Caring for my adult daughter is heartbreaking — Scope | Disability forum
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Caring for my adult daughter is heartbreaking

FionaA Member Posts: 15 Connected
I am the sole parent of an adult daughter with JME elipepsy. It started when she was 16 ish but she managed to complete school and University and running a business. In the last 18 months or so she has seriously deteriorated and can no longer work. We have done the consultant thing and he is great but there is nothing more that medication can do. So her hopes, aspirations and dreams have all been shattered and my smart and talented girl can't even cope with a job in a tea room for a few hours a day. Her fits are changing and increasing and I have moved to be nearer her when she needs me. Even her daily living is now chaotic but she tries so very hard it would break your heart. Does anyone out there have anything similar going on. At 61 I am now struggling with the knowledge that I will probably outlive her. The videos were great and I watched them but she is not a child and I have to help without being in charge any more and somehow manage my own emotions. 


  • steve51
    steve51 Member Posts: 7,153 Disability Gamechanger
    Hi @FionaA

    Good Evening & Welcome along to our Online Community/Family.

    I have looked on Google for some info & advice.

    There are a number of very good looking sites with very helpful info that I have come across.

    Please please let me know if there’s anything else that I can help you with??????
  • FionaA
    FionaA Member Posts: 15 Connected
    Hi Steve51

    Thank you for putting so much effort in to your reply. It is really appreciated. The links absolutely describe everything that has happened to my girl and indeed the emotional impact of discovering you are not clumsy or inattentive you were having a myoclonic jerk, or a series of them ga0enes to her.

     My girl is one of the unlucky ones and now 11 years in is sharing with her friends that her meds are losing effectiveness and her life is now dominated by managing her condition. This happens in a small percentage of people with JME and has been confirmed by her consultant that she is one of the unlucky ones and only lifestyle changes are going to help improve quality of life.

    I guess I personally joined the forum to see if there were other parents in similar situations I could share with. There are so many emotions and practical things to take care of when your adult child suddenly can't do it anymore.

    Then there's the rage at the world and the terror that you will not be good enough to take care of the future. It's like being a bit nuts and no one who has not walked the path understands. To be a good mother I have to suppress all my emotions to make space for hers and of course in parallel earn the money to keep her for the rest of her life. As a human I fear I will break and then she will have no one.

    Sounds extreme I know, so if anyone reads this please be very careful if you respond to tell me I shouldn't feel this way. The fact is i am being very open and honest and make myself vulnerable by doing so. There is no should or shouldn't, there is only 'this is how I feel' please respect that.

    Enough already, thanks for listening!!!!!! Fi
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Hi @FionaA, thank you so much for sharing this with us. It's evident from your post that you only have your daughter's best interests at heart, and I'm so sorry that you're both experiencing this. 

    I hope at the very least you find comfort in being a part of the online community- I'm sure many of our members will be able to relate or empathise with your post, and I've also passed this on to the Twitter community, in the hope that others will be along to offer support and encouragement.

    In the meantime, are you getting any support as a carer? Carers UK are a wonderful organisation who may be able to help- it's so important to look after yourself too! All the best to you both, and please do keep us updated.
  • FionaA
    FionaA Member Posts: 15 Connected
    Thanks Pippa and the short answer is not quite yet asking for the help. We are walking it together and right here right now it's a little bit too much for her as she still operates independently. I will looked at Carers UK though thanks for that, never heard of them. Fixxx


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