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End of life care

User
Posted 22 Dec 2022 at 09:34

Hi,

Just had the dreaded conversation with doctor who is going to refer me for palliative care. as have exhausted treatment options.Should be a few months of life left but no body knows for certain. Live in Bromley kent

My  wife is in her mid seventies it's all a bit of a shock for us.She is too elderly and frail to look after me 24/7.Grateful for any practical advice.They are  apparently writing to my GP and local hospice.

In essence prefer to use NHS resources to maximum extent and to die in hospice environment rather than be massive burden on wife who would run herself ragged trying to cope.

Any advice welcome on how to cope welcome .Prefer to leave wife some savings to supplement her small pension rather than burn through them in private nursing home!

Regards

Norm

Edited by member 22 Dec 2022 at 10:12  | Reason: Typo

User
Posted 22 Dec 2022 at 09:34

Hi,

Just had the dreaded conversation with doctor who is going to refer me for palliative care. as have exhausted treatment options.Should be a few months of life left but no body knows for certain. Live in Bromley kent

My  wife is in her mid seventies it's all a bit of a shock for us.She is too elderly and frail to look after me 24/7.Grateful for any practical advice.They are  apparently writing to my GP and local hospice.

In essence prefer to use NHS resources to maximum extent and to die in hospice environment rather than be massive burden on wife who would run herself ragged trying to cope.

Any advice welcome on how to cope welcome .Prefer to leave wife some savings to supplement her small pension rather than burn through them in private nursing home!

Regards

Norm

Edited by member 22 Dec 2022 at 10:12  | Reason: Typo

User
Posted 22 Dec 2022 at 10:08

Sorry to hear this Norm. I can't offer any practical help. Die in hospice is a very sensible and considerate choice. 

One of my friends a woman in her 60s, had her mid 80s mother at home to die (the mother's wish) the daughter found it very hard work.

Dave

User
Posted 22 Dec 2022 at 14:38
Sorry to hear that Norm, my next door neighbour who passed away last week got a brilliant service from the Macmillan nurses, in his last couple of weeks they were round for several hours a day.

Take care buddy.

User
Posted 22 Dec 2022 at 16:09

Sorry to hear that Norm. Hope everything goes okay.

User
Posted 22 Dec 2022 at 18:17
All my respects Norman. I canโ€™t imagine how you feel but will find out. A GP referral to a local hospice should see you pass comfortably and at no cost other than the recommended donation. I wish you well at this awful time and send love and strength to your family ๐Ÿ™
User
Posted 22 Dec 2022 at 18:48

So sorry to read this news Norm. I am unable to offer any practical advice but want to let you know you are in our thoughts.

We hope you can get all your plans in place and then get on with living life, because as you have said no one really knows for certain.

Sending best wishes to you and your wife x

User
Posted 22 Dec 2022 at 19:33

Ahh Norm, Not gonna lie, Im more than a little upset at reading your post. Your selfless determination and the clear love you have for your wife, really is a beautiful thing to behold.

I salute you Norm Brown.

 

Jamie.

Edited by member 22 Dec 2022 at 20:09  | Reason: Not specified

User
Posted 22 Dec 2022 at 19:34

Hospice care will support you and your wife and family. Keep you comfortable and you’ll have quality time with your loved ones. 
All strength to you and your family. 
Leila 

User
Posted 23 Dec 2022 at 00:14
Sorry to see this Norm - as an old friend on here posted many, many times "it ain't over 'til the fat lady sings ... so we have locked her in the cellar"

The hospice team or Macmillan team should have a volunteer or social worker who can help with some very practical things like:

- helping you to apply for attendance allowance on the fast track route (if you don't already receive PIP or disability attendance allowance)

- talking to social services about whether a carer's assessment would be helpful (for either you as your wife's carer or her as yours)

- day centre services / holistic therapies

- making sure your financial / legal affairs are sorted

- having difficult conversations about your preferences and wishes - and how your wife/ family feel about those things

The attendance allowance (if you are entitled to it) is not means-tested and is for the purpose of paying for things that will make your last months comfortable - for example, mobility aids, home care / assistance, bathroom grab rails, scooter / wheelchair, a cleaner?

Down the line, if you need major things like a hospital grade bed, air mattress, etc., the oalliative / hospice team will liaise with local authority social services to get those on loan.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Dec 2022 at 00:33
Just an afterthought re your comment about wanting to avoid your wife running herself ragged.

Some people feel very strongly that they want to care at home for the person they love - I have done end of life care for my step-father-in-law, nana, mother-in-law and my mum. It can be physically demanding work with little sleep but I would do it again in a heartbeat. However, husbands / wives / partners is a different ball game to parents / in-laws ... one of the things we have seen on here over the years is that when the end of life care is provided by professionals, it can allow the wife to continue to be (and feel like) a wife rather than a full time carer.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Dec 2022 at 14:12

I would recommend hospice over home, particularly if it is close by, unless you have other family close by to physically and emotionally support your wife.  It will allow your wife to remain your wife and allow her to be fully supported.  Depending on your area Macmillan nurses and hospice in the home teams may not be able to support your wife and you in your home as much as they should.  If your hospice is not close by they will be able to recommend somewhere to stay close by, some even allow you stay over.  Why not visit them and then decide.

Having experienced end of life care with my husbands mother (at home), father (in hospice) I would choose hospice any day.  They are very caring environments and it was a very supported and natural environment and ensures a peaceful end. 

I wish you and your wife well in your journey.

User
Posted 28 Dec 2022 at 14:40
so sorry to read this Norm, it must have taken some writing, our thoughts are with you and your wife

Gentle Hugs

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User
Posted 22 Dec 2022 at 10:08

Sorry to hear this Norm. I can't offer any practical help. Die in hospice is a very sensible and considerate choice. 

