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Dying at home and palliative care

Ali_EM

Registered User
Dec 23, 2021
14
0
Hi,

My father is in the end stages of his dementia journey and now increasingly frail and looking like the end is coming.
He now is completely non communicative and bed bound throughout the day.
He still has good food and drink intake.
We care for him at home and would like his passing to happen here in peace.

Does anyone know who to contact regarding arranging palliative care in the community?
How does the process work? Is it arranged via GP or other routes? He looks very poorly to me and I’m concerned his passing may be imminent, but my mum and his main carer say he has been like this for the last few months. I certainly feel like the deterioration is occurring faster these days. As a family we don’t want any further hospital admissions which we will discuss with the GP when they reopen on Wednesday.

Any info/tips or experience that people have on arranging home support and care in preparation for, and during the dying process would be much appreciated.

Thank you
 

CAL Y

Registered User
Jul 17, 2021
283
0
@Ali_EM . If, as you say your father is still eating and drinking then maybe the time isnt imminent.
In my case, I arranged palliative care through the G.P.
If there is hospice care home nursing available in your area be sure to ask for it.
This is what I did when my husband was dying and the local services were very good.
I was given district nurses, hospice nurses, carers 3 times a day and in the last 10 days overnight sitters from Marie Curie.
All of this came free of charge. I am in Devon by the way.
Of course all of this happened because the g.p. recognised that the end was approaching so I suppose that the g.p. should be your first call.
If you think it’s necessary call the out of hours line or 111.
Hope this helps.
 

Ali_EM

Registered User
Dec 23, 2021
14
0
Hi @CAL Y thank you for your advice.

What were the signs for you that your husband was dying? Did you speak to the GP before the death process became evident just so that the relative services were aware? I'm thinking it's better to alert the G.P earlier on rather than trying to arrange all the above as an emergency at a later date?
 

Palerider

Registered User
Aug 9, 2015
3,050
0
North West
Hi,

My father is in the end stages of his dementia journey and now increasingly frail and looking like the end is coming.
He now is completely non communicative and bed bound throughout the day.
He still has good food and drink intake.
We care for him at home and would like his passing to happen here in peace.

Does anyone know who to contact regarding arranging palliative care in the community?
How does the process work? Is it arranged via GP or other routes? He looks very poorly to me and I’m concerned his passing may be imminent, but my mum and his main carer say he has been like this for the last few months. I certainly feel like the deterioration is occurring faster these days. As a family we don’t want any further hospital admissions which we will discuss with the GP when they reopen on Wednesday.

Any info/tips or experience that people have on arranging home support and care in preparation for, and during the dying process would be much appreciated.

Thank you
In this situation your dads GP is the one to organise end of life medications and also community palliative care nursing to visit if needed should they be required, my mum came close a year ago and her GP has anticipated it ever since, so mum has an end of life medication pack at the care home if it should be needed and the care home has access to palitative care nurses if needed.
 

CAL Y

Registered User
Jul 17, 2021
283
0
Hi @CAL Y thank you for your advice.

What were the signs for you that your husband was dying? Did you speak to the GP before the death process became evident just so that the relative services were aware? I'm thinking it's better to alert the G.P earlier on rather than trying to arrange all the above as an emergency at a later date?
Hello @Ali_EM I’m sorry that I didn’t mention it but there was an added complication. My husband had also been diagnosed with cancer.
Even so. If I were you I would try to get the ball rolling so that the g.p. Is aware of the situation.
when people are at end of life they can stop eating and drinking for longer than you would imagine. Try not to be too distressed by this as it is a sign that the body is shutting down and the person does not actually need to eat and drink.
They will also sleep longer and longer.
Its better to put the g.p. In the picture sooner as you don’t need the added upset if it becomes an emergency situation.
I wish you strength to deal with what lies ahead.
 

Duggies-girl

Registered User
Sep 6, 2017
3,224
0
Hi @Ali_EM like @CAL Y my dad had also been diagnosed with cancer and he was referred to the hospice in 2018 by his oncology team. I used to get a monthly telephone call from the hospice to ask how dad was and he was generally fine until 2020 when he started to get worse. Like @CAL Y we were given carer visits but only twice a day and we were also given a bed for dad to make things easier for him and for us. This was arranged with the hospice through dads GP and they were very helpful.

