Hello All
My name Is Chrissie, I live in the UK with my 2 x other cousins and we are trying between us to look after the older members of our family. My Aunt lives in the Bourges area of France and unfortunately has got to the point where she cannot handle any further treatment for her cancer which has spread. One of the consequences of her cancer is that she had to have her colon removed and now has a stoma bag in place.
We have travelled out twice recently, all amateurs really in the world of travel and not great at speaking the language, it has been a tough journey to try and overcome the challenges of knowing exactly what her prognosis is and trying to follow her wishes to remain in France and live at her own house.
She had the operation at Christmas time and has slowly been going downhill whilst in hospital to the point where we were told that we should take her home as this was her wish and that the end was close. To cut a long story short, her decline turns out was actually more down to the management of her stoma bag and how it was impacting her both emotionally and physically. As soon as we got her home - which was hard unfortunately we were let down by social care not having the right equipment in place to deal with her needs and we were very lucky to have our friend with us who is a retired stoma nurse who was able to problem solve during the weekend and managed to get her to a place where the leaky bag was going for 12 hours before needing changing.
My purpose here is not complain and rant as I know her situation is tricky to manage and we just want what is best for her wellbeing and for her to get the right end of life care. This is very difficult from a distance, unfortunately we all have responsibilities that we can't ignore to keep going out or to spend longer periods of time with her. She has been in France for about 40 years and this is where her life is, her husband died 2 years ago and I think he did most of her admin and managed their finances. She's aged in her 70s, speaks french and still has capacity -although there are times from what she says, that we arent 100percent sure. Anyhow its difficult as she's not told anyone who her NOK is and we are trying to help her with getting care in place so that she can be at home. She has paid into some health care insurance since being out there and we think that she has some savings which can be used for her care but we are having problems deciding what we can and cant do. She isn't being forthcoming with practical information - I think this might be down to her just getting to the point where she actualy doesnt know where anything is at her home and she is too poorly to get up and move around. She is telling us bank statements have been provided to social care with her bank details on via her neighbour but her neighbour tells me this is not the case.
i would be extremely grateful if anyone could provide me any guidance having had these difficult conversations with their own loved ones. We dont think the doctor has told her she is at the end of her life and we feel very awkward navigating this topic with her. We have not had much contact over the years - she's always been very independent and very capable, I think she remembers us as children and forgets that we are adults now. We've been trying to get the practical information from her as the care companies are asking for this but we are hitting brick walls with it. it took time and effort but we managed to get care in place via vitallence which one of the main care agencies, but this week we've been told that the night time carer doesn't want to do lates anymore and has left. Carers visit 3 times during the day and there is supposed to be someone with her overnight. For two nights running last week this didn't happen and now we are told this.
We are wondering whether a live in carer would be possible but I can't seem to find this as an option and social care certainly have not been able to find one. I have also been told that the french care system is very strict and so it would almost be impossible to find someone from the UK due to them needing French qualifications. Does anyone have any experience of this or recommendations' that they are willing to share please?
If we cant find care at home, Ive been told that the French do have Hospices but again searching the area I cant find any on google to make contact with. The Dr hasnt been very helpful and we felt very fobbed off when we tried to speak to her with google translate on our last visit 3 weeks ago. The complication seems to be the management of the stoma bag but here in the UK we have Community Stoma nurses I think. Apparently this is not the case in France but surely a carer in a care home or hospice could be taught on how to change the bag. Again our lack of knowledge in the French system is limiting us on us being able to make decisions as we do not know what our options are from here.
If anyone has any comments or knowledge in regards to helping us move forward, we would be really grateful. For our Aunt, returning to hospital is not something she wants to do, she is no longer having cancer treatment and the Stoma bag management there was not going well. She hated it and got very depressed so we are really trying to find a way that she can stay at home but also identifying what other options if we cant find the care for her.
Lastly I guess, although she would hate it, Does anyone have any experience of relocating their loved ones back to the UK and how we would go about doing this. She is bedridden so its not a case of us being able to transport her home I dont think ourselves. She would need an ambulance and Im not sure how she would even deal with that journey now :-(
If anyone can offer any words of wisdom, having had similar challenges then please do, I realise I have wrote a small essay here so many thanks as well for taking the time to read.
Chrissie
