Dads in hospital very ill possibly eol

[Starting on a journey]

@deepetshopboy , I think they have put you in an impossible situation and maybe try to speak to your own go first about your health.

However from what you have said they are supplying 24 hr 1:1 care so really you only need to do washing and meal preparation…..are they allowing you any money to do this? Will it make a difference to any benefits you may get, you need to check this out?

 

[canary]

Was signed off as sick with anxiety depression /colitis which i had for yrs when my dad went to care home had a breakdown

I am really worried about this.
I have had a breakdown and know how bad it is.
What is being proposed for having him in your home would be unbelievably stressful for someone who didnt have any underlying anxiety/depression issues.

I really cant see it being a viable solution.
What happens if it all breaks down?

 

[deepetshopboy]

@deepetshopboy , I think they have put you in an impossible situation and maybe try to speak to your own go first about your health.

However from what you have said they are supplying 24 hr 1:1 care so really you only need to do washing and meal preparation…..are they allowing you any money to do this? Will it make a difference to any benefits you may get, you need to check this out?

Im getting universal credit so i would try and apply to carers allowance although not sure if i would get it ? As he’s getting carers coming in which would then put me under pressure to get a job id have to find out
Im gojng have to email the discharge nurse n tell her i need more time to deceide and look around nursing homes this week and find out about my benefits

 

[GillP]

Will discharge team not find a home for you? They probably have better access to homes than you are getting.

What is the likelihood that physio will get your Dad walking again? Is there not a residential rehabilitation facility to enable him to make progress with walking. When my husband suffered from a stroke some years ago he had eight weeks paid for in a really good rehab facility. It was in Eaton Socon and as I visited daily was a bit of a drive but they were amazing.

Might be worth asking discharge team about this sort of help if there is a chance that physio will be effective. You may need to dig your heels in, and I do realise how difficult that will be, but if it spurs discharge into finding a place it could be worth it. I simply told the hospital that I could not have my husband home until he was mobile as we did not have a downstairs bathroom and the house is on many different levels etc.

I do hope that you are able to sort something out that meets both your needs as you are being worn down by it all.

 

[jennifer1967]

Im getting universal credit so i would try and apply to carers allowance although not sure if i would get it ? As he’s getting carers coming in which would then put me under pressure to get a job id have to find out
Im gojng have to email the discharge nurse n tell her i need more time to deceide and look around nursing homes this week and find out about my benefits

if you get carers allowance, they will take it off your UC. i assume that he will need 2 carers to wash, dress, toilet etc so he wont be able to decide when he wants to do things but have to do things when the second carer arrives. 1 carer cant wash him even in bed because they have to move him and roll him each side so need 1 each side. they will have to use a hoist if getting him out of bed. would he be in too much pain to have a wheelchair? you need ot to assess your home first to see what equipment is needed and if there is space to use it safely and store.

 

[deepetshopboy]

Will discharge team not find a home for you? They probably have better access to homes than you are getting.

What is the likelihood that physio will get your Dad walking again? Is there not a residential rehabilitation facility to enable him to make progress with walking. When my husband suffered from a stroke some years ago he had eight weeks paid for in a really good rehab facility. It was in Eaton Socon and as I visited daily was a bit of a drive but they were amazing.

Might be worth asking discharge team about this sort of help if there is a chance that physio will be effective. You may need to dig your heels in, and I do realise how difficult that will be, but if it spurs discharge into finding a place it could be worth it. I simply told the hospital that I could not have my husband home until he was mobile as we did not have a downstairs bathroom and the house is on many different levels etc.

I do hope that you are able to sort something out that meets both your needs as you are being worn down by it all.

Pysio told me hes not eligible to go to rehab centre due to hes non compliance and understanding of pysio its a waste of time he will either get up walk by himself or not
If he goes to a nursing home if they decide it too risky he wont be allowed to walk he will be told to sit /stay in bed

 

[Jessbow]

On Friday evening you said

Ill have 2x carers here day n night plus x 3 carers visiting to wash etc its a lot

that sounded difficult enough

now you say its 1 day and night,and care calls.so he wont get choices. he'll get up ( or not) when the extra hands come atwhatever time they come ( and you wont have much say in that).