On reflection it was not enough, apart from the two visits a day I was basically left to deal with things myself. The district nurses were not very helpful and I was untrained to deal with things on my own. I muddled through with the help of my husband but it could have been made a lot easier. I would say that you need to make it very clear how much you are prepared to do and ask for as much help as possible. I was willing to do anything for dad but in reality it was harder than I expected. I was not trained and things that should have been simple were actually difficult because I did not know the easy ways. Simple things like moving back dad up the bed because he would tend to slip downward when in a sitting position. My husband and I struggled to pull dad back up until the carer showed me how to just move the sheets which moved dad with almost no effort. Little things like that can make a big difference to the comfort of the patient.

I also wish you lots of strength because it is very hard.
 

Louie16

Registered User
Mar 31, 2020
45
0
Hello all,
Re bringing parent home to die from a nursing home. I was wondering if anyone here has done this or is in process of ? Mum has mixed dementia and been in nursing home for last 15 months, she is immobile and generally in bed majority of time now , but still eating and drinking most days. Her language has deteriorated greatly over last few years but sometimes she is very lucid and coherent, expressing need to be at home and says family consistently at these times. Of course this feels dreadful to hear , as so many others must also be experiencing. I could manage caring for mum for a specific period , about 3 months for example, but really don't think I could manage caring for her any longer than this as I've no other family nearby. As essential carer I'm still allowed to go and see her, feed her lunch 4 or 5 times a week although the manager appears to be wanting me to reduce these visits due to staff testing positive, I think to decrease footfall in the home. For now I'm still avoiding reducing my visits. How is it possible to tell when someone is nearer their time ? The home only consider end of life as last 48 hours, so she's not yet been stated as this by GP. What other help is available, bit concerned as social care in such disarray and very little funding etc. ? Thanks so much for any advice people have.
 

CAL Y

Registered User
Jul 17, 2021
283
0
@Louie16 . I would strongly advise against trying to bring your Mum home
.
My husband didn’t go into a nursing home and when it became obvious that the end was near I was able to keep him at home with a lot of help from local services, Hospiscare nurses, carers etc but even with my sister and brother in law on call for the last 2 weeks, they stayed in a local B and B, it is physically impossible without damaging your own health.
Even with carers in 4 times a day , there were many times that my husband needed personal care before or after they came.
I still decided to keep him at home but 8 weeks later I’m still exhausted and sleeping 12 hours at a time.
A person with advanced dementia needs a team of people 24/7.
Please think very carefully about taking on this tiring and heartbreaking task.
 

canary

Registered User
Feb 25, 2014
18,140
0
South coast
sometimes she is very lucid and coherent, expressing need to be at home and says family consistently at these times.
Please be aware that she may not be expressing what you think she is.

In mums last year of her life mum would constantly beg me to take her home. The home she was thinking of, though, was not the home that she had lived in for the last 30 years before moving to her care home, but her childhood home that had been bombed in the war. She would also say that she wanted to be with her family, but she did not mean me and my family (or even my invisible bother) - she meant her parents and her siblings who had all died many years previously. She would say that she had to go home because all her family were just waiting to look after her. It was heartbreaking because it was truly an impossible request
 

Louie16

Registered User
Mar 31, 2020
45
0
Please be aware that she may not be expressing what you think she is.

In mums last year of her life mum would constantly beg me to take her home. The home she was thinking of, though, was not the home that she had lived in for the last 30 years before moving to her care home, but her childhood home that had been bombed in the war. She would also say that she wanted to be with her family, but she did not mean me and my family (or even my invisible bother) - she meant her parents and her siblings who had all died many years previously. She would say that she had to go home because all her family were just waiting to look after her. It was heartbreaking because it was truly an impossible request
Ah yes I can see that can be what they're thinking of way back, it's so upsetting hearing them say it, I think I automatically assume she's asking me to take her home. but she could of course be remembering her childhood home. Thankyou very much for reminding me of this.
 

