• We're currently experiencing technical issues with our newsletter software, so our Dementia Talking Point monthly updates have been put on hold for now. We hope to restart the newsletter soon.

    Find out more >here<.

New here, unsure about next steps for mum.....

odean6578

New member
May 1, 2020
6
Good morning all. I hope you are coping in this never ending lock-down! I'll start by saying a big well done to carers who are managing to fulfil care duties during this pandemic.

I am 29 and currently caring for my mum. My mum is 62 and was diagnosed with Alzheimer's in September 2019. Although she was displaying symptoms since around 2014 when my dad (her husband) tragically passed away. I am an only child, so it is just me responsible for all her care needs and financial matters. I have done all the right things (I hope), such as: becoming her LPA for health and welfare and property/ financial affairs. I am now legally allowed to act on her behalf when dealing with DWP. She moved in October to rented accommodation in Bury (Greater Manchester) as she was not coping in her own house anymore. I arranged with a private care company a carer once a day and to see how things progress. Since moving to this rented 'sheltered' (not assisted living, all she has is someone who carries out maintenance+ utilities) accommodation (far away from her old house and brother) , I have noticed a massive decline in her mental health.

Four weeks ago, I was informed by her landlord that my mum had wandered into the car park of the building and was delirious, delusional and hallucinating. I drove up north (London to Manchester/Bury) as soon as he told me and began caring for my mum full time in her home. As it is lock-down I have been asked to work from home, I am a primary school teacher. On consulting the doctor about her sudden delirium we agreed that she probably had a UTI so we were prescribed antibiotics. She finished the course and symptoms still persisted so we were given another set of different antibiotics, she finished the course. However, she was still delusional and hallucinating all day and all night. I couldn't get a urine sample because of her eyesight so she gave a blood sample, which came back all clear. This week the hallucinations have become very distressing for her. She spends all day having conversations with people who aren't there, sometimes she argues with them. She follows their instructions. They ask her to have showers at 3 am, they ask her to get out wine glasses and make them a drink. This often results in smashed glass on the kitchen floor due to her poor eyesight (an apparent symptom of the Alzheimers, no/depleted vision in her left eye). Around 3.30pm daily the hallucinations get more intense and she often tries to leave the house, telling me that she is going for a walk with her best friend (totally imaginary). Other times she tells me that she has to run away as the house is built on an Indian burial ground and the ghosts of the past are haunting her. These things/people she is seeing try to stick corks up her anus and urinate on her apparently! When she gets restless and agitated I usually take her for a walk until she calms down. (sometimes difficult in lock down as she wants to walk for hours).

In the past couple of days the hallucinations have not improved, in fact they've got worse. She is in state of distress from the moment she wakes up, to the moment she tries to go to bed. Often, running around the house shouting and screaming that people are stealing her clothes and hiding her things. She has carers once a day (even with me looking after her 24 hours) as I need to do some work and teach my children via the internet. Sometimes she responds well to them, but often she wants me to be with her as well. She thinks the carers are drugging her and stealing her makeup. The carers are doing a great job, they are so patient with her and often get her smiling and laughing. The carers seem concerned that it is just me caring for my mum and her needs are becoming more and more complex.

My mum was prescribed Donezpil which she was taking at night, but we changed it to the morning due to nightmares. Sometimes she takes it, sometimes she doesn't. I don't think I should force her to take it. The doctor has lowered the dose. For the hallucinations she has just started taking risperdone. She is also taking Citalopram for her anxiety and depression (diagnosed when husband died). So as you can imagine, when it's time to take her medication in the morning it is an ordeal. I have had to become increasingly forceful and heavy handed because she does not want to take 3 tablets. She believes she is fine and that the house is haunted, she doesn't have Alzheimer's in her opinion.

My mum is incredibly controlling and before we had an Alzheimer's diagnosis her treatment of me was verging on psychological abuse. 20 phone calls a day, while I was working. Lots of tears and tantrums when I was visiting her. Lots of emotional bribery, things like, "I looked after you when you were a baby, so now you have a responsibility to look after me. I don't need carers or a care home I need you because you are my son." Obviously she says this less now as she lives entirely in her head. Often sitting with her eyes closed or talking to hallucinations. She only engages with me properly when I am making food for her and making her eat (she cannot prepare and food of hot or cold drinks), helping her get dressed or putting her in bed.

