Palliative Care at Home
Discussion
We took mu home because of her wishes, but when she was in hospital they gave her medication, checked her sugar levels, blood pressure, doctor came to se her every day.
Now at home she gets nothing apart for pain relief.
I asked the nurses to check for fluid on her lungs, they won't.
Not sure what I am asking here it just feel wrong that everything has been stopped.
Now at home she gets nothing apart for pain relief.
I asked the nurses to check for fluid on her lungs, they won't.
Not sure what I am asking here it just feel wrong that everything has been stopped.
Deepest sympathies in a horrible time.
The things that are available at home are obviously not the same as at home, and your mothers wishes are to be at home. That supposes a choice has been made. My google says that fluid on the lungs is either an ultrasound, or a needle to the thorax, neither of which are simple, or likely to happen with a home visit nurse.
The things that are available at home are obviously not the same as at home, and your mothers wishes are to be at home. That supposes a choice has been made. My google says that fluid on the lungs is either an ultrasound, or a needle to the thorax, neither of which are simple, or likely to happen with a home visit nurse.
randlemarcus said:
Deepest sympathies in a horrible time.
The things that are available at home are obviously not the same as at home, and your mothers wishes are to be at home. That supposes a choice has been made. My google says that fluid on the lungs is either an ultrasound, or a needle to the thorax, neither of which are simple, or likely to happen with a home visit nurse.
Yes I understand, but things like sugar levels are easily checked, so is water on the lung, she had this done many many times over the years. The things that are available at home are obviously not the same as at home, and your mothers wishes are to be at home. That supposes a choice has been made. My google says that fluid on the lungs is either an ultrasound, or a needle to the thorax, neither of which are simple, or likely to happen with a home visit nurse.
We went through this last year with mum in law, albeit in Spain not the UK. I feel for you OP. Good luck and just keep her as comfortable as poss, we had both pain and anti anxiety medications for her which I administered as everything is done by the family in ES. Wasn't easy but as for you, she wanted to be in her own bed with her family around her.
I sympathise.
We've been going through this for the last 3 months. The 1st couple of months were tough but we coped. As mental and physical deterioration occurs things are getting tougher, the hardest thing we've ever done.
Spending most of our time feeling vulnerable and out of our depth. (ie I don't know much morphine I should be pouring down her throat, or when to administer tablets to help with the night horrors)
District nurses are brilliant. But we don't often see the same one, so they're working from notes not experience of the patient.
Millbrook health care brilliant at getting and collecting equipment.
GP about as useful as a chocolate fire guard.
Occupational therapists (with the exception of one) are more interested in a box ticking exercise.
Carers brilliant, both NHS and agency
Marie Curie has provided a couple of night sits, enabling us to get some sleep. Fantastic service we're grateful for, Mrs Doing and I taking night sits in turn so now 1in 3 rather than every other one.
Our rock though all this has been the Mcmillan nurse. She coordinates the other agencies, bangs heads together as required and provides practical support. (ie she'll organise a prescription for a different medication make sure it's in stock at the chemist, phone to tell me where and when to collect)
We're both tired and in tears, Marie Curie have just phoned, they're coming again tonight (thank heavens)
If it comes to this for us, we've made no bones about it. We don't want the humiliation, we want to be looked after by professionals in a hospice or nursing home.
Our emotions lurch between guilt, hopelessness, tiredness and wanting it all over. For her sake I hope it's not long.
We've been going through this for the last 3 months. The 1st couple of months were tough but we coped. As mental and physical deterioration occurs things are getting tougher, the hardest thing we've ever done.
Spending most of our time feeling vulnerable and out of our depth. (ie I don't know much morphine I should be pouring down her throat, or when to administer tablets to help with the night horrors)
District nurses are brilliant. But we don't often see the same one, so they're working from notes not experience of the patient.
Millbrook health care brilliant at getting and collecting equipment.
GP about as useful as a chocolate fire guard.
Occupational therapists (with the exception of one) are more interested in a box ticking exercise.
Carers brilliant, both NHS and agency
Marie Curie has provided a couple of night sits, enabling us to get some sleep. Fantastic service we're grateful for, Mrs Doing and I taking night sits in turn so now 1in 3 rather than every other one.
Our rock though all this has been the Mcmillan nurse. She coordinates the other agencies, bangs heads together as required and provides practical support. (ie she'll organise a prescription for a different medication make sure it's in stock at the chemist, phone to tell me where and when to collect)
We're both tired and in tears, Marie Curie have just phoned, they're coming again tonight (thank heavens)
If it comes to this for us, we've made no bones about it. We don't want the humiliation, we want to be looked after by professionals in a hospice or nursing home.
Our emotions lurch between guilt, hopelessness, tiredness and wanting it all over. For her sake I hope it's not long.
Edited by How u doing on Wednesday 7th July 09:21
I know it's difficult but are you able to tell us more about mum's outlook? Palliative care isn't always carried out at 'end of life' but often is and it would be useful to know the prognosis for your mum.
As the poster above says, palliation is about making someone comfortable and retain dignity and it's not about interventions or medicines that try to fix things. Commonly, patients will have 'just in case' medications at home with them to help keep them as comfortable and as distress free as possible as they approach the end of their life, typically these include pain relief, nausea releif, anti secretions and a sedative. These can all be adminstered by registered nurses (be it district or hospice), paramedics and of course doctors.
I'd urge you to speak to a local hospice if you've not already, they can support your mum's wishes whereever she'd like to be.
