My dad is no longer able/no longer wishes to care for my mam

All about caring
1

Sorry to say this is a long one.

My mam is 70 and suffers from dementia, COPD and paranoid schizophrenia. It means she regularly forgets words, or uses incorrect words, making communication difficult. Almost every task she asks of my dad (71) results in her becoming extremely agitated and argumentative.
Her paranoid schizophrenia creates multiple issues on a daily basis.

  1. She falsely believes he is deliberately causing problems when he incorrectly guesses the wrong items she has requested.
  2. When discussing entirely innocent topics in a different room with me - do we need any more bread/milk etc - “stop whispering about me. I can hear you.”
  3. If she can’t find a misplaced item, she automatically assumes that it has been thrown out by dad.
  4. Regularly believes neighbours and people in the street are talking about her. When checked. Noone has been present in the garden/street.

Their marriage is extremely unhappy since her stroke and return home.
My mam is a very selfish woman (always has been) and is used to getting her own way and demanding my dad do everything for her with very little appreciation.

She is extremely abusive, belittling and domineering and will remain so until the day she dies. She won’t change.
Trying to control when he can and can’t watch TV, when he can go to sleep, when he can relax, instead of doing tasks for her such as decorating, telling him not to speak to neighbours and immediate family members such as myself. This also extends to telling him not to tell doctors and social workers about her conditions.

She shouts and argues until late night - 0000-0100, preventing the household from sleeping at normal times. She then wakes at approximately 4am every morning, at which point she starts shouting again and making demands of my dad. This almost always continues until at least 10am, meaning aside from forced late night bedtimes on the family, we are extremely sleep deprived daily.
She will demand my dad “get out of bed you’re just being lazy” - after 4hrs sleep?! We try to recover throughout the day, but as mentioned above, she ia abusive and shouting all day. So we can’t even recover/ sleep then.

She also interferes in my dad’s ability to care for my brother, who has paranoid schizophrenia and learning difficulties. She’ll frequently demand that her care be placed before his, leading to a worsening of his health.

My dad - 71 - is now her full time carer but he has no help from outside carers or social services. Despite reassurances that they would make frequent visits, they have not been since mam’s initial ‘exit’ from the care home. They have cancelled two appointments in a row and it has now been more than a month since their first visit. They have not offered a carers assessment to determine if my dad is even capable or willing to continue caring.

My question is: does my dad have to carry on caring for her?
He is at breaking point. First time in his life requiring anti-depressants to deal with the situation. He is exhausted daily, both physically and mentally from the situation.
What are his options?

Q. We have considered getting her returned to care home, as it was the opinion of two psychiatrists from the local mental hospital, that her mental health warranted it.
A. Although this seems unlikely to happen as when looked into, a person can’t legally be forced into a care home against their will. Mental health section does not appear to be an option as otherwise the psychiatrists mentioned above would’ve already done this.

Q. My dad has considered simply walking out on her and leaving her alone, to force social services to act, as she would be a vulnerable adult alone.
A. Trouble is, my brother - whom my dad is also the sole carer for - also lives in this household and he suffers from paranoid schizophrenia and learning difficulties. As a result this option immediately becomes unacceptable for his health. Also my dad has no friends or relatives to which he could retreat.

Please someone advise? We’re desperate for a solution that, social services, doctors and Mental Health Crisis team are all failing to provide.

2

Do ALL 3 services , social services and doctors and the MH crisis team know all this, what you have posted?

Often the Doctor will assume social Services is providing support so all is ok, Often Social services assume mental Health Services are involved and all is ok.

All 3 services should be talking to each other and arranging a care and treatment plan for your mum and appropriate unpaid carer support for your dad.
So I would suggest a good letter sent recorded to each of the services detailing all you have put on your post.

Your dad should be getting regular breaks/respite from looking after your mum and your brother, caring for one person difficult enough, caring for 2 impossible with no support.

Unfortunately this is what often happens patient is discharged from care/hospital, the family are just left to deal with everything and no help and support.

