Caring for terminal patient at home or nursing home

[Totallybannanas]

I finally spoke to st Luke's today and they advised us of our options going forward for when my dad becomes poorly. They said he may have to go into hospital, or he could choose to go to a nursing home or stay at home and have carers come in, but this would only be 3 times a day and because he lives alone there would be periods where he would be on his own with our carer unless I stayed.

My dad wanted to stay at St Luke's hospice , but they only take patients a few days before and only if they have a bed. I am completely blind sided right now. Dad really wanted St Luke's or to die at home. But I am worried how I will have to care for him if he stays at home, as I am his only main carer and my sibling is unable to. I would have to go sick or give up work as couldn't leave him alone especially overnight and if he really wanted that I would do it. But if he chooses to go to a nursing home, they would get him in before he becomes acutely unwell to give him time to settle. I didn't ask if this would then be his place of death, or whether he would still have an option of a hospice. He was only diagnosed 4 weeks ago with oesophagus cancer. He is so depressed as he can't eat normal food. Despite being 80, he has never been poorly and vulnerable before 😥
Can anyone advise?

My dad died at home of an upper GI cancer. He had two hellish weeks on an oncology ward in a heat wave but we got him home for the final week with the support of St Luke’s. We had daily visits from St Luke’s and district nurses plus one night only from a Marie Curie nurse. It was only a week at home and there were five of us, extremely gruelling and emotionally exhausting.

Can your dad go into a nursing home and transfer to St Luke’s hospice for the very end of life care? I would not agree to care for him myself at home in your position.

My mother had terminal cancer and recently died at home. I had to move in to care for her, I felt I had no choice. She hated hospitals, so wouldn’t have wanted to go into one at the end. It was made clear how difficult it would be to get a hospice bed and in fact we never did get one.
It was an incredibly difficult and challenging time. I couldn’t just be her daughter, I was her full time carer. We tried carers but those provided had no clue about end of life care and often didn’t come when she needed toileting etc. The district nurses were brilliant and managed the pain relief and symptoms in liaison with the GP. They organised the bed and aids etc. They came fortnightly to start with then weekly and then daily at the end. I hadn’t appreciated that a large part of DNs work is end of life care so no macmillan nurses were contacted or involved in our case.
My daughter moved in for the last 3 weeks as I couldn’t have toileted or turned Mum on my own. Luckily she was between jobs. If I hadn’t have got help Mum would have needed to go into hospital or a home without doubt. My once very lucid Mum became very confused at the end which is common. This proved to be very challenging as she kept trying to get out of bed etc. We had a baby monitor and basically did shifts between us.
The syringe driver with meds was put in place a few days before the end. I’m a nurse and luckily semi retired so could devote this time. However, I have been left very traumatised. I had no respite and I couldn’t just be her daughter, I had to witness her dying over several months. For her it was good she died at home but a hospice would have been preferred- there just aren’t the beds available. As it turned out Mum didn’t know where she was at the end but you can’t predict these things obviously.
This is my experience and it will maybe differ depending on your area. I wish you all the best, I know how tough it is.

Also, be aware that your father's wishes may change as time passes. Both my DM and my DH wanted to stay at home, but as their illnesses progressed they realised that they'd be much better off somewhere else.

I haven’t been in this position but as a person who works full time and cares for an elderly parent, I absolutely would not do end of life care on my own. Plenty of people do but I can imagine it must be very stressful to assist and to watch, as the person you love begins to shut down. I would personally opt for a nursing home so he has time to get comfortable. There’s 24/7 care on hand and then you get to be there to love and support and be a ‘daughter’, not the one who is run into the ground trying to do everything. Ultimately it’s your decision (with input from your dad of course) but I wouldn’t do it solo.

Please don't underestimate how hard it is to care for someone at home. My husband wanted to die at home and the last 2 weeks were extremely difficult and I had help from friends and family. The pain relief was never adequate despite the efforts of McMillan and the pain consultant at the hospital. It was very distressing for all of us. I agree with contacting McMillan for advice - they arranged a sitter on a couple of nights to give us a break and the nurse visited regularly although the district nurses came every day.
Best wishes x

At home care, without all the support necessary is exhausting. No one wants to leave their own home, and that is to be respected. However, needs must. If there is no continuity care provision or privately funded 24 hour care at home, then, in the absence of a hospice brd, NH is the safest and most dignified option for him, and also for you. Don't feel guilt. You are doing your best in a harrowing situation.

Nursing home on balance, have experience of both. Community Nurses just don’t have the resources or response time when they need a stat dose of pain relief. You could be waiting 4 hours for it. But also check that the Nursing home has staff who have the capabilities to change syringe diver daily. Unbelievably this happened to us and relative had to go without pain relief as Community nurses wouldn’t come in as patient was on a nursing bed, but there was no one trained on the nursing side to do the driver. Appalling. I wish you well in this difficult time x

I’m so sorry. My darling dad died last July of oesophageal cancer too.
You need to find out your local hospice, palliative care team etc. it might be MacMillan, ours here is Sue Ryder.
Also the GP should do a home visit to do a RESPECT form.
Hospice works like this: they can only have inpatients for 2 weeks ish. So they have to time it carefully which isn’t easy. If your Dad is worsening day by day it’s time for hospice.
You could also ask for him to be admitted for “symptom management” to get pain and other symptoms under control. They hope that the patient will then go home or perhaps to a care home with medication etc in place. This is what they did for my Dad but he deteriorated quickly and didn’t come out, he died 2 weeks and 2 days after he was admitted.
I’m so glad and so grateful he was able to spend his last days at the Sue Ryder hospice. It was a very special place and the care was amazing.

