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Hello everyone - Carers UK Forum

Hello everyone

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80 posts
Hi there

Thought I'd introduce myself first and then I have a question please :)

I've been my mum's carer for a few years now, (brother did help for a while but he's moved out again now). I already lived with her before she got ill, as I have an illness too (ME/CFS. Mum was my carer for many years. An absolute angel).

She has Parkinson's Disease, Dystonia, Osteoporosis and a spinal injury.

She's been in hospital since April (first in main hospital, now in community rehab hospital). She was admitted with a heavy PR bleed. Second bleed. Been back and forth to A&E before that.

She's worse now than when she went in. This seems to happen all too often from what I've read. Her mobility has really deteriorated. Admittedly, it was bad already but after a while in hospital, she was unable to walk at all. Physiotherapist, was literally dragging her along the floor with frame. Was really upsetting to watch. I could see her whole gait had changed, from her usual Parkinson's gait, to what I could only describe as spastic. I knew something else was going on but Physiotherapist wouldn't believe me. Said, if Mum didn't start engaging, then she wouldn't be able to go to rehab and would be sent home with hoist and carers.

All sort of other horrible things happened in hospital. Continually late with her Parkinson's meds and completely missing out a dose because it wasn't on chart. A fall. Bruised her foot badly. I think that made the Dystonia appear, (she did have some symptoms of cramps but nothing like now). She could no longer put her foot down and this was causing the spasticity. Finally, her original neurologist diagnosed Dystonia. Her calf muscles are in continuous contraction and he was unable to even manually move her ankles/feet. That's what was/is causing the gait she has now. He's referred her for Botox treatment but that was back in May and we still haven't heard about an appointment.

I won't go into all the other bad experiences. There were more and there have been some in the rehab hospital as well. Another fall and verbal abuse from some of the staff. Doesn't seem to be any understanding of the horrific pain either. Always delay in bringing her Oramorph and we're told to "be patient", when Mum is crying out in pain! Staff just walking past ignoring her cries with blank looks on their faces. I made one complaint. I could make a lot more. All they seem to be interested in, is how much noise Mum makes. Her notes are filled with whether she's been calling out or not. Then there's the Quetiapine...we insisted they wean her off it (put her on it in main hospital when she was confused - I knew it was sleep deprevation and Parkinson's night terrors but would they listen?). So rehab were weaning her off it, until last weekend when she was calling out over and over in pain. They called out of hours doctor who prescribed it again. This time for anxiety and said it would relax her muscles and help with the pain. I'm very unhappy about it to say the least.

We are currently waiting for decision on Continuing Healthcare. Then Mum can be discharged. Funding or not, we will be having carers coming in now, as I can no longer cope on my own. She is being recommended for it, (social worker at assessment meeting was absolutely brilliant! She dominated the meeting and was very persuasive. I know how lucky we were to get her). Doesn't mean she'll definitely get funding of course and I'll be amazed if she does, as I know how difficult it is to get it. If by some miracle, she does, I wouldn't be at all surprised if they take it away again after 3 months. Without that social worker, she wouldn't have got as far as she has now.

Finally, to my question please!

We are currently being pressured into a hospital bed at home by the OT at rehab. I know some of you would be delighted to get a hospital bed, as some of you are refused them when you need them, which is not on either. Mum doesn't want one though. She finds them very uncomfortable (has electric airflow mattress which she hates) and doesn't want downstairs filled up with so much equipment. We found a good solution, so we thought. A made-to-measure chair bed with special gel topper to protect high risk patients from pressure sores. It would assist Mum with getting into and out of bed and when using as a chair, she could recline into sleeping position, whenever she wanted/needed to.

Manufacturer was being really helpful too. Would go to rehab hospital to demonstrate and see if suitable for Mum. Then if she wanted to go ahead, they would loan her one until hers was made. Even OT admitted it looked and sounded good for Mum but then she threw a spanner in the works. Said because it doesn't raise to carers height, whichever agency was employed would probably refuse to care for Mum, unless she had hospital bed (it had been arranged for delivery on Monday but once I started enquiring about chair bed, I thought we could cancel hospital bed). I said we'd take that risk and get hospital bed afterwards if they really insisted. She said that could delay Mum's discharge and also, the high/low bed she'd ordered for Mum might not be available by then (only a few in county she said). She said think about it over weekend and let her know Monday morning.

