stronger and move on with her life.. I suppose looking back on her childhood and teenage years she was always for difficult, stubborn and anxious so the illness has just made everything worse.

However I am still her mother and love her immensely even though I feel so frustrated.

You have all given me such good advice over the last few months and I do read over the posts to give me strength. However I have now come to the point of just giving up as whatever I do seems to be wrong.I have found there is no point challenging her as I believe she now actually "needs " this illness to define her. If she improves and gets stronger then she will be expected to do more, socialise,move out , maybe start working part -time. So that is where the term secondary benefit term seems to fit in

Not too sure how I proceed from here - in a nutshell she doesn't want to leave home, doesn't want to commit to psychotherapy on a regular basis, doesn't really want to build up her strength. And regrettably no one can make her. I understand that it all has to come from her and that she can have 20 therapists supporting her but all they can do is help her help herself. So how do you motivate someone to want to move forward ? I know that I am probably the last person she will listen to ! She tells everyone she speaks to plus that awful Facebook how ill she is and she is so convincing she believes it herself. It is just so hard to see her doing this to herself. It is almost as though she is saying ,after reading all the negative stories -" well this is going to happen to me eventually so bring it on and there wont be any surprises!!"

I introduced her to a lovely lady who was diagnosed with severe MS aged 22, she is now 72 and has been on a walking holiday in the Highlands!! My daughter doesnt seem to be interested in talking to inspirational people who have turned their lives around. This lady had no choice she was 22 with 2 young children and her husband walked out on her ! So she had to just get on with it.

Sorry this short post has turned into a long rant, but it is very cathartic to write this down !
First, I owe you a PM, and apols (you seemed more hopeful then!)

Secondly, you say (re her becoming more independent/adult, less infantilised/invalid) 'no one can make her' and 'how can I motivate her'.

OK, it's late evening, and maybe this is pushing too far, but actually, I think she CAN be made to get off her backside, and she CAN be motivated....but either not by you (ie, her mother) or not 'sweetly'.

I really, really do think the time has come for not just 'firm love' but actual 'tough love'.

Think of it this way - think Maslow Hierarchy. In the end ,we have basic needs which we have to satisfy in a heirachy. We have to breathe, we have to drink, we have to eat, we have to have shelter, etc etc. In a strict hierarchy.

I want to put to you - if your daughter were faced with the choice of either satisfying these needs by her own efforts, or doing without....which would she choose?

I do think, quite seriously, that WITHDRAWING everything (except air to breath!) is the ONLY way now to force her to realise that she is NOT a child any longer -whether she wants to or not!
Let her fend for herself....and see what happens.

BUT, I'm not sure this is something you can do, because I suspect you will 'crack' before she does - it's what parents do!!! (resigned sigh......)

Sorry if this seems harsh - but what alternatives are left now? You've tried nice, you've tried encouragement, you've tried support, you've done absolutely everything that is 'kind' and 'firm'.....and now she's back being Princess in the Tower again, filled with endless self-pity.

I just feel she's thrown down the gauntlet....

Oh dear..... :(
Thanks Jenny. I was a bit low yesterday but after a good nights sleep I do feel a bit stronger and up for a challenge. Let's see what today will bring.

I think part of my problem is that I always get pulled into her moods and end up feeling angry with myself and frustrated with her and also the situation. There is no one I can contact as she is an adult and even then what can they actually do. No one can "make " her do anything that will change the situation it has to come from within. Why should she change and want to get stronger? She is getting everything she needs at the moment - food, a roof over her head, people cleaning, cooking ,doing the washing and receiving benefits!

Yes she does have walking issues but as I mentioned before I believe it is at least 80% lack of use. She actually believes that going into rehab made her worse because "they pushed her!"
What is more worrying is that people are now giving up on her and walking away. Which makes me feel,as though this is my fault for enabling her so the guilt that I thought I hand under control has come flooding back with a vengeance.

I am wondering if the reason this week things have escalated is because I mentioned I was booking a holiday in Feb and suggested she finds a Carer to come in twice a day and maybe a friend to stay at night. Could she be so manipulative and does she realise what she is doing?
These are questions on my my mind 24/7. It has taken me so many years to realise how strong and stubborn she is.
I suspect the holiday is indeed the trigger! I doubt it' 'conscious' manipulation, but it's probably 'instinctive'....sort of 'panic attack'???

Go ahead and book the holiday!

You say again 'no one can make her' do what she doesn't want to do, and then promptly say that she gets everything done for her!

Well, that's the problem! You do everything for her so she does not NEED to do anything herself! She's at Hotel Mum!

Stop doing things for her! You can provide food (in the fridge), and a washing machine and soap powder...and that's it. She will either starve, or shift herself. Either wear dirty clothes, or wash them herself.

I do think that is the basic level of 'enabling' you are doing, that is the first to tackle.

I know you said way back that YOU had had some counselling. Do you think it's time for some more for YOU? Not necessarily to give you any more 'understanding' or 'insight' into your daughter's psychology right now - because you've got that to a T!!!!! - but on how YOU have to change YOUR behaviour.

It's said here on this forum so , so often what we have to accept, very often, that we cannot change the behaviour of the caree 'directly' but we CAN (and should!) change our OWN behaviour....and that it is that change in OUR behaviour that then changes THEIRS.

It's like a gear wheel, or some such mechanical analogy. We can't turn the wheel ourselves (our carees' behaviour), but we can turn a separate wheel (our behaviour) that is linked (the gear wheel) to theirs.

So, eg, YOU stop making her meals/doing her laundry etc etc, and that is the 'lever' that makes HER do them!