Next steps. I have asked social services numerous times for a care needs assessment. Each time they ask if it is an emergency, to which I reply, yes. They ask if she currently has carers, to which I reply, yes. They ask if we are self funding. When I tell them that we are, they pretty much hang up. They tell me that because we are self funding I should arrange some extra care visits for when I am back in London. I asked for their advice on nursing homes in the area- they said because I am a self funder I should approach nursing homes myself. I am finding that nursing homes/care homes are not responding to me during the pandemic, for obvious reasons. My patience is eroding quickly and I am certain that my mum needs a team of people around her due to her complex needs. I feel that I have done all I can, I want my mum to be somewhere where there are professionals, before I am pushed to my limit.

Is it the case that I need to wait for my mum to wander off or have a fall before social services intervene? Is there another line of reasoning that I should employ when I call them?

Thanks for your time.
 

karaokePete

Registered User
Jul 23, 2017
5,634
N Ireland
Hello and welcome @odean6578.

That must be very stressful for you and, as you are getting stuck in the system, I wonder if it's worth talking to the experts on the helpline. Just click the following link to see the details
 

lemonbalm

Registered User
May 21, 2018
575
Hello @odean6578 . This sounds terrible for both you and your mum. Firstly, well done on looking after your mum in such difficult circumstances. There will be lots of advice and support for you on here and other members will have suggestions regarding Social Services. I looked after my mum for two years until it became impossible for many reasons, mainly because I could not keep her safe and she was often very aggressive and agitated. I moved mum into a care home from hospital after falls, a broken hip and a stroke but had no support from the hospital or Social Services, as mum was self funding and nobody seemed at all interested! I searched on carehome.co.uk and went to look at all possible care homes in the area. This is not easy (particularly at the moment with the lock down) and, if you go down this route, you will probably see some which you would not want your mum to be in. The first step, I would say, is identify some which look as though they would be ok, read all the reviews, and visit them when you are able to. The smartest homes are not necessarily the best ones! If/when you start looking, keep posting for advice and support.
 
Last edited:

Sarasa

Registered User
Apr 13, 2018
1,699
Hi @odean6578 , that must be so hard for you specially as your mother is comparatively young and I assume apart for the dementia fairly healthy. It might be worth going back to the GP and explaining that the symptoms are not letting up. Getting worse in the afternoon is fairly typical and is called sundowning.
It sounds as though your mother won't be able to cope on her own once schools re-open and you have to go back, and it may well be that she is asked to leave her sheltered accommodation anyway as such places are not really geared up to residents with your mum's sort of needs.
This list of Care Homes is useful for getting an overview of what is available where your mum lives and where you live. London prices will likely be more expensive, but you might want to consider your mum moving near to you.
 

Lynmax

Registered User
Nov 1, 2016
554
Many care homes are now accepting new residents, I found one for my mum just last week. I was not able to have a look around but luckily I had been recommended one by a couple of friends. All I could do was look on the Internet and talk to staff there - the home manager and a senior director of the group, a not for profit one.

It only took two days to sort out admission. Mum was actually in hospital and they had identified a different care home which was miles away so it would only have been temporary.

I don't know how funding the place would have worked as a self funder, mum will eventually be paying for herself but at the moment, her fees are paid from a Gvt fund set up a few weeks ago to free up,hospital beds but I'm sure the care home would still have accepted mum.

The policy seems to be that new residents must have a negative Covid 19 result and then go into 14 days isolation on arrival. That's tough for pwd and the home have commented on mums good mobility so I think she might have escaped a few times!
 

Rosettastone57

Registered User
Oct 27, 2016
1,350
Good morning all. I hope you are coping in this never ending lock-down! I'll start by saying a big well done to carers who are managing to fulfil care duties during this pandemic.

