Children as part of care package

[Porkpieandmustard]

My mum is nearing the end of her life. Currently in hospital but insisting she wants to go home.
Today the hospital have said (after 2 long talks with her) that she can be discharged- possibly on a ‘fast track’ so that she could be at home in a few days, depending on availability of hospital bed and carers.

She lives alone. She will have 4 carers visits per day. We were told by palliative care nurse that she should have someone with her 24 hours per day.

She asked what sort of care my brother and I can provide. We both live 2 hours away. I have a full time job and a DH with (non-terminal) cancer. DB is semi-retired.

There is a possibility of paying for some private carers but nowhere near enough to cover virtually 24/7.

I’ve had a problematic relationship with my mum and have never wanted to be her carer.

I am surprised that there’s an assumption that we can / will provide this care.

The nurse emphasised that it would be a lot to take on. I didn’t say yes or no and said I would talk to DB (who went off the deep end which is usual but will move to be nearer her if necessary. I don’t feel I can let him do it all though).

Is it usual to put this expectation on children? Or was she testing the water and giving us the chance to opt out?

But then what? Presumably my mum would not be discharged?

Sorry this is probably a bit garbled. I’m exhausted and eating cold chips in a motorway service station.

• [Note from MNHQ: Please see the OP's sad update on 31/1 before responding]

Does she have capacity?
if she wants to go home, is she safe between care calls? Can she mobilise between bed/chair/commode for example or are they expecting her to go home bedbound?
if she’s going home bedbound then is she aware she will have to wait between care calls for toiletting for example? If she soils herself after the carers have left for the evening she will be laying in it until the carers return in the morning.

if she’s nearing the end of her life then is there anything she wants to get home for? Cat/dog for example? Is there a possibility that she can return home until her symptoms become more unmanageable and then go to a hospice?

does she have a lifeline so can call for help in the middle of the night?

she will need referring to district nurses as she will be sent home with palliative medications.

write a list of questions to ask the discharge team.
have a good conversation with your brother.
Also if able talk to your mum and manage her expectations also.

it’s a horrible time for you all.

I am merely warning the OP that SS don't always actually realise what is needed. Fair enough if they aren't able to provide more - but sometimes SS just don't get it. My mum for example, was deemed to be ok with 3 carer calls. SS asked my dad how his social life was and looked aghast when he mentioned he never left his wife alone - this was despite both the carers and social workers having watched her try and eat random, not edible things. Had a similar thing with the elderly neighbour. It's fair enough if SS just can't fund more - it's NOT ok if SS are claiming to be providing a full package, when they know they are not.

Thank goodness for people like you @Brassknucks

OP I have no advice, just empathy. I will likely be facing this kind of situation for one if not both my parents (both 90). The whole issue of later life/end of life care is very much on my mind every day.

Please just make the choice you know you'll be able to live with. It doesn't matter what anyone else thinks. I know that I don't want to be there for my dad, but I do for my mum, as I know she'll want me there. It will crucify me but I don't think I could live with myself if I didn't do that for her.

Thank you for this. You are incredibly kind.

I nursed my elderly uncle for years in my home . We were determined that he would stay here until the end and managed very well . But I was here 24/7 as I lived here obviously. How are you and DB going to manage at two hours away with this. ? And what are SS proposing for coverage ? It is very hard to do take this on as I found out even though I was able and willing to do it . At the end he did go to local hospital for palliative care as he needed more nursing and pain relief than was safe to administer at home but by then he didn't care. I was there as much as I could be but was able to go home and sleep every night knowing he was safe . He died five days later with me holding his hand .

You don't have to do this . SS have given you options . Your mother has requested itbut her expectations may be unrealistic as she may not fully understand what it will be like. It won't be lying peacefully in her own bed . There may be long gaps between carers where she will be alone unless you and DB can move in . This is a huge ask especially if you are not local .

both of you need to be truthful.
if you can't commit or don't want to for what ever reason you need to say so.
you realize the nurses/sw are accustomed to this and will tell your mom sensitively that going home isn't possible.