I asked if she could postpone it for a week, as Mum not being discharged until Continuing Healthcare decision made. She agreed to postpone for a week but has it booked for following Monday.

It looks like we're going to be forced into having a bed Mum doesn't want. I don't want it either. We'll have to get a lot of furniture moved and probably taken out of house. I don't know how they expected me to get that organised at such short notice. I keep telling them I'm not well either. My health is really deteriorating as well. My brothers say they will come and rearrange furniture but there's going to be stuff all over the place. Won't feel like a home anymore.

Mum was right, once you get these people involved, you lose control. The chair bed would be such a good solution for Mum, as she has such poor mobility. She was delighted when I told her the news about it. To be able to start and end in seated position, rather than having to swing her legs and shuffle to side of bed, which she really struggles with, would be a huge help (and maybe use the mechanism that helps you stand as well. Tho not sure if that would be good for her or not. Might make her feel like she's falling or even make her fall).

Looks like we're going to be forced into having hospital bed (or finding our own profiling bed. That's not the issue though. It's a matter of space) or no carers :cry:

Any thoughts? You'll probably agree with OT, because of risk of injury to carers backs but I did a lot more manual handling than they'll ever be allowed to do, I am unfit and unwell and I didn't do myself or Mum any injury (Mum is tiny, so it's not like they're dealing with someone heavy. She's only 4ft 9 and weighs only 6 stone, sometimes less). The OT said Mum's washed in bed every day and used that as an example of why they would need to raise bed. Rules are rules I know (incidentally, they have bruised Mum's arm, which I assume is from too heavy handling. I have never bruised her in all the time I have cared for her. So much for their rules and regulations! Sister at rehab asked if Mum wanted to complain but she said no).

PS Mum is able to walk a little now with her frame, albeit on her toes. The rest of the time they use the wheelchair. They're supplying a rotastand for home and commode on wheels. General hospital was recommending hoist but rehab want to keep her as mobile as possible.
Hi Blue Mermaid
I am in a very similar position to yourself in many ways Dad in hospital awaiting full CHC assessment and hospital bed arrived at home the same day Dad was admitted to hospital so he hasn't actually used it yet. He has also been in terrible pain amongst many other things and confused on Oramorph plus other pain med cocktail.
The bed is assembled by the delivery team and is a shade larger than a normal bed but not so huge as you may be expecting- 2 or 3 inches each end perhaps.
I am also gettting carers in when Dad comes home whatever the CHC decision and yes they will expect and to be fair deserve to have an adjustable bed if they are assisting a patient to that extent. In my "spare time" I wear the opposite hat and do care work myself so I can't stress enough how important it is for correct and safe manual handling. I think many things change once we get to this stage and you must be prepared to make the changes and find ways to cope, shove things in untidy heaps and forget about them for a while!
Regards moving the furniture, I had the same problem and had to get rid of Dad's old single bed in a flash so I advertised it on Freecycle and specified a small time slot of 2 hours during which it had to be collected and removed by the new owner- worked a treat and no work for me. I'm afraid once carers start arriving things aren't the same anyway and you will just have to adapt to the new "now" for the time being.
I've been given a five day CHC package to get Dad home and then they will do a full assessment when he is on home turf.
Hi Henrietta and thanks very much for your reply.

I should be in bed asleep but everything is going around in my head.

Sorry to hear your dad is so poorly and that you're in a similar situation to me.

Mum has already had the full CHC assessment. OT said she'll stay in hospital until decision about funding is made.

If it was just a matter of swapping Mum's old bed for the hospital bed, that wouldn't be so bad but virtually all current furniture downstairs will have to be moved to make room for all the equipment.

You've said just what I've been thinking. That nothing will be the same now. Is this what it's going to be like? They take control and we have no say in anything anymore? Will carers come into our home and take over?

