Should we continue with hospice at home?
Posted by CorrectTadpole9997@reddit | AskUK | View on Reddit | 46 comments
[removed]
Posted by CorrectTadpole9997@reddit | AskUK | View on Reddit | 46 comments
[removed]
RagdollCat25@reddit
I’m a district nurse so this type of thing is my bread and butter, so to speak.
The support you get from places like hospices/Marie Curie etc varies from area to area, but it sounds like you need some carers or something in place to ease the strain on you.
It’s hard to give you advice about the right route as obviously I don’t know your dad’s situation or what type of funding he’s currently got, but it won’t hurt to contact your local district nursing team first of all to explain your situation and see what help can be offered. All the best
CosyColouringBooks@reddit
My mam was absolutely determined she wanted to die at home and asked me throughout if I could promise her that. I was only 23 when she was diagnosed with cancer for the last time and 24 when she died, after 4 months of being told she was terminal.
I did make sure she was at home when she died but my goodness it was the single most hardest thing I've ever done in my life and I would honestly think twice if I was ever faced with that decision again. We did have district nurses in 3 times a day to change her dressings etc and make her comfortable, closer to the end they would come and make sure the syringe drivers were all sorted out as well but in between those times everything else fell down to me and honestly it was so incredibly hard to process and watch.
We had McMillan involved but to be totally honest I didn't rate them at all, I actually wrote a formal complaint about her named nurse. I also didn't really rate a couple of the district nurses either, I know they do a fantastic job but there was a couple of times where I overheard them talking about the holidays they were going on and what they were doing over the weekend...whilst making sure my mam who was dying was comfortable with syringe drivers in, I just didn't like that.
We got Marie Curie support workers in for the the last week of her life and honesty they were absolutely amazing, they couldn't have done more for her. One in particular would just sit and read to her and sing songs, it was really lovely.
Hospice care was always off the cards but even now 13 years later with hindsight being a wonderful thing, I do think hmm would I have went against her wishes had I known what was coming? Probably, unfortunately.
I hope you make the right choice for you and your dad, I offer so much sympathy and love to you both.
Different_Insect_811@reddit
you seriously made a formal complaint about the nurses making... small talk... ? the nurses are human too, it's not possible to go to dying people day in day out without having coping mechanisms. Small talk and catching up with colleagues is one of them. sorry for your loss but you need to give your head a wobble, healthcare professionals are not robots
sarahc13289@reddit
Sure they’re human and have to have coping mechanisms but it is not appropriate or professional to be having these conversations in this situation. These conversations are for when they leave the property, chatting to each other in the car or back at the office, not when they’re dealing with a palliative patient and their family. There are other ways you can decompress in the moment, this is not it.
Zounds90@reddit
I don't have experience of palliate care at home (went from hospital ward to hospice) but the hospice was wonderul. Very calm, kind, privacy. Lots of little home comforts like use of a kitchen, access to a garden, a personal fridge. Visiting was easy, you could stay as long as you wanted.
Made an awful situation bearable.
noddyneddy@reddit
Same here. My Dad sent his final two weeks there. We had a family room so we could all be together and there was a guest suite where we could sleep and shower. Staff were fantastic
noddyneddy@reddit
Oh and hospital didn’t offer it, but the hospice website said self-certification was possible. I sent an email over the weekend and bless them they had the ball rolling Monday am- Dad transferred Tuesday lunchtime. I don’t know what we’d have done without them
imtiramisu2025@reddit
I had to look after my my mum due to cancer. It was for 6 months but she was only really bad for 1 month id say. We had support from st giles who where honestly amazing but could only do so much at home.
My mum wanted to be home and we kept her there as much as possible but it reached a point where we just could not provide the level of care she really needed. So she went into the hospice for her last 2 weeks. Shes the one that changed her mind after realising how bad she got. Even then I helped with things like showering.
I guess i dont know all the ins and outs and what support is available but id be suprised if anyone can offer the care your dad needs from home which included managing pain if this is something he is facing.
Is he in a position to decided what he wants? Often we want one thing but when it comes to it later we acknowledge something different might be better. If being at home is something he wanted before he got this bad it doesnt mean its something he wants now.
