Hi there
I have struggled with the concept of joining an online community for some issues that Im facing in trying to help my Aunt but I understand the value that online support brings - due to being a carer for my daughter who has brittle bones. I am in group with other parents of kids with OI.
Im still very emotionally fragile and trying to deal with my grief at knowing my aunt doesn't have long to live due to Cancer spreading at the same time as trying to switch off this emotion so that I can deal with the challenges that Im met with.
My Aunt has lived in France for the majority of her life with her husband - she was caring for him at home up to 2 years a go as he he had dementia but sadly we lost him. Since then she has been battling cancer and has had a few treatments causing her heavy sympton's and leading to her being in and out of hospital with various complications. The latest operation she had was in December to remove her colon due to cancer spreading and now she has a stoma bag.
My cousin was called recently to advise that the cancer had progressed and there were problems with her stoma bag leaking but we should take her home as it was her wishes, i think they thought the end was imminent. Social care only allowed this to happen as shes towards end of life and because we had our friend a retired stoma nurse with us for a couple of nights and he would be able to deal with the stoma bag - they could not provide a nurse in the time we were there.
it became very apparent to us, that her dip in life zest and fragility was directly linked to the stoma bag and its management. I don't think the locality hospital which she had been sent to had trained staff to deal with the bag. Our friend - a retired stoma nurse was appalled by the fact that she had skin burn around the stoma and the cause of the leak became evidence in that they were using the wrong bags. She was sent home with no stoma bags although they knew there were problems with the bag and we didn't even have a commode for her so had to make a DIY one from her garden furniture. The whole thing was a shambles but the only positives I can take from it are that we identified there was a problem in the care she was receiving at the hospital, that she got to be home for a couple of hours where she totally changed and became stronger and that the Stoma bag was functioning with the right equipment use.
All she wants is to be at home to live out her last days, week, months... whatever time she has left. it appears there is no Stoma nurse available in the community and we've been told, even if she agreed to go into a hospice type equivalent, she would still need to go to the hospital for the bag to be dealt with. I find this really hard to believe. Social care are giving us mixed messages saying she needs someone medically trained at night however their provisions only provide a night time carer who would call a number to get help with the bag, but they do not have anyone they can use. My aunt basically needs a full time live in carer to be with her but they cant seem to source this. I feel so torn as I have been out there for the past week and want to help her, but I also have my own young family to take care of and I cant leave them for long periods of time. We have our own issues that we are managing here, alongside my work demands Im struggling and although I try to be resilient - this is becoming an impossible challenge to sort out.
The best case scenario would be for her to return to the Uk i think, although I totally understand why she wants to just go home to her french home. Its so hard as we are trying to make decisions on limited medical information and around our own commitments. She has a house 10 minutes drive from me in England and with the right social care involved i think she would be comfortable but its not what she wants.
Apologies for the long read- I thought some concept of the context would help. Just hoping that someone might be able to comment / advise from their own experiences. My aunts needs is very clear and she has made it clear, but we cant seem to get her there. She doesnt seem to grasp the effects and implications on us from all of the travelling out to see her and sort this out. I wish we could just make the decision ourself and bring her home but we cant force her. She was so happy being at home with us present, I wish we could be there for her until the end but we just cant whilst she is in France. We don't know where to turn and are just forever waiting on social care to come back and say they can put carers in place full time but it doesn't seem to be happening. The longer she is in hospital, the quicker she will get depressed again, stop eating and go downhill.
Any feedback Id be very grateful for, if anyone has any suggestions of how to progress this. We thought about trying to appoint a private carer from England but it appears this is illegal as the French will only recognize their own countries qualifications. We also have not been passed details of her medical insurance which I believe that the Drs should have access to as she wouldve paid for her cancer treatment through this. She has always been very private and has kept her affairs to herself, we dont even know if she has a will and where it is. It has been very difficult to get the practical answers we need to help us as we also do not want to upset her. She has friends and the support from them but I dont think she's taken any other support since she was diagnosed :-(
Hi DreamyStar
I can only imagine the difficulties you are having though I think some could share not entirely similar tales of trying to find care in the the UK, the link between the NHS and social care often being a source of some frustration.
I wonder if it might help to post in our Living with cancer outside the UK forum as there may be some with experience there.
<<hugs>>
Steve
Hello, Thank you for your reply and sharing your experience, this has given me some further things to check as I don't think we even have a ALD certificate. I also don't know whether the Dr we spoke to at the hospital that she was in, was her oncologist or whether it was just the ward Dr so I will look into this.
She is at home now with Carers visiting but its not working, she keeps being left alone and we are paying for a service that is not being provided. She wanted to go home in France, so that is what we requested to do via the Social worker whom put the carers in place. She is very stubborn and wasn't entertaining any of our other suggestions. Its hard to make decisions going forward, especially if they are against her will 
I wish I was able to be out there with her but I cant abandon my mum responsibilities with two young children to look after , I cant keep abandoning them as we have things going on here in England that I have to manage. Anyhow, your feedback has been greatly received, thank you very much. May I ask - Do you know if the oncologist gives an idea to their patient on their outlook and time left? Someone told us that they dont do this which I find hard to believe. She is so private with her feelings, she has barely spoken openly to me and my cousins about her cancer - just to say that the last treatment hadnt worked. She has always been an emotionally closed book and just gets on with things. Do you think her oncologist would talk to us? She has no next of kin and we are the only family to help support her through this.
I hope you are doing ok and that Life is treating you more kindly after such a hard time. New chapters are always a bit difficult to navigate at the beginning, especially after suffering a close loss.
