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Under pressure - Page 2 - Carers UK Forum

Under pressure

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SandraR wrote: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.
Hello SandraR,

To me it seems that the pager alert system's causing you more problems than it solves since you're on 24 hour call.

Turn it off & you'll not sleep with worry, turn it on & you'll get disturbed every time the pager's triggered since as you say, until you go & check you don't know whether the 'emergency' is genuine or not.

One thing's for sure you can't go on like this & events will overtake you at some stage but it shouldn't have to get to this.

Cut the ring fenced foreign aid budget to India, who's sending a spacecraft to Mars, limousines for African dictators etc & spend it here on carers!!!!!!!!!!!!
Yes Sandra, I agree entirely with the sentiments of slipping away, msny of us can identify with that. Every single time carers are ver late, do something. First find out the email addresses for the care agency manager, your social worker, her team leader, the Head of Social Services at County level, your own councillor who hoes to get re elected, and the county complaints officer. Put the in your email address as a group. Each time anything happens, send an email to all of them, headed Formal Complaint 1...2...3 and so on. This will ensure that they know what is going on, and cause the complaints officer so much work that he will, very quickly, do anything to please you and stop the flood of emails!
Hi again. I've had so much good feedback, advice and suggestions here it has really helped me. I realise that although I have good friends who listen and give me emotional support they haven't the experiences that we've had. It's made such a difference to me, reading and being able to write here.

This morning a new carer showed up and didn't have the code to get into the building or the key safe code. Second time this has happened in 5 days and I'd already spoken with the care agency after the first incident and was assured it wouldn't happen again. The scheme manager here happened to be in her office and let the carer in and told her to come to my flat to get the key safe code. I told the carer to leave and that I would take care of my mother.

After reading your advice here I sent a very strong email to social services last night telling them I did not want to deal with this particular agency any longer and that I wanted morning carers cancelled altogether. After what happened this morning I called and left a voicemail adding this to last nights email.

I told them in my email that with the exception of the day centre, everything they had put in place so far had caused me more stress than ever. I do have copies of both assessments by the way and it says throughout mine that I am mentally and physically exhausted and feel strongly that mother belongs in residential care. The result indicates to me that the carers assessment is a waste of time.

The bottom line is that I will have a carer at 11 and 14:00 and they will give mother snacks and tea and make sure she goes to the bathroom. I will go and see to her in the morning when my pager goes off meaning she is out of bed. I can't tell you how much better I feel already, I won't be so stressed in the morning waiting for carers who never show up or who are too late. And the carers during the day mean she won't be hungry or thirsty and I have some free time.

Oh and thanks for mentioning labelling my emails Formal complaint 1, 2 etc. They have two from me entitled this way now.

Can I ask if anyone has experience of respite? I'm apprehensive about it as mother was so confused when I moved her here and it could be difficult when I bring her back home. However I have been given this by social services and have asked for a week in June. They have told me it is subject to the care home accepting her after they assess her. I'm waiting for them to contact me to arrange the assessment and feel I can't book a few days away until I know it's a sure thing. Any advice or experiences would be greatly appreciated. Thanks.

I too was very apprehensive about it and it took months of pleading, cajoling and downright nagging to get my mum to agree to it.

To my intense relief, mum, who was never a "joiner in", coped quite well. She drank tea (first time in 25 years) and behaved herself much better with the staff than she ever did with me. I am not saying it was perfect but certainly it went much better than I could have hoped. Hopefully you will find the same thing. The difficulty I and many others have is in finding suitable respite places.

Good luck, Anne x
There have been some forum members who have had temporary respite which has then become permanent. Be sure to ask the msnager to write down every single thing they do for mum. Then you have an unbiased opinion on her day to day needs. May be helpful when dealing with SSD. If the struggle to cope with her, den
mand a review before she is discharged.
I've been told which care home she will go to for the first respite (subject to their assessment and acceptance of her) and it has a good reputation. I have to think about what I'm going to tell her as she too has never been a joiner and has always fiercely resisted any kind of help (what I do isn't help of course :) ).

When I mentioned to her yesterday that she was going to the day centre she asked if I was going to and when I said no she got upset. Of course she instantly forgot but I'm constantly learning and I realise I shouldn't mention day centre. So explaining respite requires some though on my part.

I've had it suggested that once she's there I refuse to have her back but I don't think I could do that. I will do as suggested and ask the manager to document everything especially how dependent she is on others.

I'm still working with the care agency and social services on the daily care and hope that it is finally sorted out and I can really trust them to turn up or call if they are running terribly late.
Hi All,
It's not very often I get depressed and let the pressure show. But today it's different with a return of the Government. And the failure to deliver my heat drug and diabetes drugs. On question as to why I don't have them? They say they have non in stock. So I will have to do without. The last time that happened I ended up in A & E followed by the Intensive care fore a week. So you see I'm sort of naughty off of the water side. Please note I didn't swear. Until the next installment.
Sandra, my MIL is most definitely not a joiner! She lived a contented and largely solitary life as a widow for thirty years, with only a very few friends. I would never have thought she would 'join in' with the social side of life in a care home. BUT, and I think this is because of the dementia, she in fact joins in with everything (bar religious services and singsongs!!!).

