Carer to pay rent for 24/7care

[Panicky]

I live with my mum who has Alzheimer's and needs 24/7 care from me. She wants to stay in her own home as long as is possible and be cared for by me. She gets full Attendance Allowance.

I have been told by the Office of Public Guardian that I should pay food and utilities which I have done despite my mother's long standing wish that I should not have to pay these while I am looking after her. Now my sister/joint POA is making our lives miserable by suggesting I should be paying rent for the roof above my head (I have a room but no privacy as my mum wanders into my room several times during the night requiring help and reassurance). How is it possible to expect me to pay for being available to help my mother? My mother and I think it is ridiculous but my mother may no longer have the capacity to express her previous and current feeling. I have sought an advocate for her. I now have to wait weeks to speak to a lawyer about this. I keep getting conflicting advice. I have no income other than Carer's Allowance so am having to use savings to look after my mother as it is. My mother currently has enough money from her pensions and Attendance Allowance and is actually saving money. She has never charged rent to any family member who has lived with her including her other Power of Attorney.

 

[Jaded'n'faded]

Wow. The OPG and your sister don't want much, do they? Maybe they'd like the shirt off your back too?

Whilst I appreciate you want to care for your mum, in your position I would be leaving and turning all care over to them. But do you have your own property that you could go back to?

If all you have is Carer's Allowance and you have to pay food, utilities and rent out of that, I suspect you will be left with a minus amount. That's for giving 24/7 care. Compare that to the cost of employing a 24/7 live in carer - you should point that out to your dear sister and the OPG.

 

[Grannie G]

Hello @Panicky

My immediate reaction, if your sister believes you should pay rent, is your mother should be paying you for 24/7 care in return.

I don`t know whether I`m correct in saying this and I`m sure you would not want your mother to pay you for caring but if your sister is becoming hair splitting you could too.

 

[Panicky]

Thank you for your reply. I have always lived with my mother. I do not have a house of my own but would rather live in my own home and take my mother with me. My mother would find it difficult in another place otherwise I would if I was permitted move her into another (lesser) place than she currently has and is used to. However, I feel like I am being blackmailed by the other POA.

No one will tell me if I have to pay rent. I keep being referred from pillar to post. Is anyone else in this situation? I have been told by the Office of Public Guardian that my mother's Attendance Allowance is for her not for compensating me for my care.

I would never have given up my job if I had known this was the situation. The problem is my sister the other POA causing problems.

 

[Sarasa]

I think phoning the Dementia Connect support line on 0333 150 3456 or emailing them at dementia.connect@alzheimers.org.uk might be a good idea. They will probably be able to help you with the legal aspects of this.
However if your mother needs more help, carers coming on or needs to go to a care home this would be far more expensive than the free care you are giving now. Is there anyway you can go away for a few days and ask your sister to become your mother's carer for that time. She will then see what the job really entails.

 

[Panicky]

I think phoning the Dementia Connect support line on 0333 150 3456 or emailing them at dementia.connect@alzheimers.org.uk might be a good idea. They will probably be able to help you with the legal aspects of this.
However if your mother needs more help, carers coming on or needs to go to a care home this would be far more expensive than the free care you are giving now. Is there anyway you can go away for a few days and ask your sister to become your mother's carer for that time. She will then see what the job really entails.

I have been told by Dementia Connect to speak to a lawyer - I have contacted several and can only get a legal helpline advice tomorrow and a local one in May. I cannot - at the moment - speak to my sister as she is saying my mother should go into a care home and implying I cannot cope - whilst being the source of making very life difficult for me. Because of Lockdown she has barely seen my mother and my mother tells me she doesn't want to speak to her. We are all very stressed. I can cope but need this situation to be over as it is hurting us all.

Perhaps the trouble is my mother is saying one thing to me but cannot say the same thing to my sister over the phone or face to face because she is confused/has forgotten who my sister really is. I have arranged an advocate for my mother.

 

[lemonbalm]

I wonder if Citizens' Advice can be any help, if you haven't already tried them:

Citizens Advice

Online free advice from Citizens Advice to help you find a way forward, whatever the problem. Our research enables us to campaign on issues affecting people's lives.

www.citizensadvice.org.uk

 

[canary]

It seems perverse to me that your sister is insisting that you pay rent and then, almost in the next breath, is saying that she wants her to move to a care home!
Does she realise how much care homes cost?

 

[Duggies-girl]

I live with my mum who has Alzheimer's and needs 24/7 care from me. She wants to stay in her own home as long as is possible and be cared for by me. She gets full Attendance Allowance.

I have been told by the Office of Public Guardian that I should pay food and utilities which I have done despite my mother's long standing wish that I should not have to pay these while I am looking after her. Now my sister/joint POA is making our lives miserable by suggesting I should be paying rent for the roof above my head (I have a room but no privacy as my mum wanders into my room several times during the night requiring help and reassurance). How is it possible to expect me to pay for being available to help my mother? My mother and I think it is ridiculous but my mother may no longer have the capacity to express her previous and current feeling. I have sought an advocate for her. I now have to wait weeks to speak to a lawyer about this. I keep getting conflicting advice. I have no income other than Carer's Allowance so am having to use savings to look after my mother as it is. My mother currently has enough money from her pensions and Attendance Allowance and is actually saving money. She has never charged rent to any family member who has lived with her including her other Power of Attorney.

