Would you leave a baby in a dirty nappy for up to 5 hours?

[Toorapid]

Of course not, but apparently it's perfectly acceptable and quite usual for adults.

DH is soon to be discharged from hospital. He is completely immobile and dependent on others to get onto the bed pan and clean up.

I'm talking to people about other options, but the hospital's plan is for carers 4 times a day and in between times, he sits in his own waste (he'll have a pad so that's ok!) until carers arrive to clean him up. I will be working, but even when I'm at home I can't move or clean him on my own (they've told me this, I haven't tried, as he's still in hospital).

Now taking DH out of this because I'm in the fortunate position that I can probably arrange something else, how can this possibly be acceptable?

@Toorapid
I suppose you’ve had help from the hospital social worker of what financial help you can receive.
DLA does not exist any more for people over the age of 16 or 18 and has been replaced by PIP for people under the age of 65
If he’s over 65 then you can’t claim it, only attendance allowance which is not as much money.
If under 65 and you get full pip you can get a mobility car
Also if under 65 you can claim esa
Please get someone to help you fill in the form. It’s all about how you word your answers. People with severe disabilities have been turned down because they didn’t answer the form in the appropriate way.
There’s a fb esa , pip, dla support group with useful information

There maybe a support agency in your town that even working on the phone can you walk through it.

There are good disability support groups on fb also.
Will your husband be transferring into a chair during the day?
There may be help,with grants to help you if you need to adapt your house.
You might need a through floor lift and wet room for example.
An OT should be able to give you an assessment.

Also your husband depending on his level of disability might quality for CHC funding.
That’s continual care funding in which the nhs picks up the bill for all his care needs.
This would be a complete care package and covers care home funding or funding at home.
You do not need to be in a care home to receive this.

It’s hard trying to give general advice without understanding your dh’s care needs and obviously there’s no need to go into it all here, but specialist help is available if you know where to look, you don’t have to accept a bog standard level of care if you think he needs specialist care.

Care needs for someone elderly and frail are totally different for someone who has neurogenic problems..and dear op..you will have to fight.
People who ought to have their finger on all the pulses to help you are often woefully lacking in the information and may only give you the basic info when you may be entitled to so much more.

I do hope your husband is able to get out of bed and into a chair, it’s far better for his general health if that is possible.

If you want to pm me if you think I can help you any further, I’m more than happy to help

[quote Wenolikeexplodeythings]@Dowser

Slide sheets require 2 people to assist. One on each side of the bed. It is dangerous to do it with just one, because the patient can fall out of the bed and one person cannot catch a falling body from the other side of the bed. People have broken bones falling this way.[/quote]
While I quite agree with you, if it’s 2am and someone you love is lying in soiled sheets and there’s no one you can call on to help doing your best with the aid of a slide sheet may be your only option.

I’m not saying you’re wrong and I’m not saying I’m right, sometimes you just do your best with your resources at hand.

A good tip op, is to have a waterproof mattress protector on the bed with a fitted sheet on the top, then another protector and another fitted sheet...then if you have an emergency, the soiled sheet can be removed while the loved one is cleaned up then the protector leaving the clean set underneath.

OP, in order to prevent pressure damage, your dh will need to be turned every few hours and have an airflow mattress fitted to the bed. When he's lying on his side it's easy enough to change a pad and clean up.

What equipment are the hospital fixing you up with? Is he completely paralysed or does he have some movement and upper body strength?

ATM just the bed, with an air mattress.

He's not paralysed, but in too much pain to move, which is my main concern about having him home. He's sobbing with pain every time I speak to him and if they can't manage that in hospital, I don't know how I can do it at home. It's awful to hear.

You must be having a terrible time of it. You definitely don’t need insensitive posts criticising you at a time that must be so hard.

I’ve had two close relatives who made the transition from home care to care home at the point that 4 carer visits weren’t enough and toileting became an issue. With both relatives there was a big deterioration in mental state once fecal incontinence became an issue. Both sets of parents have cared for grandparents and it was the continence issues that they found the hardest. Are you getting any support and help re decision- making?

I changed my dad’s adult nappies alone, and washed and shaved him and so on.

I can’t remember exactly how often I changed him now.

LizBennet

MotherExtraordinaire... I’m fucking flabbergasted.