One of my friends a woman in her 60s, had her mid 80s mother at home to die (the mother's wish) the daughter found it very hard work.

Dave

User
Posted 22 Dec 2022 at 14:38
Sorry to hear that Norm, my next door neighbour who passed away last week got a brilliant service from the Macmillan nurses, in his last couple of weeks they were round for several hours a day.

Take care buddy.

User
Posted 22 Dec 2022 at 16:09

Sorry to hear that Norm. Hope everything goes okay.

User
Posted 22 Dec 2022 at 18:11

Sorry to hear this norm take care gaz ๐Ÿ‘

User
Posted 22 Dec 2022 at 18:17
All my respects Norman. I canโ€™t imagine how you feel but will find out. A GP referral to a local hospice should see you pass comfortably and at no cost other than the recommended donation. I wish you well at this awful time and send love and strength to your family ๐Ÿ™
User
Posted 22 Dec 2022 at 18:25

Norm so sorry to hear this. My Friend passed away in a hospice not so many years ago. The care he received was excellent during his last few weeks. He was comfortable during his time there and just slipped away quietly. I wish you and your family the very best during this difficult time.

User
Posted 22 Dec 2022 at 18:48
That must have been damn hard to write Norm, my thoughts are with you. Assume no mileage in the potential Lut177 treatment then?.
User
Posted 22 Dec 2022 at 18:48

So sorry to read this news Norm. I am unable to offer any practical advice but want to let you know you are in our thoughts.

We hope you can get all your plans in place and then get on with living life, because as you have said no one really knows for certain.

Sending best wishes to you and your wife x

User
Posted 22 Dec 2022 at 19:24

Very sorry to hear this. 

Mrs MAS

User
Posted 22 Dec 2022 at 19:33

Ahh Norm, Not gonna lie, Im more than a little upset at reading your post. Your selfless determination and the clear love you have for your wife, really is a beautiful thing to behold.

I salute you Norm Brown.

 

Jamie.

Edited by member 22 Dec 2022 at 20:09  | Reason: Not specified

User
Posted 22 Dec 2022 at 19:34

Hospice care will support you and your wife and family. Keep you comfortable and you’ll have quality time with your loved ones. 
All strength to you and your family. 
Leila 

User
Posted 23 Dec 2022 at 00:14
Sorry to see this Norm - as an old friend on here posted many, many times "it ain't over 'til the fat lady sings ... so we have locked her in the cellar"

The hospice team or Macmillan team should have a volunteer or social worker who can help with some very practical things like:

- helping you to apply for attendance allowance on the fast track route (if you don't already receive PIP or disability attendance allowance)

- talking to social services about whether a carer's assessment would be helpful (for either you as your wife's carer or her as yours)

- day centre services / holistic therapies

- making sure your financial / legal affairs are sorted

- having difficult conversations about your preferences and wishes - and how your wife/ family feel about those things

The attendance allowance (if you are entitled to it) is not means-tested and is for the purpose of paying for things that will make your last months comfortable - for example, mobility aids, home care / assistance, bathroom grab rails, scooter / wheelchair, a cleaner?

Down the line, if you need major things like a hospital grade bed, air mattress, etc., the oalliative / hospice team will liaise with local authority social services to get those on loan.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Dec 2022 at 00:33
Just an afterthought re your comment about wanting to avoid your wife running herself ragged.

Some people feel very strongly that they want to care at home for the person they love - I have done end of life care for my step-father-in-law, nana, mother-in-law and my mum. It can be physically demanding work with little sleep but I would do it again in a heartbeat. However, husbands / wives / partners is a different ball game to parents / in-laws ... one of the things we have seen on here over the years is that when the end of life care is provided by professionals, it can allow the wife to continue to be (and feel like) a wife rather than a full time carer.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Dec 2022 at 14:12

I would recommend hospice over home, particularly if it is close by, unless you have other family close by to physically and emotionally support your wife.  It will allow your wife to remain your wife and allow her to be fully supported.  Depending on your area Macmillan nurses and hospice in the home teams may not be able to support your wife and you in your home as much as they should.  If your hospice is not close by they will be able to recommend somewhere to stay close by, some even allow you stay over.  Why not visit them and then decide.

Having experienced end of life care with my husbands mother (at home), father (in hospice) I would choose hospice any day.  They are very caring environments and it was a very supported and natural environment and ensures a peaceful end. 

I wish you and your wife well in your journey.

User
Posted 28 Dec 2022 at 14:40
so sorry to read this Norm, it must have taken some writing, our thoughts are with you and your wife

Gentle Hugs

User
Posted 06 Mar 2023 at 20:11

Hi Norm.

Only just seen this posting - not been very active here for a while, or in real life for that matter.

Can't really imagine what you must be going through, but help should be at hand - from various agencies.  My experiences over the last 12 month have suprised and humbled me about the support that can be found.  You just need to get onto their radars so they can help you.

MacMillan or your local cancer care charity or Citizens Advice can help you through the process of claiming any benefits your entitled to.  Presumably your GP has filed a DS1500 form?  This makes a huge difference to claiming benefits that you are now entitled to.

If you have a local Hospice your GP should be able to refer you for help, and they are happy to help in so many ways.  And supporting you at home for as long as possible is something they are experts at. 

Over the last week I have been offered a bed in my specialist cancer care hospital, and at my local hospice - both concerned about my situation.  If I actually have to go into care then it will be the Hospice, simply because the care they can offer is focussed on helping through a very difficult time - and they have the expertese in this area.  A hospital ward is not the ideal place to spend any of your remaining time.

Hope you're still around to read this.

Dean

 
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