Hi all, I’m new to the forum today.
A bit of background:
Four years ago, my mum had multiple severe strokes. She was discharged to a nursing home where her care was funded. She made some progress meaning that my dad fought for her to come home. When her continuing healthcare assessment came, they said she could be cared for at home. She has been at home for nearly three years now. My elderly dad provides 24-hr care. She is in receipt of PiP payment and has carers visit 4 times a day to change her pads, bathe her and look after hygiene issues. They are there for 15-minutes each time.
My mum is bed-bound. With my dad’s support, she can use a patient turner to move into a wheelchair or armchair, but she prefers to say in bed as it hurts her back. They leave the house about once a week with the help of a wheelchair bus. He doesn’t drive and neither do my brother or I.
She has poor hand-eye coordination, so needs help with eating and drinking. She cannot read or write or change tv channels. We, along with agency help, have tried all aids for this but nothing works. She also has a loss of peripheral vision. She has a lifeline pendant but hasn’t the coordination to use it.
She is unable to use the commode as, the time it takes to transfer her with my dad’s help is too long, so she is effectively incontinent. She sleeps in a hospital bed downstairs and my dad sleeps on the couch next to her.
My dad is responsible for giving her feeding her, giving her drinks, medication, moving and handling and changing her pads in between carer visits.
Mentally, she was declared okay after a dementia nurse visited, much to my dad’s relief. But she has changed as a result of the stroke. She has lost empathy, happily making my toddler son cry during games and thinking it’s funny, telling visitors she hopes their babies die. She regularly tells
My dad that it should have been him who had a stroke. She also is convinced that her house is not her house and thinks we have been lying to her for years. She goes through phases of thinking my dad is stealing her money but mostly demands that he look after her finances. He accessed her bank accounts with her permission but has no legal right to do this.
The house is a tip because they’ve got lots of medical equipment in now and not much storage. My dad can’t keep up with the cleaning as my mum barely lets him leave the room. She refuses to let him throw anything out but equally says the house has nothing to do with her as she can’t go upstairs anyway. In co trust, she wants us to move extra furniture in from where it’s stored in the garage. They both refuse cleaners. My brother and I do what we can but it’s too big a job as the house needs clearing.
Mum has no control over her emotions, crying hysterically when my dad doesn’t buy enough sweet corn. She screams and shouts. She has aphasia, so it’s hard to understand what she says a lot of the time and certainly not when she is upset. So she gets louder in frustration. Episodes like this happen most days.
On top of this, she is manipulative. She is on best behaviour when I am there with my son, and when my Aunty is there. When my brother is there, she changes her attitude towards my dad and starts ranting at him. She cries loudly throughout the night, shouting at my dad. We worry about what she is like when it is just her and my dad. Her two sisters have all but stopped visiting her, potentially due to their own health issues but also because it can be hard work.
My dad is struggling but would never admit this. He has effectively lost his wife. He is at pains not to upset my mum because she becomes very difficult to be with. He gets the brunt of all her emotions. It’s also hard to talk to him by himself as he only leaves her when one of us can stay with her.
We can’t talk on the phone as he always puts us on speakerphone so she knows we’re not talking about her.
We have raised issues again and again: cleaning, clearing the house, getting a different wheelchair, getting cater support, power of attorney. All leads to my mum getting upset and my dad shutting down the conversation of, more frustratingly, pretending not to hear.
My brother and I visit through the week. He works full time but visits 3 days a week, often staying overnight. I have a 1-year old and am currently pregnant (early stages so no one knows yet). I work part-time due to both my son and my mum. This is hard financially on myself and my husband as I was the main breadwinner but he is very supportive. I can not afford to give up work. I’m off 4-days a week and spend 3 of those afternoons with them. It’s hard as it keeps my toddler cooped up in their small available space and my mum winds my son up a lot. We sometimes go out but are surrounded by hilly roads which my dad struggles with (my mum isn’t light). I handle the wheelchair but, as I’m now pregnant, won’t be able to do this for a long while.
My brother and I worry about the future and what happens if my dad dies. Dad is not fit and well. He is overweight, has health issues and doesn’t eat properly. I am against my brother caring for my mum as his life will effectively be over. I refuse to let that happen. I also don’t think it’s appropriate for him to have to provide some of that intimate care for his mum. He doesn’t want any of this either so that’s that.
I used to think that we’d try having my mum live with my husband and I. He was also supportive of this. However, as time has passed, I’ve come to the realisation that it would be completely unworkable to have my mum in the same house as young children. It would be upsetting for them and I would not be able to care for my mum and my children. Even without children, I wouldn’t be able to cope with my mum. It would destroy me mentally, seeing what my dad has to cope with. So I will also refuse to do this.
But my mum has made it clear that, if anything happens to my dad, she will not go into a home. She intends to stay at home with her carer visits.
The way I see it, this is unworkable. She has no ability to contact anyone in an emergency. She cannot use a phone or a lifeline button. The carers won’t be there long enough to make and prepare her meals (she already has Wiltshire farm food deliveries butt these need 45mins in the oven) and she won’t have access to drink through the times in between. She can’t let anyone into the house, open windows, and, god forbid, is completely vulnerable if anyone broke in. She can’t control the television or read or provide any sort of entertainment for herself. She can’t shift herself in bed.
We want to raise power of attorney again so that we have some say what happens to her if anything happens to my dad, but know that this will be met with refusal and we do understand why. She will think we’re planning on putting her into a home.
They are obsessed with getting a will sorted (but never get round to it). This is only to avoid probate as we’re their only children. But we have no concern about this. As far as I’m concerned, their home could well be needed for care home fees so is a little pointless to worry about a will. It’s their only real asset with some small savings.
In all likelihood, what will happen to my mum?
Will she be allowed to live at home, thereby forcing me brother and I into caring for her?
Was the continuing healthcare assessment based on my dad being there?
Or can she be forced to go into a home by social services?
In that case, without power of attorney, do we have any say in which home she could go into?
What if my brother and I pay top-up fees? Do we get a say then, even without PoA? We would still want to visit regularly, covering most days of the week between us.
Any advice gratefully received!