I loved my mum being at home but honestly it was terrifying. Managing and getting up for her medication to still see her in pain. Helping her to the toilet. Wondering if in the morning she would still be alive.
I was 27 and sometimes you need to do what feels right for you all. I felt much safer knowing she was looked after in hospice and I still got to be there for her last 24 hours.
Im sorry youre going through this and theres no right or wrong in what you decided. Youre doing your best.
GlitchingGecko@reddit
I did similar. In hindsight, I wish I hadn't agreed at all, because a lot of my memories of her and now tainted with how bad things were at that time. It's hard to remember how she was before.
imtiramisu2025@reddit
Was it quite recent? I felt similar for the first year and all I could remember was my mum ill bit then as I processed the grief those memories went to the back of my head and now I remember her when shes well. I found watching lots of videos and pictures of her really helped
GlitchingGecko@reddit
No, 2020.
My mum was mostly in hospital for the 6 months she was ill, and it was all during lockdown, so I couldn't visit. I had her at my home for two instances of four days during that period, and those memories are very vivid - especially as I was the only one taking care of her. Both instances of being at home were supposed to be 'out and recovering', so having to then call ambulances to take her back in were also pretty traumatic.
Dissidant@reddit
Is there a particular reason the council (adult services) aren't involved in the care?
Like did they offer and get turned away/refused or have they simply not bothered
Because I am gathering at some point your father was in hospital to get the diagnosis, and would had been discharged home, which usually means the discharge team informing the local authority of a vulnerable adult requiring care going back into the community
You should contact adult services and request an urgent assessment, it'll prob get seen quicker than normal due to the terminal illness. They need to do needs assessments for your father as well as a carers assessment for yourself (care act 2014)
mortstheonlyboyineed@reddit
Ive found things actually move a lot quicker through the hospital social workers than the community ones. They have pressure to clear beds so things get sorted. You do often need to be quiet proactive though.
Dissidant@reddit
Yea, depending what their workload is they'll do the care needs assessment for the patient, but not the carer assessment for OP.
The latter falls within the remit of local authority, which they are legally obliged to offer/carry out
ChairMiddle3250@reddit
Hi, I went through a somewhat simar situation a few years ago when my mum was dying of cancer.
We tried to keep her at home as long as possible. She lived out in middle of nowhere so we didn't really have Macmillan support. We instead paid carers to come in a few times a day to help with bathing etc. We did unfortunately have to help her go to the toilet etc which was obviously not nice.
It got to the point where her cancer spread and started causing severe pain which we couldn't manage at home. One night was so bad that we had to call for help and it took almost 6 hours for the on call Dr to get out to us. So she went into a hospice in the end.
I can't thank the hospice enough, it was a lovely place and she got a much higher level of care than we were able to provide at home. They were also able to give her more pain relief than we were allowed to. It stopped her final couple of weeks from being abject hell. We were free to spend all day with her (within their opening hours), my sister for example would work remotely all day there. When she passed a Dr was with us and they sorted everything for us. All we had to do was get a death certificate and choose a funeral director like normal.
I won't tell you what to do but I will say I will never regret sending her to hospice. It was a much better experience than I could have imagined and it's a place completely designed around specialist end of life care to ensure our loved ones retain as much dignity, and are as comfortable as possible.
sparkly_wolf@reddit
Are you not having carers in multiple times a day? If not speak to your District Nurses ASAP about Continuing Health Care.
I work for a domiciliary care agency and we fulfill palliative care contracts for this exact scenario. Generally up to 4 visits a day, 2 carers if needed for between 30 mins to an hour depending on what's needed. All funded by NHS even if you were over the financial thresehold for funded regular care.
Its really hard, you have my sympathy, but generally I'd advice that if dying at home is someone's wish then do everything you possibly can to achieve that. Yes its short term pain, discomfort, unpleasantness and everything else but thats better than decades of regrets and wishing you could have done things differently (speaking from personal experience with My Dad as well as professionally)
But please, keep pushing for extra help, its out there but sometimes you have to firmly advocate for it.
