What does the future hold for my mum?

Share your ideas about the practical side of caring.
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!
Hi Helen.

Your post screams out two words ... EXPERT ADVICE ... given both the caring and housing aspects.

( Is CHC / NHS Continuing Healthcare part of the equation here ? https://www.carersuk.org/forum/support- ... read-35998. Not clear
from your posting ... POINTON ? ... if so , all care will be FREE ??? )


AGE UK and SHELTER are my recommendations ... links to both follow :

https://www.ageuk.org.uk/

https://www.shelter.org.uk/

No one solution ... a whole range of interlocking problems which need experts to unravel.
Thanks for your reply.

She is in receipt of CHC funding as this funds the carers visits 4-times a day. What I don’t know is whether the decision that she could be looked after at home was based on my dad being there to care for her or whether they think she can be left home alone in between carer visits.

Edited: actually, scrap that. She might be funded by the LA. I don’t know. It’s hard to ask as she gets paranoid.

Just so worried about the future.
If CHC / NHS Continuing healthcare , your father is NOT a factor !

If LA , what does the care plan have to say for itself ?

In which case , your father should know ... he would have been part of it.
Okay, after managing to bring it up with my dad, she is on an LA plan which relies on my dad being there.
In which case , reads as if a new Needs assessment is required.

In addition , the strongest consideration given to CHC / NHS Continuing Healthcare.

Expert advice as posted previously , you will need it for all concerned.

( Do you want to see your father continue to struggle ??? )


With both AGE UK and SHELTER , spell out the precise housing element ... who owns what ... if rented , full details of the landlord and
tenancy under which the family occupy.

AGE UK ...will probably undertake a benefits check ... if not , let me know.
Thanks for your replies. This is all about a future and what it might entail, so all conjecture at the moment.

As for seeing my dad struggle, it’s the last thing we want, which is why my brother and I have already given up chunks of our lives over the last few years to help them both. He needs more support. He point blank refuses and shuts down all conversation about it.

I looked at her care plan today. A few things clearly rely on my dad but it’s also quite wishy washy and doesn’t go into much depth. They own their home and only access benefits based on her health.

Can the LA re-assess and decide that she needs a home if anything happened to my dad? What if she refuses to, which she certainly will? Can they keep her at home, alone for most of the time without the ability to contact anyone in an emergency? This would be cruel.

This is all genuinely terrifying. The thought that I might be forced into a caring role, when caring for two young children and needing an income for my own family and family home keeps me awake at night. I just don’t know what the future holds.

My brother and I are both in our 30s.
Can the LA re-assess and decide that she needs a home if anything happened to my dad? What if she refuses to, which she certainly will? Can they keep her at home, alone for most of the time without the ability to contact anyone in an emergency? This would be cruel.


AGE UK ... they ARE the experts ... ?

CHC / NHS Continuing Healthcare ... your homework before Monday ... and AGE UK ?
Hi Helen

Sorry to read things are so difficult. It's difficult to know what to do when other people just won't accept help. I think that whilst your parents refuse extra help, nobody can force them to accept it. But no one can force you to provide help in the future.

Regarding a will, you would have to go through probate regardless of whether one exists or whether some dies intestate. The latter just means there are specific rules that apply to who can inherit and by administrator of the estate.

With H&W PoA, you could put it to your mum as the somewhat harsh choice of having either you or SS make decisions about her care if she is judged not to have to capacity herself.

Has your dad had a carer's assessment?

Jane
Hello

That is unacceptable. Your mom cannot say things like that. Has your dad had a carers assessment or not? If not, ask the council to begin the evaluation process pronto. You need to be harsh here. Either he accepts assistance or she goes to a high quality care home. Have you looked at local care homes yet? Start looking around and asking questions too. Ask the council to give you some names and call or email the director of the care home to schedule a time to go to view the home.

Be sure to read care home reviews carefully and get as many details as possible. Take notes. Talk to the staff. Pay attention to your gut feeling however. Remember that this is a huge decision to make. Find out everything to know about the home. You can find a list of questions to ask at https://www.carehome.co.uk/advice/finding-a-care-home. Good luck with the search! Look beyond the numbers. Read care home inspection reports. Inquire about fees.

You need to be there for your own family. Especially the young children.