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?

He can't roll, so I don't think it is possible to do it alone, or at least that's what the hospital are telling me. I've never had to try before.

@MotherExtraordinaire I see mnhq have had the sense to remove your vile comment but I think this is one of the rudest replies to a genuine concern I have ever read.
Be ashamed!!
Have you thought that op may need to work to pay the bills to keep a roof over hers and a beloved husbands head. To cover the cost of the carers, to provide some additional support or equipment her husband needs
Did you also actually read her opening post where she said she is not able to move her husband on her own, so whether she works or not she isn't able to change him.
People like you

Don't hold back @MotherExtraordinaire

OT here. that sounds very difficult OP. You will have to give it a go and see what times carers are calling and will this tend to coincide with DH bowel movements. Then may need private carers to do an extra toileting call if needed. is he incontinent? Are hospital keeping a record of his bowel movements at the moment?

@Toorapid

If you are self funding care (which if i remember rightly was a concern from your last thread) then you will be able to chose whatever level of care feels right, including residential, sleep in care and more frequent visits

However social services will provide the minimum level required for that person to safely remain at home.There is a massive crisis regarding care funding and it is only able to provide very basic care

Sorry just saw he uses bedpan

[quote 2BDIs]@MotherExtraordinaire I see mnhq have had the sense to remove your vile comment but I think this is one of the rudest replies to a genuine concern I have ever read.
Be ashamed!!
Have you thought that op may need to work to pay the bills to keep a roof over hers and a beloved husbands head. To cover the cost of the carers, to provide some additional support or equipment her husband needs
Did you also actually read her opening post where she said she is not able to move her husband on her own, so whether she works or not she isn't able to change him.
People like you[/quote]
I would imagine MNHQ got quite a few reports.

@Toorapid

I always find when people say thing like "without being rude" they absolutely are being intentionally very rude, as well as unkind.

No disrespect @MotherExtraordinaire but if you'd read the short OP properly, you'd know I haven't "chosen" anything because I full intend to make sure this doesn't happen for him. My concern was for others like him who aren't so fortunate.

You'd also know that my working or not makes no difference because (according to the professionals) I couldn't change him on my own anyway.

If you're not there, then you won't ever know if you could will you?

Yes it would be hard, but certainly most people would be willing to give it a go.

You didn't want him discharged, now he is and you're going to complain about the level of care? You can pay for 24 hour care. Presumably give the financial situation you previously shared, that would be possible to improve his quality of life now and for the next two years. Whereas you have a potential 20 to 30 years that you could work to improve your financial even further. Even though it looks pretty rosy compared to what most people have.

It's a shit scenario for your oh. I feel so sorry for him.

I see you're back to stick the boot in again.

How to you know what age the OP is anyway? She hasn't mentioned that.

@Toorapid

He can't roll, so I don't think it is possible to do it alone, or at least that's what the hospital are telling me. I've never had to try before.

Does he not need to be move more often to prevent bed sores etc too?

I agree that what you describe doesn’t sound like a good level of care in my opinion. Unfortunately I think home care allocation in the uk generally is below what it should be. Not because the carers aren’t great but because the system is underfunded and not well paid.

@MotherExtraordinaire

It's not a cas of trying and giving it a go. Safety moving and handling simply doesnt allow for one person to physically life, carry, swing or move another. You're not only risking injuring yourself, and therefore leaving you both inappropriately dangerous position of not being able to call for help, you also risk seriously injuring the person you are caring for. It would be idiotic to do it alone, especially if they are a typical smaller women/larger man situation.

This isnt opinion. This is fact. Why dont you take a moving and handling course and then you'll understand.

Regarding the financial situation; they need to earn money. And they deserve to have a comfortable financial life if it is available to him. Her husband will have the care he needs because it will be paid for. These people will be qualified in moving and handling so her husband will be cleaned up safely, rather than dangerously by the OP herself. He will have her full attention when she is home from work, like everyone one else in the world who has a working partner. There is absolutely nothing wrong with their setup. You are just a nasty, jealous, very small minded person.

Learn to read the room; your posts are not wanted here, nor are they doing anyone any good, and that includes you. Everyone on here will remember your username and just how horrible you were.

You didn't want him discharged, now he is and you're going to complain about the level of care?

I don't believe that is what the OP said at all.

4 is the maximum amount of call outs on a package of care . Unless you go 24-7 live in carer or a home .

@odysi

4 is the maximum amount of call outs on a package of care . Unless you go 24-7 live in carer or a home .

Do you know what the reason is for that? Is that the same in all areas?

Thinking my parents will need it soon so interested.

Wow that is a level of cruelty not usual on MN Mother Extraordinaire. Cripes.

OP you are not wrong. There is also skin integrity to consider and us laypersons do not neccessarily know the early signs of a skin breakdown.

I hope you are okay OP. Gentle shoulder clap from me.

