Oh brother

Tin

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May 18, 2014
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Me too, so hopeful. Assessment yesterday by community nurse and she said mum not yet entitled to hospital bed, but I will take anything they offer. It seems what I am getting is 6 weeks enabling, 2 care visits per day, physio and occupational therapy.

Some good news, mum stood up with my help and walked with aid of frame and me into sitting room to her armchair where she had a coffee and pastry. So pleased, there was very little effort on my part, I do have a back support belt that I wore yesterday, a bit uncomfortable but it helps. My next trick is to transfer mum on to commode in time for her bowel movement. I might try to get her into dining room for lunch, but who knows, what we have just achieved may be it for the day. Little baby steps I hope.

It seems to take mum 3 hours to build up the strength to move from bed. So think from tomorrow I am going to wake her early and see if this is the case.
 

Tin

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May 18, 2014
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Just wanted you to know I’m reading and thinking of you.
Sorry not got any amazing advice. I do like @Marnie63 plan one day in bed one day out. Will definitely use that when the time comes. X

Thanks, I think I am heading for the time when things will change daily and I must be prepared to change too. Have been moving furniture around in her room to make it easier for me to get all around the bed, but think it is now time to get a new bed for her.
 

Jale

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Jul 9, 2018
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We asked if Mum would qualify for a hospital bed and were told that the person has to be bedbound for at least half a day in order to be eligible. Hope that helps
 

Marnie63

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Dec 26, 2015
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Thanks, I think I am heading for the time when things will change daily and I must be prepared to change too. Have been moving furniture around in her room to make it easier for me to get all around the bed, but think it is now time to get a new bed for her.

Is it worth buying a new bed Tin if your mum is moving closer to being eligible for a hospital bed? I would hang on and keep pressing for that (assuming you want one!). You'll find it much easier as the bed can be raised and lowered, much kinder to your back. Also much easier if it gets wet as you can just wash the rubber surface of the mattress. Not sure if they always provide a mattress with such a cover, ours is an airflow one.
 

Marnie63

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Dec 26, 2015
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Just saw that you mentioned physios and OTs - maybe you can get them to press for the hospital bed. Don't buy one - you shouldn't have to, and what on earth will you do with it when it's not needed any more?
 

Tin

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Just saw that you mentioned physios and OTs - maybe you can get them to press for the hospital bed. Don't buy one - you shouldn't have to, and what on earth will you do with it when it's not needed any more?

That's exactly what the inter immediate care people said, wait and see what OT say and let them see how she is bashing her legs against the wall during her night time leg work. OT have not been in touch with me yet, but I have a list of things and adivse I need is growing! Adult safeguarding have promised me that they will chase them up for me.

Some improvement with mum, not much, but at least she is trying to stand and hold her own weight, this care team have been incredible, helped me get mum off her bed in the morning then into her arm chair and I have been getting her to stand for as long as possible and then she sits back down. This afternoon their timing was perfect, I wanted to get mum on the commode one last time and then into her wheelchair so that she could join me and a friend at table. In about half hour I will be able to wheel mum into her bedroom, get her on her bed and do my thing before it is officially her bed time.
 

Ann Mac

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Oct 17, 2013
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Hi Tin, I am so sorry to read about how tough things are for you at the moment hun :(

I think that @Ann Mac ended up buying one and do recall it made it physically easier for her.

The hospital bed made a huge difference. Mil was very mobile still, the issue for me was the incontinence and the impact on me physically in dealing with it. Bending to strip the bed, pulling it out to change it and clean under it , it all left me aching and in pain. Our GP and the CPN told us we could apply for a hosiptal bed based on not just Mils needs, but mine as a carer - that there was a 'duty of care' to me too, but honestly - that was a load of rubbish. we had to apply through the district nurses, and as soon as I explained why I was asking, it was clear that they wouldn't be rushing to help. I would have to go on a waiting list for assessment, then - if they agreed that one was needed - a waiting list for a the bed itself, and we would have to pay for the mattres anyway as they were 'not supplied'. We were clearly talking months. So - we were lucky that Mil had enough in savings to buy one, and thats what we did. My only regret is that we didn't spend the extra to have it not only delivered but assembled too, as getting it to her room and putting it together was a nightmare - so heavy and complicated!