Louie16

Registered User
Mar 31, 2020
45
0
@Louie16 . I would strongly advise against trying to bring your Mum home
.
My husband didn’t go into a nursing home and when it became obvious that the end was near I was able to keep him at home with a lot of help from local services, Hospiscare nurses, carers etc but even with my sister and brother in law on call for the last 2 weeks, they stayed in a local B and B, it is physically impossible without damaging your own health.
Even with carers in 4 times a day , there were many times that my husband needed personal care before or after they came.
I still decided to keep him at home but 8 weeks later I’m still exhausted and sleeping 12 hours at a time.
A person with advanced dementia needs a team of people 24/7.
Please think very carefully about taking on this tiring and heartbreaking task.
Thankyou very much for your thoughts and shared experiences, it must be so extremely exhausting for you. I hope it goes fairly smoothly for you . 🙏🙏
 

Wildflowerlady

Registered User
Sep 30, 2019
912
0
My mums palliative care at home was arranged by her GP however mum did not have the complication of dementia but had liver cancer. Staff from the local hospice visited one evening after I had contacted the GP and insisted on a home visit as mum was distressed and in pain. Mum was put on what was called ' Fast track funding'. A hospital type bed was delivered within a day or two and put in mums lounge. Mum had been sleeping in there since discharge from a stay in hospital just a short time before as she could not manage the stairs. The district nurses were also coming in so her house seemed pretty busy at the time but she did not want to go into the hospice when a place became available a couple of days later, always stating she wanted do die in her own home. The hospice also arranged some night sitters but was limited due to availability but I said I could stay overnight on nights they couldn't do so did that around three nights staying on the sofa so that dad ( who did have undiagnosed at that time and early signs of dementia could get to his bed ) . My mum was well cared for by the people that came in but to be honest her care was very short as she passed a week after hospice started to come in so not long at all. A second scan had been done at the hospital 10 days earlier so my guess is they knew had bad mums situation with the cancer had got not that she had been told she definitely had cancer but only suspected from a scan around 5 months earlier. My mum was eating a bit until the last 48 hours of her life but then slipped into a deep sleep and passed peacefully this was in 2016. My dad passed in January 2021 after a fairly short stay in a CH due to advanced dementia and a stroke. If your dad is still eating well @Ali_EM his end of life time may be a reasonable longer than anticipated. My dads appetite had started to diminish at least 2 months before he was admitted to the CH for assessment of his dementia and he was only really eating in the morning and little else the rest of the day. Dad even began to drink less as his carers would have to leave his drink on the table only to find it sometimes there on the next visit. Dad was admitted to hospital as well from the CH and then back to the CH as End Of Life so was in fact at least around 4 months of poor/no eating until he passed. I wish you well on this difficult journey and when your dads time come wish it to be peaceful wherever that may be.
 

He1en

Registered User
Dec 28, 2021
17
0
Hi @Ali_EM like @CAL Y my dad had also been diagnosed with cancer and he was referred to the hospice in 2018 by his oncology team. I used to get a monthly telephone call from the hospice to ask how dad was and he was generally fine until 2020 when he started to get worse. Like @CAL Y we were given carer visits but only twice a day and we were also given a bed for dad to make things easier for him and for us. This was arranged with the hospice through dads GP and they were very helpful.

On reflection it was not enough, apart from the two visits a day I was basically left to deal with things myself. The district nurses were not very helpful and I was untrained to deal with things on my own. I muddled through with the help of my husband but it could have been made a lot easier. I would say that you need to make it very clear how much you are prepared to do and ask for as much help as possible. I was willing to do anything for dad but in reality it was harder than I expected. I was not trained and things that should have been simple were actually difficult because I did not know the easy ways. Simple things like moving back dad up the bed because he would tend to slip downward when in a sitting position. My husband and I struggled to pull dad back up until the carer showed me how to just move the sheets which moved dad with almost no effort. Little things like that can make a big difference to the comfort of the patient.