As the poster above says, palliation is about making someone comfortable and retain dignity and it's not about interventions or medicines that try to fix things. Commonly, patients will have 'just in case' medications at home with them to help keep them as comfortable and as distress free as possible as they approach the end of their life, typically these include pain relief, nausea releif, anti secretions and a sedative. These can all be adminstered by registered nurses (be it district or hospice), paramedics and of course doctors.
I'd urge you to speak to a local hospice if you've not already, they can support your mum's wishes whereever she'd like to be.
In Feb my mum told me she had a boil on her cheek. By the end of the month she’d been diagnosed with advanced squamous cell carcinoma of the oral cavity and mandible. Terminal.
The fungating tumour increased in size aggressively and visibly but most distressing of all was the smell. During this time she was still living independently, alone at home. A couple of weeks after a short course of palliative radiotherapy I got a distressed call from her that her mouth was bleeding. I called 999 immediately and got myself to the hospital they’d be taking her to. She lost a litre of blood and after two units of transfusion they managed to stabilise her but it was touch and go, albeit it she was conscious throughout. The A&E consultant suggest and I agreed that she be DNR. In reality it was his call alone as my mum’s LPA for health is not yet granted.
After she stabilised, and within 24 hours of admission she was assessed for fast track continuing health care as being near to end of life. The palliative consultant took me aside and spelt out the scenario. If she started to haemorrhage again then sedation and essentially she will bleed out. That could happen in hours, days, weeks or not at all. Otherwise he estimated she maybe had four weeks.
The options were nursing home or going home. She wanted to go home so that’s what we did. I’m the only child, my dad died six years ago, and there's no other family who can meaningfully care for her. So, I moved in.
We got her home 48 hours after going in. A bed turned up that evening from Millbrook. Between them the local hospice and Macmillan provided care for the weekend until the private company contracted to provide the care package could start. District nurses come every day to replenish the drugs in the syringe driver and administer additional drugs, replace catheter occasionally and whatever else needs attention. They’ve all been brilliant. I have a single number to call for anything we need and it gets sorted out.
There’s a small pharmacy worth of drugs here, including Midazolam to sedate her should she start bleeding out. I was advised to buy black bedding and plenty of black towels to help make the visible effects of that less traumatic for mum (and I suspect me…) should it happen.
Every day is like Groundhog Day. I don’t watch over at night. She has a button she can press to get my attention and that allows me to switch off a bit as long as I’m nearby. My heart races every time it goes off. In fact it’s just after 1am whilst I type this and she just pressed it. Thankfully she just wanted some paracetamol as the pain was starting to build. It normally knocks it on the head.
Every morning I wake up and procrastinate about getting up. At first, I feared what I might find. What if she bled but couldn’t press the button? What if she just went in her sleep? However, as time moves on I now fear the monotonous repetition each day brings. When we were in hospital I had a vision of this time being so valuable to us both as I help her through her last days. That she could feel in control; that we could plan for what she wanted. The reality is that every day consists of getting her out of bed and into her chair, emptying her catheter then intermittently replenishing water, giving paracetamol, trying to get her to drink the Fortisip drinks that give her the only calories she gets due to the pain and discomfort of chewing. All this in the short periods when she is not asleep in the chair. She wanted to watch the England Denmark semi-final with me last night and was asleep again before kick-off. Then the day ends with getting her into bed for the night along with some oral morphine to hopefully give her a pain free night.
In the early days she could use a frame to get from the front-room that is now the only part of the house she sees out to the garden or to the bathroom. However now she is too frail to go anywhere. Today was the first day that she had to use a commode, and in perfect timing, just after the carer had left.
She is getting less lucid and more argumentative. She is in denial about the reality of the situation. I have to tread the really fine line between just leaving everything be and broaching talking about some things that if I knew her thoughts would make things ultimately much easier to deal with. Simple things like what hymns she might like at her funeral are potential minefields to bring up.
It is four weeks today since she came home, and I’ve been here 24x7 all that time. I’ve only seen my daughter and partner fleetingly over that time and my partner has had to deal with all our normal day to day life of school runs, entertaining a five year old and her own work all on her own. I’ve tried to fit in my work during the day here and there but am dropping the ball on a lot of stuff. They are very understanding but I feel like I’m failing. It’s very easy to think that this is valuable time and I should be solely focussed on mum. That’s absolutely the intention I started with but the truth is, if the time-bomb doesn’t go off then this will be a slow, protracted end and unpredicable, which means nobody has any certainty. Then that fact that for large parts of the day I have little that needs to be done, but I do need to be here.
I feel conflicted about what I want to happen. I now wake up hoping that she has passed silently and peacefully in the night. Overwhelmingly I wan’t mum not to suffer and to have dignity. Being at home is the best place for the latter but I don’t think she would feel very dignified when her son empties out her commode. As for not suffering physically the medication works, but mentally it can’t be great sitting the the same place looking at the same view every day and feeling weak and unable to do much. The friends and family that do pop in to say hello are the only variety she gets.
This week a Macmillan nurse visited and, for the first time since we’ve been home, she didn’t take my ‘I’m fine’ at face value. I ended up breaking down and unloading all of the things I’d been thinking through and described above. She asked about alternative strategies and had mum considered what she wants as things decline. I ‘broke’ and said I think we need to consider a nursing home or hospice approach, if not now then soon. She spent some time with mum and worked her way round to that topic, which mum immediately shut down. Once the nurse had left I got the Spanish Inquisition about what I was plotting. So we ended up having a frank conversation about the reality of what’s happening. As upsetting as it was it needed to happen. Nothing much has changed out of it however.
