Has Anyone Brought a Relative Home to Die?

Goingitalone

Registered User
Feb 11, 2010
1,684
0
MIL is in her final stage and is currently in a residential care home. She is declining and, when lucid, very depressed. I would love to bring her home to my house to die but I realise this is a massive decision.

She needs turning every 2 hours and it takes 2 members of staff. I’d have to employ many careers to help, I know I couldn’t possibly do this alone. The nights alone would probably finish me off.

What kind of help could I expect from the medical people, local authority etc in the way of equipment? She does have funds so I could employ careers.

We don’t have a downstairs bathroom but she is confined to bed now anyway. She would need a profiling bed and a pressure mattress. I can get medical gloves, incontinence pads etc.

Would anyone advise against this and if so, why? I have to be realistic so I need you to be honest if you’ve done this.

Thanks so much.
 

canary

Registered User
Feb 25, 2014
24,920
0
South coast
My mum passed away in her care home, rather than in her own home, but nevertheless the problem seemed to be that we were dependant on the district nurses coming out to administer pain killers and the syringe driver. Fortunately the carers knew the signs to look for and knew when to call the district nurses, but Im not sure that I would have known.

One of our members has recently looked after her mum at home right until she passed away and it can be found from about p336 onwards of her thread "can I .... Should I....." https://forum.alzheimers.org.uk/threads/can-i-should-i.96413/page-336
Warnings though, it is pretty graphic and some of the things that happened were pretty awful. In many ways it shows what can go wrong.
 

Beate

Registered User
May 21, 2014
12,179
0
London
Sam Luvit didn't really have a choice as her Mum was already at home and hospice wasn't an option, but the stress nearly killed her. Think very very carefully what you are taking on there and whether she will actually benefit from this. Is she lucid enough to know and understand where she is anymore? I personally wouldn't even attempt it.
 

Izzy

Volunteer Moderator
Aug 31, 2003
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Dundee
My mum wasn't in a care home, she lived at home with me. When she eventually took to her bed and it was clear she was 'slipping away' as her GP put it we had a lot of things to put into place. I already employed carers through our local Self Directed Support scheme and I chose to increase their hours as, for the first week or so I was still I was working full time. Our local district nurses were wonderful. They came in 2 or 3 times a day to help the carers move her and wash her. They also made sure that the 'just in case' box was in place. They organised overnight sits for mum - from the Marie Cure nurses.

I know that I was extremely lucky to have that amount of support. Even with that support it was gruelling. I don't regret for a moment that mum was at home with us but it was not easy. I suppose what I'm saying is be very sure that you will have support in place if you decide to bring your mum home.

Kind regards.
 

Goingitalone

Registered User
Feb 11, 2010
1,684
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Thanks, everyone.

I read Sam’s experience. I can identify with her frustration at the lack of joined up thinking between the different professions, even the different people within each profession. They don’t speak to each other and they don’t all tell you the same thing.

I have been concerned that MILs pain isn’t being controlled well enough because the staff don’t always realise she is in pain. The care home isn’t nursing and some of the staff are too new to caring to understand end of life care.

However, they are all pretty good at moving and handling her and that is something I would struggle with. And the night staff are wonderful.

After much family discussion I think the decision has been made. ☹️

Thank you so much for your advice and information. This site is wonderful.
 