I am 29 and currently caring for my mum. My mum is 62 and was diagnosed with Alzheimer's in September 2019. Although she was displaying symptoms since around 2014 when my dad (her husband) tragically passed away. I am an only child, so it is just me responsible for all her care needs and financial matters. I have done all the right things (I hope), such as: becoming her LPA for health and welfare and property/ financial affairs. I am now legally allowed to act on her behalf when dealing with DWP. She moved in October to rented accommodation in Bury (Greater Manchester) as she was not coping in her own house anymore. I arranged with a private care company a carer once a day and to see how things progress. Since moving to this rented 'sheltered' (not assisted living, all she has is someone who carries out maintenance+ utilities) accommodation (far away from her old house and brother) , I have noticed a massive decline in her mental health.

Four weeks ago, I was informed by her landlord that my mum had wandered into the car park of the building and was delirious, delusional and hallucinating. I drove up north (London to Manchester/Bury) as soon as he told me and began caring for my mum full time in her home. As it is lock-down I have been asked to work from home, I am a primary school teacher. On consulting the doctor about her sudden delirium we agreed that she probably had a UTI so we were prescribed antibiotics. She finished the course and symptoms still persisted so we were given another set of different antibiotics, she finished the course. However, she was still delusional and hallucinating all day and all night. I couldn't get a urine sample because of her eyesight so she gave a blood sample, which came back all clear. This week the hallucinations have become very distressing for her. She spends all day having conversations with people who aren't there, sometimes she argues with them. She follows their instructions. They ask her to have showers at 3 am, they ask her to get out wine glasses and make them a drink. This often results in smashed glass on the kitchen floor due to her poor eyesight (an apparent symptom of the Alzheimers, no/depleted vision in her left eye). Around 3.30pm daily the hallucinations get more intense and she often tries to leave the house, telling me that she is going for a walk with her best friend (totally imaginary). Other times she tells me that she has to run away as the house is built on an Indian burial ground and the ghosts of the past are haunting her. These things/people she is seeing try to stick corks up her anus and urinate on her apparently! When she gets restless and agitated I usually take her for a walk until she calms down. (sometimes difficult in lock down as she wants to walk for hours).

In the past couple of days the hallucinations have not improved, in fact they've got worse. She is in state of distress from the moment she wakes up, to the moment she tries to go to bed. Often, running around the house shouting and screaming that people are stealing her clothes and hiding her things. She has carers once a day (even with me looking after her 24 hours) as I need to do some work and teach my children via the internet. Sometimes she responds well to them, but often she wants me to be with her as well. She thinks the carers are drugging her and stealing her makeup. The carers are doing a great job, they are so patient with her and often get her smiling and laughing. The carers seem concerned that it is just me caring for my mum and her needs are becoming more and more complex.

My mum was prescribed Donezpil which she was taking at night, but we changed it to the morning due to nightmares. Sometimes she takes it, sometimes she doesn't. I don't think I should force her to take it. The doctor has lowered the dose. For the hallucinations she has just started taking risperdone. She is also taking Citalopram for her anxiety and depression (diagnosed when husband died). So as you can imagine, when it's time to take her medication in the morning it is an ordeal. I have had to become increasingly forceful and heavy handed because she does not want to take 3 tablets. She believes she is fine and that the house is haunted, she doesn't have Alzheimer's in her opinion.

My mum is incredibly controlling and before we had an Alzheimer's diagnosis her treatment of me was verging on psychological abuse. 20 phone calls a day, while I was working. Lots of tears and tantrums when I was visiting her. Lots of emotional bribery, things like, "I looked after you when you were a baby, so now you have a responsibility to look after me. I don't need carers or a care home I need you because you are my son." Obviously she says this less now as she lives entirely in her head. Often sitting with her eyes closed or talking to hallucinations. She only engages with me properly when I am making food for her and making her eat (she cannot prepare and food of hot or cold drinks), helping her get dressed or putting her in bed.

Next steps. I have asked social services numerous times for a care needs assessment. Each time they ask if it is an emergency, to which I reply, yes. They ask if she currently has carers, to which I reply, yes. They ask if we are self funding. When I tell them that we are, they pretty much hang up. They tell me that because we are self funding I should arrange some extra care visits for when I am back in London. I asked for their advice on nursing homes in the area- they said because I am a self funder I should approach nursing homes myself. I am finding that nursing homes/care homes are not responding to me during the pandemic, for obvious reasons. My patience is eroding quickly and I am certain that my mum needs a team of people around her due to her complex needs. I feel that I have done all I can, I want my mum to be somewhere where there are professionals, before I am pushed to my limit.