Typing this out and reading it back leaves me conflicted. It is cathartic to unload, but at the same time I hold myself up to the mirror and see myself losing compassion and empathy for my mum, which kills me. But the whole situation is desperately sad and punishingly tough, and not one any of us want to be in. My dad also died of cancer but that was diagnosed way too late and he passed only a week or so after being admitted to hospital. That was hard, but this is so much worse for her, and for me.
Apologies for the thread hijack and the long essay. However to the OP and others in similar situations, I hope it’s a least worth knowing that others are going through it too.
The fungating tumour increased in size aggressively and visibly but most distressing of all was the smell. During this time she was still living independently, alone at home. A couple of weeks after a short course of palliative radiotherapy I got a distressed call from her that her mouth was bleeding. I called 999 immediately and got myself to the hospital they’d be taking her to. She lost a litre of blood and after two units of transfusion they managed to stabilise her but it was touch and go, albeit it she was conscious throughout. The A&E consultant suggest and I agreed that she be DNR. In reality it was his call alone as my mum’s LPA for health is not yet granted.
After she stabilised, and within 24 hours of admission she was assessed for fast track continuing health care as being near to end of life. The palliative consultant took me aside and spelt out the scenario. If she started to haemorrhage again then sedation and essentially she will bleed out. That could happen in hours, days, weeks or not at all. Otherwise he estimated she maybe had four weeks.
The options were nursing home or going home. She wanted to go home so that’s what we did. I’m the only child, my dad died six years ago, and there's no other family who can meaningfully care for her. So, I moved in.
We got her home 48 hours after going in. A bed turned up that evening from Millbrook. Between them the local hospice and Macmillan provided care for the weekend until the private company contracted to provide the care package could start. District nurses come every day to replenish the drugs in the syringe driver and administer additional drugs, replace catheter occasionally and whatever else needs attention. They’ve all been brilliant. I have a single number to call for anything we need and it gets sorted out.
There’s a small pharmacy worth of drugs here, including Midazolam to sedate her should she start bleeding out. I was advised to buy black bedding and plenty of black towels to help make the visible effects of that less traumatic for mum (and I suspect me…) should it happen.
Every day is like Groundhog Day. I don’t watch over at night. She has a button she can press to get my attention and that allows me to switch off a bit as long as I’m nearby. My heart races every time it goes off. In fact it’s just after 1am whilst I type this and she just pressed it. Thankfully she just wanted some paracetamol as the pain was starting to build. It normally knocks it on the head.
Every morning I wake up and procrastinate about getting up. At first, I feared what I might find. What if she bled but couldn’t press the button? What if she just went in her sleep? However, as time moves on I now fear the monotonous repetition each day brings. When we were in hospital I had a vision of this time being so valuable to us both as I help her through her last days. That she could feel in control; that we could plan for what she wanted. The reality is that every day consists of getting her out of bed and into her chair, emptying her catheter then intermittently replenishing water, giving paracetamol, trying to get her to drink the Fortisip drinks that give her the only calories she gets due to the pain and discomfort of chewing. All this in the short periods when she is not asleep in the chair. She wanted to watch the England Denmark semi-final with me last night and was asleep again before kick-off. Then the day ends with getting her into bed for the night along with some oral morphine to hopefully give her a pain free night.
In the early days she could use a frame to get from the front-room that is now the only part of the house she sees out to the garden or to the bathroom. However now she is too frail to go anywhere. Today was the first day that she had to use a commode, and in perfect timing, just after the carer had left.
She is getting less lucid and more argumentative. She is in denial about the reality of the situation. I have to tread the really fine line between just leaving everything be and broaching talking about some things that if I knew her thoughts would make things ultimately much easier to deal with. Simple things like what hymns she might like at her funeral are potential minefields to bring up.
It is four weeks today since she came home, and I’ve been here 24x7 all that time. I’ve only seen my daughter and partner fleetingly over that time and my partner has had to deal with all our normal day to day life of school runs, entertaining a five year old and her own work all on her own. I’ve tried to fit in my work during the day here and there but am dropping the ball on a lot of stuff. They are very understanding but I feel like I’m failing. It’s very easy to think that this is valuable time and I should be solely focussed on mum. That’s absolutely the intention I started with but the truth is, if the time-bomb doesn’t go off then this will be a slow, protracted end and unpredicable, which means nobody has any certainty. Then that fact that for large parts of the day I have little that needs to be done, but I do need to be here.
I feel conflicted about what I want to happen. I now wake up hoping that she has passed silently and peacefully in the night. Overwhelmingly I wan’t mum not to suffer and to have dignity. Being at home is the best place for the latter but I don’t think she would feel very dignified when her son empties out her commode. As for not suffering physically the medication works, but mentally it can’t be great sitting the the same place looking at the same view every day and feeling weak and unable to do much. The friends and family that do pop in to say hello are the only variety she gets.
This week a Macmillan nurse visited and, for the first time since we’ve been home, she didn’t take my ‘I’m fine’ at face value. I ended up breaking down and unloading all of the things I’d been thinking through and described above. She asked about alternative strategies and had mum considered what she wants as things decline. I ‘broke’ and said I think we need to consider a nursing home or hospice approach, if not now then soon. She spent some time with mum and worked her way round to that topic, which mum immediately shut down. Once the nurse had left I got the Spanish Inquisition about what I was plotting. So we ended up having a frank conversation about the reality of what’s happening. As upsetting as it was it needed to happen. Nothing much has changed out of it however.
