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End of Life Doula

(21 Posts)
grannyactivist Sun 22-Nov-15 01:04:46

I've said elsewhere that I'm the chaplain in a Care Home. It's part of my role to attend upon people who are dying and I'm comfortable with this, but as a champion of lifelong learning I'm wondering if I should go on a course that will (hopefully) equip me to carry out my role better.

So I've been thinking about this and wondered what people in general think about the idea of having a 'death doula'? Would you like someone to talk to about dying or your own death? Would you like someone outside of the family to help you through a relative's death?
www.lwdwtraining.uk/doulas/need-a-doula/

loopylou Sun 22-Nov-15 07:04:09

I think for many it could be really useful, our culture being reluctant to consider how you wish to be cared for at the end of your life let alone to discuss death and dying.
I'm comfortable with it but I know many who aren't, including my parents and siblings.

Nana3 Sun 22-Nov-15 07:46:48

My father died last Monday. I am the only one left to do the arrangements and every other thing, pension, bank, will, benefits, blue badge and on it goes.
Also my Mum went for respite care and I've arranged for her to stay permanently in the home because it's lovely and a relief for me. She is better cared for but keeps asking where Dad is and when can she go home.
She inherits so now will be above the threshold for funding for her care. Their house is full to bursting, they saved everything and I have to empty it and sell it, according to their social worker.
Dad's death in hospital was horrible, I have learnt from it and will do things differently for Mum.
Grannyactivist would the role you talk about help a family like us?
Everyone else fills in forms and disappears or gives me more things to do.
Dad's funeral is on Tuesday, Mum is going but might change her mind. I need her but her Altzeimers has taken her away.

Grannyknot Sun 22-Nov-15 08:23:55

nana flowers and hugs.

grannyA when my mother was dying from lung cancer and us three children were with her, as death approached, we were so busy helping her and making her comfortable, that my brother muttered "We're assisting at a birth". (He had done exactly that with his four children).

So I think a death doula is a good thing to be and have.

NfkDumpling Sun 22-Nov-15 08:31:49

Yes! An end of life doula is a wonderful idea - although I personally don't like the word doula - too much like dewbry, dolally - and foreign sounding. Until it comes into more general usage some may misunderstand what it is.

At a time when emotions are taut to breaking point having someone unrelated to bring guidance and calm is great. My mum's friend from her church fulfilled this role for me when she was dying and was a wonderful help and support.

NfkDumpling Sun 22-Nov-15 08:34:50

Sorry Nana3 - sticky iPad sent as I scrolled up so I dropped the flowers I was sending you!

Nana3 Sun 22-Nov-15 08:48:15

Thank you, lovely people. Feeling better now after off loading. Getting on with the day.

Luckygirl Sun 22-Nov-15 10:27:54

Nana3 - don't be hassled into rushing around at this sad time to get the house sorted and sold. SSD do not have a deadline by which you must sell the house, nor can they insist that you sell it below price for a quick sale. In fact you can ask for a legal charge to be put on the property so that the LA can recoup what is owed to them after your mother dies.

So - take all the time you need to deal with the immediate things, like the funeral, and giving yourself time to grieve and to gather your thoughts.
flowers

Luckygirl Sun 22-Nov-15 10:31:01

grannya - I too dislike the word doula - I don't know why.

I did not study the link in depth; but is this service something that recipients have to pay for?

I do think that there is a place for someone to hold your hand through the emotional and practical mayhem that leads up to and follows a death, so the idea in principle seems a sound one.

I think that humanist celebrants offer something similar if needed.

TriciaF Sun 22-Nov-15 11:26:08

I would rather have my family around me than a stranger.
And the word doula is too like douleur (pain) .

grannyactivist Sun 22-Nov-15 11:48:43

Thank you for your responses.
nana3 my condolences on the death of your father. Lucky's advice is very sound - don't be rushed into doing anything.
I understand the dislike of the word 'doula', it sounds unfamiliar and foreign, but the alternative is something like 'end of life practitioner', which I think sounds infinitely worse - cold and clinical.
Some doulas do charge Lucky, although I imagine it would be hard to make a living from it - the cost of the training overall would be something in the region of £2500 when taking into account travel and accommodation costs. I was planning to pay for the training myself, but have just had the thought that there might a be a trust that would give me a grant towards it as I would not be charging for my services.
I think I really would benefit from the training, which means that those people who do want my services will also benefit.

phoenix Sun 22-Nov-15 14:43:23

An excellent idea ga and I think you would be wonderful in that role.

Luckygirl Sun 22-Nov-15 14:45:54

Yes, I agree - it sounds as though it is tailor-made for ga.

M0nica Sun 22-Nov-15 18:40:39

I would like to die with my family around me, or alone. I would not want an outside facilitator with me. I am quite comfortable with the thought of death and dying and have no problems talking about it with my family.

durhamjen Sun 22-Nov-15 18:55:14

When my husband was dying we had help from a charity called Lifespan.
One of their members came round and massaged his feet and occasionally his shoulders. She was here for the family as well, and in fact came for the next year to let us talk and relax.
Sometimes it's useful to have someone from outside the family to talk to, so I say go for it, grannyactivist. I agree about the name, though, although I would not know what else to suggest.
How about doing a course in hand massage or something like that, unless you are already qualified in that.
It's easier for others to talk about death if you are doing something else at the same time.

janeainsworth Sun 22-Nov-15 18:55:31

I feel the same M0nica.

Ga I posted a link the other day to a radio 4 programme (One to One)where the consultant in Palliative Care at Newcastle, Kathryn Mannix, was talking about how nowadays most of us are unaware of the process of dying because we simply haven't experienced the death of loved ones in the same way and with the same frequency that people did in the Victorian era, when many people were nursed at home by their own families. She talked about many other aspects of end of life care too. Worth a listen.

I looked at your link and I did wonder about the organisation. Perhaps you could approach your local NHS Palliative Care Service or Marie Curie and see if they would provide any training for you.

Nana3 Sun 22-Nov-15 19:38:13

Macmillan Nurses were named after the founder of their charity. Is there an idea there for you granny? Your name, or a name of your choice, followed by a word like care or helper or friend, something like that.

grannyactivist Sun 22-Nov-15 22:47:57

janeainsworth, I am actively seeking out other providers of End of Life training so that I can compare what's on offer and what will best fit my learning style.
The more I've looked into it the more I realise that such training will enable be to be more effective in my role and so the decision is made - now it's just a case of where and when. (And how much it costs.)

Nana3 Mon 23-Nov-15 08:44:23

Dear Grannyactivist, sorry for my last post as you are not looking for a name, I got drawn in to other comments. I wish you all the best in your serious search for the right training. I would have and still do need someone to have been with my mum, my dad and me when he died.

deaneke Fri 01-Jan-16 22:05:07

There was an article about this some months ago on Woman's Hour. It sounds a great idea. Go for it!

Luckygirl Fri 01-Jan-16 22:17:50

The only proviso I would add is that it would be vital that the person employed was someone that everyone got on with. It would be awful to have someone hovering about if you did not warm to them. It is a one-off occasion - you can't go back and do it again!