Private nursing as Macmillan not as helpful as hoped...

[Anonymum40]

We found out only last week that my dear old dad has leukaemia and only weeks to live. He wants to stay at home as long as possible - and ideally die there too. We've been warned that with his impaired immunity he would very likely die very quickly from picking up an infection in hospital.

My mum is looking after him but she is 80 and getting exhausted. My sister and I are visiting on alternate days to make sure they are coping, but we had great hopes for Macmillan. We had to wait a week for a nurse to visit and now she's been we have to wait another week for her to come again which isn't quite what we had hoped for. She apparently has 45 other patients to tend to.

So, any recommendations for private nursing organisations? And what is their scope? And what do they cost? All advice very gratefully received... thanks x

I hope you are coping OP. Thank you for starting this thread as it is helping lots of other families

Thanks everyone for your advice and guidance in this.
We're at a stage now where his anti nausea medication went wrong and he's very ill and very dehydrated. My sister and I are there around the clock. District nurse cover has been patchy, we keep having to leave messages on answer machines and then waiting ages for responses when things are desperate. We're going to start pushing for him to be a priority for the hospice to admit as we can't cope. It's been horrendous.

This is actually what pisses me of re. Macmillan, and to an extent other cancer charities

The reality is end of life care is horrifically underfunded. There is simply no capacity and terminal patients are almost triaged as to who needs care most.

Most people believe this is what macmillan do. And they have enormous funds which are used to care for cancer patients. And a vast amount of funding is diverted in to the glorified pink “battles” and fun runs “curing” cancer.

It’s shit op. But anyone reading this if you are donating or fundraising, please do it for your local hospice.

OP I'm so sorry to hear that things are difficult and you're not getting the support that you need. Has he got a package of care yet? Please please ask him to be fast tracked for CHC funding if not. I hope they can get him into a hospice soon.

Update...
I don't want to distress anyone else with this as a prospect, but my advice would be to get your care package fast tracked as soon as you can. My dad went downhill so fast and we got trapped on a bank holiday weekend with a dying man and NO CARE whatsoever. They installed a syringe driver (that too ages to organise too but that's another story), then told us he would be too drowsy to get up to the loo and we would have to haul him on to the commode (which my dad had always been resolutely against) or else change nappies. And then they left and said they'd be back in 24 hours.

I called all the nursing agencies and they were all shut till Tuesday. So I went to the hospice and begged. And cried. And magically a bed became available. We were all so relieved.

So now he's proper dying. It could even happen today. This time last week he was sat in our garden chatting. It's grim. But don't end up high and dry like we were, it was horrendous.

Oh bless you. I'm so pleased he's in a hospice now. Hope he's comfortable and peaceful. Sending strength to you and your family xx

OP, I feel so much for you. I hope your Dad has a peaceful end in hospice. I'm going through the exact same thing myself with my lovely Mum. Not at hospice yet and syringe driver ready at home for when needed (which will be soon, she can barely sit up). She's so fed up and just wants out now.
Thanks for sharing your experience on here

I’m so sorry to hear this op. This was very similar to my experience with my mum. We are all led to believe there is good end of life home care in the UK but it does seem like it’s very hit and miss. I hope your dads days at the hospice are peaceful.

Thank you for your messages. My dear dad died peacefully in the early hours of yesterday morning. Thank goodness we got him into the hospice when we did, his decline was so rapid we'd have felt like we killed him if he hadn't been there.

The hospice was an amazing place. It takes all the stress of the medical care away and allows you to have proper quality time with your loved one. At home we were almost scared of him, but at the hospice we could sit at his bedside and hold his hand and talk to him despite him being barely conscious. I will always be grateful for that.

My thoughts go out to anyone going through this. It's so hard.

Such a difficult time for you and your family op.

Having worked for a care agency OP, I now hold the view that being at home is a lovely idea but the reality is very very different for both patient and relatives. It only works if you have a well co-ordinated team around you and personal experience of that was rare... very rare.

I am glad you found a hospice place for your Dad, and I'm so sorry for your loss

So sorry for your loss op. I’m so glad you were able to have some peaceful time with your dad before he passed.

So sorry for your loss OP.