Typing this out and reading it back leaves me conflicted. It is cathartic to unload, but at the same time I hold myself up to the mirror and see myself losing compassion and empathy for my mum, which kills me. But the whole situation is desperately sad and punishingly tough, and not one any of us want to be in. My dad also died of cancer but that was diagnosed way too late and he passed only a week or so after being admitted to hospital. That was hard, but this is so much worse for her, and for me.
Apologies for the thread hijack and the long essay. However to the OP and others in similar situations, I hope it’s a least worth knowing that others are going through it too.
aspender said:
In Feb my mum told me she had a boil on her cheek. By the end of the month she’d been diagnosed with advanced squamous cell carcinoma of the oral cavity and mandible. Terminal.
The fungating tumour increased in size aggressively and visibly but most distressing of all was the smell. During this time she was still living independently, alone at home. A couple of weeks after a short course of palliative radiotherapy I got a distressed call from her that her mouth was bleeding. I called 999 immediately and got myself to the hospital they’d be taking her to. She lost a litre of blood and after two units of transfusion they managed to stabilise her but it was touch and go, albeit it she was conscious throughout. The A&E consultant suggest and I agreed that she be DNR. In reality it was his call alone as my mum’s LPA for health is not yet granted.
After she stabilised, and within 24 hours of admission she was assessed for fast track continuing health care as being near to end of life. The palliative consultant took me aside and spelt out the scenario. If she started to haemorrhage again then sedation and essentially she will bleed out. That could happen in hours, days, weeks or not at all. Otherwise he estimated she maybe had four weeks.
The options were nursing home or going home. She wanted to go home so that’s what we did. I’m the only child, my dad died six years ago, and there's no other family who can meaningfully care for her. So, I moved in.
We got her home 48 hours after going in. A bed turned up that evening from Millbrook. Between them the local hospice and Macmillan provided care for the weekend until the private company contracted to provide the care package could start. District nurses come every day to replenish the drugs in the syringe driver and administer additional drugs, replace catheter occasionally and whatever else needs attention. They’ve all been brilliant. I have a single number to call for anything we need and it gets sorted out.
There’s a small pharmacy worth of drugs here, including Midazolam to sedate her should she start bleeding out. I was advised to buy black bedding and plenty of black towels to help make the visible effects of that less traumatic for mum (and I suspect me…) should it happen.
Every day is like Groundhog Day. I don’t watch over at night. She has a button she can press to get my attention and that allows me to switch off a bit as long as I’m nearby. My heart races every time it goes off. In fact it’s just after 1am whilst I type this and she just pressed it. Thankfully she just wanted some paracetamol as the pain was starting to build. It normally knocks it on the head.
Every morning I wake up and procrastinate about getting up. At first, I feared what I might find. What if she bled but couldn’t press the button? What if she just went in her sleep? However, as time moves on I now fear the monotonous repetition each day brings. When we were in hospital I had a vision of this time being so valuable to us both as I help her through her last days. That she could feel in control; that we could plan for what she wanted. The reality is that every day consists of getting her out of bed and into her chair, emptying her catheter then intermittently replenishing water, giving paracetamol, trying to get her to drink the Fortisip drinks that give her the only calories she gets due to the pain and discomfort of chewing. All this in the short periods when she is not asleep in the chair. She wanted to watch the England Denmark semi-final with me last night and was asleep again before kick-off. Then the day ends with getting her into bed for the night along with some oral morphine to hopefully give her a pain free night.
In the early days she could use a frame to get from the front-room that is now the only part of the house she sees out to the garden or to the bathroom. However now she is too frail to go anywhere. Today was the first day that she had to use a commode, and in perfect timing, just after the carer had left.
She is getting less lucid and more argumentative. She is in denial about the reality of the situation. I have to tread the really fine line between just leaving everything be and broaching talking about some things that if I knew her thoughts would make things ultimately much easier to deal with. Simple things like what hymns she might like at her funeral are potential minefields to bring up.
It is four weeks today since she came home, and I’ve been here 24x7 all that time. I’ve only seen my daughter and partner fleetingly over that time and my partner has had to deal with all our normal day to day life of school runs, entertaining a five year old and her own work all on her own. I’ve tried to fit in my work during the day here and there but am dropping the ball on a lot of stuff. They are very understanding but I feel like I’m failing. It’s very easy to think that this is valuable time and I should be solely focussed on mum. That’s absolutely the intention I started with but the truth is, if the time-bomb doesn’t go off then this will be a slow, protracted end and unpredicable, which means nobody has any certainty. Then that fact that for large parts of the day I have little that needs to be done, but I do need to be here.
I feel conflicted about what I want to happen. I now wake up hoping that she has passed silently and peacefully in the night. Overwhelmingly I wan’t mum not to suffer and to have dignity. Being at home is the best place for the latter but I don’t think she would feel very dignified when her son empties out her commode. As for not suffering physically the medication works, but mentally it can’t be great sitting the the same place looking at the same view every day and feeling weak and unable to do much. The friends and family that do pop in to say hello are the only variety she gets.
This week a Macmillan nurse visited and, for the first time since we’ve been home, she didn’t take my ‘I’m fine’ at face value. I ended up breaking down and unloading all of the things I’d been thinking through and described above. She asked about alternative strategies and had mum considered what she wants as things decline. I ‘broke’ and said I think we need to consider a nursing home or hospice approach, if not now then soon. She spent some time with mum and worked her way round to that topic, which mum immediately shut down. Once the nurse had left I got the Spanish Inquisition about what I was plotting. So we ended up having a frank conversation about the reality of what’s happening. As upsetting as it was it needed to happen. Nothing much has changed out of it however.