But it was worth every penny, Tin - and if your Mum can afford it, I can't urge you strongly enough to get one. As well as it making it physically 100% easier to deal with stripping and changing the bed, it being on wheels made cleaning underneath it a doddle! As a bonus, if she was poorly or had a tummy upset and I occasionally had to give her a bed bath/change her on the bed, again so much easier when I could adjust the height, and on a couple of occasions when she had cellulitus, I could raise the foot end and keep her feet elevated, which helped too. Being able to lower it to its lowest level also made me feel happier about reducing the risk of accidents if she got up in the night - not so far for her to fall as she was getting up, something that had happened several times before we got the bed.

They are not cheap, brand new - complete with mattress, I think it cost just under £1000! but, with hindsight, I wish I had looked at second hand refurbished ones - when Mil moved out, and the bed wasn't needed at the home, we didn't know what to do with the hospital bed, so we sold it to a place that refurbished them, got I think, just £150 - it was only about 12 months old, and still had a years warranty. So I checked what they were being sold for on reburbished web sites. Found them for sale at around £250 - £400. Yes, we would have had to buy a new mattress, but even so, it would have been a massive saving of her money (though I don't regret or feel guilty for spending what we did - without it, I think I woud have had to have given up caring for her a lot sooner than I actually did) . And a lot of the firms gave free delivery and put the beds together for you.

Now Mil is in the home, we are also having an issue with her banging her legs agains the walls, BTW. She has a condition called Tardive Dyskenisia, which is typified in her case by jerks, spasms and movements that can affect her whole body. To keep her safe, as at its worse the movements are so strong and violent that she is unable to remain in a chair or bed, the home have filled her room with bean bags and crash mats, furniture with sharp edges has been removed, and that's what she now sleeps on. It sounds awful, but that gives her the freedom to move, without the risk of falls and its honestly the best that anyone could come up with. But still, during the night, she can wriggle over to the walls and kick and bash her legs and arms against them, and she is constantly bruised. I've discused this with a specialist consultant, who is now in charge of her care, and there is no way round it, no way to prevent it. The consultant advised strongly against bed rails - she says more injuries are caused than prevented by them, fractures are not unlikely if someone is thrashing their legs around the way Mil and (by the sound of it) your Mum does, against a rail. She said it was far better, for example, to have a hospital bed at its lowest level and a crash mat beside it - a fall under those circumstances is less likely to cause serious injury than a bed rail. The only thing I can think of is if you could wedge a mattress between her bed and the wall? Could that help - at least then she would be bashing her legs against something soft?

Sending you lots of love and sympthy, hun xxxxx
 

Marnie63

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Dec 26, 2015
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I guess we were 'lucky' in that mum was issued with so many things when she came home from hospital after her stroke, including the hospital bed, airflow mattress, and the Wendylett sheets and slide sheet. I still don't think people should have to buy one, but if they won't supply it, well I guess that's the only option. I would keep pressing them Tin - what about GP, could he/she request a hospital bed for you? I've found that if you get a good physio or OT on side, they can be very helpful. In our area it seems to be the physios and OT combined who have the authority to order these things.

The only thing that would worry me about the bed for your mum Tin would be the sides, though I know there are different types of bed rails and sides. We have metal railing type sides that fold down on themselves. I like these as mum can see through them when they are up, but mum does not move around much, and if your mum does, then there's the danger of her getting limbs caught in the railings. We have these huge plastic covered padded things that you can put over the railings, but they are very hard for one person to put on, and one morning I found mum's face pressed hard against one! I don't use them any more as I think they are a risk for mum (suffocation). I put pillows around her at night and this seems to stop her slipping around. I know you can get more solid sides, with a sort of netting material, to prevent limbs being caught.

As ever, each case is different, so it's a case of deciding and finding what would work best. I have wondered about getting one of those long pillows, or even a few, to pad around mum at night time. Next time Lidl have them, I'll get some!
 

Tin

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May 18, 2014
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I have removed the bed rail, when OT finally get to me they will remove it anyway. Did try a few things last night. Wedged 3 large chair seats at side of bed next to the wall and a mattress on floor in case of a fall, but she never turns away from the wall. She managed to pull two of these out, but important one stayed in place and this was the one to stop her knees hitting the wall. This is all down to her favouring that side of her body and then trying to get to her lower legs to either roll up her trousers, take her socks off, stroke lower legs or actually doing some form of cycling. By midnight when I check on her she is curled up in a ball and knee up against the wall.

