My mother who’s 81 has been living with polysythemia Vera , which turned into myeloid fibrosis and acute myeloid leukaemia . Currently in hospital , same hospital and ward she was on last December 2023 so she is a fighter ! Sadly , her platelets are at 19 , severe bleeding from nose and throat and what seems like a week ago to now , a different person , constantly tired , to a point falling asleep eating soup , bless her . She says she has had enough , my brother and I would like her to be comfortable and in as less pain as possible but is a hospice better than a hospital ? My head is accepting that she is nearing the end , my heart on the other hand not so much . I hate to see her suffering . What has any one in this situation thought is best ?
Oh @Lou81966 I cannot imagine how you and your brother are feeling at the moment, although you describe it so well, but I am so glad that you have found us.
You ask such an emotive question and all others can do is share their particular experiences in their circumstances.
You say your mother is a fighter, but perhaps I am getting the feeling that this situation is different to last years, I might be wrong…
Firstly, and so hard I know, but has your mother made her wishes known to her medical team and have you and your brother had an honest talk with them too, perhaps if your mother wants it you might all talk together.
Then it depends on the services within her/your area and their availability.
In some cases palliative nurses will help with home care facilities.
I agree hospitals are usually not best placed for palliative care.
We are here as a sounding board or a place where you can say how it really is for you and so is the Blood Cancer UK support line on 0808 2080 888.
Please try and really look after yourselves and keep posting. xx
Hi @Lou81966
Welcome to the forum, although I’m so sorry to read the reason you have joined us. I hope you find it a supportive place at this difficult time.
@Erica makes some good suggestions - it’s good to talk to her medical team with her there too, if at all possible. We would say that if your mother is still in the hospital to talk to the charge nurse or haematology team. They can help connect you with the right people so that your Mum can go into a hospice if that is indeed what’s needed.
If she has left hospital, her GP can also connect you with community nurses and help you to arrange any palliative care.
Some other information and support that may help you:
Information and Support | Hospice UK
Marie Curie: https://www.mariecurie.org.uk/help/support/being-there
It is one of the hardest times for you, so please do take good care of yourself and know that we’re here if you need.
Warmest wishes,
Ali
Thank you so much for your kind responses . I have spoken with all the relevant people , drs , care teams and thankfully they have accepted her at a hospice not too far from us , so that we can visit easily and as a plus she has constant care in a lovely environment . Really appreciate your kind words . Louise wilkins
Oh @Lou81966 that is brilliant news and I hope your mum settles in well.
Please do look after yourself as well as you are your mum and keep posting as I look forward to hearing more about you all.
Thank you . It’s so nice to receive advice , and be able to share , you helped me so much and in turn my mother , who now has flu , on top of everything else ! Taking one day at a time , which is all we can do . Kindest regards , louise
Hi @Lou81966 yes, one day at a time is a good philosophy.
Be kind to yourself as well and please do keep posting
Hi @Lou81966
Oh I’m so sorry to hear she has flu as well now - how horrid on top of it all. Taking it one day at a time definitely sounds like a good approach, and just try and take some time out for you if you can too. Even if it’s a five minute sit down with a cup of tea.
Sending warm wishes to you all,
Ali
Hi @Lou81966
I’m really sorry to hear about your mum. I can relate. My 82 year old dad passed away from Acute myeloid leukaemia (AML) in September this year. I won’t give you advice, but I will share my experience.
Like your mum my dad was in hospital. In his case for a series of infections. He’d managed being in hospital ok before, but this time it was different. He needed IV antibiotics, but the combination of them and the other drugs were making him hallucinate. The whole thing was very traumatic. So the doctors allowed him home with oral antibiotics and an agreement that he wouldn’t be re-admitted. He wasn’t “actively dying” as they put it, at that point but we knew we were looking at weeks/months.
We brought him home and he was a changed person. Still very physically weak, but mentally a million times better. We had a hospital bed and other supporting paraphernalia, plus a district nurse visiting regularly. He even got out of bed and raided the fridge for jelly at 1am one night.
Six weeks later he deteriorated rapidly. We had planned on getting him into a hospice and had prepared everything for that, but he had other ideas and decided he’d had enough before we could move him. What we did have during the last few days, which was invaluable, was hospice at home. They were able to administer pain and agitation relief. In the end dad was comfortable and we had the support to cope too.
There isn’t a right or wrong way of doing this. And your plans may completely fall through. But that’s ok. Remember you can only deal with each day as it comes. You can’t predict what will happen or how. Just make sure you give yourself time to be emotional with them and not just practical …that’s my only regret. I guess I did end up giving you advice …