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We have been referred to hospice-at-home and they are coming today.
Is this the same as Macmillans or different?
Im hoping they will support me and the kids too, aswell as supporting my dh?
Does anyone have any experience of this?
I don't know, OP. I don't have the experience (in the UK. In the States years ago, yes).
Just wanted to send you hugs, , and bump your thread. You'll get more answers I am sure.
But definitely your referring GP will help answer this question.
We were referred by the oncologist as our GP is worse than useless and we havent seen him in over a year.....
So sorry you are going through this Ludoole
I am not sure, but think'the hospice-at-home may be nurses that originate from your local hospice. I have a friend who is an 'end of life' nurse and she is based at our local hospice, but take care of patients in their own homes.
I hope you have had the visit and that the service is what you and all your family need. My understanding is the same as Pesto's.
But it seems that care varies according to region. My dad is in end of life care at home. His GP visits once a week at the moment and gets the district nurses to visit too if needed. My dad hasn't been to the hospital for over a year, his oncologist hasn't been involved since treatment stopped.
If this goes like with my mum then as dad needs more and more personal care then carers will visit up to 4 times a day for washing/toileting etc. The district nurse will come once a day to reload the syringe driver and will order equipment as needed. We did have a Macmillan -type nurse attached to our GP's surgery but although we got the impression that she was available to all of us she didn't in fact contribute much. Unless she was advising others behind the scene.
If your hospice at home service is like the people from our local hospice then that sounds brilliant. Their expertise was used by our GP in making decisions and in prescribing, and they were fabulous: expert and caring, when my MIL used their in-house service.
Thinking of you, all the best
I used to work in a children's hospice we provided care at home or in the hospice and we cared for the person and their family. We had access to various therapies that families might find useful and to counsellors, we provided care before and for the year after death. We had carer groups and sibling groups, I don't have direct experience of adult hospices but would imagine it is very similar. I hope you have had your visit and had some answers, thinking of you all.
Hi ludoole my Dad has excellent hospice at home nurses.they came out to him before he really needed them now when he is ill they visit and can do various things incl liasing with the gps and getting prescriptions through asap.Mum who also battles cancer can call them in the night if Dad is ill which is a huge reassurance as they can give advice or go to their home.Dad has filled in end of life wishes and meds he will or wont have and can discuss things with them.they are experts in pain relief and anti nausea medication.
My lovely mum was cared for by Myton Hospice at home. She became ill unexpectedly and quickly and was terrified of dying in hospital. With the help of Myton we got her home. She was comfortable and as happy as she could be.
It was killing my dad too looking after her. They looked after him too. During and after her illness, the helped at the end when she was gone. They came out four times a day and would have been there over night if my dad had have wanted them.
Thanks to them we had the comfort that we did as she wanted, we got her home. It would not have been possible with out the hospice at home tea.
I'm sorry for your husband's illness, but hospice at home help make the inevitable bearable for the person who is ill and the family.
Love to your family at a difficult time.
Thank you to all who replied and those of you who shared their experiences
The nurse came and was very thorough when she drew up his action plan.
She asked a lot of questions about me and the kids and said they were here to support us too. It was a relief to hear that as nobody ever asks how the boys are handling seeing him deteriorate.
Im feeling quite positive at the moment about having them on board
even though it makes everything real I was so angry yesterday at this whole situation and i felt so incredibly alone that i reverted to a behaviour i had stopped over 20 years ago. I was so angry i cut myself to see if i could release some of the pain... im not proud of it and hopefully having some real life support will stop the anger building so high again.
Ive given myself a good talking too and i know i need to be in control to get my husband and my boys through this. I cant fall otherwise everything falls.
Thank you again
Hi ludoole is it worth a visit to your GP to discuss your self harm, I can understand in your situation why you would feel like this but you need to look after yourself as well. You do need to be strong your dh and ds need you and you are in an awful situation where everything rests on you.
I hope you find the strength you need, it's good you acknowledge your feelings can you speak to the nurses. I imagine your feelings are normal in your situation. Stay strong.
Lilybensmum I hate my gp with a passion and rarely go. That incident was a one off and i have no desire to revisit it again! I will have to watch for the signs and address the stress before it takes me to that place again. Its just been a hard week with hospice getting involved and we are looking to also place my dad (late stage alzheimers) in a care home.
However tomorrow is another day and a fresh start
I hope today finds your strength renewed, Ludoole. Following your posts about your and DH's situation over some time, I've been impressed by your grace, fortitude and humour. As they used to say back in the day, keep on keeping on.
Ludoole you aren't superhuman, you need some support for you.
I am speaking as someone in a v similar situation. Have you got a good friend in RL? Can someone take the children for a few hours? Especially with half term coming up.
There is a danger that you will end up juggling all the balls and that's immense pressure to keep everything together. Please find an outlet.
And keep posting here x
Ludoole, just wanted to know I am thinking of you, your DH and your boys. Hope you are coping ok.
I hope the hospice at home plan can start as soon as you need it. Can you have district nurses to draw up med plans etc? Might be good to know who your local team are, they are good at getting any equipment and liaising with GP and see if you can have a Mac nurse.
Does hospice at home have a children's worker? If not then mac nurse will know someone who can advise about the children.
My DH had home carers along with district nurses and a Mac nurse, his carers were through an agency, it was fully funded as I was also caring for our children who have autism..
Ludoole, please remember these people are there as much for you as your DH.
Lean on them if you need to - it's what they're there for. Don't be afraid or embarrassed to ask for the help that you need.
Dealing with someone dying at home is very difficult as it brings up a whole gamut of emotions.
Sending you strength and peace.
Oh, and, have you discussed the 'yellow folder' or whatever it is called in your area?
Basically it covers what a person wishes in the event of an incident such as a cardiac arrest. Sorry to mention this, but my uncle was unaware of the wishes of my aunt, and it was very upsetting for him. It might be helpful to you if you have talked about this. (Sorry, but I thought it might be something to think about.)
Thank you for your comments
Hospice at home nurses have sorted his meds and we are trying a gel pad to sit on. They have phoned everyday so far and are coming out next week to see the boys as they are on half term from school. We can call anytime which us reassuring.
At the moment though he has reduced pain and it is making our time together happier
So good to see progress has been made about your DH's comfort and, by extension, your own. The ready contact with the hospice at home nurses must be so consoling, even if not used, to know it's there.
I'm so glad his pain is under control. It must be lovely to spend some good time together. And having that help whenever you need it must make you feel far less alone in this. Please use it whenever you feel it.
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