I also wish you lots of strength because it is very hard.

My mums palliative care at home was arranged by her GP however mum did not have the complication of dementia but had liver cancer. Staff from the local hospice visited one evening after I had contacted the GP and insisted on a home visit as mum was distressed and in pain. Mum was put on what was called ' Fast track funding'. A hospital type bed was delivered within a day or two and put in mums lounge. Mum had been sleeping in there since discharge from a stay in hospital just a short time before as she could not manage the stairs. The district nurses were also coming in so her house seemed pretty busy at the time but she did not want to go into the hospice when a place became available a couple of days later, always stating she wanted do die in her own home. The hospice also arranged some night sitters but was limited due to availability but I said I could stay overnight on nights they couldn't do so did that around three nights staying on the sofa so that dad ( who did have undiagnosed at that time and early signs of dementia could get to his bed ) . My mum was well cared for by the people that came in but to be honest her care was very short as she passed a week after hospice started to come in so not long at all. A second scan had been done at the hospital 10 days earlier so my guess is they knew had bad mums situation with the cancer had got not that she had been told she definitely had cancer but only suspected from a scan around 5 months earlier. My mum was eating a bit until the last 48 hours of her life but then slipped into a deep sleep and passed peacefully this was in 2016. My dad passed in January 2021 after a fairly short stay in a CH due to advanced dementia and a stroke. If your dad is still eating well @Ali_EM his end of life time may be a reasonable longer than anticipated. My dads appetite had started to diminish at least 2 months before he was admitted to the CH for assessment of his dementia and he was only really eating in the morning and little else the rest of the day. Dad even began to drink less as his carers would have to leave his drink on the table only to find it sometimes there on the next visit. Dad was admitted to hospital as well from the CH and then back to the CH as End Of Life so was in fact at least around 4 months of poor/no eating until he passed. I wish you well on this difficult journey and when your dads time come wish it to be peaceful wherever that may be.

Hello all,
Re bringing parent home to die from a nursing home. I was wondering if anyone here has done this or is in process of ? Mum has mixed dementia and been in nursing home for last 15 months, she is immobile and generally in bed majority of time now , but still eating and drinking most days. Her language has deteriorated greatly over last few years but sometimes she is very lucid and coherent, expressing need to be at home and says family consistently at these times. Of course this feels dreadful to hear , as so many others must also be experiencing. I could manage caring for mum for a specific period , about 3 months for example, but really don't think I could manage caring for her any longer than this as I've no other family nearby. As essential carer I'm still allowed to go and see her, feed her lunch 4 or 5 times a week although the manager appears to be wanting me to reduce these visits due to staff testing positive, I think to decrease footfall in the home. For now I'm still avoiding reducing my visits. How is it possible to tell when someone is nearer their time ? The home only consider end of life as last 48 hours, so she's not yet been stated as this by GP. What other help is available, bit concerned as social care in such disarray and very little funding etc. ? Thanks so much for any advice people have.
I am so sorry for your situation. Please really consider your needs as well as your mum's. I would strongly advise leaving her where she is for lots of reasons, many mentioned by others here. My mum was first on end of life January 2021, five times later we are just going through another spell of the doctors thinking it's the end but as is common with my mum 3 weeks later she is still clinging on. This can be a very long, stressful period. If your mum is well cared for in the home then it gives you chance to go home, recharge your batteries and spend what quality time you can with her. In my experience it is no fun trying to manage their needs at home, they are better somewhere with specialist staff and all the medication (and paperwork that the medication entails) in place. I don't have many regrets but I do wish I had passed mum's care over to others earlier so that we could just spend 'nice' time together. I hope this helps a little with what is a complex decision x
 

