Lack of support

[Balletkirst]

Hi everyone, this is my first time posting so I hope I do this right. My mum is 68 and has a diagnosis of Alzheimer's. She is very mobile and active but her deterioration has been rapid over the last 5 years but especially the last year. 5 weeks ago we finally identified a care home for her. Prior to this she was living at home with her partner who works full time. There were daily safeguarding referrals with mum wandering the streets, approaching neighbours and passing cars, not always fully clothed. It was horrendous but there was no support available. Day centres would not accept her because she could not remember to socially distance and because her level of anxiety is very high and she would become distressed. We did pay for full time home carers but they were often unreliable and felt they could not meet her needs at home.

So we chose a care home that is well rated, is set up for dementia patients and who we felt confident could meet her needs. It very quickly became apparent they were not willing to keep her and stated that they could not meet her needs as she would not settle at night. She would wander shouting for her partner or sister, wandering into other residents' rooms etc and pushing staff/kicking the door when returned to her room in her anxiety and distress. They were not able to give her sleeping medication to help settle her as they were concerned she would wander sleepily and hurt herself. The home recommended she needed a nursing home who would be able to review and administer medication as she needs it to help calm her and reduce anxiety. So we searched local nursing homes and identified a place set up for dementia. We spoke at length with the manager about each of mum's behaviours and they relayed how they would manage them so we agreed for her to move there. This nursing home then delayed her entry so the existing home said they couldn't keep her and she had to return home. Needless to say it did not go well but she has now moved into the nursing home on Thursday.

Today we have had reports from the nursing home that they are struggling to manage her as she is anxiously searching for her partner, it takes several staff to get her dressed, she is becoming physically and verbally aggressive to others in her distress. They are speaking to the doctor to see if there's anything else they can do.

Social services are saying they are not willing to get involved as we are still paying privately at present though that won't be able to last much longer. When we have made it clear that there is nowhere else for her to go as we simply cannot keep her safe at home any more the response we get is that they do not provide emergency care and would take weeks to do an assessment so they cannot help.

Please can anyone advise where we can turn for support? Surely my mum is not the only person with these needs and behaviours? Have we got it wrong and not found the correct care setting? What do we do if the nursing home say she has to leave?

I should add we are a very small family. Her main carer was her partner who works full time. I also work full time and have 2 small children under 5.

Any help gratefully received.

 

[kindred]

Hi everyone, this is my first time posting so I hope I do this right. My mum is 68 and has a diagnosis of Alzheimer's. She is very mobile and active but her deterioration has been rapid over the last 5 years but especially the last year. 5 weeks ago we finally identified a care home for her. Prior to this she was living at home with her partner who works full time. There were daily safeguarding referrals with mum wandering the streets, approaching neighbours and passing cars, not always fully clothed. It was horrendous but there was no support available. Day centres would not accept her because she could not remember to socially distance and because her level of anxiety is very high and she would become distressed. We did pay for full time home carers but they were often unreliable and felt they could not meet her needs at home.

So we chose a care home that is well rated, is set up for dementia patients and who we felt confident could meet her needs. It very quickly became apparent they were not willing to keep her and stated that they could not meet her needs as she would not settle at night. She would wander shouting for her partner or sister, wandering into other residents' rooms etc and pushing staff/kicking the door when returned to her room in her anxiety and distress. They were not able to give her sleeping medication to help settle her as they were concerned she would wander sleepily and hurt herself. The home recommended she needed a nursing home who would be able to review and administer medication as she needs it to help calm her and reduce anxiety. So we searched local nursing homes and identified a place set up for dementia. We spoke at length with the manager about each of mum's behaviours and they relayed how they would manage them so we agreed for her to move there. This nursing home then delayed her entry so the existing home said they couldn't keep her and she had to return home. Needless to say it did not go well but she has now moved into the nursing home on Thursday.

Today we have had reports from the nursing home that they are struggling to manage her as she is anxiously searching for her partner, it takes several staff to get her dressed, she is becoming physically and verbally aggressive to others in her distress. They are speaking to the doctor to see if there's anything else they can do.

Social services are saying they are not willing to get involved as we are still paying privately at present though that won't be able to last much longer. When we have made it clear that there is nowhere else for her to go as we simply cannot keep her safe at home any more the response we get is that they do not provide emergency care and would take weeks to do an assessment so they cannot help.

Please can anyone advise where we can turn for support? Surely my mum is not the only person with these needs and behaviours? Have we got it wrong and not found the correct care setting? What do we do if the nursing home say she has to leave?

I should add we are a very small family. Her main carer was her partner who works full time. I also work full time and have 2 small children under 5.

Any help gratefully received.

Welcome, you will find great support here, my first thought is consider employing an independent social worker, google them for your area. It is not overwhelmingly expensive.

 

[imthedaughter]

When you are running low on funds, (check for personal allowance but I thought it was £24k ish so when Dad got down to his last 30k I started the process) you need to contact social services and tell them that you need a financial assessment. To be honest the nursing home should be able to help you with this stuff, they will have seen it before. It's not your problem that she is aggressive. The nursing home need to get her medication correct and use coping strategies and if they can't cope, find her another place. She cannot just be sent back to you.
I didn't have contact with SS for a couple of years while dad was self-funding so don't be put off. But if mum is in nursing care and has plenty of cash then no, SS won't get involved.
It may take a while but the local authority will do a needs assessment and then give you a band or budget, if the nursing home agree to this then she can stay or they will have to find you other suitable places.
Then they will do a financial assessment and you will have to agree to set up standing order or direct debit to divert all her income e.g pension etc apart from a small personal allowance (£29.50 per week I think) back to the local authority.

 

[Violet Jane]

What a very worrying and distressing situation for you. You seem to have been very badly served by everyone who should be helping you. It's just not right that SS are not taking sufficient interest when your mother's needs are clearly complex, and it should not matter whether she is a self-funder or not in terms of the duties they owe her. I hate to say this but the quickest way that you are likely to get help is if your mother has to be admitted to hospital. Her extreme behaviour would probably trigger a psychiatric assessment and the involvement of a social worker. Alternatively, as Kindred has said, you could engage an independent social worker to assess your mother. Unfortunately, at least in my area, it can take a few weeks to get an assessment.

How much input have you had from the medical profession e.g. GP, psychiatrist, psychologist?

 

[canary]

Like @Violet Jane I was thinking that probably the only way to get your mum the help she needs is if she is admitted to a psychiatric assessment ward/unit via a section.
This sounds horrendous, but many members here have found that they then have had the treatment that they need. The ward/unit would sort out the best medication for them and would then assist with finding a care/nursing home.

Tell the nursing home that it is impossible for your mum to go home as she would be unsafe there and to get her sectioned when she becomes aggressive.

 

[Helly68]

My Mum was sectioned a few times, for Bipolar Disorder and I thought we might have to do so for mixed dementia as well.
It is always a very difficult decision, but it allowed Mummy to be treated for severe behavioural issues, by doctors in a secure environment. It led to her being prescribed Lithium for Bipolar Disorder, which eventually allowed her to resume her life.

 

[Violet Jane]

I agree with canary. Do not allow the nursing home to persuade you to take your mother home. Once she is at home you will wait ages for help as there will be no incentive for the relevant agencies to act quickly. If the home cannot cope with your mother’s behaviour then tell them they need to contact SS and the Mental Health Team. You and your family do not have the expertise to manage your mother’s behaviour and source suitable homes that can meet her needs. The professionals need to start acting professionally. Where are the medical profession in all this?

I feel so angry on your behalf.