Ladymelchet

New member
Aug 21, 2018
2
0
Yes I brought my father home to die 9 weeks ago and he died last Friday aged 89. Please be aware that my parents live in Scotland where the personal care funding is free. Dad spent 2 months in hospital after being diagnosed with untreatable bladder cancer. His discharge from hospital was complex taking about 2 weeks to set up. Dad was doubly incontinent as well having Bladder cancer and Dementia.
Knowing that Dad's physical condition was poor and Mum's was deteriorating we insisted they get a wet room made in their bathroom. This has paid dividends and although expensive it meant that Dad could be cared for at home and means my mother can continue to live at home independently, she has the early stages of dementia.
One of the first things I did was apply for the upper rate Attendance Allowance which I did through our local Maggie's Centre.
I found out what hours our local council was prepared fund for Dad's care which amounted to 21 hours per week. We had to go down a direct payment route as there was no way Dad would have got home otherwise. It took sometime but I eventually found a Care Agency that could do the hours required for Dad and with his DWP upper rate attendance allowance we bought in a wee bit extra.
I then negotiated with OT and the Discharge Nurse at the hospital for a profiling bed, reclining chair and a shower chair. They also set up the incontinence pad delivery service. I insisted on having the services of Marie Curie care to advice on Dad's cancer care.
For Dad's skin care I used foam cleansers and Conti wipes which are available at Age Uk website, VAT exempt. I also bought Kylie Sheets to protect/save the sheets and washing. To dispose of used pads I was able to buy extra large nappy sacks for the carers to use. I provided the carers with soap for themselves, lots of surface wipers and spray Detol- just to make their job easier when dealing with thrills and spills.
The carers were good and consistent and developed a good relationship with my parents, visiting 4 times a day. Yes, it could be a bit precarious at times especially when Dad was on his own, but with community alarms etc working for the occasional fall, there was no major crisis
I did manage to get two week's holiday in this time and also never had to deal with Dad's incontinence which would have mortified him. It was hard work organising it all and then maintaining a semblance of order but Dad died relatively peacefully at home surrounded by 3 generations of his family last week after a quick final decline. He was given the dignity he deserved.
My early thoughts on the whole issue is that you have to be prepared to purchase equipment such as skin cleansing stuff and Kylie sheets otherwise you will be waiting a long time! I found websites such as Gumtree very helpful - lots of ads for walkers etc. Use the various agencies for help and information and do not be afraid to ask the health/social care professionals for equipment especially if you are prepared to go down a Direct Payment route and prevent a delayed discharge from hospital!
Hope this has been helpful.
 

RallyAlly

Registered User
Jun 12, 2018
62
0
Yes I brought my father home to die 9 weeks ago and he died last Friday aged 89. Please be aware that my parents live in Scotland where the personal care funding is free. Dad spent 2 months in hospital after being diagnosed with untreatable bladder cancer. His discharge from hospital was complex taking about 2 weeks to set up. Dad was doubly incontinent as well having Bladder cancer and Dementia.
Knowing that Dad's physical condition was poor and Mum's was deteriorating we insisted they get a wet room made in their bathroom. This has paid dividends and although expensive it meant that Dad could be cared for at home and means my mother can continue to live at home independently, she has the early stages of dementia.
One of the first things I did was apply for the upper rate Attendance Allowance which I did through our local Maggie's Centre.
I found out what hours our local council was prepared fund for Dad's care which amounted to 21 hours per week. We had to go down a direct payment route as there was no way Dad would have got home otherwise. It took sometime but I eventually found a Care Agency that could do the hours required for Dad and with his DWP upper rate attendance allowance we bought in a wee bit extra.
I then negotiated with OT and the Discharge Nurse at the hospital for a profiling bed, reclining chair and a shower chair. They also set up the incontinence pad delivery service. I insisted on having the services of Marie Curie care to advice on Dad's cancer care.
For Dad's skin care I used foam cleansers and Conti wipes which are available at Age Uk website, VAT exempt. I also bought Kylie Sheets to protect/save the sheets and washing. To dispose of used pads I was able to buy extra large nappy sacks for the carers to use. I provided the carers with soap for themselves, lots of surface wipers and spray Detol- just to make their job easier when dealing with thrills and spills.
The carers were good and consistent and developed a good relationship with my parents, visiting 4 times a day. Yes, it could be a bit precarious at times especially when Dad was on his own, but with community alarms etc working for the occasional fall, there was no major crisis
I did manage to get two week's holiday in this time and also never had to deal with Dad's incontinence which would have mortified him. It was hard work organising it all and then maintaining a semblance of order but Dad died relatively peacefully at home surrounded by 3 generations of his family last week after a quick final decline. He was given the dignity he deserved.
My early thoughts on the whole issue is that you have to be prepared to purchase equipment such as skin cleansing stuff and Kylie sheets otherwise you will be waiting a long time! I found websites such as Gumtree very helpful - lots of ads for walkers etc. Use the various agencies for help and information and do not be afraid to ask the health/social care professionals for equipment especially if you are prepared to go down a Direct Payment route and prevent a delayed discharge from hospital!
Hope this has been helpful.

Ladymelchet, I just want to commend you for all you managed to organise for your Dad - and to write such a helpful post so soon after he died is truly inspirational.
I'm amazed at what you managed - I've found its sometimes gruelling all we have to go thro dealing with finances, legal work, some unhelpful professionals & many other things.
Your family are blessed that you were willing & able to do this.
Without all that you put in place, as you say, this would never have worked.
(PS my hubby is now in a psych unit for the forseeable future, so mostly a very different experience)
Apologies if I inadvertently reprinted you whole pist!
 