I understand it from a carers point of view. After all I've been caring for Mum on my own 24/7. When I was doing that, people constantly felt sorry for me. Professionals included. Their comments irritated the hell out of me. I didn't want their sympathy. I was doing it out of love. I wanted them to feel compassion for Mum's suffering, not mine. They were ignoring Mum and making comments to me about how hard it must be for me. What about for Mum?

Now, I'm taking a step back, it's almost the opposite. They're not interested in me anymore or how I'm coping. Of course, I'll no longer be saving them money!

I feel angry, because they're literally just dumping all that equipment on us, without any help whatsoever. What if I wasn't here? I keep telling them I'm not well either but they say nothing in reply. If I hadn't asked OT where the bed was going to go downstairs, she wouldn't have even considered where we were going to put it. She had a quick look round before she left but the places she suggested were ridiculous. First place was along patio doors in dining room. That would mean moving 3 pieces of furniture out of the way. Sun pours in through the glass and would be boiling hot in summer (even with curtains closed). Blocking patio doors as well. What a great idea! Next idea along radiator. Another great suggestion. Firstly, nowhere near a socket and secondly, along a radiator in the winter? Would be boiling hot again. Final suggestion, in lounge, along chimney breast. There would be hardly any space other side, so wouldn't be able to put commode next to bed or anything else that was needed and dangerous for Mum to get out there. So, if we were to put it in lounge, we'd have to move out the whole 3 piece suite. So, we'd have to put that in dining room but where do we put the dining room furniture? Honestly, it's a joke.

If they insist on hospital bed then they should send in someone to co-ordinate the whole thing in my opinion. Assess where all the equipment should go for safety and then help us to achieve it. All they are concerned with is making sure Mum gets a care package asap and they don't want anything getting in the way of that, so they can discharge her asap as well. That's what this is about. OT said it herself (could delay discharge if agency insists on hospital bed). I can see right through them.

I'm sorry but talk about being molly coddled (sp?). If only they were so caring towards their patients. When I watch them unable to help Mum when she's struggling, (because they're not allowed to), I just find it ridiculous. I want to just get in there and do it myself. As I said, I've never injured myself or Mum. Why couldn't they sit down and wash her if chair bed can't be raised. I really can't see them injuring themselves. I've been doing it for years.

There is no thought here for what Mum wants or what is best for her. That chair would be a godsend for her mobility. That should be the priority. She's uncomfortable on the mattress they provide and can't sleep. Where's the compromise? There is none. It seems what they say goes. Where's Mum's freedom of choice and her human rights? She no longer gets to choose the bed she sleeps on in her own home?

As I said, I can see this being a sign of things to come. I'm not going to just role over and let carers come in here and rule the roost. This is our home and I won't let them dictate what happens in it. It's been bad enough having no control in hospital and watching them neglect Mum. It's not going to happen in our home as well.

Ok, rant over! I know you won't agree with anything I've said (and I'm just waiting for someone to say, well you'll have no carers then!) but at least, I have got it off my chest!

PS I hope things work out ok for you and your dad with carers coming in. It's heartbreaking watching them suffer. I hope they improve his drug regime. All the best with everything.
Still here and still ranting!

Basically, the hospital bed isn't for Mum at all. It's for the carers.

Mum has made it clear she finds it very uncomfortable and therefore, doesn't want it.

She has to have it, in order to have carers come in.

Therefore, it is for the carers and not for Mum.

That can't be right surely?

Maybe that's what my argument with OT should be.

Also, it's more than likely that Mum will refuse to sleep on it and insist on sleeping on manual recliner we have or the sofa! It wouldn't be the first time!
Hi Blue Mermaid

