Desperate and no one seems to be listening

All about caring
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Hello, sorry to bother everyone but I’m currently facing a dilemma in which I could desperately use some advice.

My mother and I have been a carer for my grandmother since 2013. She has various mobility problems but we’ve always muddled through. At the beginning of this year something we had suspected for a while was confirmed when she was diagnosed with vascular dementia. Like always we’ve muddled through but this month there has been a severe deterioration.

For the past few weeks she’s become increasingly agitated and it’s like she’s sundowning all through but worse all through the night too. She will continually shout out for help for some imagined problem. We spoke to her GP and he prescribed her Lorazepam which we gave her at night before she was tucked in for bed. It worked great for the first two nights as it knocked her out but on day 3 it just stopped working and she remains awake and anxious all through the night.

For 24 hours a day she is constantly shouting for help and when I say it I really mean constant Nothing we can say settles her down and when she’s not shouting us we can hear her whimpering in the quiet. Save for the odd hour she has been awake for days and so have we. We are extremely tired and irritable. We called her GP again to ask if he could give her a larger dose or something else to help her sleep at night. It took days for him to get back to us via a receptionist and all we got was “she’s on the right medication”…

Last night I was finally at the end of my rope. I was so in despair I did the one thing I thought I would never do; phone social services and told them maybe it was time she was put into a nursing home. The lady I spoke to could tell how much distress I was in and said she could arrange quickly a 12 day respite and see how it goes from there and their doctors could try and prescribe something to settle her down. As much as I hate it I thought maybe this was for the best and decided to talk to Nan about it. She was adamant that she did not want to go “I’m fine and I’m staying right here”. Sadly she didn’t know how right she was.

Earlier today I got a call from the social worker and it’s one I’ve dealt with before. It’s someone I almost put in a complaint about because of how they spoke to me and her general attitude but at the time I let it go. In December of last year she spoke to Nan in hospital and convinced her she needed carers. I was assured that given her lack of savings she would not pay full for carers but when the bill came in it was full price. This was bothersome as I felt we were going to get into debt when I could do everything the carers were doing (washing, changing her clothes and pad). After two months of constant phone calls to cancel them she kept telling me “not being able to afford it is not a reason to cancel care” when I told her I found the carers more of a hindrance than help she said “we’re not here to do deal with your needs it’s your grandmother that we deal with”. Eventually after impressing on her nan didn’t want carers either she came out to speak to her to make sure I wasn’t coercing her into getting rid of the carers. After interviewing her alone she felt satisfied that she was more comfortable with me looking after her but the whole thing was an ordeal.

Now I have to deal with the same woman again and already the same attitude. “She’s not going into respite until I see her and say so and I don’t make house visits on Wednesdays”. When I say what she’s like she simply said “just sleep when she sleeps” when I told her she barely sleeps and what can I do about her shouting out in the night she sarcastically said “get ear plugs”. I almost lost it but kept my cool but how is ignoring her when she’s in distress giving her good quality of care? She’s coming to see us tomorrow but I’m not confident she’ll agree to put her in respite since she doesn’t want to go.

It’s not my Nan’s fault, it’s this awful disease making this way but what everyone is allowing her to put me and mum through is mental torture and it certainly isn’t doing her Nan any good either. Her mood today is very low but despite being tired her body just refuses to go to sleep and is still constantly calling out for imagined problems. We may have several more days of this and I’m not sure we can take it. just don’t see a way out.

Is there any advice you can give me? Suggestions of anywhere to turn?

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Hi @powerzeo, take some deep breaths and count to 20 and then breath. Sorry to hear that you are having trouble. I would suggest the carers helpline for further information and advice but also. Dementia UK https://www.dementiauk.org
And https://www.alzheimers.org.uk

Do your best with social services but the social worker should not be stopping your nan from having a break and yourself as it not fair when you’re are kept awake and have little sleep. It is not great way to live, I been there with little sleep.
Don’t take any bull crap from the social worker and tell her in a polite way to do one if she gets out of hand.
Speak to the people who I suggested as they do give good advice and support.
Also go back to the GP and lay it on thick even if you tell a few white lies for example if you drive that you have been advised not to drive by the police. It will make the GP rethink, keep a diary of it all and if needs be get the doctor to do a house visit. If things are still not right after that ring the 111 and ask for advice as you don’t know what else to do. Maybe speak to safeguarding team and see if they can help.
All the best

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Next time dial 999. She needs more care than you can provide, 24/7 specialist care. I have heard someone with dementia shouting comtinually, you should not be abandoned and left to deal with it.
You have an absolute RIGHT under the legislation not to care. Remind everyone of this. Have you been told about NHS Continuing Healthcare?

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Hi Powerzeo

Welcome to the forum and so glad you posted here. To avoid repeating myself over and over, I just wanted to highlight this thread where a couple of us have shared similar stories this week

Whilst I can’t offer much advice on dealing with a social worker (we’re still waiting on an assessment from social services - put on an urgent list in January!) I did just want to say that we understand and share your pain. Feel free to ask anything, you’re not alone.

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Ring the social worker and ask to speak to her manager. Don’t take no for an answer. Explain that the social worker’s attitude is unprofessional - give examples - and ask for another social worker to be allocated. They may refuse, because there are huge problems in social care and far fewer social workers than there used to be, but there is no excuse for bad manners and attitude.

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