Are family expected to turn loved ones in bed?

[Firefly1987]

Not a current situation but was reflecting on what happened in the past and just want to know if this is normal protocol. Basically we got told to move our family member in bed to prevent pressure sores just before they died. They couldn't really move themselves at all by that point. We agreed but not even thinking how hard it'd actually be when we came to do it. We never got any training in how best to do this (assuming there is a proper way to do it though I don't know) or anything at all just "move them every 4 hours" and it just kind of sounded easy and we didn't question it.

It was really hard and our family member was in a lot of pain whilst we tried to turn them over. We did manage it but I'm kind of traumatised over causing them pain every time. Just wondering if this was a situation we should've been put in? For reference it was just me and my mum (I have brothers but they weren't around the whole time to help) is this just something you get stuck in and do or are family not really supposed to be put in this situation? We have no nursing experience at all. Thank you.

Bloody hell no I don’t think you should have been put in that position. Was there a referral to community palliative care?

No you should be doing it; you could injured yourself or her. My mum has an inflatable bed topper to help prevent bed sores. She just seems to lie on her back tbh. When the carers move her they use a drag sheet thing

I would have expected a care package, occupational therapy assessment plus equipment like Wendy Letts sheets, and only then consideration of whether you could safely do this.

Without training or equipment they could both end up injured and who would do any care if OP was out of action?

either a domiciliary care package or need a care home at this point, if they are self pay however some families may elect to diy I suppose

Not at all, it was made clear we shouldn’t be lifting because we could cause harm both to the person and ourselves. We had a bed with a pressure mattress supplied at home to relieve pressure on sores.

No I don't think there was anything like that. I remember a doctor saw my brother struggling to get my dad on the commode a few days earlier and said you'll have to have carers-she did organise that but it was too late as sadly he had actually died just before they were due to arrive.

Sorry I should clarify-it was both my mum and me caring for my dad so there were two of us. Actually this happened to us twice-one time with my dad and one time with my nana. Unfortunately they both decided never to go into hospital again after bad experiences hence why we ended up in that situation both times.

We did have some sort of special mattress for my nan but not sure for my dad (it was a hospital bed but unsure about the mattress) I'm not entirely sure but think there is still a pressure sore risk even with a special mattress.

I think we just didn't know what was going to happen or what to expect. Also no idea what help there was really. Guess it was on us not to have organised anything ourselves but just didn't know-would've expected more support with it all. I know we tried to get my dad into a hospice but they didn't have room or they had a very long waiting list.

I think both times they deteriorated so quickly in the end we were a bit blindsided and no advice on what the progression would be like or talks of if we'd manage.

It's a really scary and traumatic situation to be put in.

There was a special bed hoist and carers - so I don't think so but this was part of a care package that got put in place after hospital discharge.

Who was telling you to do the turning?

Thank you that sounds like what we should've had. Looking back I can't believe we just got almost left entirely to it.

It seemed to get set up as part of hospital discharge process - before they could come home. Though adult social services did some assesment and put some hand rails in but the turning was district nurse and carers.

You need to know how to turn/ move someone who’s at risk of pressure sores, it’s easy to make things worse rather than better. Ideally either district nursing teams or some sort of palliative care service would be involved, carers as a minimum. DW and I moved both my parents as needed when they were at the end of life, but we were both trained how to

We refused to have my mum discharged from hospital before a care package was in place. She has carers 4 times a day and they move her about as they have training. The one time I helped my mum to the commode was a disaster with poop everywhere so I'd never do that again. Its in her care plan that 2 carers are needed for any moving.

We did have to push for everything e.g. access to pads, carers, bed rail, commode, etc

There should have been a palliative care package and a hospital bed. If he was due to go into a hospice then they should have activated the hospice at home system. Family are not required to provide personal care at all but unfortunately they will accept family doing it if it's offered. My SIL decided she was going to do everything for her father so only had nurses for the medication side. She only gave in to what I was saying when she hurt herself as she thought he would be light and easy to manage because he was old and frail. There is always a 6 week NHS care package available in these situations which can be extended if a person is end of life.

I know they delayed discharge for my dad as we didn't have the equipment so they did get that organised for us ie hospital bed (though no hoist) but no care at all other than family until the doctor saw us struggling and organised the carers which didn't come in time.

So it was a district nurse who told us to turn him because my dad developed a pressure sore whilst IN hospital-that was the only help we got but that nurse was just there to change the dressing really. Perhaps he could've got us some help though when he saw we'd have to turn him, I don't know. Maybe not his job to organise. That was another issue as we were unsure if we should even put him on his back at all due to the pressure sore he already had.

Was this a recent event OP?

I only ask because i've worked in care for 40 years and i've never known this. Usually people are discharged from hospital with a profile bed which largely negates the need for turning. So with a profile bed and carers 4 x a day that should have been sufficient.

What if you were physically incapable of turning someone?

My mum has one of the repose inflatable mattresses that was provided when she left hospital. Seems to have prevented any sores

It’s tricky isn’t it. I definitely think it that situation you should have carers but als be taught how to move someone safely in the bed. Even 4 visits a day is 6 hours between so what happens if the person becomes uncomfortable just after the carers leave or has a poo. They should give some quick training on how to roll someone safely just in case it’s needed.

Yeah I think this was our issue-it sounded easy until we realised my dad and my nan were in pain when we came to do it. I'm not a very hands on person either. We had no idea how best to do it but the way the district nurse told us both times made it seem like everyone did this! They were both men-I just mention because maybe they didn't realise how hard it'd be for two women. Or maybe they misunderstood and thought my brothers were helping but sadly that wasn't the case most of the time as they didn't live with us.

So my nan was roughly 3 years ago and my dad a few years before that so that was a while ago. I think what happened to my nan made me rethink the first time with my dad and question both situations. I know I shouldn't still be ruminating on this but I thought I'd ask and then maybe I can put it behind me and stop blaming myself and feeling guilty over it all. I think if the carers had just been organised sooner none of it would've happened.

With my nan she had dementia and suddenly got a lot worse over one weekend-doctor saw her but knew she didn't want to go back into hospital so just said put a nappy on her and leave her in bed (mum always got her up before) I'm guessing even he didn't realise she'd lose the ability to move overnight otherwise surely he would've done something.

My DM fortunately was not bed bound until the very last week when she was in the care home but she had severe osteoarthritis and I asked everywhere I could for advice on how to help her move - from getting dressed to getting her in and out of the car - and no one could help me. There is so little support for family carers.

@IthinkIsawahairbrushbackthere ah I'm so sorry to hear that. It's a very scary situation to be put in. I agree there is far too little support. Even just being shown the best way to turn someone would've helped but nothing, no training at all. They are good at getting you hospital beds quickly and commodes and stuff like that so I won't say they're completely terrible as I was happy with that aspect but no other support or advice AT ALL.