Agreeable_Guard_7229@reddit
When my late partner was on end of life care, we had funded carers for the first 12 weeks he came out of hospital but then they started the process to assess our financial situation and I was told I would have to pay.
He died the next day so I ended up not paying anything but being told that really stressed me out as I had no idea how I could afford it, (I am a high earner but I also had a very high mortgage/debt levels). Hearing that it should have been funded makes me angry as the whole funding issue really stressed me out when I should have been focusing on spending time with my partner.
GlitchingGecko@reddit
That's all well and good, but if it's 4 times a day, that's still potentially 6+ hours between visits. If someone has an accident just after a nurse leaves, it's not really acceptable to leave them sitting in their own waste for those 6 hours.
I'm not blaming you guys, it's an awful situation, but even with those visits, it's still a lot of work for the other people in the household.
sparkly_wolf@reddit
So a normal routine for us would be 0800, 1200, 1600 and 2000 with a night sit carer 2200 to 0700.
Yes, still up to 3 1/2 hours between care visits but not as bad as 6 hours. In between District Nurses should be visiting day and hopefully the Hospice staff then available also.
No its not perfect, yes family will be expected to help with some aspects. For most people its still worth it to avoid dying in a strange environment probably away from all you loved ones.
mortstheonlyboyineed@reddit
I was told recently that wake night staff are only available at the very end unless we paid for them ourselves? I was close to burn out being disabled myself and I did manage to get my mum an extra 6 hours a week because of that. We use it as an extra 2 hour sitting call 3 days a week to give me a break. We have in the past managed to get funded wake nights through a very stressful process of waiting until its the out of hours team and calling them. I was actually advised by social services to do it this way and utilise the loop hole but id have to spend ages on the call after 6pm and wouldn't have support confirmed until 9ish which was so anxiety inducing. Thankfully my parents care agency are really good and worked with me by agreeing to the extra hours before the funding was allocated by the out of hours so they could just step in once its organised but the not knowing for sure was hard. OP are the palliative nurses not able to arrange night support?
GlitchingGecko@reddit
You're in a very generous district. The most my dad was offered was twice a day and nothing overnight, despite the fact my mum (a foot shorter and half the weight) was the only one providing help.
Once he couldn't make it to the bathroom, things deteriorated quickly.
Sazah28@reddit
I can’t help but thank you for posting this - I need the same advice because I just don’t know who should/can be doing what.
Sending you strength.
GlitchingGecko@reddit
Yeah, that was the point my mum put my dad into hospital. She realised that she couldn't cope at that point, and if the NHS weren't able to supply a 24hr nurse, then he couldn't stay at home any longer.
Thankfully(?) he thought it was just a visit, and within 12hrs he became very confused and died a week later, so although he wanted to die at home, he didn't know where he was anyway.
I understand honouring a dying persons wishes, but it has to be balanced with the affect it's going to have on the living peoples memories.
Gatecrasher1234@reddit
Both my Dad and sister died of pancreatic cancer. Both wanted to die at home. My sister was not involved in my Dad's care.
If I get terminal cancer, I will be pushing for a hospice place.
Home care really does take a toll on the family. I want family to have quality time with me during my final weeks, not stressing about timings of medication and dealing with waste body products.
My brother-in-law got into a real mess with my sister's medication and I had to sort out a schedule so he could tick off what and when. This is all sorted in a hospice.
Plus my sister didn't want the nurses sorting out her intimate care, so would say she didn't need the bathroom, when she really did.
Everyone is different, but no one will judge you
Full-Suggestion-1320@reddit
Your GP has an emergency fund to provide 6 weeks of emergency care usually via the red Cross in many counties. We had to start this with my mother in law until we could get a proper care package in place. They were absolutely amazing and we ended up having 8 weeks of care 4 times a day. Once that 6 weeks was in place they were able to extend it slightly.
We got this care by the community occupational therapist who seemed to be the only one who knew that option existed.
Start by making a social services call or phone your social worker. Ask the district nurse for a community occupational therapy referral to get an assessment for equipment to help you. Talk to the district nurses about care help and payment for that help.
Yes you have been let down because this should have all been in place and ready to go.