I sat with my cousin a few times through the night in her last days before she went into a hospice , her cancer was extremely painful and pain relief wasn't touching it some of that time.
It was hit and miss with palliative nursing during that time and there were occasions when hours passed before they came when I phoned them when she was in absolute agonizing pain.
I don't think you should commit with your logistics, own responsibility , emotions etc but my point is from my experience it is really scary to be in the position of care when there is absolutely nothing you can do , you're alone and you have no knowledge of what you're really meant to be doing.
This isn't a safe environment for a dying person potentially in uncontrollable pain.

It’s ok to be honest and say no - to both the nurses and if necessary to your mum. A hospice or care home place will be found, although it may take a while.
You cannot possibly take this on if you’re working and caring for a partner too. Your life matters.
I know your mum wants to come home but does she really understand what 24 hour care would actually be like? She’d probably be calmer and have more rest/less anxiety in a care home

How close is she to the end? Is this going to be a matter of days, weeks, months?

it’s funding a balance between what you can sustain, without resentment, now - and what you can live with once it’s all over. But it’s your decision, it has to work for you. It’s normal for the nurse to ask - it doesn’t mean she has expectations of you, and even if she does, so what? You still get to make your own choices.

End of life care is the responsibility of and funded by health not social services.

I’m an ex DN and would never ever choose to die at home. It’s far too much for many families, promises of services often don’t materialise or can’t be sourced due to demand and care is often disjointed and inadequate. I wouldn’t do it, and I would never ever expect my family to do it for me.

I don’t think it’s going to be easy with the two hour travel time.
I had a much longer journey and dm remained an inpatient because we couldn’t provide the intensive support needed.
The NHS/ social care still work on the premise that families are close geographically and emotionally but that’s often not the case any longer.
Think about your own life and how much you can disrupt it and ask the hospital for alternatives

I’d like to second the emotional experience this poster is describing. My husband died last year was home for the last 7 days following a long cancer battle. I cared for him but had my SIL there to tend to the children, and the palliative team was on call for questions and pain relief. I was very unprepared for the bodily realities of dying and have never felt more alone and terrified than those few nights. At the same time, I’m very glad I was able to see through that wish of his to be home for the end. It’s a raw tangle of emotions still.

I’d recommend browsing Barbara Karnes’ writing on the “labour” process of dying. I only found her work afterward but found great relief in her deeply humane but straight-talking descriptions of the motions and movements a dying person might make.

It’s the hardest thing I’ve ever done, childbirth included. If I could go back, I would ask for a clear description of the dying process from the palliative team, and would dive more into my husband’s world in those last days, joining him in the world he was seeing, rather than attempting to pull him back at every turn.

I wish you and your mom comfort in whatever path you walk next!

Just say no. If she needs 24h care it has to be residential, end of. She sadly doesn't get the choice.

I completely agree. I helped care for a friend who was nearing the end with cancer, just for a weekend so that her daughters could have the weekend off. When she saw how much care she actually needed and it was being done by me, she realised she couldn’t put that on her daughters. She went into hospital a few days later and died within the week. It was a selfless act - of course she would prefer to be at home, but for her daughter’s hospital was so much better.

OP, it's unlikely your mum has a realistic idea of what going home means in her present condition. Hospital bed in the living room means she's been assessed as unable or unsafe to walk around the house, doing things by herself. The place won't look the same. Her social life won't continue. She won't be doing her gardening, cooking, or anything else that comprises 'life at home' for her. Carers won't be forming relationships with her, they change from shift to shift.

I agree with what PPs have written about this, and we were sorry we hadn't booked my mum into a nursing home earlier. The place was lovely. She benefited visibly from having all her meds and meals administered at the correct times and the ongoing interaction with a consistent care team.

We learned that, very near the end, "I want to go home" often means "I'm tired and I'm ready to quit". We realised that Mum had started thinking of "home" as her grandparents' house, where she'd been carefree as a child. It is probably impossible to provide what she wants, so it's time to focus on what will help, given her level of needs.

It's a tough time. Best wishes.

Thank you @JustThen I really appreciate this insight.

I wish now that we had had these discussions with her long ago, but she has never wanted to talk about anything to do with death or dying.
(She’s only just finalised her will!).

