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

canary

Registered User
Feb 25, 2014
13,420
South coast
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.
I should imagine that it was DLA that you were moved from as that is being phased out in favour of PIP. If you are already on DLA/PIP when you hit retirement age, then you just continue on it, it depends on your age when you apply as to what you go for.
 

Spamar

Registered User
Oct 5, 2013
7,475
Suffolk
I’m one of the lucky ones, retirement age was 60, though I did do a modicum of work for the next two or three years, by then OH couldn't cope and neither could I, so I had to give up. I think I was transferred to PIP about 5 years ago.
 

Sam b

New member
Apr 30, 2020
9
I’m so sorry you’re going through such a difficult time. I’m in a similar situation with my mum. It just seems like an uphill struggle to get any support. I’ve been battling with social services to get a care needs assessment for my mum. Just keep on at SS to get it sorted. Like you, my mum would be a self funder. We can’t give up on what is a legal right - to have our loved ones needs accessed by people who know about dementia. I know I’m no expert on caring for someone with dementia and just acting on instinct on how to cope.
Good luck and I hope things work out for you.
 

odean6578

New member
May 1, 2020
6
Hi @Sam b thanks for your reply. I was notified that you had replied so only picked it up when I've logged in today. I'm sorry to hear that you are experiencing the same things with your mum. It just feels never ending at the moment. It seems as if lock-down is being relaxed everywhere BUT dementia care homes. I am also acting on instinct. All the GP says is "up her dosage". This never works and I have to force feed her tablets she doesn't want to take. I'm having to hide tablets in her food. I'm just playing it by ear, it feels dangerous. I'm getting the feeling that only a disaster will make Social Services take me seriously. I bet if my mum wasn't a self funder they would be round in a heartbeat. Anyway- good luck to you too.
 

kindred

Registered User
Apr 8, 2018
2,493
Hi @Sam b thanks for your reply. I was notified that you had replied so only picked it up when I've logged in today. I'm sorry to hear that you are experiencing the same things with your mum. It just feels never ending at the moment. It seems as if lock-down is being relaxed everywhere BUT dementia care homes. I am also acting on instinct. All the GP says is "up her dosage". This never works and I have to force feed her tablets she doesn't want to take. I'm having to hide tablets in her food. I'm just playing it by ear, it feels dangerous. I'm getting the feeling that only a disaster will make Social Services take me seriously. I bet if my mum wasn't a self funder they would be round in a heartbeat. Anyway- good luck to you too.
I think you may find that it is possible to get a place in a nursing or care home now. You say only a disaster will make the SS take you seriously. Yes, my GP said that we were into train crash support and a disaster was what happened to us and then the hospital social worker helped me find a lovely, homely nursing home for my husband.
Consider employing a private social worker, they are not that expensive. Look up independent or private social workers for your area.
Warmest, Kindred
 
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Ruth1974

Registered User
Dec 26, 2018
108
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.
Im in scotland so its different but surely if there is a medical need for her to be in a home at least part of the fee is covered by health?
Talk to the medical practitioners, if she poses a risk could she be detained? It doesn't sound like a 'normal' care home would cope with her.
An important thing though, you have to look after yourself. You can't make her take her pills, be safe, appreciate you....you can take reasonable steps to check she is ok and flag up concerns. It sounds harsh but if the police start picking her up, social work will start to show an interest.

What i would strongly suggest is a clear letter to social work specifying concerns and risk factors and asking for an assessment. Copy it to her GP. Give them a papertrail that they can't back out of. Put everything in writing, get names of people you speak to on the phone.
 

Ray52

New member
May 24, 2020
1
@odean6578

I think I can help with a bit of support and advise. My Mum is also suffering from early on-set alzheimer's and my Dad died in 2017, so I have somewhat the same responsibilities as you and I'm also young (31 years old and was 29 when Dad died.) I had to go through the same process as you - getting mum a diagnosis, sorting out and deciding on suitable care, trying to get help from social services despite mum being a self-funder and applying for PIP, plus trying to find out what other help is available, as well as trying to keep my own life running.

When your mum got diagnosed, did she get referred to an early-onset dementia clinic to be diagnosed? And has your mum got a CPN who follows her case? This CPN should come out every 6 months to review your mum. I would contact the CPN or the early onset dementia team that looks after your mum's area, to advise you on how to best deal with the situation with your mum. The early onset dementia team from my mum's area also applied for PIP on my mum's behalf and sent in a supporting letter so that she wouldn't have to be assessed at home. If someone is as poorly as your mum with Alzheimer's and the process of assessment will distress them, they don't have to assess in person or over the phone, they just need a letter from CPN. The process may be a bit delayed conpared to having a physical assessment but during coronavirus times, that may not be the case. And the funds will get reimbursement to the date you first sent the application. As you've already got the application in process, talk to the dementia team about it. For my Mum they called the DWP to check progress and they are also used to dealing with this extremely long winded and irritating process.

Once you get the letter confirming entitlement for PIP and stating when it gets paid from (which will be when you first sent the application) you can then apply to the Council to get a tax rebate on council tax, back dated as well, as your mum is technically living alone.

Keep badgering social services. It could be that you have a care agency already in place that SS won't come out but you can get an agency to do an assessment of your mum's care needs as well, to find out what they would be if you weren't there. At the same time keep trying to get in touch with carehomes. Have you tried contacting care managers of the homes directly ? Maybe you can get their direct emails or mobile numbers by looking up their names online. Maybe even LinkedIn could help?

There is also something massive, which you need to do. Prioritise yourself in this situation. It's really difficult when it's a loved one - you can easily end up prioritising their life over yours but you can't do that. Be really careful with your own mental health. Get carers in, not just so you can work, but so you can have a break and look after yourself. Take a walk in the fresh air, without your mum, talk to friends and family, watch some crapy series, whatever helps.

Once you get through this difficult period, and you will, I recommend going to your own GP and asking for a referral to psychologist. I did eventually do that and I wish I'd gone sooner. Its helped me process all the emotions and stress.

Last words - keep going, power through, fight for what you need and do what you've got to do for yourself, as well as your Mum.

I really feel for you, as our situations are similar and I know how hard it is.
 

odean6578

New member
May 1, 2020
6
@Ray52 Thanks so much for your heartfelt response. I read it late one night and it really made me feel better. I hope your situation has improved.