Ladymelchet

New member
Aug 21, 2018
2
0
Thank you - I think we were fortunate in that Dad developed bladder cancer with a poor prognosis. He was not just a 89 year old man labelled with double incontinence and dementia which might have been a different story. I am now firmly of the belief that families require support at what to ask for from health/social care professionals and how to work in partnership with them. Equally it should also apply the other way around! The concept of a "death doula" is interesting but not just as a female role
 

Goingitalone

Registered User
Feb 11, 2010
1,684
0
Yes I brought my father home to die 9 weeks ago and he died last Friday aged 89. Please be aware that my parents live in Scotland where the personal care funding is free. Dad spent 2 months in hospital after being diagnosed with untreatable bladder cancer. His discharge from hospital was complex taking about 2 weeks to set up. Dad was doubly incontinent as well having Bladder cancer and Dementia.
Knowing that Dad's physical condition was poor and Mum's was deteriorating we insisted they get a wet room made in their bathroom. This has paid dividends and although expensive it meant that Dad could be cared for at home and means my mother can continue to live at home independently, she has the early stages of dementia.
One of the first things I did was apply for the upper rate Attendance Allowance which I did through our local Maggie's Centre.
I found out what hours our local council was prepared fund for Dad's care which amounted to 21 hours per week. We had to go down a direct payment route as there was no way Dad would have got home otherwise. It took sometime but I eventually found a Care Agency that could do the hours required for Dad and with his DWP upper rate attendance allowance we bought in a wee bit extra.
I then negotiated with OT and the Discharge Nurse at the hospital for a profiling bed, reclining chair and a shower chair. They also set up the incontinence pad delivery service. I insisted on having the services of Marie Curie care to advice on Dad's cancer care.
For Dad's skin care I used foam cleansers and Conti wipes which are available at Age Uk website, VAT exempt. I also bought Kylie Sheets to protect/save the sheets and washing. To dispose of used pads I was able to buy extra large nappy sacks for the carers to use. I provided the carers with soap for themselves, lots of surface wipers and spray Detol- just to make their job easier when dealing with thrills and spills.
The carers were good and consistent and developed a good relationship with my parents, visiting 4 times a day. Yes, it could be a bit precarious at times especially when Dad was on his own, but with community alarms etc working for the occasional fall, there was no major crisis
I did manage to get two week's holiday in this time and also never had to deal with Dad's incontinence which would have mortified him. It was hard work organising it all and then maintaining a semblance of order but Dad died relatively peacefully at home surrounded by 3 generations of his family last week after a quick final decline. He was given the dignity he deserved.
My early thoughts on the whole issue is that you have to be prepared to purchase equipment such as skin cleansing stuff and Kylie sheets otherwise you will be waiting a long time! I found websites such as Gumtree very helpful - lots of ads for walkers etc. Use the various agencies for help and information and do not be afraid to ask the health/social care professionals for equipment especially if you are prepared to go down a Direct Payment route and prevent a delayed discharge from hospital!
Hope this has been helpful.
Thank you so much for taking the trouble to reply to my post, @Ladymelchet. Your experience and Sam’s are amazing. The fact that members post their experiences on here truly inspires me.....in the midst of such upset and anguish you are willing to share the ups and downs of this awful illness....it means that others coming after can make an informed choice about important matters. Thank you all so very much.

We now have Mum’s pain under control. She is in a care home very local to us which means that the family can visit virtually whenever we like. We are with her all daylight hours and do all the feeding etc. There has been a remarkable improvement in her. She was designated “end of life” towards the end of June as she had virtually stopped eating and drinking seemingly unable to swallow. Although she still struggles to swallow at times she is now eating pretty well most days and seems much more comfortable generally. On rare occasions she even talks normally for the whole day but it never lasts.

Is she still “end of life?” Who knows? All we can do is the best we can. I’m sure she is aware of her situation and, from her lucid days, definitely understands more than most of her careers realise so I am glad relatives are rallying to help. We seem to have found the best compromise.....care staff doing the important turning, changing etc and family feeding and making her endless cups of tea. The family have been using a social media app to communicate with each other about her care, rotas etc. It’s working well so far.

Thank you all so much for posting. You really don’t know how helpful and inspirational you all are.

God bless.
 

canary

Registered User
Feb 25, 2014
24,920
0
South coast
It sounds like your mum has "bounced back" @Goingitalone It seems to happen more than you would suppose - the body wants to hang on to life incredibly tenaciously. I was told that my mum would not survive three times before she eventually passed away just over a year after the first time. That year was a terrible roller coaster.

It sounds like your mums care home knows how to look after her very well. As you say, you can only do your best.
 

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