I think what often happens with dementia is this - that they become like 'toddlers' and just as a toddler on its own will be bored in minutes because they don't know what to do on their own, but as soon as an older child or adult pays them attention and involves them in something, they stop being bored, so it is with 'second childhood'. My MIL can't 'self-motivate' any more, she doesn't know what to do (except, thankfully, turn the telly on and off!), but now she's in a care home she happily has communal meals and then goes to the communal lounge and takes part in whatever activity is going on, whether it's chair exercises or painting etc. I would never have believed it if I hadn't seen it with my own eyes!

So, hopefully, you will find it the same for your mum. The staff will 'guide' them into activity, and the mere act of paying them attention and jollying them along is what seems to be appreciated when dementia sets in. The routine and the 'someone telling them what is happening' seem to be comforting.

I do wish you all the best, and I would without hestitation recommend you at least try respite care for your mum, and who knows, it may turn into something longer.

The asssessment, from what I know from my own MIL on pre-entry, seems to focus on trying to establish what memory is left, what abilities are left (eg toileting, etc), and 'social skills' (eg, are they aggressive, shouty, etc ), and also, if they are inclined to wander (some homes have 'lock-down facilities' and can cope with wanderers, some don't.)

Yes, your mum may well be confused, and may well 'object' but, again like toddlers, the way she behaves to you is not necessarily the way she behaves with the staff. She may appear to 'play up' (not deliberately) to you, and be clingy or tearful, but once you are gone the staff will divert her and pay her attention and get her involved in something else.

Please also bear in mind that if she does move permanently into a care home, it doesn't mean you can't visit, or take her out for outings, and that one huge advantage is that because you will have been freed from the daily stress of 24x7 caring, you will enjoy her company so much more!

All the very best with it all - Jenny

There is no easy way to explain respite. I claimed the doctor (she liked him) had told me that if she did not have respite, I would be ill. We both agreed that we did not want me to be ill, that then she would end up in a home, perish the thought. Respite seemed the better option "for my sake". And yes, eventually she did end up in the home where she had had respite.

Grab the opportunity with both hands. I was very nervous about it but it went much better than I ever imagined.
Hi all, it's been a while since I started this string and got such great support from so many of you. I now feel strong enough to share the experiences of the past few months.

I did take a respite break for 8 days and mother was ok in the care home, she didn't say anything about it when I picked her up and never spoke of it. Not surprising when she never recalled she'd been at the day centre as soon as she came back from there. I purposely didn't call the home as they assured me they would call if there were any major problems.

However, being back in her own flat she became confused again and kept getting up from bed, sometimes only an hour or so after I'd kissed her goodnight. My pager would go off and I'd go down and find her in her armchair not knowing what to do and quite distressed. So I ended up sleeping on the air mattress in her flat again.

I wrote an appeal to ss going over the same old ground, i.e. she's distressed, I can't cope etc., and got a most patronising letter back informing me it had already been decided it was in her best interests to stay in her own home. To try and cut this short I demanded a new assessment and they finally agreed and I was visited by a new case worker, the first to fully understand our situation was untenable. It was agreed she should be in long term residential care.

Seven weeks after that decision I was still waiting for a bed for her and she had started having falls and I'd have to call paramedics. I finally called the case worker in floods of tears and begged her to find an emergency respite bed as I was in such a state. One was found for her and the next day I was able to take her there. However, I was told that I would have to move her into a different care home 5 days later for a permanent bed. Yet when the respite care home manager came to assess her (at 7p.m.) she said "but I have a permanent bed". Turns out ss respite and permanent bed sourcing are different depts. and don't talk to each other. I'll cut to the end of this story, with the help of both care home managers I was able to get ss to agree to mother staying permanently in the bed she had for respite.

Sadly 12 days after this happened my mother passed away in the evening. This was very sudden and unexpected in spite of her age. The care home staff were wonderful and I was able to stay with her and hold her hand for her last 36 hours. The next morning I informed the case worker and asked her to let other relevant depts. and agencies know. THAT VERY DAY ss finance department generated a letter telling me how much they were charging me for mum's non-respite days at the care home, compete with a breakdown of costs. I received that letter three days after mother died. Yes, I'm still angry 6 weeks later, and I did write and tell them precisely what I thought of their priorities.

Sorry this is so long but it is difficult for me to condense the story. Although it's early days it's hard sometimes to grasp that I'm no longer a carer and I don't have to rush to get things done to get back to mother. I have no other family, my son died almost two years ago, brother and two nephews also gone so I'm particularly grateful for the support I'm getting from friends, church and Berkshire Carers support group.