With both mum and brother both suffering from paranoid schizophrenia, is there a care co-ordinator, care manager, there should be someone managing your mum and brothers care treatment and support?

All services You have to chase up otherwise they assume everything is alright, even thought its obviously not.

You or your dad will have ring and ring and ring and demand some action.

Is your mum fit to be at home, should she have been sent home to a already difficult situation, should she be back in care?
which would make it easier for your dad.

Your dad should be able to access advocacy, just look on the internet and there should be an advocacy service in your area.

Mind Or Rethink might be able to help and advice about your mum and dad.

Citizens Advice might be able to help, they should be able to advice on the telephone or through the internet.

3

It’s very simple: no-one can be forced to care for anyone else no matter what their relationship.

Your Dad has to tell Social Services that he can’t do it any more, he’ll have to be very firm about it cos they will wheedle and cajole and do everything that they can think of (they’ll even lie if they feel they have to) to get him to change his mind.

4

Yes, they’ve all been made aware of this. Mental Health Crisis Team are an absolute joke. After being made fully aware of this situation, they advised “it was more of a social issue” and washed their hands of it.
Also as a result of this and their advice, I was made homeless as the initial team, who were barely more than 20yrs old totally mis-judged the situation and said “I was causing agitation by being in the house” and so had to leave under threat of them involving the police… Surprise surprise, the next day a team of two psychiatric doctors arrived. They both determined that it was indeed a mental health issue and that she should really be in hospital, which my mam had point blank refused.



With both mum and brother both suffering from paranoid schizophrenia, is there a care co-ordinator, care manager, there should be someone managing your mum and brothers care treatment and support?

Neither my dad or me have ever been made aware of this, let alone had it suggested…



Is your mum fit to be at home

In our (my dad and I) opinion, definitely not. Also, the two psychiatrists that were called from the local mental hospital on the day of her return, felt she wasn’t.



should she have been sent home to a already difficult situation

Again, in the opinion of me and my dad, definitely not. She wasn’t actually sent home. She escaped from the care home and when they were notified, they simply said “there’s nothing we can do as she has ‘capability’”




should she be back in care? which would make it easier for your dad.

Yet again, in the opinion of me and my dad, almost certainly.

5

She “escaped from the care home” and they did nothing??
When was this?
Why was she there in the first place?

6

Approximately a month ago. The care home is extremely close to our home - maybe 150m away. She was admitted after having a major stroke, which caused her to lose her ability to speak normally - literally distorted ‘grunts and groans’ and of course, they had major concerns about her ability to swallow, so she had to be fed intravenously for a while.

The speech has returned almost entirely to normal, although she gets hung up on words, or uses the incorrect words.
Mobility was affected, although I’m unclear as to the specifics. To the best of my knowledge this was never discussed with my dad. Something to do with fluids on the legs seemingly.

There were also issues of incontinence and personal hygiene, at home before she was admitted to hospital. Wetting herself on the couch/bed and laying there all night, refusing advice from my dad to go get washed immediately and allow him to change the sheets.
She’d also frequently go onto the balcony at night and wet herself deliberately, when the neighbours weren’t present or when she believed the neighbours wouldn’t notice.
On top of this she’d regularly go to the kitchen and urinate in a bucket - again deliberately - instead of moving to the bathroom for this.
I guess some of this could be chalked up to ‘incontinence’, but to actively choose to wet herself in specific locations, instead of at the toilet, makes me question if it wasn’t just laziness? If not, then she perhaps feels she can’t make it to the toilet in time. In which case clearly the house isn’t suitable for her in that one regard.

On the same topic, on the occasions when she would visit the toilet - generally after waking up, or before bed - she regularly has what can only be described as explosive diarrhoea. She would leave the toilet bowl and floor completely covered, not shower afterwards and leave her shit covered knickers on the floor, for someone else to clean up.

7

You need to write this down and give it to Social Services, detail every single thing. Dad is elderly himself, needs to have less pressure.

8

Another thought, dad is a vulnerable adult and is entitled to a Care Act Advocate.