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I am sole carer for mother age 87, she has lived with me for 22 years, in the annex to my home, she was diagnosed with Alzheimer’s just pre pandemic, then nothing happened till 18 months ago, we lost her long term partner 2 years ago, and it seem to kick off the psychotic episodes she has.
It can be all hunky Doreyfor weeks, then it kicks off, she insists she wants to go to her country home? Then says she been left in a hotel for weeks, she is wandering house in night, she is unsteady on feet and so I am on alert 24/7 every noise wakes me, she does things like pulls plugs out of fridge, washer, I lost £100 of frozen dog food few weeks ago, she turned garage freezer off and I never noticed till I smelt it . My sister helps to an extent, but she is not good herself, and her kids dump G kids on her all time. But last night I had to call her, it was after 9 and mum was ranting about me leaving her in a warehouse, she was in her bedroom, she was screaming, throwing books at me , I was sat at the top of stairs shaking, after a book whacked me in face.
GP put her on respiridone 0. 5 mg twice a day, but it’s been 2 weeks on it now and I can’t see it’s made any difference. Gp refused to give something to make her sleep, so I bought nytol, but they are useless when she is so wound up and ranting. What more can I do. She refused carers, likes being “dirty” refuses showers unless my sister comes, sister was a senior manager in EMI homes for years, she knows her stuff, but mum pushes my buttons and I panic, we arranged a day care once a week to give me respite to do own things, she created so much they said we had to stay with her, well that defeats the idea of me having my own time, so we stopped it. She won’t tolerate carers at all. I won’t put her in a home. I promised I wouldn’t, but it’s dam hard, I gave up a good job in the post office, to stay home with her. We discontinued her phone line after we were told she was calling strangers in night, ranting about crap.

Surely there must be some medication to send her to sleep. I have had a total of 7 hours sleep since Thursday, I am a walking zombie, I am starting to dislike her , I wait on her all day long, 3 meals a day, clean for her, take her on drives in car , but she is never happy, last night she insisted on having her handbag in bed as said I was going to steal her money. That really hurt me, yes I have POA , but I would never abuse my position. In fact, I’ve got 10k debt on credit card, as I have hardly any income as I am not of pension age for 2 years. I live off my late husbands small Occ pension, and carers allowance, (£450 a month)
Yes I have a home, paid for with late husbands insurance, but I am cash poor.
Will someone tell me it will be ok, what can I say to GP, what can I ask for to make her sleep. One day last week I bundled my dogs in car and just disappeared for 4 hours, till I came to realise, this is it, my jail sentence, no parole, no days off no fun, no friends, they all leave me alone as I can never join in.
Sorry for the rant.

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Hi @Christine_2001 I can’t offer very much in terms of advice, other than telling you things you may not want to hear.

If your mum has the capacity to make decisions, refusing carers is fine and her wishes have to be followed. But what you’re describing sounds like something else, and it may be that she is unable to make that decision in terms of the legal definition - to take in the facts, retain them long enough to make a decision, weigh up the facts to reach a decision and to communicate the decision.

This is where it gets tough. You need to ask social services for help, and that will involve a mental capacity test to see if your mum is able to make the decisions asked of her. If she has capacity, she has the right to refuse external care - but you have the right to say “I cannot do this.”

I know - you made a promise. Trouble is, we all make promises and that’s fine if we understand what those promises let us in for, but I can guarantee that what you’re facing is nothing like what you or your mum expected.

And I honestly doubt that, if she understood what is happening now, she would have held you to that promise.

You cannot carry on like this, and you need to accept that you’ve reached the limit. Asking for help is perfectly reasonable: realising that your mum needs more care than one person can possibly give is also perfectly reasonable. What you’re describing would take two fit people at a time - working in shifts with other people - to stay capable of meeting your mum’s needs and able to supervise her at all times throughout a very active and unpredictable 24 hours - that’s a bare minimum of 12 people on six hour shifts. It’s not sustainable.

That means that you’re both at serious risk of harm. Your mum could just as easily start a fire or do something incredibly dangerous to both of you - or even run off in the night, as happens so often.