Louie16

Registered User
Mar 31, 2020
45
0
I am so sorry for your situation. Please really consider your needs as well as your mum's. I would strongly advise leaving her where she is for lots of reasons, many mentioned by others here. My mum was first on end of life January 2021, five times later we are just going through another spell of the doctors thinking it's the end but as is common with my mum 3 weeks later she is still clinging on. This can be a very long, stressful period. If your mum is well cared for in the home then it gives you chance to go home, recharge your batteries and spend what quality time you can with her. In my experience it is no fun trying to manage their needs at home, they are better somewhere with specialist staff and all the medication (and paperwork that the medication entails) in place. I don't have many regrets but I do wish I had passed mum's care over to others earlier so that we could just spend 'nice' time together. I hope this helps a little with what is a complex decision x
Yes thankyou this is very helpful. I can empathize with your situation and the ongoing stressful situation you're going through. Sometimes we have a nice time, others are pretty awful with her lashing out hard and looking like she absolutely hates me. I think it's because I've put her there, she does refer to me leaving her there at times. So that's pretty difficult.
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,082
0
High Peak
Hi @Ali_EM and @Louie16 I'm so sorry to hear you are both at this late stage with your loved ones. But there is a reason they are where they are - they need 24/7 care from a whole team of people.

The problem is simply this: you don't have an end date. I'm sure many of us would choose to have our loved ones at home for their last few days, providing we knew for sure it was their last. But as others have said, sometimes the person who is supposedly at 'end of life' rallies and that 'last few days' can become weeks or even months. Then the prospect of home care is a completely different scenario.

@Louie16 Please don't think you put your mum in the care home - dementia did that, not you. All you did was to ensure she got the care she needs. If she could understand, i.e. pre-dementia, she would thank you not blame you. She has a terminal illness and that is not your fault in any way.
 

Louie16

Registered User
Mar 31, 2020
45
0
Hi @Ali_EM and @Louie16 I'm so sorry to hear you are both at this late stage with your loved ones. But there is a reason they are where they are - they need 24/7 care from a whole team of people.

The problem is simply this: you don't have an end date. I'm sure many of us would choose to have our loved ones at home for their last few days, providing we knew for sure it was their last. But as others have said, sometimes the person who is supposedly at 'end of life' rallies and that 'last few days' can become weeks or even months. Then the prospect of home care is a completely different scenario.

@Louie16 Please don't think you put your mum in the care home - dementia did that, not you. All you did was to ensure she got the care she needs. If she could understand, i.e. pre-dementia, she would thank you not blame you. She has a terminal illness and that is not your fault in any way.
Thankyou for your kind thoughts. Yes it is so hard to see ahead , what difficult journeys we are all on.
 

Alie 5

New member
Jun 19, 2021
3
0
@Louie16 . I would strongly advise against trying to bring your Mum home
.
My husband didn’t go into a nursing home and when it became obvious that the end was near I was able to keep him at home with a lot of help from local services, Hospiscare nurses, carers etc but even with my sister and brother in law on call for the last 2 weeks, they stayed in a local B and B, it is physically impossible without damaging your own health.
Even with carers in 4 times a day , there were many times that my husband needed personal care before or after they came.
I still decided to keep him at home but 8 weeks later I’m still exhausted and sleeping 12 hours at a time.
A person with advanced dementia needs a team of people 24/7.
Please think very carefully about taking on this tiring and heartbreaking task.
I would think very carefully & consult as many experts as possible before taking your mother home. We are still caring for my mother in the family home. She can barely stand now & is struggling to understand what we say or to make any sense, we are having great difficulty getting her to drink as I think she has forgotten how to swallow liquid & tries to chew it then pulls a face & rejects it, so we have to incorporate liquid into her food as much as we can. She can't feed herself anymore & will sometime reach into her mouth & take the food out. She needs constant supervision 24hrs a day as she forgets that she can't walk safely & has lost any sense of not wanting to be a burden & expects someone to be there every second to meet her needs or she will try to do things on her own & fall. She has zero patience now. On the subject of wanting to go home, my mother is already at home with her family, but still has occasional melt downs, often in the middle of the night, when she begs us to take her home. Its very frustrating & upsetting because there's nothing we can do as she's already at home, she just doesn't recognize where she is & gets very scared & upset. My mother has been in this kind of state with the drinking for at least 6 months & has been incontinent & incapable of dressing/feeding herself for about 2yrs now. There have been times when we thought she might be approaching the end & then she perks up. Its incredibly stressful & upsetting. You would need to ask yourself if you have the time, mental strength & patience to cope with possibly months, maybe even years of this. We currently have the added issue of many of my mother's carers being off with covid. They normally call 3 times a day to wash & change her, but that's been patchy for the last couple of weeks.
 

