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Seeking fellow carers - Carers UK Forum

Seeking fellow carers

Tell us a bit about yourself here.
I've never been on a forum before but I thought it might help me to find others who understand. I have a 16 year old daughter who has suffered for the last two years with life-limiting anxiety and emetophobia, and is waiting to be assessed for ASD. I've always been based at home since I became a Mum, but had plans to do something else later on.
I find it hard coping with all of the things she finds difficult, and feel that I'm keeping her life going at the moment. She lacks a lot of the social skills and confidence that others her age have, and I do a lot more for her than mums of typical teens.
She hasn't responded well to CBT, not really wanting to push herself, but she is studying for GCSEs right now.
I feel a whole range of emotions; on good days, I think maybe it's all a phase and she'll come through it in the end. On bad days, I find it hard to see how she'll live a normal life, eg having a job, a relationship, etc.
How do others cope in these situations? I wake up early a lot thinking about it, feeling guilty that I've not done the right things as she's grown up.
I would value the support and opinions of others.
https://www.carersuk.org/forum/specific ... tal-health
Hello Carolyn and welcome
There are quite a few parents of MH issues on here.
My 22 year old son has some kind of undiagnosed anxiety/MH problem which we only identified after his return from Uni, but i think he'd kept it hidden for many years before that. Because of his age and (male) pride we are trying to cope and care outside of the system. GP said because he's no danger to anyone else he didn't warrant any help. :roll:

The link above is to a whole section of threads on caring for those with MH issues, there's also another one for autism/Aspergers. If you search for " teenage" you'll find lots of people's experiences.

There's a charity for young minds which is very useful and has a parents helpline
http://www.youngminds.org.uk/for_parent ... t_helpline

Over time more posters will join in and say hi but done hesitate to join in threads or start your own to ask questions or rant or whatever. We are friendly and don't bite ( well most of us :) )
Sorry Carolyn, forgot to say how I cope.
Firstly every carer has to look after themselves otherwise they burn out physically or mentally, so for me that means exercise, fresh air, using the forum, mediation and relaxation techniques, healthy eating, time away from caree etc, oh and cohnselling when things got very bad.

Daily we apply firm love and clear boundaries. We try to support him to grow rather than enable him to stay 'stuck' by doing things for him, and he has come on tremendously in past 18 months. We praise, praise , praise to build self esteem and try to build on slightest sign of interest e.g. he likes eating so we encouraged and supported him to cook. Then he started shopping with me. Now he does all the meal planning and shopping each week. 2 years ago he wouldn't leave house alone at all. Giving him responsibility once he had basics was key. Also not to step in if he makes mistakes, he has to realise consequences but not be criticised.

What we do is what we've worked out, its not perfect and not professional . Am sure other approaches are available.

Thanks for your reply, Mrs A.
I have a plan to start to withdraw from my daughter over the summer in some areas. I know that there are things she is capable of doing herself but that I've got stuck doing, so I've given her warning that certain things are going to change in the summer. I'm hoping that this will encourage her to see that she can do more for herself, as well as giving me a bit more freedom. It will be hard as she gets used to ways of doing things and finds any change difficult, but I need to be strong and persevere.
Thank you for the links and ideas,
Carolyn, speaking only in a VERY 'general way', but when it comes to MH issues of any kind at all, it's important to understand the difference between 'supporting' them, and 'enabling' them. When you support someone you are there for them, but your help is designed to move them forward, to eventually reach a stage where they don't actually need support (or much less). When you only enable them you simply provide the means of them not having to change at all - you just 'keep them where they are'.

It sounds from what you say that you are clear on that, because you are intending to carefully withdraw some of the 'carrying' that you have been doing, is that it?

Personaly (and this is only personal 'as a mum' myself) I think it's essential that ALL children and young people have their 'tasks' to do, that they make their 'contribution' to the family unit. We don't expect our children to do 'paid work' (though if they do, that's great!), but, like every human being, they have to 'earn their keep'. I used to tell my son (still do!) that while he is a student/pupil, his studies are his 'work'. That's the way he 'earns his keep'....PLUS doing some household chores as well, some 'tasks' that are his to do.

