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Mums dying of a brain tumour

7 replies

Joterry68 · 21/05/2016 23:35

dying of a brain tumour and she is being cared for at home by me and my dad but I'm so worried about him, he is constantly checking on her at night nd not sleeping she is incontenebt and has a catheter the district nurses come nd wash her nd dress her nd I go round every night nd wash nd put her to bed but my dad is making silly mistakes coz he is exhausted but won't ask for help, he refuses to to put her into a hospice it's all just getting too much for the both of us and I don't know what to do for the best for them both! Any one gone through this nd could give advise I'd be greatful

OP posts:
indecisivedoctor · 21/05/2016 23:41

So sorry you're going through this. What support is there for you and your dad aside from district nurses? Is your mum known to the palliative care team? X

Woopsiedaisy · 21/05/2016 23:54

You should try and get a referral to the local Hospice (you can often self refer).

They may well have a Hospice at Home team who will provide the support you need to care for her at home. If they don't, most have support teams that will provide some elements of home care.

I know people often resist Hospice involvement because they assume it is an acknowledgement that the patient is in a palliative situation, but my experience is that the care they offer is amazing, supporting both patients and their families.

CocktailQueen · 21/05/2016 23:55

I second asking the hospice palliative care team for help at home. They are brilliant.

Hugs to you.

Joterry68 · 24/05/2016 19:29

Thank you guys I am looking into hospice care at home and it seems that can come out once a day to get mum washed and dressed, but they don't do a night visit! But as the nurses have said that mums tumour is very aggressive she may only be at home for another week before they have to take her into full hospice care for her final days! I tryied to tell my dad that she will get better care there than we can give by then but he is of a generation that has a total fear of the whole thing and won't talk about it! 😔

OP posts:
indecisivedoctor · 24/05/2016 22:40

No idea about your area OP but I know locally here Marie Curie can offer night assistance. Might be worth trying to look into.

My thoughts are with you. Can't imagine how hard this must be. X

veneeroftheweek · 27/05/2016 20:05

So sorry This is happening to you. My dad is at a similar stage to your mum by the sound of it, also with an aggressive brain tumour. He is eligible for Continuing Care which is funded by the NHS and means that carers come in three times a day. Does your mum have this as I would imagine she would also be eligible. He doesn't have night care at the moment but I believe this will be an option if needed.

veneeroftheweek · 31/05/2016 22:37

Just in case you are still reading this, or it's useful for someone else, we are now getting night time care for my dad too as part of his NHS care package. Good luck with everything. Flowers

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