Fresh-Fisherman-1047@reddit
This is so hard OP, but you’re experience with Marie Curie is one I am familiar with. As others have pointed out, CHC fast track is what you need, it should be approved within a few days and provides free care to whatever level the patient needs, up to 24 hour care in whatever place is the most appropriate. Your GP is usually the person who applies for this if the patient is at home, and the application goes straight to the ICB.
I hope you can get this sorted for everyone’s benefit as soon as possible, happy to answer questions.
elgrn1@reddit
In case anyone hasn't said it, you're amazing.
While one can argue its what a child does for their parent when they need to, being a carer to a loved one and having to do things you would rather not, while also having to adjust to a huge life change while grieving before they have even left, is not in the least bit easy ❤️
FreeBogwoppits@reddit
TRIGGER WARNING, this includes some possibly upsetting information about passing away at home.
I volunteer at a Hospice, and did "die at home" with my uncle and father in law. The following is just my experience. Apologies for being a bit curt, I'm just trying to be brief.
The quality of support provided by Marie Curie is extremely variable. They can be a Godsend, and they can be a PITA that make matter worse by being unreliable. It's not unusual to be disappointed by them.
It's uncommon for people to die in a hospice, or at home, even with the best support in the world people tend to need in-patient hospital support in their last weeks.
My father in law died at home, with Marie Curie support. He 'faded away'. He had carers come in four times a day, and supplied free of charge under NHS Continuing Healthcare (CHC), plus the Marie Curie nurses. Frankly, the whole thing was fairly easy as he just faded.
My uncle did not fade. He needed to be in hospital, his care needs were just too much, but he wanted to die at home so it was accomodated. It was awful. As his needs were so complex most of the agreed support didn't happen. He was home about 10 days, his last words as he died in his own bed covered in shit were "I'm in hell".
Friend, I really think your dad would be eligiable for fully funded carers under CHC.
https://www.continuing-healthcare.co.uk/news/how-to-apply-for-nhs-continuing-care
Talk to your local hospice, see what they can suggest or offer. Quite often they offer respite, they take the patient for a couple of weeks to give the carer a break and a chance to set up meaningful care at home. But if nothing else, they'll be able to open the field a bit for you with some suggestions on how to move forward.
This whole situation is something you only learn about the hard way, so wishing you and your dad all the best.
Nervous-Librarian945@reddit
You’re doing more for your dad than most people ever could. Whatever you decide, don’t let guilt convince you you’ve failed him
ACanWontAttitude@reddit
You need carers.
Marie Curie/macmillan arent there to provide personal care of the nature you described.
Go through them to ask for a package of care, they usually have better facilities to arrange emergency care
ByteSizedGenius@reddit
Marie Curie do potentially offer hospice care at home. But unfortunately it seems a few of us at least have been given the run around by them where they offer stuff that never transpires. I have never actively disliked a charity more than MC for the shit they pulled with my dad.
Famous_Counter9175@reddit
I'm so sorry to hear about what you're going through. You need to contact your GP. Palliative care nurses can be provided via the NHS and you should have multi diciplinary team to provide at home care during end of life. Please contact your GP. If it does get too much, please don't feel bad about hospice care. This is an extremely difficult time both physically and emotionally. But hopefully your GP can arrange NHS at home care for your dad.
thespacewitchnumber3@reddit
Palliative care nurses are specialists for symptom control rather than personal care within community settings
wedontneednoeduc@reddit
Sounds like a call to the council for carers is the way to go. A charity isn't going to be the same deal, but even that is a hard slog as many careers aren't that interested in doing the job so you end up a manager for agencies.
Been many many years so my memory has faded, but a hospice isn't going to admit someone for care. They have to be right at the end.
Another idea, if you Dad has some money then buy in some carer time so you don't knacker yourself out.
CorrectTadpole9997@reddit (OP)
Thanks for the reply. Oh my dad's definitely at the end.. probably 2 weeks at most.. My mum ended at a hospice too, but that was also a long long time ago, so I understand things change..
Council carers told me it can take months these days to get a new package organised.. we don't have that time...
