Palliative care at home, what don't I know I don't know

Gently, I would consider if home is right for her, or indeed for your dad. It sounds like you're looking at weeks -months rather than days. If you can afford to arrange a live in carer so someone is always there then you might be ok, but I would worry about the strain on dad otherwise. Because she will want something doing when there is not a carer there and your dad is going to try and do it. And those something's will get harder and bigger. I was a relatively fit 39 year old woman and my mum was in her 60s, and the physical toll it took on us was hard, and we had each other. Also my dad was a man who would never have wanted to put strain on us, but his illness effected his cognition so he would make completely unreasonable demands without realising it was unreasonable. He had a brain tumour, it was not his fault. But dying itself, regardless of the cause, can cause cognitive issues, so simply relying on "well mum wouldn't ask that if dad" might not be enough.

Remember it can be a dynamic situation, try home if that's what mum and dad want, but if it's not working be prepared to change paths.

About three weeks ago, I was told my cancer had returned and metastasised. The oncologist said, as a guess, I could have 6-12 months left. Hospice at Home comes in right at the end for a maximum of 12 weeks. Prior to that, any extra help has to come from Adult Social Care, or obviously I can pay directly for any extra help I need. I already have a care package for an existing disability, so am now waiting for a reassessment.

Does she have a spare bedroom and enough funds for a live- in career at some stage? We coped with hourly care visits for a while, but eventually moved to a live in career, which worked well for us. I was a similar distance away from my parents as you are and it helped me a lot. It wasn't cheap, but was less than care home fees for both parents.

Who looks after you? Good question. I was given a 2 hour counselling session under a local authority scheme to care for carers. But otherwise . . .

Hospice at home poss best route. They moved furniture for us. Got a hospital bed in downstairs. Were absolutely brilliant. We were in Devon so I’m sure it must vary around the country.

Also, contact the local Hospice. Ours have a Hospice at Home service and they have a team who can come and assess needs and get things organised. They can help support you too.

Sorry you're going through this. You appear to want practical information so I will try to answer practically. Am I too understand mum is currently in a hospital and will be discharged for palliative care?

The first thing to consider is palliative care means different things to different people. Is your mum in her final days or is she still alert/talking/eating and drinking bit ultimately has a condition that can not be medically treated in any other way than getting her home and keeping her comfortable for whatever time she has left? Both of those patients you be considered to be palliative but the timeline and therefore what to expect is different.

The answers somewhat probably depends on area and how things are funded in your area but I'll tell you how things went for us.

1. we had someone come to the house to assess what was needed to get dad home (equipment, hospital bed etc). They said that they could arrange people to help us clear the dining room but actually we did it. It was just quicker.
2. in terms of funding, has an SR1 been completed? This fast tracks applications for certain benefits. Not all benefits are means tested.and you may well find you are entitled to some contributions. Generally though if you were fully self unding you would be funding the personal care. But medical professionals eg district nurses coming in to administration end of life medications when needed is the NHS 3)Once care and equipment in place patients get home straight away. The hospital will arrange a transport ambulance. We found everything happened in a couple of date once the decision was made
3. the all about me tends to be done by the care company.
4. the whole family approach is interesting. We ended up having to transfer to hospice as symptoms could not be controlled at home. At hospice there was absolutely a whole family approach, they really looked after all of us in dad's final days and I am still receiving ongoing support now. At home though I can honestly say that mum and I were not given much support. It's no one's fault, ultimately the nurses were coming in but they had other patients to get too. We weren't the sick ones.. there was the odd nurse that would check in that we were managing but it wasn't usual
5. who is going to look after you: I found nobody did. The final months of dads life involved me trying to work, looks after the kids, liaise with doctors, support mum, provide care for dad which became increasingly hard... It was a treadmill and very traumatic. My personality means I just sort of kept going. We all lived together. McMillan do offer a support phone line for family. I called it once but didn't know what to say so didn't really say anything. Likewise the local hospice has a family support service. I did engage with them after dad died and am still receiving their support now 9 months on. I should have reached out sooner, and that would be my advice really. Ask for the support sooner. Your local hospice will be able to offer this even if mum is not in the hospice.

Again I'm sorry you're going through this. Caring for a parent in their final illness is hard. Hard seems like an understatement to be honest but I can't find a better word. Much love.

Be aware palliative care can last a long time. It doesn't necessarily mean that the end is imminent, it could mean keeping comfortable and I've known that last a surprisingly long time. With a work colleague it was nearly 18 months. Make sure you understand the prognosis is and be prepared for it to last a lot longer.

Get referral to Community Palliative Team if she is going home. They will come and assess, can fast track application for CHC if needed, liaise with GP for what prescriptions needed. Supply and administer end of life drugs and are always at the end of the phone. Get a clearance company to move the furniture, Community palliative team in my area have their own OT who will order Hospital bed, equipment etc quickly if you make space. Work with them if you can. Palliative is meant to be 3 -6 months I think, my mum was under them twice as first time she pulled back. continence pads they come from a different team and will be delivered in bulk. We had lots of deliveries and If dad is not able to manage you might need key safe.

I am not the best qualified to answer your questions, however, having looked into this for my mum: DO NOT take her home without written confirmation of everyone else's role. If services can get out of paying, they will and you'll be left picking up the pieces in every way.

It is such a difficult time, I am sorry. Are you sure home is best for her? If she's going home to your dad, he's going to be doing a huge amount of the heavy lifting (in both senses) and 2 hours is a very long drive if you get a panicked call. You will end up torn between unwell DD, elderly father, ill mother and then resentful if your brother does not step up.

If you literally just found out mum is near the end, I would suggest you get more information about her condition and any treatment plans and give yourself time to process this before making big decisions.