You’ve done incredibly well to manage for as long as you have, but the time has come to protect the both of you.

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I get where you are coming from.

Your needs are so similar to mine yet in slightly different ways.

I’m 27, my mum is 57.

It’s the emotional impact which hurts the most, having said that it’s dangerous for you if she’s attacking you. It’s not okay regardless of whether she is poorly or not. You shouldn’t have to enable this.

I would encourage you to speak to the local council, and the carers team who would be better able to advise you on next steps.

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@Christine_2001
Hi and welcome to the forum
My lovely late husband suffered strokes vascular dementia and other health issues.
We too promised each other many years ago that we wouldn’t place one in a home. Eventually I had no choice. For his safety and mine. It was very heartbreaking but as it’s been said many times on the forum… NEEDS take over WANTS, this includes promises.
Please seek advice from GP and social services. For both your sakes.

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Hi Christine_2001

Welcome, and so glad you’ve posted here. I’ve been in a very similar situation with my dad. Following a hospital admission with delirium last year he was diagnosed this year with moderate-severe mixed dementia (Alzeimers/Vascular type). I feel like everything was wrong with that hospital stay and discharge, and that there doesn’t seem to be a single day without another hiccup or minor battle with various agencies or support services. The biggest problem for me wasn’t the forgetfulness, it was that he stopped sleeping at night, and was experiencing auditory and visual hallucinations. Some were harmless enough (a group of hyenas running through the living room) but many were very distressing to him with some telling him that I had stolen things, or that he needed to do things like move furniture around. He was shouting a lot of the night and he could get really angry with me and that was totally out of character for my dad. He has a catheter and he kept getting out of bed and disconnecting it, flooding the bed and carpets with urine. His mobility is very poor and he forgets to use his frame and falls a lot. I had to stop working because of his care needs escalating at night, and we’re on an ‘urgent’ list with social services for a care reassessment (they’re “overwhelmed” apparently. Aren’t we all!?) Early on I called the GP several times about sleeping tablets (before we had the formal dementia diagnosis this year) - they tried to help initially with one that usually knocks people out (he did sleep a little but still got out of bed a lot and was more dangerous when he did because of the drugging effect) and then melatonin that the GP said was gentler for older people but had no effect whatsoever. I also spoke to the community nurses and OT who had previously assessed him for a hospital bed but they withdrew that offer because they won’t give people with dementia barriers on their beds as they try to climb over them and get more dangerous). Eventually a GP rang me and told me I had to stop calling them about sleeping tablets as it wasn’t acceptable that I was trying to drug an old person with dementia just so I could get some sleep!! Apparently that was the message the receptionists were passing on and when I had a chance to explain my side she did admit I was only trying to do my best for him as I was actually just trying to give him some calm and remain safe at home.

The turning point for us was was March when we saw a specialist nurse in the memory clinic. She spent and hour and a half listening and going through his history etc. She prescribed him an anti-dementia medication called Memantine. He is so much calmer and less agitated. He still doesn’t sleep particularly well but he stays in bed more and his hallucinations have reduced. They haven’t gone and I still hear some wild stories, and he still has some particularly vicious ones that tell him bad things (he calls them the forces of evil) but he tends to check with me whats real now. The GP now does the repeat prescription at the memory clinic’s request but it isn’t a drug that GPs routinely start. So it might be that you need a referral to your local dementia team / memory service or get back in contact with them if you’ve been there already?

hugs

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Are you mum’s DWP Appointee? Do you manage her money? I think you and mum may be entitled to more money than you are currently receiving. Ring the CUK helpline for a confidential chat. Are you claiming exemption from council tax for mum as she has a severe mental impairment? This CAN be backdated!
Search for NH S Continuing Healthcare, if mum qualifies it would mean free carers. She doesn’t have a choice, you are on the verge of a breakdown. It’s either carers at home or 24/7 care in a nursing home. Does she own or rent the house?

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Yes. She is under the memory clinic and I have POA to do things on her behalf, we got coded locks in the doors, we did that after she tried a jail break… but here in Wales The NHS is in crisis , waiting months for simple 5 min appointment, I am getting back to GP in morning, SS lot here are useless unless you’re addicted to drugs or try to top oneself. I was told by one that as I am providing home and care then there’s others who need the service more, awful I know .