Is it the case that I need to wait for my mum to wander off or have a fall before social services intervene? Is there another line of reasoning that I should employ when I call them?

Thanks for your time.
As a self funder, unfortunately, in my experience, social services will not be interested. All the time you are there filling in the gaps, social services will not think it's an emergency. My mother in law was self funding, lived in her own home with carers three times a day and I never involved social services in her care or in any decisions both my husband and I made as attorneys. We organised all her needs firstly via a private agency , then eventually as she was no longer safe in her home after a hospital admission , we found a care home. I think you are right, your mum needs full time professional care and the only way is to contact homes yourself . We did this via the CQC website, only viewing those with a good rating. Obviously, in these unprecedented times, this is more difficult . I'm sure others will be along with better advice.
 

Sirena

Registered User
Feb 27, 2018
2,287
I agree with @Rosettastone57 - please do not wait for Social services to do something, they won't. As she is self funding it really is completely up to you. Even if she has a fall or wanders off, SS will still not intervene.

In one way that is very good news because it gives you choice. You do not have to engage with SS and take whatever they provide. You can choose a dementia care home (not a nursing home) and move her there. Obviously lock down is inhibiting that process at the moment, but SS will not be interested lockdown or no.

Like you I am an only child, and not close to my mother, and I had to arrange care for her when she became ill with dementia. Firstly that was arranging care at home, and then moving her to a care home. I did this with zero input from SS.

Your mother has quite severe symptoms, hopefully the new medication will help with this, if not you will need more input from mental health services until you find the right medication for her. In terms of getting her to take the medication, I know this can be a real trial. Check with the GP if it is okay to crush the medication and disguise it in a soft food that she likes (e.g. yoghurt) so you can avoid the battle of the meds.

I found my mother's care home on here, if that helps.

 

Fiona F

Registered User
Apr 12, 2020
37
56
Southampton
Hello @odean6578,

Sorry you're having such an awful time - I completely sympathise. I'm also an only child & it's so hard.
My mum is 90, with Alzheimer's. She's very wobbly & unsteady & like your mum has hallucinations etc which over time have got worse & worse, & has lost all logic & understanding. She has private carers twice a day as she is not eligible for free care.

If my mum gets to the stage when she needs 24 hour care, I think we'll do the same as we did for my mother-in-law, which was to have a live-in carer. It's worth you considering this option for your mum - not only can she stay in her own home but it's about half the price of a care home. The agency we used (last year) cost about £80 a day for the carer + weekly agency fee of approx. £80. You'd have to do some investigating in her area, but it's worth considering. Many care agencies offer live-in care - you can get a booklet with all the agencies in the area & what they offer.

Going back to my mum - I recently joined the forum & it's so helpful & makes me feel I'm not alone in this. As an only child I never wished for siblings, but now wish I did as it's such a big responsibility & very stressful. My mum has no brothers or sisters, & my dad died 20yrs ago, & we have no children. My husband & I have LPA, & thank goodness she moved 4 years ago into a bungalow just behind our house. At the time she moved we didn't realise she had dementia, but looking back I can see she did have signs for several years. The move was obviously a big trigger for her decline. Now I realise that change of any sort is not good!

After I expressed concerns to her GP & she was referred to the Older Persons' Mental Health Team. A brain scan, tests & assessments confirmed Alzheimer's - although she is blissfully unaware. Since she had a fall 18 months ago & was in hospital for 5 weeks, she's had carers twice a day. She's very doddery & can't successfully wash & dress, cook or make drinks for herself, has increasing problems with the toilet - it's now becoming a bit of an obsession & she keeps asking me to go over with her what she has to do when she goes to the loo. She's had a few accidents & already wears Tena 'pull-ups' - just in case, but incontinence is on the cards I can see (GROAN!). The other day she'd had an accident & I found a pair of Tena pants soaking in the sink!!!! Ugh! all the liquid-absorbing gel had puffed up to huge proportions & I had to scoop it all out into the bin - quite revolting. At least she hadn't put them down the loo! I know I will NOT be able to cope with bottom-wiping & clearing up nasty brown mess! I have to turn away if I ever see her half naked! I definitely could not wipe my own mother's bum!
Maybe if I'd had children I might be able to cope - having had to change nappies etc, but that's something I've never had to do.