Dad used to sleep upstairs but he fell down the stairs a couple of years ago and has been kept downstairs since by myself and the OT's insistance. I had a similar problem with the dining room and had to turn one end of it into a bedroom. The Dining Table has been pushed up a a corner and is now just a "dump", 2 of the chairs are out in a shed and the other 2 are along the kitchen wall so Dad can rest on his way to the toilet. I managed to keep the bed away from the sliding patio door but it does s tick out into the room and the commode floats around the middle of the room and needs to be navigated on most journeys. We've also got a trolley and a zimmer which make quite an obstacle course. I think with your layout that you need to come up with the least worst option. From your description next to the radiater is the biggest no followed by the direct sun of the patio window- that leaves the chimney breast as the least worst option so I would go for that. You'll need to forget the concept of Dining Room for the time being and work out the most practical place to have meals. I use a lap tray and Dad has refused one so he gets a tea towel on his lap, and we wheel things in on the trolley .
I understand why you are upset about mum losing her rights etc but her overiding right is that to be cared for , and as in my father's case when he is too poorly to appreciate that himself, it is up to us to see the bigger picture. Your mum sadly sounds to poorly to be able to stay in her favourite bed independantly so it is a case of working out what is top of her needs and by what you say it is care at the moment.
The carers won't come in and take over- a good idea would be to have a regular contact note book for 2 way notes, then you can point them in the right direction if they are not getting it right or helping you in the best way. I can't guarentee they will read it of course!
I've just had several weeks of Dad refusing to use his own bed- hence the arrival o fthe hospital bed and you won't be able to get professionals to help with persuading mum to go to bed if you have refused their hospital bed. If you mum takes to her chair 24/7 she will end up with pressure sores like Dad, so it should be avoided at all costs- I wish I had jumped up and down sooner. It is very hard to deal with an elderly father who keeps telling you he is fine and will do it later.
My mum passed away recently after years of ill health, hospital admissions, and finally a year in a nursing home. You are not going to like what I'm going to say, it's meant to challenge you! Is having mum home at all realistic? In my own opinion, if the only room considered "suitable" is the lounge, then it's not suitable at all for an elderly person, needing support for every aspect of life, especially bodily functions and associated smells. Would it not be better for mum to move into a nearby nusing home with 24/7 nursing care. Then you would have a home, and she would have the care she needs? I have a friend who nursed his mum until she was 103, he lost nearly 20 years of his own life in the process.
PS My mum hated one air mattress, it turned out that it hadn't been set up properly. The air pressure needs to reflect the weight of the patient and their medical condition. Maybe mum's needs adjusting?!
Oh dear, what a mess!
No simple solutions, but as long as you know that you have no legal duty to care, you are probably OK. Do whatever is best for yourself.
Hi Blue Mermaid,

Rant away, that is (partly) what this Forum is here for. And you are amongst people who understand and have been or are undergoing similar things.

What is important is what is best for mum in her CURRENT condition, and of course what is best for you. I hear in your posts a sense of anger, possibly mourning for what life was before mum's health declined. I have been there too. Bowlingbun is right. One major decision is whether your home, with adaptations and carers is the best place for mum now. Would she be better looked after in a nursing home with 24 hour care? You would still be caring for mum but not doing the physical care. Would she benefit from having that level of care, and having you back as her daughter?

If you decide against that, yes, a bed in a small place does dominate. I had that for mum myself for six months. And yes, it does sometimes feel that the carers are intruding. For mum's sake though it is vital that you are comfortable as you can be with the carers and work together as a team.

You have a lot on your plate at the moment but it will come all together. When I had a similar crisis, I found it helpful to have a notebook where I wrote every phone no, every conversation and lists of things needed to be done that day. Looking back at that book, I don't know how I got through it but I did and you will. The book somehow enabled me to take control and not forget anything. The hospital staff were not so keen!

Anyway, I have said more than enough. Look after yourself, and you too Henrietta and rant away when you feel like it.
Anne x
I would most definitely say that one of the plus sides of residential care is that you are instantly freed from all the 'dogwork' of caring - staff take over all the washing, toilletting, laundry, meals, nursing care, sleep issues, etc etc etc etc.

And YOU are left only to enjoy your mum's company!

I am not the only carer here who has found that one's relationship with one's caree improves enormously once the 'burdens of everyday caring' are lifted, and you can get back far, far more to the kind of times you used to have together before care needs intruded and took over both your lives.

When someone moves into a residential home it is not so much a case of 'getting rid of the person' but of 'getting rid of the burden of caring for that person'.......