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EXACTLY I could say this is mother to a tee… I just hope memory clinic comes through sooner. Last night was first time she hurt me by throwing a book at my head. My GP also says can’t drug her to afford me some sleep :face_with_spiral_eyes: I said well if I have a breakdown then Social lot will have to find her a home won’t they. They just don’t get I, till they are in same position do they. But they bend over backwards for drug addicts, near me they even built them a brand new drop in clinic centre , sod the elderly in need !!! I was minutes away from 999 cal last night. This morning she can’t remember a thing. I’ve made it all up

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She gets AA and I claim Carers allowance, and UC gets me reduced Council Tax. But UC only give me £40 a month as they deduct CA from it, I will ask my sister to investigate as she was a EMI care home manager for many years

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Totally get it! I’ve had arguments with doctors at the hospital about capacity (“he has capacity to refuse medical procedures” and is “allowed to make what you think are bad decisions”, even while he’s telling us all about the guys whitewashing the ward walls all night). I finally had to walk out and leave him on the ward alone because I knew he was calmer with me there and when I returned the next day they’d moved him into one-to-one care because he kept getting out of bed unsafely. It was like they didn’t believe me until they saw it for themselves. And that’s the way at home too sadly. Our neighbours called the police one night when his shouting got so bad. The police came and said they’d report it to social services to see if it would help speed up their response. Recently I had to call a paramedic to help me get dad up off the floor in the night and he said the same. But none of it actually gets social services out to assess him. While they’re deemed to have a home and carer looking after them I’m sure they get de-prioritised even on urgent lists! Personally I think they’re hoping he’ll die in the meantime and won’t be their problem (he’s 94). I know they’re stretched ridiculously (we’re England) but we’re the ones dealing with our caree day-to-day, often doing things singly that professionals only do in pairs, and are exhausted with it. If you need 999, call them. Others need to see this behaviour too and act in her best interests. I don’t know if you have one locally but we have a dementia hub run by the charity Mind that is paid for by the NHS across the county. They accept self-referrals as well as from professionals. Might be worth contacting them for support too if you have something like that?

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If mum has over £23,000 in savings, it’s OK for you to be paid from mum’s account for the work you do. Have a look at the Information Commissioners website.

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Last night she was screaming and crying for her partner Leo, said he gone to Manchester and left her in this jail with me , she went to bed at 9, all happy. Then the tantrums started , in end I sat at top of stairs till 12:30 at night, putting her back in bed 5 times till she was so exhausted she had to sleep. Then I slept on sofa close to stairs , so I would hear her. As she is in the annex of my house, so if I go to my bedroom , I don’t hear her . My back is killing me now. She woke at 9 am I fed and dressed her, and we are sitting g watching tv and she don’t remember a thing. I’ve phone Gp again. I need better sleeping meds, I can’t keep doing this night after night. I am a walking zombie, I burnt my arm on oven last night as was careless taking her dinner out, and burnt arm on hot side of oven.

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Sadly, mum now needs more care than you can provide. Next time, be sure to record her on your phone, to show the doctors. Things are likely to get worse, not better. You have to focus on what mum NEEDS not what you want.

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Have a look at getting a baby alarm. I realise she’ll still get you up lots (like mine does) but at least you can sleep in your own bed in between times and must be better for your back than the sofa. While social care services haven’t responded well here, our local equipment service has been fantastic. Go to your county council website and contact them - ours offered all sorts of different things that we needed and brought them out to us and fitted them almost immediately, e.g. a sensor mat by the bed that alerts you if she gets out of bed etc. All might help in the meantime while other options for care are looked at.

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Well, the Respiridon anti psychotic meds appears to be working, I have been putting mum to bed about 8:30 ish and she been sleeping through till 8:30 in morning. I am managing an hour to myself walking the dogs if I go out at 6 am, as she doesn’t get up till 8 at earliest. I have to speak to GP next week, to see if she can stay on it… it has been so much more relaxed since weekend.

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