My mum's had hallucinations pretty much since she moved - starting with a lady always in bed next to her, pushing her to the edge of the bed, trying on & moving clothes/things. Then it was the 'lady's daughter', & sometimes a man standing there - but always only in her bedroom at night & they just ignore her if she speaks to them. Over time, apart from all the other usual dementia symptoms, the hallucinations have got worse. The last few weeks she's been talking/interacting with the TV, seeing people sitting in the lounge & they keep talking to her & she complains she can't get anything done or leave the room to go to the loo, or even get to bed, because they keep talking & asking questions & have now started making sarcastic comments to her (but she's too polite to leave the room whilst they're talking!!). I've resorted switching the TV off at the plug socket, unless I'm there, & just have radio or CD. When I phone or pop round she always says 'everybody's here' - (nobody there of course). She rang me at 7.15am the other morning asking what she should give these people for breakfast! Turning the TV off has made no difference, she still sees the people, & gets angry because they won't stop talking. No amount of reassurance that they're not really there helps. I find it infuriating but have come to realise there's nothing I can do, she can't help it.

She has a little machine which beeps & dispenses her tablets at set times - she thinks it's a living creature & calls it 'Mr. Ding' & sits it on her lap, talks to it, panics because he's too hot / too cold / the light's too bright / the sun's too hot on him, his eyes fell out .......whatever. Not only does she spend hours at night before she goes to bed waiting for 'the people' to go, she faffs about 'putting Mr. Ding to bed! Last night she said she was up until 1.00am trying to get him to bed! She has an elaborate routine of covering the digital clock & other things up with an assortment of tea towels, dusters, cushions etc. A long time ago I made him a 'bed' with a shoebox & a fluffy scarf & said just leave him there on the sofa in his bed, & if you insist on covering him up, it takes a only second to lay a tea towel over him! All I get is excuse after excuse as to why this, why that, she couldn't because of blah blah blah - all a lot of nonsense of course. Drives me mad! She's like a small child now & I find it very hard to accept.

I try to be patient with her going on & on & on about 'the people' & Mr. Ding, & things & clothes being moved, losing things, spending all day 'searching & searching' for items, worrying about using the loo, not accepting the bathroom is her own & the towels, flannels, toothbrush etc are all hers, nobody else's, that it's not a public toilet, & so many more things, but day after day after day it gets very frustrating & I get exasperated!

Good luck with your mum & hope you get something sorted out soon, but do look into the live-in carer option.
 

Sirena

Registered User
Feb 27, 2018
2,287
Re live-in care at home. My mother had private carers for 5-6 hours a day and when she got to the point of needing constant supervision I considered live-in care. In her case it would have worked out more expensive once I added the cost of her rent, heating, food etc. Her care home room costs £830 a week. She is still quite sociable and loves her care home, but of course each person is different.
 

Weasell

Registered User
Oct 21, 2019
551
This is an interesting post.
Are you thinking of a home in Manchester? When my mum goes into a home I will make sure it is near me in London, as I am sure it will make my life easier if she is nearer , even if it will hike the bill a great deal higher!
I thought it was an entitlement to have a needs assessment, even for self funders, is that wrong?
Have you considered the money could easily run out, do you need specialist advice on that?
Are you claiming Attendance Allowance?
If your mother was sectioned would that help things? I would be an opportunity for a team of professionals to see if she could be helped ? I always think it sounds dreadful but in many cases can be a blessing. I don’t know enough about the criteria for sectioning?
Can you utilise the landlord to help your case?
 