I do think that any child/teen who lives 'free' starts to 'rot' from inside. They start to think the world owes them a living, that they are 'entitled' to a free ride, and that parents exist merely to supply their needs and wants!

Of course when illness or disability is in the picture, what they contribute to the 'family unit' has to be scaled proportionately, but the point is that I would say your daughter has to 'do something', whether that is her studies, or work around the house, or some 'contribution'. She can't just 'live free' off you!

Work 'pays our way and earns our keep' but it is also highly satisfying, and gives one a real sense of self-worth and achievement. it's valuable for that reason alone!

Wishing you all the best in helping your daughter steer her path towards adulthood. KR, Jenny
Thanks for your post Jenny. As I said earlier, I can see now that I must withdraw from my daughter in certain areas in order for her to become more independent. I don't know if others have found this, but before she developed more serious problems with anxiety, I felt I knew how to deal with her. I could say "no" to her more unreasonable demands without feeling plagued by guilt and insecurity. Once she became ill and could only leave the house with great difficulty, I just felt lost in how to deal with her. I didn't know what she was and wasn't capable of, so I didn't try to get her to do anything additional to just getting to school, which was very difficult in itself.

I know there are things I would do differently with her growing up if I could go back again, but there's little point dwelling on that now. I hope it isn't too late to encourage her in the right way now.

I know I kept waiting for her to do certain things for herself as she got older that I naturally did when I was her age. This is more in terms of looking after her body, hair, etc. My 11 year old son is developing in that way, wanting to do things for himself that my daughter still wants my help with. It's the very fact that she even wants my help with some of these things that makes me feel that she isn't "typical", if I can put it like that.

I feel sad that nothing ever is easy with my daughter; it always involves a painful process. I don't look forward to withdrawing, but I know it's necessary. She is very much attached to me, always wanting me instead of my husband, which maybe is natural for a 16 year old girl anyway.
Hi Carolyn
As I said I'm no professional but from what you say I'd take it slowly one step at a time. Try to turn your thoughts from 'withdrawing' to 'supporting her to independence'. That is part of a parents job and at times I have said it that way to my boy. I wouldn't be doing my job and being a good parent if I wasn't helping him grow up to be a responsible adult.I also think they need space to make their own mistakes sometimes, or show them that making a bad decisions doesn't mean disaster, it's just a bad decision and we all make mistakes sometimes. The trick is in recovering from them.
Do you get any help or support for your daughter. Is camhs involved?
Yes, my daughter's been in CAMHS for 19 months now, and has been on the waiting list to be assessed for the Autistic Spectrum for nearly one year. I don't know how it is in other parts of the country, but where I live there's a wait of 18 months to two years to be assessed and diagnosed.
I suppose I haven't really described what I want to do in positive terms in my posts. I haven't described it like this to her, more that now she's getting older she needs to do certain things for herself in order to become an independent adult.
My daughter is fortunate really and has a lot going for her in terms of natural intelligence and creativity. It's a case of helping her through to adulthood in the hope that she will become an independent thriving person.
I struggle myself with it all sometimes. It can be one step forward, then several back. I like to hope that she will come through this difficult period and that in five, 10 years time I can look back and see real progress.
I hope so too Carolyn, for you and your daughter and for my son. I know that one step forward several back feeling well . I also the know the pushing a rock uphill feeling. But at the end I still have hope, which is what separates us parent carers from those looking after elderly and dementia
Hope rules
Hi Carolyn,

I don't care for someone with MH issues (he has mild cognitive impairments but is otherwise ok in that area), but I do have MH issues myself (bipolar II disorder) and from a personal perspective I agree with the 'supporting'/'enabling' distinction. When I am depressed or hypomanic, I need a certain level of careful 'tough love', so to speak. My mum has supported me throughout the years and she had to get me to do things I would refuse to do for myself. For example, when depressed and just washing my hair seemed like an uphill battle, she would simply march me to the bathroom (well gently coax) and get me to do it. Little things like that help. Baby steps.

I hope you get some support that works for you both soon. I am glad she is at least under a MH team.

And withdrawing a bit at a time seems a good idea to me. Slowly slowly catchy monkey as my mum says! Lol With my carer's hat on I would say I need to do that more with my husband - try to get him to do more, when he is physically able, on his own.