End of life care at home ? Is it too much ?

[FishersGate]

Mil health has deteriorated to the extent that Dr's have now asked DH and SIL about the next steps from leaving hospital . She hasn't been eating for over 4 weeks, her mobility has gone. Dr's and physio have stated her mental health is very poor and she's given up. She has a heart condition however last week Dr's were saying that with nutrition and mobility she could go home. She has cancer but not aggressive and has a stoma following op.

However mentally she keeps stating,she can't do it, she's had enough etc refusing to eat, doesn't want to eat. Won't move in bed or try to move out of bed with assistance. She is being tube fed nutrients and is on oxygen as fluid on her lungs. In part due to lack of mobility. She is now very frail and spends large amounts of time sleeping. Dr has stated there is no recovery from this. She isn't really awake much when visiting. She has been able to state her wishes.

SIL wants her to come home with care. Dr has indicated it could be weeks rather than days.

Obviously DH is struggling as despite MIL being given a shorter lease of life he was hoping she may have made home mobile etc. He is also struggling to accept mil has in part made some decision to 'give up'. She will be requiring 24 hour care in her state. I would assume we would look at this?

Can anyone advise how this has worked for them and their immediate family we have young children too.

I don't think DH and SIL understandably have thought about the practicalities of caring at home and the impact on them.

I don't think SIL or DH have lasting power of attorney either does this need to be sorted ?

Thank you

So sorry for everyone who has commented with their experiences on this thread, especially those who did this with young children 💐

Thank you all for sharing what must be painful experiences, I really appreciate it and I am sure it will be helpful in the coming days and weeks

So sad reading everyone's experiences

My mum wanted to die at home and we were able to facilitate that. We were lucky that the nursing team, her GP, and the night carers were all amazing. Her cancer was very aggressive and she deteriorated very fast but she was able to stay in her own bed and sleep with her partner beside her which was such a comfort.

My mother went home for her final couple of weeks of life. It was horrendous. She refused help from carers and my sister (who was a nurse) ended up doing all her personal care, with support from me and our other sister. She had cancer which had spread to her brain so my lovely, kind, unselfish mother was gone and replaced with somebody that was completely incapable of seeing the effect that her demands were having on all of us - but particularly on my nurse sister who had to manage on cat naps only for those couple of weeks.

I'm not going to do that. Hospice all the way for me - if that ever becomes necessary.

I think unfortunately and quite rightly mil isn't aware of the strain it will put on the dh and SIL. It's very difficult i have a feeling she will also refuse carers due to past experiences

@FishersGate that is so difficult for you. Please accept all the help you can get. Carers, Community nurses, Macmillan nurses. We found that we needed one of us to be the designated person to answer the phone and pass on updates. My mother was elderly and had two siblings 200 miles away who both wanted news and to visit her as well as lots of other people who loved her. You can't really say no to sibling visits but to be quite honest the extra work was really difficult. Trying to keep cheerful and to have meals/tea and biscuits available etc, plus ensuring that Mum was clean and comfortable when they visted. You will need to manage expectations - relatives may need/want to see their loved one before they did but they need to understand that it is a huge strain on those looking after them and visits need to be short and, preferably, singular. If people want to help, prepare a list of tasks that will actually be helpful. Cleaning the bathroom, cooking a meal, going shopping, ordering a takeaway, ringing people with the days update, taking the bins out. Those looking after your MIL are going to have enough to think about without having to carry the mental load as well so if you can delegate some of that as well it will help.

can yu get a professional to explain to her she needs carers theres no way your dh and sil can do it all themselves

I’m so sorry OP. have done it both ways - one way left me with such anxious memories, traumatised me and made me dread going in the room in our family house where she died forever, and the other way was calm, peaceful, and somewhere that we and my late father-in-law all felt safe, comfortable and able to spend some very special last hours together under the care and guidance of gentle, kind, experienced nurses, for whom nothing was too much trouble. Harsh as it sounds, it is the people who will be left behind who have to deal with the decision you make for years to come, not the patient.

This is such great advice! One of the big challenges my friend faced was 'randoms' (her words not mine), turning up at the door uninvited to see her dad when he was days away from death. So they were having to spend time being polite and cater for these visitors (often staying way too long) while also losing precious family time with their dad. Definitely very wise for your DH and SIL to manage expectations and set boundaries for visitors if they think it could be and issue.

Caring for my mother in her final days was like learning to drive with no instructor and only 3 wheels on the car

I was pretty useless - couldn’t lift her properly to avoid pressure sores, as I didn’t know a safe way to lift someone who couldn’t help themselves. Once, I tried and I fell on top of her. There was also the time she managed to communicate that she needed sorbet ice cream and I spent ages going round all the supermarkets in January who unsurprisingly didn’t have any. I cried as felt I had failed her, she couldn’t swallow anything else. Then the time when she needed me and I wanted to go to her, but had to lunge at my 12 month old to stop him crawling towards the top of the stairs and falling down them - which do you prioritise? It was impossible and I blamed myself for not managing it all for too long. I hope the palliative care team see that your MIL needs more than your family are literally able to give.

It's hard. There has to be someone there all the time.

Thank you. It's very hard isn't it. Trying to meet the wishes of the dying and balancing the practicality of it.

Sorry for your loss xx

I am hoping this will be made clear obviously I am not privy to a lot of conversations and meetings .

This thread makes it so clear how awful end of life care can be. I've just been through it myself with a very loved family member. He became unwell overnight and he had been very clear he didn't want to go into a care home.

He was transferred to hospice but even though it was very clear to me he didn't have long, the hospice kept pushing us to make decisions about 'where he'd go next'. I found this really upsetting during what turned out to be the last week of his life that I was having to google 'signs of death' and the like to work out what stage he was at, as the hospice just kept saying they had no idea. In reality following articles I found written by other hospices it was all rather textbook, so I have no idea what they were on about. But it was almost like we were willing him to get worse so the hospice wouldn't move him on - and therefore his wishes could be fulfilled if that makes sense. I realise hospices aren't long-term facilities but it was very clear to me he was dying but his last week I was having to read about funding for his care, and emailing various services while getting very stressed, and it was all unneeded.

In terms of the actual process I am so glad he was in a hospice. In the last few days they were able to respond to his pain/distress very quickly, and they treated him with dignity and care - unlike the hospital who were awful. They had a variety of items we wouldn't have at home too available.

It just shouldn't be this way with relatives not getting the proper support they need. But with both the NHS and social services as screwed as they are - it's no real surprise.

Thank you. I am concerned with the services being so stretched etc too

I am hoping too. So sorry for your loss