Any nursing home will risk assess him befor they take him. What are the risks of him getting up and trying to walk? Yup he my fall BUT he'lldo that at home or Nursing home.Which carries the greater risk? t home i'd have thought, in a confined space etc etc .

his needs will have to come first with regards to location, and you may find somewhere away from where you live is cheaper than staying within central London, travelling out is always cheaper than within London ( Off peak return Euston >> watford for instance is £13 return) I defy you to do all his laundry, feed and amuse him for £13 a week

 

[Jaded'n'faded]

Pysio told me hes not eligible to go to rehab centre due to hes non compliance and understanding of pysio its a waste of time he will either get up walk by himself or not
If he goes to a nursing home if they decide it too risky he wont be allowed to walk he will be told to sit /stay in bed

It seems to me your main objection to him going in a care home is that he will have to stay in bed. And at home, you feel you'd be able to get him up from bed to chair and back and outside in a wheelchair, etc.

But things are sliding with your poor dad. What if you set everything up at home and he's simply not able to move from his bed any longer or finds it too painful? You've said he's sleeping a lot so will the carers get him into a chair if he's asleep in bed? I can foresee a lot of arguments between you and the carers over what you think they should do and what they think they should do. Who will be 'in charge' - you or them?

Have you thought about the duration of this arrangement? If it was just for a week or two and you were taking dad home for his final days, I'm sure you'd be prepared to put up with any amount of disruption. But how long could you realistically stand it for? A month? Six months? A year?

 

[deepetshopboy]

It seems to me your main objection to him going in a care home is that he will have to stay in bed. And at home, you feel you'd be able to get him up from bed to chair and back and outside in a wheelchair, etc.

But things are sliding with your poor dad. What if you set everything up at home and he's simply not able to move from his bed any longer or finds it too painful? You've said he's sleeping a lot so will the carers get him into a chair if he's asleep in bed? I can foresee a lot of arguments between you and the carers over what you think they should do and what they think they should do. Who will be 'in charge' - you or them?

Have you thought about the duration of this arrangement? If it was just for a week or two and you were taking dad home for his final days, I'm sure you'd be prepared to put up with any amount of disruption. But how long could you realistically stand it for? A month? Six months? A year?

I dont know
I dont think my dads end of life this could be the next 5.6 yrs
He might regain hes mobility not need a night carer not need x3 carers in 6 weeks time might only need 1 carer and and 1 carer popping in to relieve carer
If he’s asleep then they will have to leave him
Ill have to step back and leave the carers to it as much as possible as ill be accused of interfering

 

[canary]

Your dad still has an infection @deepetshopboy - it hasnt gone and the doctors have said that it wont go. I honestly do not think your dad will improve.

 

[Jessbow]

Your dad still has an infection @deepetshopboy - it hasnt gone and the doctors have said that it wont go. I honestly do not think your dad will improve.

I am not sure he will, either but while CHC funding is availible, you'd be absolutely nuts to do it yourself!
Find nursing home while he is funded, that funding WILL stop if he improved, then you might have to have him home. I'm not convinced it is CHC funding - you dont contribute to that yourself

That funding is based on the way he is now- and will be reviewed after 3 months- at least get the most from it while you can

 

[MaNaAk]

Dear @deepetshopboy,

I don't want to see you making yourself ill. I remember freaking out at the suggestion that dad should come home.

I admire you

MaNaAk

 

[Jessbow]

I dont know
I dont think my dads end of life this could be the next 5.6 yrs
He might regain hes mobility not need a night carer not need x3 carers in 6 weeks time might only need 1 carer and and 1 carer popping in to relieve carer
If he’s asleep then they will have to leave him
Ill have to step back and leave the carers to it as much as possible as ill be accused of interfering

He might NOT gain his mobility and becme more aggressive and demanding!

