Palliative care

Hello Jay190880

I'm so sorry to read your news, it must have been a shock for you all.

If you are not sure what palliative care can offer, and what support is available in your area, I'd suggest phoning the Macmillan helpline in the morning. They should be able to outline what help your mum can get, and how to put this in place. And offer you and your family support too! 

sending you a virtual hug!

xxx Kate

Not sure if this will help, but I read something very recently about palliative care (think it was from a palliative care nurse herself) which explained that palliative care doesn't mean the last few weeks or months caring for someone who is terminally ill, but rather the process of enabling that person to live their weeks or months or perhaps sometimes even longer, with good quality life. Not sure I've explained that properly but I hope you see the gist of what it was I read? In other words, they focus on helping the person to live, not just supporting them as they deteriorate.

I didn't know that - hadn't thought about that before. It seemed a very positive way of thinking about palliative care and I just wanted to share that with you in case it helps. As Puddock says, Macmillan will be able to give you a lot more detail on what palliative care means in general and also what it will involve specifically in your mum's case, as every individual has different needs and will be on a different path. 

Sending you lots of hugs 

My main concern is keeping my mum in her home ( her wishes) where my sister & brother want to put her into a care home against her will.

Can you look into Hospice care? I know hospices are reducing services and facilities these days due to lack of funding, but there is still hospice care available and this could be in your own home or in an actual hospice for respite. I am assuming that your mum isn't at this stage of need yet, but it doesn't hurt to start to research. Hospices are not like care homes. They are generally small homely places that help people make the most of living their life. Care homes, in my experience (and I have worked in a couple) are not designed for this, despite what they advertise in their brochures.

Palliative care, to me, implies someone staying in their own home and receiving appropriate treatment to mitigate pain and any other consequences of the cancer. I personally wouldn't say that a care home is the right place at any stage for your mum, as she will probably be surrounded by a lot of immobile elderly people, many of whom have some form of dementia. 

Stage 4 kidney cancer in itself is not a condition that is going to tolerate care home residency. You don't say how old your mum is but she may be still very active? both mentally and physically. There are people on these forums living pretty well with stage 4 cancers, sometimes two or more concurrently, and with tweaks to things like pain management and fatigue management, are living reasonably full and good quality lives. 

My mum is 74 & of sound mind, she made it clear to the doctors that she would like to stay in her own home & take her last breath in her own home too.

1. Hi my husband stayed at home , he wanted to die at home and that's what he did, the palative care team were amazing they sorted everything out for us . I wish my husband hadn't had treatment tbh , he was stage 4 he greatly suffered from the treatment he had and didn't enjoy the time he had as he was so ill from the treatment. I would phone palative care and get their advice as palative care doesant mean she's at the end as said previously said xxxxx

Oh my! She is young! (Well - to me she is! - I'm 65) I am so sorry. But Stage 4 doesn't necessarily mean she has a very short time left. Nobody can say, of course. But if she has determination and positivity, which it sounds like she has as she is stating her wishes in no uncertain terms, she won't let this diagnosis define her life. 

As Amerly below discovered, treatment is not necessarily the way to go anyway. Quality of life is more important than length of life. I never really understood that when I was young, but as I've got older I've learned this is so. Palliative care will give your mum good quality of life throughout. Another possible advantage of not taking treatment, is that your mum will maintain her alertness and ability to plan her future. She will likely have a lot of time left to organise what she needs to organise. This quality time is important, and not always possible if someone is undergoing treatment that is hard on the body and on the mind. 

It also of course gives you and your family the time to come to terms with what is happening to your mum, because this is such a major shock to you all. Be gentle with yourselves, because a diagnosis like this takes a lot out of not only the person diagnosed, but also all their family and friends. 

Sending you hugs 

It has been a battle, especially when my brother & sister wanted to put her into a care home, she told the GP under no circumstances she wants to go into a care home & he want to respect her wishes ( not my brother or sister), but the GP also said when things become unmanageable they can put her into a palliative care ward at our local hospital, but we now got a package in place, where carers will come in ect.

Fantastic! So glad you have got something more suitable in place.

I used to work in domiciliary care (not palliative specifically) and we had clients who were in their 90s and thriving because despite illness or disablement or simply old age, they were in their own home and had the carers coming in however many times were needed - sometimes three times a day, or for others, more or less frequently. Many of them wouldn't have coped in a care home and by being able to stay in their own home, they had good quality of life and were happy. It was wonderful to see this and to be a part of keeping them in their own home.