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Under pressure - Carers UK Forum

Under pressure

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I'm very pleased to have discovered this forum so that I can hear how others are coping with difficult caring situations.

I care for my mother who is 95, has been disabled (dislocated hips) from birth and in the last 8 years has developed dementia. I live in a sheltered housing studio flat and she has been on the waiting list to move to my building for three years. Two months ago I moved her here thinking this would make life easier for both of us and much safer for her. Previously she was in a bungalow on her own and had always refused to let me get carers in.

I knew it may be difficult for her to adjust to moving but because I brought her to stay with me a couple of times a month for 5 years and she always enjoyed her visits and chatting with neighbours, going to the Christmas parties etc. I thought she would settle. How wrong I have been. The move seems to have tipped her over the edge with dementia and it is now far worse, for the first time she often doesn't know who I am.

I have asked social services for support and discussed with them my strong belief that she now belongs in residential care. She struggles to walk so often cannot reach the bathroom in time, cannot make herself a cup of tea or anything to eat so is totally dependent on others for her care. She often can't lift her legs to get herself into bed and I have to help her. Incidentally, I have been doing her shopping, housework, laundry, showering etc. for years.

Social services are refusing to recommend her for residential care as she doesn't meet their criteria. I understand the criteria to be that they put in place carer visits, day centre, respite for me and if that fails then they will consider residential.

I feel pressured, almost bullied by social services to accept all of this in-home help. I live two floors up and slept on an airbed in my mother's flat (bedsit) for the first six weeks because of her confusion. Now monitors have been installed, a bed sensor and door sensor so if she gets up or falls from bed, leaves her flat, I have a pager that alerts me. Social Services are telling me I need to back off from giving her so much care and being so concerned about her and with the monitors, carers 4 times a day and three days a week at the day centre I should be fine.

The fact that the pager could go off at any time means that although I can sleep in my own flat I am not relaxed. But they just say I need to learn to switch off in my head. I've even been told my mother has been "over cared for" by me. I acknowledge that as I've felt responsible for helping her since I was a child I am overly protective but it is very difficult for me to sit back and accept that sitting in her armchair on her own, totally depend on carers 4 times a day and unable to make a cuppa, wetting herself before she can get to the bathroom and can't get herself into bed is, in their view, an acceptable way for someone to live.

We have started with one carer at 7:30a.m. who has been lovely and also reliable. For the past week she has been on holiday and the replacements have been late every morning, on Saturday she was 90 minutes late and I'd had to wash my mother as she'd had an accident so called the carer and told her not to bother coming. If I can't depend on them being on time or a little late I get even more stressed than I already am. When all 4 visits are in place the first will be at 5a.m. to get her up for the bathroom and put her back to bed, so when my pager goes off I'm supposed to "know it's a carer" and switch off in my mind and go back to sleep! This morning the pager went off at 5:25, I went down and found mother in her chair in the dark so I put her back to bed.

I'm frustrated that social services have done a carers assessment on me, have had a letter from my GP confirming how stressed and physically and mentally exhausted I am, but have this "rule" that says she has to remain in her own home. We have both worked all of our lives and never made any claims for help until now and I'm extremely discouraged. Any encouraging words would be much appreciated. Apologies for this being so wordy for my first post.
Hi Sandra
What a difficult situation you are in. Can you perhaps increase your reliance on these carers and take a step back to rec harge your batteries. Perhaps your mum could use continence pads to keep her comfortable while she waits for her carers. Try not to worry over the time of arrival. There will always be delays with previous clients over running, schedule changes due to staff sickness and traffic problems. Why don't you let Social Services be the first port of call instead of yourself and then you can relax when you go to bed. If you keep working behind the scenes , it will just add to their impression that your mum can cope on her own.
It may be a case of being cruel to be kind and not making a rod for your own back
Hi Sandra,

I don't have any practical advice for you as your situation is not one I've any experience of but I know others on here will have plenty of info for you and I just wanted to say welcome and I hope that things start to get better for you soon.
Thanks to both of you. I feel better just knowing I can use this forum and there are people who really understand.

I am trying hard to step back, that's what others are saying too. It's so difficult for me to think of my mother being hungry and thirsty and also being very confused as she often is in the morning. Mornings are her worst time. But my health is really suffering and although social services did a carers assessment on me, what they have put in place is all that they will do.

After I wrote this post yesterday I spoke with the care agency and explained what had been happening and they said I should have been called if the carer was going to be more than an hour late. I also had a call from my new social services case worker and brought her up to speed.

My mother is usually a happy person, she's been a feisty fighter all her life. Yesterday she found everything I said funny and laughed. It's heart breaking for me sometimes. Thanks again for providing this forum.
Have you seen your mum's Social Services Needs Assessment? Your Carer Assessment? Keep a diary of everything that happens in the next week. Date, time, etc. You have a right not to care. I totally agree with you, it's now the time to consider residential care. After 40 years of supporting my mum, I had a battle with SSD, mum spent the last year of her life with 24/7 care which she needed. Surely they realise that at her age it's not surprising she is failing fast!?
Henrietta wrote:Hi Sandra
What a difficult situation you are in. Can you perhaps increase your reliance on these carers and take a step back to rec harge your batteries. Perhaps your mum could use continence pads to keep her comfortable while she waits for her carers. Try not to worry over the time of arrival. There will always be delays with previous clients over running, schedule changes due to staff sickness and traffic problems. Why don't you let Social Services be the first port of call instead of yourself and then you can relax when you go to bed. If you keep working behind the scenes , it will just add to their impression that your mum can cope on her own.
It may be a case of being cruel to be kind and not making a rod for your own back
Hello SandraR,

I'm probably known on the forum for being blunt & telling it how I see it but cases like yours make me so angry.