At Your house ,He wont be able to be left if he is asleep if the carer is coming in at say 9am, he'll be wet through overnight, and cannot be left until the next call ( and no the one wont allow you to help her later, ) Heaven help his backside!

in a Nursing home, they can leave him and do him when he is awake- they will establish a routine that fits him.
Jim is still asleep, miss him , do david and james & go back & do Jim .

 

[jennifer1967]

they wont let him sleep because he will need changing, meds even something to eat. his bottom will be very red and sore if they dont wash him when they get there asnd if hes wet, he will get cold and uncomfortable. if hes in bed, hes probably going to have to have some sort of barrier cream to help stop the urine getting to his skin. if he is/or becomes faecal incontinent, it is really isnt nice to let him sleep. you are going to have to shut your eyes, go to another room and let them get on with it. they cant have you helping as you are not trained, health and safety and not covered on the insurance. if you try to get him to transfer from bed to chair to wheelchair, there is a very real possibility you could cause him a lot of injuries and he will be back in hospital. their bones are very weak and thinner. even sitting him up is a moving and handling technique. there is also the case of your back, hips, knees which maybe damaged without any healing treatment. i know, i have that and it really is not nice living with pain that cant be treated.

 

[MaNaAk]

He might NOT gain his mobility and becme more aggressive and demanding!

At Your house ,He wont be able to be left if he is asleep if the carer is coming in at say 9am, he'll be wet through overnight, and cannot be left until the next call ( and no the one wont allow you to help her later, ) Heaven help his backside!

in a Nursing home, they can leave him and do him when he is awake- they will establish a routine that fits him.
Jim is still asleep, miss him , do david and james & go back & do Jim .

He would be prone to infections.

MaNaAk

 

[TNJJ]

if you get carers allowance, they will take it off your UC. i assume that he will need 2 carers to wash, dress, toilet etc so he wont be able to decide when he wants to do things but have to do things when the second carer arrives. 1 carer cant wash him even in bed because they have to move him and roll him each side so need 1 each side. they will have to use a hoist if getting him out of bed. would he be in too much pain to have a wheelchair? you need ot to assess your home first to see what equipment is needed and if there is space to use it safely and store.

I get carers allowance and universal credit. I care for dad 35 hours a week. He has carers 4 X a day

 

[deepetshopboy]

I get carers allowance and universal credit. I care for dad 35 hours a week. He has carers 4 X a day

Ok thank you for your help

 

[deepetshopboy]

He would be prone to infections.

MaNaAk

I think id be a supplement carer so if he needed changing id have to help during the night with the 1.1 night carer

 

[deepetshopboy]

they wont let him sleep because he will need changing, meds even something to eat. his bottom will be very red and sore if they dont wash him when they get there asnd if hes wet, he will get cold and uncomfortable. if hes in bed, hes probably going to have to have some sort of barrier cream to help stop the urine getting to his skin. if he is/or becomes faecal incontinent, it is really isnt nice to let him sleep. you are going to have to shut your eyes, go to another room and let them get on with it. they cant have you helping as you are not trained, health and safety and not covered on the insurance. if you try to get him to transfer from bed to chair to wheelchair, there is a very real possibility you could cause him a lot of injuries and he will be back in hospital. their bones are very weak and thinner. even sitting him up is a moving and handling technique. there is also the case of your back, hips, knees which maybe damaged without any healing treatment. i know, i have that and it really is not nice living with pain that cant be treated.

I think during the night if he needs changing id be the ‘ secondry carer ‘

 

[deepetshopboy]

I am not sure he will, either but while CHC funding is availible, you'd be absolutely nuts to do it yourself!
Find nursing home while he is funded, that funding WILL stop if he improved, then you might have to have him home. I'm not convinced it is CHC funding - you dont contribute to that yourself

That funding is based on the way he is now- and will be reviewed after 3 months- at least get the most from it while you can

Its intially ss untill chc comes in
Or they get the next ex la to fund if he goes to a nursing home