Palliative care at home for AML

Hi Jaheen and I am so sorry to hear about your dad.

Unfortunately I can’t answer your questions about Macmillan provision as I have no first hand experience .….. but I do know there are regional differences in end of life provision and it’s not only provided by Macmillan….. in the area where I was born there is no Macmillan provision.

You may benefit from joining and posting in our general……

Carers only 

Supporting someone with incurable cancer

……. support groups where you will connect with a wide range of members navigating the exact same support challenges.

You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides practical information, emotional support, benefits/financial guidance or just a listening ear.

((hugs))

Hi Jaheen,

I’m so sorry to read that your wonderfully brave dad is now on palliative care. Its such a difficult journey to navigate so remember to be kind to yourself. We didn’t have great support from our local macmillan service but were fortunate to be referred to our local Marie Curie service. They were invaluable to us. They visited 3 times a day and we were offered overnight support so my mum could sleep but we chose to manage the overnights between us both. We bought a baby monitor so we could hear Dad if he needed something. All of dads medication needs were managed by the GP rather than the hospital when he became a palliative care patient. If you haven’t already it might be worth contacting your gp to ask them to visit your dad at home where they can discuss his medication needs and setting up medication for “just in case” which provides anti sickness meds, morphine and meds to help with agitation. We quickly learnt through our AML journey that rarely do services get in touch with you and we had to chase to get the right support so my best advice would be to keep asking and ringing to get support for your dad and for you. Have been provided with a hospital bed for your dad? My dad was initially reluctant to have one at the home but soon said he was grateful as it meant he could be more comfortable. Sending love and hugs to you x  

Hi Jaheen 

I'm so sorry to read this. I know we've both posted on some other threads together and I've often thought of you.

I'm actually in a similar situation to you now too. Although dad is 82 with the FLt3 mutation. He's still taking Gilteritanib but just to slow things down. He didn't have a transplant and has still managed to keep going for 1 year 8 months at so far. 

He came home from hospital after his latest infection back on 26th July and we are now into palliative care. We aren't in a Macmillan catchment area so I can't help with what they offer I'm afraid. I can share what we have been offered though in case that helps...

Organised by the hospital - carers referral, district nurse referral, hospice referral, sent home with "just in case" medication and organised for the hospital bed and a few other bits so we could set him up in a downstairs room.

Medication - now renewed by the GP

Carers - we haven't actually needed them yet, but they can come up to 4 times a day

District nurse - comes every 2 weeks but can request more frequent. They have also sent an occupational therapist, who then organised a wheelchair. The district nurse can administer the "just in case" injectable pair relief and various other things. 

Hospice - have given us an allocated nurse, a 24 hour helpline and other aids to help dad (walking frames). We've agreed he will stay at home until the final 2 weeks when we'll try to get him into the hospice. 

If dad is showing new symptoms or we are worried about him we can either call the GP, the district nurse or the hospice. With the hospice being the best bet. 

It's such a horrible situation. If we can share anything to help each other that's all we can do.