Im going to talk to my brother about what I think I can do (any admin, visit my mum). He will have to decide what he can do.

I think pps are right that the nurse had to ask me whether I could provide any care and that she was offering me the chance to say no.

I feel guilty already, have done for years (ever) so any guilt after her death will just be an extension of that.

Oh the guilt will chase you whatever you do. Have therapy for it but not now. Don’t base decisions on it, it’s just a fact of life.

A major concern as a PP said is how much PRN (as needed, outside regular meds) pain relief she is needing and how much she will need in the future. Of course not all conditions that lead to death are actively painful. And towards the end if the community palliative care team and the district nursing team are involved and functional, she can have a syringe driver. But if she is needing nurses to give her top up morphine at the moment, part of any mental capacity assessment should include her plans for how that’s going to be managed. If she says ‘I won’t be in pain at home’ or ‘I’ll cope’ or ‘I’ll pop to the bathroom’ given that she’s not mobile, immediately you have evidence that her mental capacity may not be up to the complexity of this decision. So; ask about night needs and PRN pain relief needs now.

Not everyone has the same relationship with their parents. Don’t be so judgmental!

Having experienced hospice at home for MIL and hospice in the hospice for DM, hospice wins out for all concerned. At home 4 visits a day was not enough, not even with all the family there trying to care too. Everyone was miserable, she ended up going in and out of hospital twice and eventually passed hours after arriving in a hospice. DMs experience was total calm, constant access to drugs or anything else she needed. It was much easier for visitors- and we were all visitors not carers, no one was juggling feeding and laundry and multiple phone calls begging for help or pain relief. Three days before DM passed we were wheeling her around the beautiful garden outside her room, she'd just had a shower and was pain free and talking about the glass of wine she was having with her dinner. MIL was stuck in her front room for weeks unable to leave that room because the doorframe was too small for a wheelchair, she couldn't get to the bathroom for toileting or a shower either.

I hope all goes well for you.

My lovely mum died in a hospice which was her wish and was completely ideal. If your mum is in the last 2 weeks of her life might this be an option? It’s much much nicer than an acute hospital.

The part where she was dying at home prior to going to the hospice was excruciating for us all and that was with me, my dad and my 2 siblings sharing the support. She lost the ability to walk, transfer or even move herself in bed and in between care calls we had to manage that whilst trying to maintain her dignity. She was breathless, in pain and panicking but a bit resistant to PRN medication as worried she would take it and not wake up. We didn’t have the expertise to know what to give her and when. She slept a lot but no way would we have left her alone at any point as she was often terrified when she did wake so we took it in turns to sit up all night. Right at the end (mercifully after she got to the hospice) she was very confused and distressed but they were able to adjust the syringe pump and get her comfortable. My parents live in a rural area and although we could call a palliative care team for advice it would have been hours for them to get there. The relief when she got to the hospice and was in the care of experts was huge for her and for us and we could concentrate on spending quality time with her. The experience made me think that dying at home is over rated.

Definitely do not agree to support something that you cannot do and maybe ask if a hospice has been considered.

The trouble is that inpatient hospice is rarely a choice - it’s a service for uncontrollable symptoms only and people can be discharged to nursing homes (occasionally even home) from hospice if stable.

Another to say I wouldn't plan on nursing at home. 24/7 care is not only difficult, to support someone passing well is an imcredibly skilled role that requires training (in my personal opinion). Say no, once you have said no they will look into alternative options. It should all be funded so check in with the GP/hospital about hpw best to access the funding.

I don’t understand how this could possibly be achieved at home without 24 hour care from nurses. Having spent their last weeks with 2 elderly relatives (both in hospital) dying from chest infections in extreme old age, they were both immobile, drifting in and out of consciousness (mostly out), required turning/moving, drips, catheters, sedation, mouth care etc. Nurses were in and out of the room throughout the day- not just 4 times - to give pain relief & sedation (not medical care). The process took 7-10 days in each case.

OP unless you have nursing experience & are trained in the necessary skills including being authorised to give painkillers I do not see how this could be possible & you should refuse.

Exactly my thoughts.
Not very helpful for the OP.