Last edited:

odean6578

New member
May 1, 2020
6
@Weasell yes I'm considering somewhere in Manchester. As she will probably be the youngest person in the home by far (62) I think it would benefit her if she was close to friends and family. I spoke to her gp about sectioning and he thought it was unnecessary as she is considered 'safe' with me. Unfortunately the application for attendance allowance is stuck in the system. They cannot assess her during lock down even though we have been waiting since December. @Fiona F I have looked into live in care and it is too expensive. It would be fine if my mum owned her own house but unfortunately she is renting and the rent is extortionate considering it is Greater Manchester. Fiona I'm glad you've managed to get something sorted for you mum and thank you for sharing your experiences. Thank you @Sarasa , @Lynmax , @lemonbalm, @Rosettastone57 , @Sirena , @karaokePete for reading my post and offering some great advice. The information you provided regarding social services has made things clearer for me. You're all super-stars in my eyes. Stay safe. Oli
 

Lynmax

Registered User
Nov 1, 2016
554
The social worker from Manchester SS was brilliant with helping me, although she was only allocated while mum was in hospital. I contacted them directly three times to try to get an assessment but no one responded. I think the MRI care team were very proactive in making the referral.

I had several phone conversations with the social worker while she tried to get information about mums care needs - not able to actually meet mum. If I left a message or sent her a text she responded very quickly, I was impressed! It's likely that we will meet her eventually as she will be doing the assessment once care homes allow visits again, which is when mum will start paying for her own care.

Mum lived in Chorlton but she is now in a care home in Stockport as that is closer to where me and my sister live. In reality, mum has no idea where she is and only has one friend left who goes to see her - we will now take mums friend to the home for visits as she does not drive.

I wish you luck in finding a suitable home, I did look at a few in South Manchester but did not know any one who could recommend one.
 

Sirena

Registered User
Feb 27, 2018
2,287
Yes you are entitled to a needs assessment as a self funder - in fact SS should not even ask about finances until they have done the assessment. (I moved my mother from London to near where I live - fortunately that made the CH fees lower!)

My mother had two SS assessments. But they were pointless because at the end of them the question is 'is she self funding?' and when you say yes, they drop you like a stone. So it is just a timewasting exercise. Occasionally you do get a very helpful SW who will wade in for you anyway, but it's unusual.

Oli you mention they cannot assess her for Attendance Allowance. I don't understand this, it's just a paperwork exercise and if you applied in December you should have had an answer long before lockdown. You fill out the forms on your mother's behalf, send them in, and a few weeks later they say yes (or no) and send the money to your mother's account. It sounds as if something unrelated to lockdown has gone wrong.
 

odean6578

New member
May 1, 2020
6
Hi @Sirena thanks again for responding. The needs assessment looks like it's never going to happen before mum moves to a dementia specific residential home. They keep telling me this is not an emergency. (and the usual- self funding fob off.) The social worker who I've been speaking to on the phone seems nice enough, but she always blames her manager. "My manager says it's not an emergency. "

Attendance Allowance doesn't actually exist any more. if you have claimed it in the past, you still are entitled to it. But nowadays it's called PIP. This the second time we have applied, now we have a diagnosis maybe she will get it. I phoned them at the start of lockdown, they said they are still waiting for an assessor to become available for a telephone assessment. Ridiculous.
 

canary

Registered User
Feb 25, 2014
13,418
South coast
Attendance Allowance doesn't actually exist any more. if you have claimed it in the past, you still are entitled to it. But nowadays it's called PIP.
Is she under retirement age? Attendance Allowance still exists, but it has always been only for people over state pension age. If you are under state pension age it is PIP (used to be DLA).
 

odean6578

New member
May 1, 2020
6
@canary yes she is under retirement age. PIP is becoming a bit of a saga if I'm honest. Even though we have a diagnosis and I sent a copy of the letter which stated the diagnosis. I'm going to try and get the PIP back dated.
 

canary

Registered User
Feb 25, 2014
13,418
South coast
PIP is a pain, and much harder to get than Attendance Allowance. OH is still on DLA, although we keep getting letters saying that he will be transferred to PIP. As he is now 65, Im less worried as, if this happens, I think I will wait until he is 66 (retirement age) and apply for AA.
 

Sirena

Registered User
Feb 27, 2018
2,287
Thanks for replying - of course, that makes sense, she's under retirement age so she will get PIP rather than AA. As Canary says, you only get AA if you're over retirement age.
 

Spamar

Registered User
Oct 5, 2013
7,475
Suffolk
I’m well over retirement age and I get PIP, though I don’t have dementia, so it’s not a cut and dried thing. I think I was 65 when I was moved from AA.
 

Staff online

Forum statistics

Threads
116,085
Messages
1,697,719
Members
66,906
Latest member
Amester