Typing this out and reading it back leaves me conflicted. It is cathartic to unload, but at the same time I hold myself up to the mirror and see myself losing compassion and empathy for my mum, which kills me. But the whole situation is desperately sad and punishingly tough, and not one any of us want to be in. My dad also died of cancer but that was diagnosed way too late and he passed only a week or so after being admitted to hospital. That was hard, but this is so much worse for her, and for me.
Apologies for the thread hijack and the long essay. However to the OP and others in similar situations, I hope it’s a least worth knowing that others are going through it too.
Sorry to hear what you're going through. And thanks for sharing. Similar experience to us, but as a couple we share duties, I can't imagine what it's like to be doing this alone. The fungating tumour increased in size aggressively and visibly but most distressing of all was the smell. During this time she was still living independently, alone at home. A couple of weeks after a short course of palliative radiotherapy I got a distressed call from her that her mouth was bleeding. I called 999 immediately and got myself to the hospital they’d be taking her to. She lost a litre of blood and after two units of transfusion they managed to stabilise her but it was touch and go, albeit it she was conscious throughout. The A&E consultant suggest and I agreed that she be DNR. In reality it was his call alone as my mum’s LPA for health is not yet granted.
After she stabilised, and within 24 hours of admission she was assessed for fast track continuing health care as being near to end of life. The palliative consultant took me aside and spelt out the scenario. If she started to haemorrhage again then sedation and essentially she will bleed out. That could happen in hours, days, weeks or not at all. Otherwise he estimated she maybe had four weeks.
The options were nursing home or going home. She wanted to go home so that’s what we did. I’m the only child, my dad died six years ago, and there's no other family who can meaningfully care for her. So, I moved in.
We got her home 48 hours after going in. A bed turned up that evening from Millbrook. Between them the local hospice and Macmillan provided care for the weekend until the private company contracted to provide the care package could start. District nurses come every day to replenish the drugs in the syringe driver and administer additional drugs, replace catheter occasionally and whatever else needs attention. They’ve all been brilliant. I have a single number to call for anything we need and it gets sorted out.
There’s a small pharmacy worth of drugs here, including Midazolam to sedate her should she start bleeding out. I was advised to buy black bedding and plenty of black towels to help make the visible effects of that less traumatic for mum (and I suspect me…) should it happen.
Every day is like Groundhog Day. I don’t watch over at night. She has a button she can press to get my attention and that allows me to switch off a bit as long as I’m nearby. My heart races every time it goes off. In fact it’s just after 1am whilst I type this and she just pressed it. Thankfully she just wanted some paracetamol as the pain was starting to build. It normally knocks it on the head.
Every morning I wake up and procrastinate about getting up. At first, I feared what I might find. What if she bled but couldn’t press the button? What if she just went in her sleep? However, as time moves on I now fear the monotonous repetition each day brings. When we were in hospital I had a vision of this time being so valuable to us both as I help her through her last days. That she could feel in control; that we could plan for what she wanted. The reality is that every day consists of getting her out of bed and into her chair, emptying her catheter then intermittently replenishing water, giving paracetamol, trying to get her to drink the Fortisip drinks that give her the only calories she gets due to the pain and discomfort of chewing. All this in the short periods when she is not asleep in the chair. She wanted to watch the England Denmark semi-final with me last night and was asleep again before kick-off. Then the day ends with getting her into bed for the night along with some oral morphine to hopefully give her a pain free night.
In the early days she could use a frame to get from the front-room that is now the only part of the house she sees out to the garden or to the bathroom. However now she is too frail to go anywhere. Today was the first day that she had to use a commode, and in perfect timing, just after the carer had left.
She is getting less lucid and more argumentative. She is in denial about the reality of the situation. I have to tread the really fine line between just leaving everything be and broaching talking about some things that if I knew her thoughts would make things ultimately much easier to deal with. Simple things like what hymns she might like at her funeral are potential minefields to bring up.
It is four weeks today since she came home, and I’ve been here 24x7 all that time. I’ve only seen my daughter and partner fleetingly over that time and my partner has had to deal with all our normal day to day life of school runs, entertaining a five year old and her own work all on her own. I’ve tried to fit in my work during the day here and there but am dropping the ball on a lot of stuff. They are very understanding but I feel like I’m failing. It’s very easy to think that this is valuable time and I should be solely focussed on mum. That’s absolutely the intention I started with but the truth is, if the time-bomb doesn’t go off then this will be a slow, protracted end and unpredicable, which means nobody has any certainty. Then that fact that for large parts of the day I have little that needs to be done, but I do need to be here.
I feel conflicted about what I want to happen. I now wake up hoping that she has passed silently and peacefully in the night. Overwhelmingly I wan’t mum not to suffer and to have dignity. Being at home is the best place for the latter but I don’t think she would feel very dignified when her son empties out her commode. As for not suffering physically the medication works, but mentally it can’t be great sitting the the same place looking at the same view every day and feeling weak and unable to do much. The friends and family that do pop in to say hello are the only variety she gets.
This week a Macmillan nurse visited and, for the first time since we’ve been home, she didn’t take my ‘I’m fine’ at face value. I ended up breaking down and unloading all of the things I’d been thinking through and described above. She asked about alternative strategies and had mum considered what she wants as things decline. I ‘broke’ and said I think we need to consider a nursing home or hospice approach, if not now then soon. She spent some time with mum and worked her way round to that topic, which mum immediately shut down. Once the nurse had left I got the Spanish Inquisition about what I was plotting. So we ended up having a frank conversation about the reality of what’s happening. As upsetting as it was it needed to happen. Nothing much has changed out of it however.