I am going to check out refurbished hospital beds. and still searching for soft mesh type bed sides, lots for babies and toddlers out there.
 

Tin

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May 18, 2014
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Nothing comes easy! Been an ok day in that was able to get mum to sit on edge of bed unaided and then with my help and zimmer, into sitting room and then later into dining room for lunch. Then the afternoon comes and she is still ok. Nurse came at 5pm, mum had a huge bowel movement and we noticed her lower leg was wet, soaking wet. seeping out from wound on back of leg, swollen ankle. lack of movement and bad circulation now becoming a problem. Mum now in bed and as usual knees up and she is playing with dressing and rubbing her knees - my god what an obsession this one is! Nurse coming back at 9pm to change dressing.
 

Tin

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May 18, 2014
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I wonder if something like this would help to stop your Mum's knees hitting the wall? https://www.completecareshop.co.uk/beds-and-bedding/bed-rails-and-cot-sides/bed-side-wedges-pack
Afraid not Louise, her knees and legs go a lot further up the wall! A neighbour has suggested that I buy some rubber foam stuff and stick this to the wall and then he said that a soft double headboard might be another way. The problem is that although it is a normal sized single bed, when she pulls up her knees to fiddle she bangs them on the wall and she favours laying on right hand side and so for tonight I have pulled the bed even further away from wall and filled the gap with cushions and topped with a rolled up duvet, hope she does not pull all these out though, but it should give her enough room to pull up her legs to fiddle without banging knees on the wall
 

Tin

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May 18, 2014
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Forgot to update, nurse has been and we have discovered that the fluid is seeping out of a tiny pin prick hole, not the wound that is healing really well, thankfully.
 

Tin

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May 18, 2014
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Had a visit from physio and intermediate care nurse. Physio is recommending a hospital bed, mattress and various other equipment. Will all be delivered this coming Wednesday. So mum will be moving back into the big bedroom. Physio has also recommended 2 carers for 3 visits per day, better get our finances in order! Not going to question any of this, will take it all for now, but hopefully in time I will be able to cut this back to one and me, lots of possible things to consider, including our sitter, but she is on holiday at moment, so can't talk to her about changes yet. Like all the medical professionals I am thinking worse/worst [someone please feel free to correct my English] case scenario with hope that there is some change for the positive in time. After all she has the ability to move her legs. Mum laying on her bed at moment and knees almost up to her chest so she can stroke her knees and of course she is playing with the large dressing/bandage on her leg.
 

Marnie63

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Dec 26, 2015
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Glad to hear you are getting a load of equipment, it sounded like you were eligible. Will you be getting some kind of stand aid? It may help with transfers if mum can still stand OK. My mum's stand is very weak and sometimes quite shaky, but we are still able to use this to transfer her from bed to chair to commode, etc. Try the carer routine and see how you get on. I have resisted double ups from the agency as I need to see what's going on and after 'poo gate', I'm not going to let them loose on mum, there are just too many things to cover off with our routines and I know something will happen again. I found that it was only by trying different carer visits and routines that I found what worked best here.

What I'm finding hard at the moment is not knowing what to expect next as there have been so many ups and downs. Last night mum was walking a few steps with the frame and two of us helping, and the same this morning. I wish I had someone else in the house to help me do this a bit more often, I won't do it alone again after she fell and I thought the fall had killed her!

I'm sure you will find the hospital bed a great help.
 

Tin

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May 18, 2014
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Thanks Marnie I will fight the two carer scenario, but for now, now that she is in the system, I will have to go with the safe guarding procedure that local authority come up with, have no choice. It is all so confusing, what she can and can't do. There is a lot of equipment coming on Wednesday and I have spent most of the day clearing out my big bedroom. She has been on her bed all of today and have to admit I hate it. A few ideas running through my mind already.

The hospital bed and mattress is what I am most pleased about and it was the physio that said this was required as yet not heard from Occupational therapists. I think the intermediate care team work as a whole for each other.

The strangest thing for me to get my head around is the sudden lack of mobility and all that entails. The mental changes took in my stride, worked around them and just got on with life, both of us still able to get out for a few hours most mornings, but this present down slide changes everything and I am sure you know this so well.
 

Rolypoly

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Jan 15, 2018
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I hope all the equipment and care visits help you and your mum, and that you can sort out what best suits you.