Also, and I appreciate this may not be possible because of your mother's daily care needs, for about a year, while my 90 y/o MIL was in a nearby home (her care needs have increased with her dementia recently, so she has changed homes), I had her for twice weekly 'sleep-overs' whereby she came to me in the afternoons, and we had the evening together, which was 'cosy' and then she slept here, and I took her back again to the home for lunch time. If it's possible with your mum, a variation on that might be, say, to have her with you for weekends.

I do think that what 'breaks' so many carers is the 'non-stop' nature of caring. If carees could be, effectively 'weekly boarders' so to speak in care homes, that seems to me a very practical and far less 'all or nothing' way of 'sharing the caring' between ones self and professionals, and yet for preserving a degree of 'home life' for the caree.

Anyway, just my own take, and I do hope that whatever happens with your mum, that it is sustainable, and does not spoil this time with her.
Thanks very much for another reply Henrietta and for sharing your experience with me and offering advice.

Thanks very much to everyone else who replied as well.

So sorry for your loss Bowlingbun. I hope you are coping. I didn't know the mattress was adjustable. I should ask them in the rehab hospital if Mum's could be adjusted while she's still there, to make it more comfortable for her. Who will be responsible for setting it up and adjusting it at home so it's right for Mum's weight etc I wonder?

To all of you who suggested residential care. No, no, no! I've gone through 3 months of extreme stress and worry already with the so called 'professionals', who haven't a clue how to look after someone with Parkinson's.

Mum also went into a nursing home for a while to give me some respite and there were the same problems there, even though, they supposedly 'specialised' in looking after patients with Parkinson's Disease. There was one awful night when my mum was in a chair, unable to move due to an 'off' period that Parkinson's patients get (when their medication suddenly wears off). She wanted to be helped into bed. The nurse told her to "get up and use your frame like you do at home!". Mum phoned me extremely distressed. I spoke to the nurse and said I thought they were supposed to be trained in Parkinson's Disease. He said he'd never seen a PD patient like this. I said, "Parkinson's Disease is a *movement* disorder and the clue is in the word *movement*!!!" Idiot! They were also useless with her medication. It's so important to get it to PD patients on time every time. They're useless in hospital with this as well.

The day she arrived at the nursing home, the first thing one of the nurses said to me was, "she must drive you nuts!" The disrespect of some of the staff in these places is unbelievable.

As I said in my first post, pain meds are delayed as well and Mum ends up crying out in pain and all they care about is the amount of noise she is making.

They show no compassion when she can't sleep and seem to think she can control her insomnia, asking her questions like, "are you going to sleep tonight?" If only she could control it. It's torture not being able to sleep when you're so poorly.

Some staff have been verbally abusive towards her, calling her a baby, selfish, and she's been told to stop play acting when she can't move. As I said, they don't seem to have a clue about Parkinson's Disease.

It was the last straw when one of the carers at rehab was abusive about my mum to me! I read her name badge and complained to the staff nurse about her. She was horrified and said to me herself that it was abuse. She said she would be talking to her and the rest of the staff and asked me to document any further incidents.

So, no, I will not be suggesting my mum goes into a residential home. The last 3 months have been absolute hell.

It might be that we have no choice in the future but I'm hoping and praying it won't come to that. Most PD patients do have to go to nursing homes in the end. I will be beside myself with worry. The only way I wouldn't be is if I moved in too! Even then, I'd have no control over her meds etc and would still be running around in circles, trying to get them to help her and getting nowhere fast. My mum needs 1 to 1 care and as they said in the nursing home she went to for respite, they haven't got time for that.

One of you talked about smells etc in the lounge. Of course, it's not ideal and we've already had to deal with all of that in the past. I'm sure many people here have to deal with it every day.

As for the bed, my brothers are coming over tomorrow to move furniture and help me decide where it should go.

Has anybody got a pic of what the bed will actually look like (its going to be a high/low one)?Also, Henrietta, you said it wasn't much bigger than an ordinary bed but the OT said it's 7ft long and will need 8ft clearance. She said 3ft wide but I bet that's just the mattress. I asked about linen and she said a normal single bed sheet will fit. Is that true?

Thanks again everyone.
80 posts