Typing this out and reading it back leaves me conflicted. It is cathartic to unload, but at the same time I hold myself up to the mirror and see myself losing compassion and empathy for my mum, which kills me. But the whole situation is desperately sad and punishingly tough, and not one any of us want to be in. My dad also died of cancer but that was diagnosed way too late and he passed only a week or so after being admitted to hospital. That was hard, but this is so much worse for her, and for me.
Apologies for the thread hijack and the long essay. However to the OP and others in similar situations, I hope it’s a least worth knowing that others are going through it too.
Tough day yesterday, rapid response out 5 times trying to sedate her. Cock up with the syringe driver paper work delayed things. Taking it in turns to try to comfort her, screaming could be heard at the end of the drive, and crying for her mummy.
Syringe driver in place now, rapid response out again in the small hours to adjust the meds, Sounded like a torture chamber. We've a baby monitor in her room so we're now sat listening to laboured breathing.
Most people involved have been brilliant, however the process is barbaric and inhumane. I think my wife was hoping to make peace with her mum, it's not been the easiest of relationships through the years. Not likely to happen now, exacerbated by pain, drugs and enforced proximity some horrible things have been said, whilst my wife bites lip.
My MIL passed last Friday, a blessed release. So now I've had a chance to think about the process.
Hospice at home in some situations may work well.
Ours was moving and deteriorating quickly, so were always on the back foot, not knowing what was coming next.
The clinician signing off on the drugs had never met us or the patient, information they were working to was 2nd/3rd hand.
DN visits once a week + regular phone calls from macmillan nurse asking us how it was going, difficult to express when you've no medical training, have no idea what to expect or when.
Some questionable decisions, so when we ask for something to help her sleep through the night (distress/panic/agitation/maybe pain too but hard to extrapolate one from the other). We were told there were ethical problems around sedation, and we needed a care based solution.
This was us taking it in turns to sit up all night with her. We were both exhausted so probably not in the best place for carers.
Fortunately Marie Curie threw us a lifeline, a (wonderful) nurse to provide the occasional night sit.
Put to bed and told not to mobise, I think this happened a couple of days too early. Additional stress for someone with only 14 days left.
Syringe driver for cocktail of morphine and anti agitation drugs, probably a day too late. She knew what was going on, so climbing the walls (literally) in distress and pain.
We were vulnerable and out of our depth for months. The front line staff we met were largely wonderful. (Some laughable) But (for us) the system was deeply flawed.
Hospice at home in some situations may work well.
Ours was moving and deteriorating quickly, so were always on the back foot, not knowing what was coming next.
The clinician signing off on the drugs had never met us or the patient, information they were working to was 2nd/3rd hand.
DN visits once a week + regular phone calls from macmillan nurse asking us how it was going, difficult to express when you've no medical training, have no idea what to expect or when.
Some questionable decisions, so when we ask for something to help her sleep through the night (distress/panic/agitation/maybe pain too but hard to extrapolate one from the other). We were told there were ethical problems around sedation, and we needed a care based solution.
This was us taking it in turns to sit up all night with her. We were both exhausted so probably not in the best place for carers.
Fortunately Marie Curie threw us a lifeline, a (wonderful) nurse to provide the occasional night sit.
Put to bed and told not to mobise, I think this happened a couple of days too early. Additional stress for someone with only 14 days left.
Syringe driver for cocktail of morphine and anti agitation drugs, probably a day too late. She knew what was going on, so climbing the walls (literally) in distress and pain.
We were vulnerable and out of our depth for months. The front line staff we met were largely wonderful. (Some laughable) But (for us) the system was deeply flawed.
Edited by How u doing on Wednesday 14th July 08:29
Deepest sympathies to OP and the rest of you that are going through similar. We helped care for MIL through her last few months and even with help it is an unimaginably difficult thing. I'd promised myself after that experience to get involved in something around ethical end of life care but I've not been able to bring myself to revisit the emotions yet. Maybe I can use this thread to spur me on.
We went through all this with my mum. With us all being at work through the day, it was tough as she was just home with the dogs - barely able to even raise herself off the sofa.
They were her wishes, and we supported her best we could. For her, it was clear that she was of the opinion that as soon as she went into hospital, that would be the end.
It was already planned out that she would pass at home, but it just got to a point where she was needing that many meds, she had to get round the clock care.
She eventually ended up at the Dougie Mac hospice which was brilliant. She actually seemed to have a bit more quality of life, and would often have multiple visits and partake in activities with the other patients, though it was really tough for her being away from us all.
The last 6 months were very difficult, and it's not particularly nice to say or discuss, but it was such a relief for us all when she finally went.
Keeping your mum as comfortable as possible is the key really.
They were her wishes, and we supported her best we could. For her, it was clear that she was of the opinion that as soon as she went into hospital, that would be the end.
It was already planned out that she would pass at home, but it just got to a point where she was needing that many meds, she had to get round the clock care.
She eventually ended up at the Dougie Mac hospice which was brilliant. She actually seemed to have a bit more quality of life, and would often have multiple visits and partake in activities with the other patients, though it was really tough for her being away from us all.
The last 6 months were very difficult, and it's not particularly nice to say or discuss, but it was such a relief for us all when she finally went.
Keeping your mum as comfortable as possible is the key really.
NorthDave said:
I'm in tears reading this thread.
Unfortunately I am pretty sure I will have to go through something similar in the not too distant future with my Mum. Thanks for everyone's input I think it really helps to know what is coming and the different approaches available.