Yes, she'll fuss and 'collapse' and do the 'You're the worst mum ever!' stuff (they all do!), but so what? That's just a counter ploy to try and get YOU to change BACK to 'enabling mum'.

I'm glad you're feeling more resolute this morning - late nights are never good!!!! But please, book the holiday, and stick to it.

Remember, this is NOT selfish by you - it is being a 'true parent'. Our task is to make our children INdependent, not keep them 'DE-pendent'. They don't like it (!), but anything else is in the long term, not in their best interests.

It's hard hard hard to be 'hard' and 'tough' but anything else (a) doesn't work now and (b) is not what they NEED.

Wishing you better! Cheers, Jenny
Your daughter seems to be entirely focussed on herself, her feelings her....
What is going to happen when you are not able to care for her any more, due to age or disability. As the mum of someone with learning difficulties, pretending I'm going to live forever is a luxury I cannot afford, so I've always tried to help him to have a good life independent of me. I've had some serious health problems so cannot look after him full time now. He has a mental age of 3, but can live alone with carer support.
Long term, what are the options?
She stays with you until you are too old to care for her then....?
She moves out and you have a life, and she is supported by others?

As a total outsider, she has absolutely no incentive to improve or make any effort whatsoever at home.
BUT she is an ADULT, in age anyhow, so you cannot be forced to care for her, at all.
Why do you have to make any provision for her if you want a holiday? Shouldn't this be a discussion she has with Social Services? She sounds very cunning and manipulative to me, playing some sort of game with you.
Why doesn't she go back to her place to be cared for there?
Jenny and BB you are both quite right, it is me that has to change and if it were purely an emotional and mental problem I would find it a lot easier but there is no doubting she has MS and it is quite active. Whether her symptoms are as bad as she thinks well that is difficult to say. Everyone's perception of pain, symptoms etc is/are different.

However there is no cure for this awful condition so one has to deal with the hand one is dealt.. I have already started my new basic caring ( i.e. just making sure there is food in the house and being supportive when it suits ) I have named this strategy " operation empty nest" this is to lighten the mood! I am sorting out dates for a well earned break and will definitely go ahead when she is back from the hospital. The treatment itself is only a few injections plus regular monitoring and blood tests,and hopefully the side effects are not too severe. When all is said and done it is a chemotherapy drug so she is very anxious which is totally understandable.

For the first time in the last 2-3 months I have not allowed myself to be drawn into long discussions about how poorly she is and if I receive any texts I only reply to the positive ones.

It is quite a worry thinking what will she do when we are no longer here. Have you BB got anything planned for your son ? do you have family you can rely upon? I will have to remind my daughter to contact Social Services once more as I know that this borough has really long waiting list.. When my mother was going downhill a few years ago and I contacted Social Services they told me they had a backlog of about 6 months ! in the meantime I plodded on caring for my mother who died before anyone came to see her!!

I do know what I have to do but it takes the advice from all you lovely carers to give me the strength to change my ways.

Many thanks
Hi Maxwell
I found this when looking for someone else earlier. Although it was written to help deal with anxiety in children I think it might work with older 'children' too. Certainly these techniques have helped my son over the past year and he's 22! Combination of praise, firm love and clear communication.
Hope it helps a little

▪ Make sure they know you love them and are proud of them. Even when things are busy or stressful, and it feels like you are in survival mode, a word or a hug can reassure them a huge amount. Praise them for what they do well, and encourage them to try new things
▪ Be honest about your feelings – you don’t have to be perfect. We all get things wrong and shout or say unkind things from time to time. If this happens, say sorry to your child afterwards and explain why it happened, They will learn from you that it’s OK to make mistakes and that it doesn’t make you a bad person
▪ Be clear about what is and isn’t acceptable – and tell them why. Children need to know what is OK and what isn’t, and what will happen if they cross the line. Follow through on what you say as otherwise they may get confused or stop respecting the boundaries
▪ Own your own role – you are the parent, so don’t be afraid to take tough decisions. If your child sees you are scared of their reaction and always give in to them, it can make them feel very powerful, which can be frightening. Children need to know that you are there to keep them safe.
I have an older son, but he has a 4 year old who comes to stay every weekend (separated) so M will always be living away from home with support, apart from visits back here. My eldest knows that he gets the house on that understanding.
I have nearly died, twice, once from illness, once in a head on smash, my life was saved because by pure chance I was driving my late husband's Range Rover, but even so I was disabled. M's flat is in every way a home from home, a really sunny cosy place. Finding staff to cook proper food and manage his noney is a continual problem though.
Mrs A those suggestions ,particularly the last one seem a good idea even though they are aimed at children.

Jenny you're suggestion about going back to counsellor is valid but I must admit just listening to you all on this forum is actually more helpful. I found last year that when I left my appointments with this very nice lady I did feel really confident and ready to face the world. However that only seemed to last for about 3- 4 hours. So venting on here and being able to re-read all your helpful suggestions is so much better .

Today was not too bad as I stayed out of the way. Several errands to run and then on to my volunteering. Each day is so different and although I realise I do over react and get frustrated I must not loose sight of the fears and constant problems my daughter is going through. MS is a monster of a disease/condition and it must feel like the sword of Damaclese ( spelling ?) hanging over her. I think a lot of people view MS sufferers as old ladies in wheelchairs but unfortunately it is a young persons disease the average age of diagnosis mid 20s to 30s. It is also known as the Snowflake disease as no 2 people are alike. So apart from ongoing problems she sees her friends moving on with their lives, jobs, marriage , children - not easy.

I will keep up with the support, love and hugs but try and withdraw to a distance that allows her to get her confidence back. Thanks all for your continuing support - you are all STARS.