As for extra caring.. we have one a day coming in at a set time, and whenever we've asked for extra ad-hoc, they're always like "we can do next week?"...
😓😓😓
Snoo_said_no@reddit
Chc fast track is the phrase you need.
Ask the district nurses to refer to the icb. The GP can too, as can the mariecure nurses.
Adhock is very unlikely. But 4x day is very normal. As is live in and sitting services depending on need.
Dismal_Fox_22@reddit
Social services don’t find end of life care, that comes from the Continuing Health Care pot which I NHS. The District Nurses can assess and request this.
PotatoPeeler58@reddit
I had the same situation with my dad. Leave him die at home like he wanted. They put my dad in a hospice but into a SHARED room. Safe to say we brought him back home that same day only to die two days later.
No_Top6466@reddit
Sadly I had a similar experience with my mum but with macmillian and the palliative care team. I ended up calling macmillian crying and begging for help because my mum was getting the bare minimum and needed more. Her needs were not at all being met at all. My mum ended up passing away in a hospital ward and I wish we just looked at a hospice for her, there was no dignity in her death whatsoever. I was offered no support afterwards either. My mum was undecided about where she wanted to die, whether that was at home or in a hospice but she was open to both. I wish we had more support about getting this organised properly for her.
Severe_Mastodon8072@reddit
Hey.
My mum and grandad did home hospice. I was more involved with the former than the latter, although not responsible for either.
Bluntly speaking: Family did a lot of the nursing. I’m not sure how much of that was out of choice (I know my mum had a night carer at one point, but after my dad realised she couldn’t do anything more than him he sent her home). But yes, there are other family members who are providing this kind of care.
As to how my dad and grandma managed… I have no idea. They had help (particularly my grandma) but it was still an enormous feat.
I really hope you get some more support. But yeah, short of having a full time carer, there will be times something comes up when there is no carer there. It does not mean you are failing to protect his dignity. Like you said- you are doing what you’re doing precisely to protect his dignity.
Timely_Egg_6827@reddit
Talk to council - get carer support. Even then we did a lot of catheter changing, helping him toilet,cleaning up messes. The support from district nurses is fantastic but they are over-stretched. We had carers paid for by council in 4 timesa day but we both live miles away. We could usually be there 24/7 but not guarantee it. If services can fob it off on family,they will.
Ok_Chipmunk_7066@reddit
My partner died of cancer in the house, from my experience the 0-60 was very quick. Doctors gave her a month, 6 weeks later she went from walking around and eating but weak, to dead in about 4 days. Once the GP got involved and started home visits they were just pumping her with morphine.
To answer your question it became too difficult to move my partner towards the end, so leaving her in the house was best scenario for her. The last 4-5 days are obviously the hardest, the butt wiping isn't exactly glamorous but as the body starts shutting down that all stops (until they die). I'd think about your mental health at this point as its 5 years later and I'm still a little traumatised by it.
I didn't want the hospice as visiting was difficult (still covid restrictions) and it all felt much more dignified at home and not hearing that fucking beep in hospitals was certainly a bonus.
Responsible_Bird3384@reddit
I looked after my dad at home in the final months of his life, it wasn’t cancer (COPD) so MC not involved. The district nurses were amazing, and in his final few weeks where he was largely only semi conscious (on a midazolam driver at that point), I was supported by an organisation called Rapid Response who provided an overnight nurse to sit with him so I could get some sleep. I often felt I wasn’t doing a good enough job tbh and it was really really hard and exhausting. I can’t speak to hospice care as it wasn’t offered, but the DNs all said he was getting better care from me at home than he would have done in hospital. At the end of the day, managing your dad’s pain and comfort is the most important thing, but it’s also really important that you look after yourself too, both physically and mentally. I’m so sorry you’re going through this x
Helicreature@reddit
I sadly have recent experience of this. Will DM you.
VxDeva80@reddit
I am so sorry you are going through this. I do wonder if you are having bad luck with these particular Marie Clare staff.
When my sister was dying, they couldn't do enough and were always there if we needed help and advice.
Is it worth speaking to someone at Marie Clare to check what they do and don't offer/support?
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