Parents, carers and disabled parents
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Coping with a teenager that has given up

jcjajcja Member Posts: 6 Listener
My 17 year old daughter  became disabled  in 2018 after an illness I am her full time carer. She is a wheelchair user with  limited strength in her upper body and suffers with anxiety, chronic pain and fatigue. Daily life is a struggle. This week her mental  heath has declined to the point of giving up. With a fail attempt of taking her life so now she is refusing to eat or drink. Can anyone help with how I cope with this.

Replies

  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,997

    Scope community team

    edited July 1
    Hello @jcja and a warm welcome to the community. 
    I'm really sorry to read how difficult things are and that both you and your daughter are struggling. 
    Becoming a carer can be incredibly difficult and seeing a loved one struggle with their mental health and attempt to take their life must have had an enormous impact on you.
    Do you get any support for yourself or any help caring for your daughter? 

    It sounds as though you are understandably finding things quite difficult at the moment and if you haven't already, it's important you talk to your GP about the extra strain you're under. Taking care of yourself is really important and something a lot of carers forget or struggle to find the time for. Have you seen this article from Papyrus? Their Hopeline may also be of use to you. 

    With regards to your daughter, is she receiving any help for her mental health? Are any professionals aware of her recent attempt? You mentioned she is now refusing to eat or drink and I was wondering how long this has gone on for?

    We're going to send you an email to see if there's any other support we can offer you and your daughter, so please look out for this in your inbox. 

    Adrian
    Senior Community Partner
    Scope
  • jcjajcja Member Posts: 6 Listener
    @Adrian_Scope
    I have spoken to our gp and was told to her there was nothing they could do until she has been seen at a rehabilitation centre which she has been on their list for 18 months. Camhs has been informed still wait to hear from them.
    Every single aspect of her care or education has been a fight and continues to be.
  • Richard_ScopeRichard_Scope Posts: 2,829

    Scope community team

    Hi @jcja
    This is an appalling situation for both of you to be in. Has your daughter had any contact whatsoever with physiotherapy services, even via Zoom? They can begin the rehabilitation process by demonstrating exercises that you and your daughter can carry out. In terms of her mental health, I can suggest Liz Whiteley. She is excellent with great insight into disability, being a disabled woman herself.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • jcjajcja Member Posts: 6 Listener
    @Richard_Scope
    We had 6 weeks of intense physiotherapy ( twice a week) in 2019 with little improvement so due ro that and staffing issue it stopped, since then we have had two zoom call she has exercises to do but no improvement in condition. She can not stand and we do not have any equipment at home to help her do so at home safely. Thank you for the suggesting liz whiteley I will contact  her although my daughter is possibly not in the right head space at the moment. 
    @Adrian_Scope the eating and drink has been for four days since and just before the attempt. The gp is aware but is unconcerned.
  • Tori_ScopeTori_Scope Posts: 4,959

    Scope community team

    Have you tried speaking to a different GP @jcja

    I'm quite concerned that she hasn't eaten or had a drink in 4 days. I'd suggest that you ring 999 if you're worried about your daughter's immediate health, or call 111 to see what they suggest. 
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  • jcjajcja Member Posts: 6 Listener
    @Tori_Scope
    I am concerned but it's a fine line between push her and pushing her to far. As for the gp I was discussed but her medical issues are complicated.
    From the last conversation with the gp he think all of her issues are psychological and the not eating and drinking is that too. A different branch of camhs saw her in the hospital at discharge so the gp will not get involved. She has been out of hospital for two days and no-one from camhs has contacted me so far.
  • chiariedschiarieds Community Co-Production Group Posts: 9,077 Disability Gamechanger
    Hi @jcja - I'm so sorry to read about what your daughter, & therefore yourself, are going through. I hope the info given above by the Scope team is helpful, but would also reiterate what Tori has said if you have immediate concerns, as well as trying to speak to a hopefully proactive, different GP, if at all possible.
    Do you feel that her physical problems & struggles have contributed to this decline in her mental health? Have you ever had a care needs assessment? If not, you can apply for this without the need for a Drs referral. Please see: https://www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/getting-a-needs-assessment/
    Would you mind me asking what caused your daughter's problems in 2018? If you don't want to that's fine.
    Has your daughter ever been referred to a pain clinic?
    As a sufferer of daily chronic pain I know how difficult this can be to live with, yet there are ways to cope with this, even if it just reduces/dampens it down a bit. Physiotherapy can help with this too, but often a combination of things seems to help. As everyone's different, it's finding what works for that person, so can be a bit of trial & error. Please see the following:https://ppa.csp.org.uk/content/links-people-pain 
    Just hoping that if your daughter found ways to help reduce her pain; got appropriate aids, etc., or just realised that there are ways of coping, that it would give her hope too. My best wishes to you both.
  • jcjajcja Member Posts: 6 Listener
    @Tori_Scope
    In 2018 she had glandular fever which caused her liver and spleen to enlarge this was the start of the pain after scans they found 3 large gallstones (which they haven't removed or treated) after the second stay in hospital for this pain she could not hold her body weight when stood and addicted to tramadol.
    Apparently glandular fever can cause chronic pain and fatigue which is where we are now.
    Yes she has been a couple of times by the adult  pain clinic  as we don't have a child's one locally. We have had 6 week of physio and been to see a clinical psychology all have discharge her.
    We had a OT visit our previous property to access but when I request a visit to the current property I was told as her disability was not permanent they could do no more so never came out.
  • Cher_ScopeCher_Scope Posts: 3,950

    Scope community team

    edited July 2
    Hello @jcja How are you and your daughter doing today? 

    Has your daughter managed to eat or drink anything since you last spoke to us?  Also, did CAMHS agree any follow up plan with you during discharge in terms of contact?  

    I can really empathise with your frustration about a lack of input from services, and at this point would be inclined to call CAMHS to explain your daughter has had limited (if any) hydration or food since discharge and your concerns are escalating about her welfare.  Also, it might be worth considering changing GP, or asking for a second opinion, if you're unhappy with the support previously received.  

    You mentioned that your daughter is addicted to tramadol too - has this been discussed with a professional?  

    I'm sorry you've come across so many barriers to help so far, and am rooting for an upturn in your daughter's wellbeing.  Please keep us updated and know we will always be here for support  <3
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  • jcjajcja Member Posts: 6 Listener
    Update 
    My daughter  still is not eating but she has had a small amount to drink.
    Should of had a meeting with camhs crisis team but apparently  they could find my house and neither  of them had phone to ring me for directions either.
  • Ross_ScopeRoss_Scope Posts: 4,097

    Scope community team

    Hi @jcja

    Thanks for the update, I'm glad your daughter has drank something and hopefully she will eat soon, it might be worth trying to encourage her to eat little snacks and then slowly build back up to meals. 

    That's a shame about the Crisis team, have you contacted them to resolve the address situation?
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