Louie16

Registered User
Mar 31, 2020
45
0
I would think very carefully & consult as many experts as possible before taking your mother home. We are still caring for my mother in the family home. She can barely stand now & is struggling to understand what we say or to make any sense, we are having great difficulty getting her to drink as I think she has forgotten how to swallow liquid & tries to chew it then pulls a face & rejects it, so we have to incorporate liquid into her food as much as we can. She can't feed herself anymore & will sometime reach into her mouth & take the food out. She needs constant supervision 24hrs a day as she forgets that she can't walk safely & has lost any sense of not wanting to be a burden & expects someone to be there every second to meet her needs or she will try to do things on her own & fall. She has zero patience now. On the subject of wanting to go home, my mother is already at home with her family, but still has occasional melt downs, often in the middle of the night, when she begs us to take her home. Its very frustrating & upsetting because there's nothing we can do as she's already at home, she just doesn't recognize where she is & gets very scared & upset. My mother has been in this kind of state with the drinking for at least 6 months & has been incontinent & incapable of dressing/feeding herself for about 2yrs now. There have been times when we thought she might be approaching the end & then she perks up. Its incredibly stressful & upsetting. You would need to ask yourself if you have the time, mental strength & patience to cope with possibly months, maybe even years of this. We currently have the added issue of many of my mother's carers being off with covid. They normally call 3 times a day to wash & change her, but that's been patchy for the last couple of weeks.
Thankyou for sharing your experience with your mum, it sounds incredible stressful and exhausting. It amazes me how the body is so strong and just keeps going even in illness. I'm sorry your carers are also off work, the whole covid time is dreadful in all sorts of ways. So many bad effects on people. Wishing you all the best and thankyou. 🙏
 

Ali_EM

Registered User
Dec 23, 2021
14
0
My father became poorly again due to aspirating and got readmitted to hospital a month ago, this was the 3rd hospital stay in a month and he was found to be aspirating on all consistencies by the speech and language team. We reconsidered our initial preference for end of life care at home and fortunately a hospice became available without much wait.

The hospice staff were excellent and it was such a different experience than the many hospital wards I’ve visited over the years.

My beloved father took his last breath yesterday and parted from this world. His death took what seemed like an eternity and made me realise that the hospice was definitely the right place. My father’s passing wasn’t peaceful at all until the very last hour. He was breathing rapidly and had a rattle sound on his chest that would have been near impossible to sleep through at home. Going to the hospice to be by his side was hard enough, the doctors say that it’s unlikely he felt breathless however seeing him puffing away like that was incredibly hard to look at and endure. 8 days without any oral intake he went by the time of his passing, it’s incredible how resilient the human body can be. Bare in mind despite 17 years of living with Alzheimer’s he was only 65 at his time of passing.

In the last hour his breathing finally slowed and became shallower, initially I wondered if this was caused by the extra morphine they had given in the syringe driver that afternoon but when I saw he had no pupil-light reflex I knew there wasn’t much longer left to go.

He had my brother and I by his side as he took his last breaths, and a powerful moment that I’ll never forget is the single tear that came from his right eye the very moment before the last breath he would ever take.

Having lived through that experience I can say two things. The first is that it would have been psychologically incredibly difficult to have watched him go through that 24/7 at home. At least with the hospice we left each night and came back in the morning thus getting a mental break. And secondly, my experience with the hospice was incredibly positive and completely different to how you feel trying to chase staff in a typical busy and manic NHS ward.

My biggest worry was around visiting and Covid and we were restricted to 6 named visitors (max 3 at a time) however the staff were flexible as the end drew closer.

I hope he is now resting in a place of happiness, and joy and has found the peace that his illness so cruelly denied him during his time here on earth.
 

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