😤

Just look at the user name, Liz. Says it all really.

I’m glad to hear he’s not paralysed.
There’s hope there then
I can’t believe he’s being sent home without his pain under control.
What an awful nightmare for you both.
Do you know where the pain is coming from?

@Toorapid

I will do what's needed for him, spend my entire retirement savings if necessary, my concern is that "the system" thinks this is OK.

It doesn't matter if I can pop home, wfh, or give up work, I (and anyone else in the same position) can't help him on my own.

You won’t have to spend your entire retirement savings paying for care.

You need to take advice, but we had to separate our parents finances so that Mum pays for her own care. Dad doesn’t have to dip into his money at all.

When mum’s money gets down to a certain level, I think it’s £23000, then social care will pick up the bill, or part of it.

As I said, take advice on this. AgeUK may be helpful

Hi is he catheterised @Toorapid ? Just a thought but if not you could always try a conveen just trying to be practical for you. I know it dosent sort your soiled issue out but it would stop your husband being sat in urine.

If he no longer needs hospital treatment/care but can not cope with normal care provisions at home (4 care visits a day is the standard for people with high needs) then the only options left to your are....
You and family cope with his needs between visits
You and DH pay for 24 hour care
He goes into residential care home

That really is all the options open to you.

If they cannot manage his pain in hospital how are they going to manage it at home, I haven't seen your other thread but is he involved with the pain team. Does he have specialist nurses in the hospital. Have they looked at a full care needs assessment.

Even if he gets PIP and needs care the local authority are likely to take some or all of it to pay towards care package anyway. I’m on Disability benefits and the council reclaim as much as they can. Even if you have no other income. So don’t presume you would be free to use Disability money to pay towards extra expenses as they may take it anyway.

There is also the problem that adult pads/nappies are rationed to 3/4 a day anyway. Any more you would have to pay for so even of you did have a magic carer there 24/7 it would be extra expense fo pay for any more.

I say that because people think if they have less than the magic £23k it’s free and it certainly isn’t.

@Toorapid

ATM just the bed, with an air mattress.

He's not paralysed, but in too much pain to move, which is my main concern about having him home. He's sobbing with pain every time I speak to him and if they can't manage that in hospital, I don't know how I can do it at home. It's awful to hear.

that’s horrendous, bless you both. I hope he improves over time

They need to refer him to the district nurses and community pain team, sending someone home with uncontrolled pain is not acceptable, that would be my priority.

I hear you op. Mil is immobile. She had a catheter but kept fiddling with it and hurting herself so for a while she had none at all and was just weeing into pads. It's hideous.
She generally manages to wait for her carers (2 carers 4x a day, needs a hoist to move) before going for a poo but she gets very distressed when she feels the need and they're not due for a while.
She wants to be at home though so sadly she's got no choice but to wait.
Even if she lived with us we couldn't help her enough. We would need to both be in the house all day so we could hoist her together, one person can't do it alone.
In a care home she would probably have less time to wait but would stilll have to wait for 2 people to be free to help her.

It's not fair but I don't have an answer. I'm sorry you're in this position op, I'm sure it is not how you imagined your life would be at this point.

I've worked in hospitals for many years and currently doing my nursing training, I've never had to have someone assist me with helping someone with toileting on a bed pan.
It is quite common for having double ups for pad changes where rolls are required to almost 90 degrees on both sides but using a bed pan is much easier to assist with than a changing a soiled pad.
Have the hospital told you how they are assisting him? Usually the patient either rolls on to their side or lifts the bottom for it to be positioned.
He should be being repositioned every 4 hours which also requires a degree of rolling.

Depending on LA 4 or 5 is the maximum visits before needing a live in carer and if he is continent he won't qualify for that.

@tigerbread20 have you every worked with stroke patients because I can assure you many a times you need two people

If someone cannot roll onto their side because of pain I doubt they can lift their bottom to use a bedpan. What if they have spinal pain or trauma., some patients need repositioning more than every 4 hours, he will need to have full risk assessments carried out before they start planning discharge home or getting equipment in, has he had chc checklist done and a full care needs assessment.

@tigerbread20 nurse of 5 years plus here and previous hca experience. You shouldn't be rolling patients on your own and holding them up while you check their pad.

Your back needs to last you ! Not good for you or the patient .