Stay strong!
Hospice at home seems to be a policy now, it's a case of one size certainly doesn't fit all. Unfortunately I am pretty sure I will have to go through something similar in the not too distant future with my Mum. Thanks for everyone's input I think it really helps to know what is coming and the different approaches available.
Stay strong!
The various agencies involved aren't very joined up. Just had a call from the funeral directors, behind the scenes they've been chasing the death certificate. GP didn't know she'd passed so nothing issued. GP phoned us to check!
It’s nearly a week on from when I wrote an overly long post, and it’s been an eventful one.
Firstly, apologies to the OP as in my first post I never really addressed the thrust of his question. Simply put, as I understand it, if somebody is home for end of life care, then it’s solely about making that person as comfortable as can be. My mum was on various meds for AF and blood pressure issues which were all stopped when she came home for EOL care with instructions not to be re-admitted. Now she is just on a syringe driver cocktail of pain relief (morphine), sedation (midazolam) and associated other drugs that go along with those such as anti-sickness. All at a relatively low level so far.
Back to our experiences.
Over the weekend mum and I had more of a chat and the long and short of it was she accepted that it was time to consider other options. I asked her just to talk to the Macmillan nurse when possible to understand those, and that it was all her decision, I’d support whatever she decides.
Then Monday happened. Just before 9am I checked in on her and she was fast asleep in the bed. I jumped on my 9am work call which finished unusually quickly by 9:15. Again poked my head around the door and still asleep. Went back to my table in the kitchen and a few minutes later heard unusual coughing. She was holding a blood soaked tissue to her mouth and it was clear the tumour site was bleeding pretty heavily both from the outside and inside of her mouth. She was coughing and spitting out big clots of blood.
Now, this was always a possibility, and everything I’d been told was that this would be ‘it’. She was very distressed so instincts kicked in. I had two things I was allowed to do: firstly apply adrenaline to the exterior of the tumour wound to try to constrict blood vessels. Secondly I could administer a child-strength oral dose of Midazolam to try and calm her a bit. Did both of those quickly and then dialled the number I had to get support. That went to voicemail. A DN had once told me to call 999 in this scenario as the rapid response DN SLA was 2 hours in any case. The paramedics could administer the on-hand drugs that I couldn’t. So called 999 and 20 mins later an ambulance arrived. However by that time the bleeding had stopped. In hindsight it looked much worse than it actually was, but I’d been prepped to expect that bleeding = the end. My mum was conscious throughout and we’d said goodbyes.
I’ll skip the rest of the story about a comedy of errors in paperwork, ambiguities in the advanced care plan etc. But suffice to say by about two hours after it all kicked off, we were back on our own, mum in a blood stained nightie and bedding and me wondering WTF just happened. The daily DNs turned up and knew what had happened. Did their normal stuff, said some empathetic words and went again. I spent the rest of the day worried sick it would start again and the same farce would ensue.
Thankfully the DN did arrange for an extra care visit later that day and an amazing carer from the local hospice came and helped clean up what I couldn’t, and settled mum down for the night.
Since then she’s been much weaker. No more bleeding but is now hardly taking in any calories and sleeping much more. They’ve upped the dose of Midazolam slightly.
So today, the Macmillan nurse came and spoke to mum. She’s decided to go into care. Ideally this would be the local hospice but they are full, so it’s a local nursing home. There’s a bunch of stuff that needs to happen first, including mum having a clear PCR test, which won’t be fun for her. So I don’t know when she’ll likely be going in. The Macmillan nurse things she is probably in her final couple of weeks anyway. This leaves me no less conflicted than I was before. Everybody is saying this is the right thing to do, and I know it is for her and me. But it feels like failure in a way. If she goes in any passes a day or two later I’ll be gutted that we didn’t stick it out at home, but at least I’ll be able to just be her son for those days. And hopefully, she’ll last out longer and be somewhere with professional care on hand at all times helping her be more comfortable. In an ideal world she’ll make it to her 80th birthday in four weeks time but that’s unlikely.
Firstly, apologies to the OP as in my first post I never really addressed the thrust of his question. Simply put, as I understand it, if somebody is home for end of life care, then it’s solely about making that person as comfortable as can be. My mum was on various meds for AF and blood pressure issues which were all stopped when she came home for EOL care with instructions not to be re-admitted. Now she is just on a syringe driver cocktail of pain relief (morphine), sedation (midazolam) and associated other drugs that go along with those such as anti-sickness. All at a relatively low level so far.
Back to our experiences.
Over the weekend mum and I had more of a chat and the long and short of it was she accepted that it was time to consider other options. I asked her just to talk to the Macmillan nurse when possible to understand those, and that it was all her decision, I’d support whatever she decides.
Then Monday happened. Just before 9am I checked in on her and she was fast asleep in the bed. I jumped on my 9am work call which finished unusually quickly by 9:15. Again poked my head around the door and still asleep. Went back to my table in the kitchen and a few minutes later heard unusual coughing. She was holding a blood soaked tissue to her mouth and it was clear the tumour site was bleeding pretty heavily both from the outside and inside of her mouth. She was coughing and spitting out big clots of blood.