I couldn't agree more with Henrietta.

What carers seem to not realise is that social services won't help unless they're forced to help & that they help on a 'who shouts loudest & is likely to cause them most grief' basis.

Just drop off the keys with social services & tell them to get on with it as you'll be out of the country for 2 months.
Hi Sandra, what a worry for you.
Unfortunately, care workers visiting 4 times a day is usually the maximum that SS will provide for care at home. They will only advise residential care if it is shown that she cannot cope at home with this. Unfortunately, it is very difficult for us, as carers, to see our loved ones "fail" like this, so the natural reaction is to fill in the breach. But all the while we are doing this, nothing will happen.

So often it takes a crisis - our caree ends up in hospital, or we have a carers breakdown - before anything happens.
crocus wrote:Hi Sandra, what a worry for you.
Unfortunately, care workers visiting 4 times a day is usually the maximum that SS will provide for care at home. They will only advise residential care if it is shown that she cannot cope at home with this. Unfortunately, it is very difficult for us, as carers, to see our loved ones "fail" like this, so the natural reaction is to fill in the breach. But all the while we are doing this, nothing will happen.

So often it takes a crisis - our caree ends up in hospital, or we have a carers breakdown - before anything happens.
Hello Crocus,

Or to sum up your post in two words 'emotional blackmail'.
Hi Sandra,

And welcome to the Forum.

I was in a similar position to you this time last year. Sadly, you need a crisis for anything to change, it seems, with Social Services. One suggestion - could you just have the pager for mum leaving the flat and not for her moving from room to room? I would have found that unbearable; you must constantly be in a state of high alert. This means that you would be relying on four care visits a day to check that mum is OK, plus your visits.

The worst that could happen is that mum could have a fall and be found on the floor by the careworkers. This would oblige them to call an ambulance. I know this sounds dramatic but I found the only way to get listened to was when mum was in hospital and I refused to have her back. In fact, I threatened to withdraw all support and instigate legal action against the authorities if they sent her home and she ended up back in hospital. It was the hardest thing I have ever done but it was the only way to get them to listen.

Incidentally, I never found a way of ensuring that careworkers turn up on time. Their schedules are so jam-packed and they are reliant on public transport for the most part. Even if mum was in residential care though, she would not have her needs seen to immediately and may still have to wait her turn to get attention. All the care homes I have been in are under-staffed.

In the meantime, I would suggest visiting homes that would be suitable so that you have an idea of which homes would be best for mum. If Social Services ever agree to a home, sometimes you have to move very quickly and you may even need to have mum's name on the waiting list for a vacancy.

Also I am assuming that mum gets all the benefits she is entited to, Attendance Allowance etc. It may be worth checking with Carers UK Adviceline as if any extra money could be found that way, it may be worth paying for someone to sit with mum for a couple of hours so that you can get a complete break.

Good luck, Anne
It is so helpful to read the replies here and to find so many people who understand and offer advice and support. Thank you so much.

I'll just clarify the monitor/pager situation, there is a bed sensor pad so I get a page 15 minutes after she gets out of bed. Unfortunately when she fell out of bed last Wednesday the pad slipped and I guess her body put pressure on it so it didn't go off. It was when I went down to check on her at 6:30 I found her on the floor. There is also a door sensor that pages me if the door is opened as she started going out into the corridor when she first moved here. I can change the timings on the programs myself and if I could rely on carers coming in the morning I could stop the alerts from going off before the carers were due. Oh and she isn't able to get herself back into bed as a) she can't lift her legs and b) she doesn't know that's what she's supposed to do if it's early.

Anyway, the sensor went of at 6:05 and I went down and put her back to bed. I tried very hard to let go this morning, take a step back but instead of going for a much needed swim I stayed in my flat because I felt I had to be sure the carer came and got her ready for the day centre by 8:30. Well I lasted until 8:25 and went down to check - no carer had been and no-one showed up at all. I got her washed, dressed fed and watered ready for the day centre pick-up. Of course I've called social services and told them what happened and asked how on earth they expect me to take a step back when this is what is happening. I'm waiting to hear back from them and also from the care agency.

I usually end up in tears I'm so frustrated and exhausted and I feel like screaming at them sometimes. So thank you for letting me vent and share all of this with you.

As far as residential care goes to be perfectly honest I just want the burden lifted from me. She wouldn't have my "perfect" care but she would have carers on site even if they were busy. I often pray that she will slip away in her sleep one night, it would be a great sadness and hole in my life but it would also be a relief that she went peacefully, not with a crisis or a disaster.