Don't know where to turn

My daughter who is 21 was diagnosed with terminal cancer 2 years ago. It has been a roller coaster few years basically she developed anorexia as a way of trying to control things and now weighs half of what she should at 25kg. She isn't able to have any further treatment just pain management.She was admitted to hospital at the beginning of Dec. Last year and we were told to expect the worse. Since then she has improved enough to be deemed not to be an inpatient as she's not receiving treatment. However her deteriation physically and side effects from medication means she sleeps most of the time and is unable to stand unaided or walk any distance. She has to be taken to the toilet in a wheelchair. The problem we face (as if terminal cancer isn't enough) is she's deemed too "healthy" to be kept in hospital, we don't have the facilities to accommodate her at home she was previously sharing a room on the 3rd floor of a 3 storey house with her 16 year old sister. Even if we juggled rooms so she had a room to herself all the bedrooms the bathroom are on the top floor. We have been told she can be brought back from hospital and transported to this room but there is no option for her to leave. We have contacted the local council about adapting the house for her but as she is terminal and may not live long enough they aren't willing to help with adaptations. However because she "may" live longer than a few months she can't be discharged to a hospice. The hospital now say she will be classed as homeless if we cant bring her home. I feel so lost as nobody seems to have an answer Is there really no options?? Another thing they said is if she was older there would be more options but due to her age there are no other facilities that could accommodate her. Sorry for the long post just feel at my wits end. 

  • Hello Denise,

    I remember you from before, thank you so so much for getting in touch again. It really has been a roller-coaster few years and it seems so long ago we were in contact but at the same time it's gone by in a flash. I have been in touch with one of the palliative team this morning who is going to come and try and help us. Thank you again, it really is such a relief just hearing from other people and seeing I'm not as alone as I feel at times. I did worry I came across as a bit of a ranting idiot x


  • Hi Oddone,

    I hope that your palliative care specialist was able to help you this morning.

    We had to resort to Facebook Funding for a relative in a similar situation last year. We also ran a couple of funding events to raise the money for converting the house to get her home.

    This was something that we felt that we shouldn't have had to do when looking after a loved one at the same time. However it seemed to be our only option and, I'm pleased to say, that she is now home.

    Kind regards,

    Jolamine xx

  • Hi Oddone,

    Hoping you feel stronger and less helpless today.

    Don't ever think anyone would regard you as a ranting idiot, what you are going through is a parents worst nightmare. People on here will always be here for you. 

    Hope the chat with the palliative specialist goes well and you get some understanding and support. 

    Take care of y'self

    Denise.

     

  • Hi Oddone, 

    Just wondering if you've managed to get things sorted ? 

    Denise 

    xx

  • Hi, sorry I didn't update before after I posted jade took a massive turn for the worse. It was decided she wasn't well enough to be discharged after all .

    She passed away on Saturday afternoon 16th March I was with her at the end holding her hand and now she is no longer in pain. Thank you so much for everyones support and help xxx

  • Bless you, my sincere condolences. I'm glad you were with your precious daughter.

    Warm wishes, gamechabger

  •  

    Hi,

    I am so sorry to hear about your daughter Jade's passing and am sending you and your family my sincere condolences. I am glad to hear that you managed to be with her to the very end. You have been through something that no family should have to face and, I hope that you can support one another at this difficult time.

    I am now going to sound very insensitive and ask whether or not you got to talk with palliative care at all and, if so how you got on?  I don't mean to upset you in any way, so please forgive me. The reason I ask this is to know whether or not this is an area that needs funding, as it certainly sounded as if it might be from your previous posts.

    I know how it feels to lose a loved one to cancer and, know the relief that your precious daughter is no longer suffering and in pain, but I feel so deeply for your loss.

    My thoughts are with you all.

    Kind regards,

    Jolamine xx

  • I am so sorry to hear your sad news, please accept my sincere condolences. I am pleased to read you were able to be there with your daughter at the end, as you say she is now free from pain. 

    I hope you and the rest of the family can now take some time to be together and remember the happier days before your daughter became ill.

    Look after y'self

    Denise.

    xx