Also I was preparing to be trained to give injectable pain relief (I’m a dentist). As I understand it’s all at home and you ring Goldline (at our hospital they have this it’s a direct line to the paliiative care team) and they approve you and then you give the morphine etc without having to wait for the nurses. I was very grateful that he was in hospice though so I could just be his daughter.

“Dying at home” sounds very romantic but isn’t. At that stage their world is their bed and home is whoever is beside that bed. I lived at the hospice for his last week, I didn’t go home at all. So he was home because his baby girl was with him.

I would say nursing in a care home, registered nurses should be on hand to help with any queries.

It was a Marie Curie nurse we had for my mother in law.
It was arranged through the district nurses.
If you speak to your doctor they'll sign you off sick.

I’m currently off work sick caring for my dying dad at home with my mum. It’s been 20 days so far and it is horrible seeing him like this. It has taken this long but we finally have some support and the meds we need. Initially it was a total shambles. My mum would not cope if she had to do this on her own. I have had to fight to get what he needs. We now have a nurse coming in to care for him overnight for three nights every week to give us a break.
Your dad should be put on an End of Life pathway and you should have numbers to call for District Nurses, palliative care team and OOH direct palliative care line. Do not be afraid to keep calling until you have a plan and support in place. They will try to get you to send him to a nursing home because it’s easier for them but I am pushing back because I know 100% that my dad wants to be at home.

Not all areas have adopted Respect forms yet btw.

That's made me cry 😥

I'm sorry you have also experienced this. We only have one hospice in the area that I'm aware of and they only have 12 beds. We were told they only take a few days before not the standard 2 weeks (how they can predict this I don't know) and that is if they have a bed. The alternative is hospital or a nursing home. I'm really struggling to approach this conversation with dad if I'm honest.

@Totallybannanas have you made contact with Marie Curie, MacMillan or your gp yet? If not, do this now. This afternoon.

If you feel you can’t care for him at home until death (considering your own circumstances because you say you have little support and the experience offered in this thread) and you can’t broach the subject yourself, have a chat with them and tell them that they need to.

So often, a man will dismiss everything his wife or daughter has to say yet will fold meekly when a third party says “this is what is right for you”. Being a daughter needs to come first for both you and your father.

As a community nurse I wouldn’t die at home.
If your dad requires pain relief when he is unable to swallow you can wait up to an hour before nurses are there (that’s the target time and obviously if they are busy at someone else’s home or stuck in traffic you are left to wait).
My gran and grandad had a lovely death at home but was only facilitated by us being there all of the time.
Hard when it comes to person care as you have to wait for carers etc (they were both proud people and wouldn’t let us help them).
They could both swallow their medications until the very end when they were settled very quickly on the syringe driver.
We had a lot of people in the family but it mainly came down to my parents and me. It was very hard. We were promised night sitters and we have 1 for 1 night from macmillan.

My other grandad was in a nursing home and we were so glad. It took A lot to get him settled and pain free and we had a nurse on tap to give medications and the carers were there all of the time.

Each is individual but realistically you will be the main carer and there all of the time. Even with 3 times per day carers and nurses coming in.

so sorry OP. It’s such a hard time xxx

Thank you, we have just had a visit from the community support team hospice. It seems like they will take him if there is a bed or he will die at home I guess. It's very difficult to have a conversation with dad there about my worries, as alot is about asking what he wants. He's not took himself to bed, as alot to remember and obviously there doesn't seem to be much support right now although in fairness, he looks better after I've been giving him his medication and cooking his meals. I did ask if he went into a home, if he could still go to the hospice they said yes, if there is a bed. I feel like he isn't happy with me because I've been asking about a home and I'm not sure how to approach the subject without making him feel fearful or worried. It's horrible.

Maybe it's something to review further down the line, if he gets too poorly and I'm unable to cope. Without prognosis it's difficult to plan.

We (mainly my sister as she used to be a nurse and was the only person my mum trusted with personal care) looked after my mum in her final few weeks and it was harrowing. We had a Macmillan nurse who did night care, we had district nurses who came in daily to do her drugs, and we had carers who were meant to do her personal care once a day, but she refused any help from the carers at all. And in her last few days she didn't know where she was or who we were anyway.

My MIL also died at home. She had known she had lived cancer for some considerable time before she told us. My DH and I, and my BIL and his DH all stayed at her home during her final weeks and my SIL came in daily as she lived locally - she did most of MILs personal care but we all shared it during the night. She had support from community nurses when we asked for it during the day, but was in less (but not no) pain. It was distressing but not as harrowing as when my mum died.

If your dad is willing to go into a hospice then let him do that if it is possible. Accept any and all professional help. I have vowed that if it is possible I will not put my DH and family through the trauma of having to look after me when I die.

This is just my personal story/opinion. Only you know what is best for you.