The tricky subject of dying

[Rafaina]

I really recommend ‘With the End in Mind : Dying, Death and Wisdom in an Age of Denial’ by Kathryn Mannix. She is a former palliative care consultant and I think this book should be read by everyone. It really made me think and mentally prepare for dealing with death - of my elderly parent, my partner with MSA and my own death and dying process whenever whenever they may happen.

I think it gives real comfort and can help conversations around death.

She says less treatment doesn’t mean less care. It should mean more. She also urges medical staff to speak about ‘sick enough to die’ with patients and families so people are not left in any doubt. It’s also up to us to ask these questions for clarity and to help prepare for death.

I understand that this is a difficult subject but as Dr Mannix says we prepare for birth so why don’t we prepare for death?

[Hellebelle]

Agree completely! I have always said that there is so much preparation at the beginning and so little at the end. Thank you so much for the recommendation I will read it as we are expecting that my dad is approaching end of life. Helen x

[FredaE]

After my husband died I became of vounteer at our wonderful local hospice. All volunteers who wre likely to meet patients or their families, when they walked in the garden for instance, were given basic training in how to talk and how to behave with people so closely invilved with dying. It was such a help and meant that we were at ease with the patients and not embarassed. It sounds as if this book will be helpful in the same way.

[TK-67]

by chance I found this post - I'm thankful as a family we've always talked about death, we've been so unlucky with losing children and it's forced discussions about quality of life. You never realise how important these discussions are until you find yourself there with a loved on. My dad was diagnosed with an advanced brain tumour and lost communication very quickly - but because we'd talked about it, it was straightforward and far less stressful in making decisions about what the end of his life should be - thanks to an amazing hospice team this was achieved.

And now with mum and her MSA we're able to have those conversations with the nursing home, GP, consultant and hospice and she has a very detailed DNR about what is acceptable, it's provoked some questions over the last month, but we're all totally in support of what is her plan around the quality of life that she has. We also have a LPA (health and welfare) so we can support her wishes and now a plan put together by us, the nursing home and hospice for her final weeks.

It also means that when the time comes we can concentrate on being with her knowing that as a family we don't have the stress of decisions.

I have the conversation with friends about talking about death, I've experienced more than most but the one thing that kept us going through very dark times was the principle of quality of life and a plan for the end. For us death sadly has been a big part of our lives but something I would always like to think we've done as well as the happier times.

[Rafaina in reply to TK-67]

Hi Trudy - sorry to hear about all your family trauma.

We still need to have discussions at some point around some of the issues you refer to.

The book I mentioned has helped me a lot and I feel we are able to talk about most things quite openly. It is helpful for the wider family too. I also agree that if you have plans in place you can concentrate on living and quality of life rather than worrying about what to do etc.