Now, this was always a possibility, and everything I’d been told was that this would be ‘it’. She was very distressed so instincts kicked in. I had two things I was allowed to do: firstly apply adrenaline to the exterior of the tumour wound to try to constrict blood vessels. Secondly I could administer a child-strength oral dose of Midazolam to try and calm her a bit. Did both of those quickly and then dialled the number I had to get support. That went to voicemail. A DN had once told me to call 999 in this scenario as the rapid response DN SLA was 2 hours in any case. The paramedics could administer the on-hand drugs that I couldn’t. So called 999 and 20 mins later an ambulance arrived. However by that time the bleeding had stopped. In hindsight it looked much worse than it actually was, but I’d been prepped to expect that bleeding = the end. My mum was conscious throughout and we’d said goodbyes.
I’ll skip the rest of the story about a comedy of errors in paperwork, ambiguities in the advanced care plan etc. But suffice to say by about two hours after it all kicked off, we were back on our own, mum in a blood stained nightie and bedding and me wondering WTF just happened. The daily DNs turned up and knew what had happened. Did their normal stuff, said some empathetic words and went again. I spent the rest of the day worried sick it would start again and the same farce would ensue.
Thankfully the DN did arrange for an extra care visit later that day and an amazing carer from the local hospice came and helped clean up what I couldn’t, and settled mum down for the night.
Since then she’s been much weaker. No more bleeding but is now hardly taking in any calories and sleeping much more. They’ve upped the dose of Midazolam slightly.
So today, the Macmillan nurse came and spoke to mum. She’s decided to go into care. Ideally this would be the local hospice but they are full, so it’s a local nursing home. There’s a bunch of stuff that needs to happen first, including mum having a clear PCR test, which won’t be fun for her. So I don’t know when she’ll likely be going in. The Macmillan nurse things she is probably in her final couple of weeks anyway. This leaves me no less conflicted than I was before. Everybody is saying this is the right thing to do, and I know it is for her and me. But it feels like failure in a way. If she goes in any passes a day or two later I’ll be gutted that we didn’t stick it out at home, but at least I’ll be able to just be her son for those days. And hopefully, she’ll last out longer and be somewhere with professional care on hand at all times helping her be more comfortable. In an ideal world she’ll make it to her 80th birthday in four weeks time but that’s unlikely.
My dad is in his mid 70s and despite being windowed nearly 20 years ago has been relatively healthy and lived a very normal, if quiet, retirement and was completely independent and very able.
Last year dad had recurring bouts of sepsis which resulted in 12 back-to-back 999 ambulance trips to hospital. Following abx and a short stay he was sent home each time. Within 24-72 hours he again had sepsis and was back at the hospital.
It was bad timing with Covid as they really didn’t want people in hospital.
Each time he came out he insisted he wanted to go home and each time was provided with more and more at home care each time. However, as he pretty much refused their or our help and the sepsis got worse each time leading to a lot of additional mental and physical problems he kept going back to the hospital.
We tried to help him and the carers but he wouldn’t take meds and wouldn’t ask for help. Often either us or the carers would find him on the floor in a very bad way as he had been there for some time yet he would still say he was fine and refuse help.
The combination of Covid pressure on hospital discharges plus it being his decision where to be and what help to accept (or not) meant this was a very difficult few months. There is very little family locally which also didn’t help.
During his last admission in January the consultant said that he was on an end of life pathway and that active treatment would be stopped. At this point he was discharged to a nursing home which was initially paid for by SS/NHS. As he stabilised once in the nursing home and the sepsis didn’t recur they soon stopped paying and he is now self funding.
Despite being much better mentally and physically he won’t get out of bed and won’t discuss things like selling his house or car - neither of which he is using and while he can’t/won’t rehabilitate will remain the case. Again, his decision but difficult as we can see he will eventually end up backed into a corner but he won’t.
So, while this is frustrating and not a situation we thought we would be in a year ago we take solace from the fact that he is now being properly cared for (and the stability in his health confirms this) and we do not have the constant worry of getting a call from him, a carer or a neighbour that something has happened.
It is a weird, almost limbo, state though while he is on the end of life pathway but is stable and doesn’t want to discuss anything with us or his GP
Last year dad had recurring bouts of sepsis which resulted in 12 back-to-back 999 ambulance trips to hospital. Following abx and a short stay he was sent home each time. Within 24-72 hours he again had sepsis and was back at the hospital.
It was bad timing with Covid as they really didn’t want people in hospital.
Each time he came out he insisted he wanted to go home and each time was provided with more and more at home care each time. However, as he pretty much refused their or our help and the sepsis got worse each time leading to a lot of additional mental and physical problems he kept going back to the hospital.
We tried to help him and the carers but he wouldn’t take meds and wouldn’t ask for help. Often either us or the carers would find him on the floor in a very bad way as he had been there for some time yet he would still say he was fine and refuse help.
The combination of Covid pressure on hospital discharges plus it being his decision where to be and what help to accept (or not) meant this was a very difficult few months. There is very little family locally which also didn’t help.
During his last admission in January the consultant said that he was on an end of life pathway and that active treatment would be stopped. At this point he was discharged to a nursing home which was initially paid for by SS/NHS. As he stabilised once in the nursing home and the sepsis didn’t recur they soon stopped paying and he is now self funding.
Despite being much better mentally and physically he won’t get out of bed and won’t discuss things like selling his house or car - neither of which he is using and while he can’t/won’t rehabilitate will remain the case. Again, his decision but difficult as we can see he will eventually end up backed into a corner but he won’t.
So, while this is frustrating and not a situation we thought we would be in a year ago we take solace from the fact that he is now being properly cared for (and the stability in his health confirms this) and we do not have the constant worry of getting a call from him, a carer or a neighbour that something has happened.
It is a weird, almost limbo, state though while he is on the end of life pathway but is stable and doesn’t want to discuss anything with us or his GP
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