@odysi

4 is the maximum amount of call outs on a package of care . Unless you go 24-7 live in carer or a home .

We were told above 5 calls would necessitate 24 hr care. Never came to that as the dear old parent carked it before we got to that stage (I can say this airily as time has passed and it isn't so raw)

He can't roll or he can't be rolled? It is possible to roll an adult on your own especially with the use of specialised sheets. I hear you that four visits a day isn't great but it can be possible to do some of the changes one to one.

If your husband is getting 2 people visit 4 times a day that is really good!! What further help were you thinking of??

@MotherExtraordinaire if you actually bothered to read the OP they have clearly explained that they are planning to put other things in place to help their husband; and in fact their concern was for other families that might not have the support or finances to supplement the care packages offered.

So in actual fact the OP is managing to both go above and beyond for her husband; while also displaying a level of concern for others that is quite admirable for someone with as much going on as they do.

Also by your blase statement of “giving it a go” I’m going to assume that you’ve never actually had to assist a non-mobile adult with their toileting. I’ve done it as part of a two man team with the aid of a hoist and it was still an absolute mission, not to mention emotionally draining.

The OP is right to want to preserve her DH’s comfort, safety and dignity by having his care overseen by professionals.

@wellthatsunusual the OP posted before about the tragic and very sad circumstances of her husband's condition. I think a lot of people on here are aware as it was recent.

My Aunt had to employ a full time 24/7 carer for my Uncle as he deteriorated however he had taken early retirement due to his ill health and they had cashed out everything they could to throw money at it. They had critical illness cover with their mortgage etc plus other life insurance policies. My Aunt continued working as they had teenage children (she was younger than him) she needed to be able to keep paying the bills.

I'm not complain about the care he's been offered, we will arrange whatever we think is necessary. I'm thinking for people in his situation, who can't do that, it's not adequate.

On the other thread, as now, I'm concerned that he's not well enough to be discharged, nothing at all to do with wanting him home or not.

I hear you, OP.

A close friend of mine cares full-time and devotedly for her severely disabled child, now a teenager. DC is doubly incontinent. After years of buying nappies and pull ups, which got increasingly expensive and difficult to source once out of baby and toddler sizes, she found out that DC was entitled to a prescription for nappies or pads. Nobody had bothered to tell her this over the years. After an assessment with a specialist continence nurse, DC was prescribed 4 nappies a day. When she pointed out that 4 was less than DC needed in a day and would mean a nappy change only every 6 hours, she was told 4 was the maximum anyone is prescribed and that the nappies are designed to be worn for longer so she should change DC less often. When she pointed out that would mean DC would be left sitting in wet and dirty nappies and she considered that to be neglectful, the nurse - who had acted all along like she was doing my friend and her DC a great favour - ended the appointment. My friend felt like turning the prescription down and continuing to buying them all as before, she was so disgusted and upset by it all. She decided in the end to accept it and continues to privately source and buy the rest of the nappies DC needs. The prescription covers about half and doesn't cover any of the cleansing foam, wipes, tissues, mats, gloves, bags, pull ups and so on needed for the process and maintenance of comfort, health and dignity. DC needs round the clock care and she has had to give up her career to provide this - at great cost to her, including financially - otherwise DC would have to be in residential care. She found this too heartbreaking to countenance and it would also not be in DC's best interests. Instead she receives £67.25 Carer's Allowance - what is that as an hourly rate for 24/7?!

So yes, 'the system' does think it is acceptable to change someone only 4 times a day, including severely disabled highly vulnerable DC.

Best of luck, OP.

What is the other thread?

@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.

It doesn’t have to be this way and care for people in this situation is abominable. I know . My cousin had it with my aunt. It is possible to train the bowels , even to train them every other day. I suppose there is a neurological condition where your husband might have little control of his bowels. Basically you can buy or the doctor can prescribe dulcolax or bisocodyl suppositories. Someone needs to insert the suppository as far into the rectum as they can manage. We are talking about 5 ins. You may be able to buy a suppository Inserter They often take about 20 mins to work..there may be bisocodyl solution that someone can insert into the rectum using a special 2 ml syringe. Fleet enemas may also be able to be purchased in this country now as well.

He needs to be turned to his left side , knees up with some absorbable bed pad under him..incopads, I think there’s something else.. I might have forgotten the name.
The bowel might need to be stimulated with a gloved finger.
You may be able to get a district nurse to help with this.

Once the bowel is emptied, yes keep a pad in place for any leaky suppository but he should be able to go till morning, or the morning after.

Why my aunt couldn’t have been trained like this I don’t know.

Also bladder. If your dh has a neurogenic bladder there are procedures in place that can prevent leaks and lying in urine which is bad for the skin

@Toorapid

He can't roll, so I don't think it is possible to do it alone, or at least that's what the hospital are telling me. I've never had to try before.

There are soft slippy sheets called slide sheets to help an immobile person to move with the aid of another person

@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.