Hi @Panicky I was almost in your situation but I did have my own home to go back too. I looked after dad for a couple of years full time but I did go home at night, during this time I only received carers allowance as it was not possible to keep working. That was fine and I managed okay until my dad had a very traumatic hospital stay for 3 weeks. It soon became very clear that my dad would not be able to live on his own ever again so I was basically volunteered by my brother and his wife to look after dad 24/7 living in with the odd bit of help from them.

I knew how this would work out and so did my dad and he offered to pay me a token sum for every night that I stayed which was almost every night. I told my brother who would also get the same payment if he stayed over night and I was shocked at his reaction. He almost spat at me with temper because that would eat into his inheritance and I was already getting carers allowance anyway so what more did I want. Actually I just wanted some help.

No way was I going to contribute to bills or food. Has your sister any idea of the cost of 24/7 care. She should be supporting you by giving you time out. Does she still work or have a social life. Does she have holidays (difficult with covid I know but I bet she has some planned) Will she stay over for a weekend so that you can get away.

I think you have drawn the short end of the stick here and need to be very careful. You sister sounds very nasty and spiteful and I fear that you could end up in a bad spot financially.

 

[Panicky]

Hi @Panicky I was almost in your situation but I did have my own home to go back too. I looked after dad for a couple of years full time but I did go home at night, during this time I only received carers allowance as it was not possible to keep working. That was fine and I managed okay until my dad had a very traumatic hospital stay for 3 weeks. It soon became very clear that my dad would not be able to live on his own ever again so I was basically volunteered by my brother and his wife to look after dad 24/7 living in with the odd bit of help from them.

I knew how this would work out and so did my dad and he offered to pay me a token sum for every night that I stayed which was almost every night. I told my brother who would also get the same payment if he stayed over night and I was shocked at his reaction. He almost spat at me with temper because that would eat into his inheritance and I was already getting carers allowance anyway so what more did I want. Actually I just wanted some help.

No way was I going to contribute to bills or food. Has your sister any idea of the cost of 24/7 care. She should be supporting you by giving you time out. Does she still work or have a social life. Does she have holidays (difficult with covid I know but I bet she has some planned) Will she stay over for a weekend so that you can get away.

I think you have drawn the short end of the stick here and need to be very careful. You sister sounds very nasty and spiteful and I fear that you could end up in a bad spot financially.

 

[Panicky]

Thank you for sharing your experience. The Office of Public Guardianship say that I must pay my half of all food/bills but they simply said get a lawyer when I asked them about the rent issue (my mother owns her own house so would be making a profit from me). My mum is dismayed as I am about this - she has never taken rent from family including my sister and my sister's children. I am dumbfounded.

 

[Panicky]

Thank you for sharing your experience. The Office of Public Guardianship say that I must pay my half of all food/bills but they simply said get a lawyer when I asked them about the rent issue (my mother owns her own house so would be making a profit from me). My mum is dismayed as I am about this - she has never taken rent from family including my sister and my sister's children. I am dumbfounded.

It seems perverse to me that your sister is insisting that you pay rent and then, almost in the next breath, is saying that she wants her to move to a care home!
Does she realise how much care homes cost?

It seems perverse to me that your sister is insisting that you pay rent and then, almost in the next breath, is saying that she wants her to move to a care home!
Does she realise how much care homes cost?

 

[Duggies-girl]

@Panicky I don't know anything about legalities but what has it got to do with the OPG It's your mums money and your mums house and if she is happy to have you living with her for free while providing free care then they should bite your hand off.

As POA you are not allowed to benefit from your mum which you most certainly are not. In fact you are losing out big time while saving your mum and your sister (in the long run) a great deal of money. Your sister is the one likely to gain from all of this in the end. I would tell her that you are going back to work and then you will be able to pay your share of bills but your mum will need to employ a 24/7 private carer at her own expense and it will be a considerable expense.
I have seen links on here before about 'gratuitous payments' and I am sure that your mum is actually allowed to pay you as a family member to look after her and this was from the OPG so I suspect that your sister has made some kind of huge fuss for whatever reason that she can think of and as for seeing a lawyer, I suspect that they will say it is a family matter.

 

[Duggies-girl]

@Panicky this might be the one, you may have to copy and paste it.

Public Guardian practice note (SD14): OPG’s approach to family care payments (web version)

www.gov.uk

 

[silkiest]

Hi @Panicky, if my brothers dared to suggest such a thing I would reply that I couldn't possibly afford that rent and be a full time carer with no income. Why not suggest you get the same employment contract as 24 hour carers - i.e a wage, paid holidays and pension contributions. Remind her that as a carer you will get National Insurance Credits (hope you have claimed this or carers allowance which in effect also credits you ) so these will not need to be paid. This should make you MUCH cheaper than using an agency. I would also forward on a few adverts from these agencies - the costs are astronomical and the carer often gets board and lodgings included!

 

[canary]

Thank you @Duggies-girl , I felt sure it was OK for a family member to get a payment from the person they were caring for, but couldnt find the documentation. In fact, I was intrigued to see that the amount suggested was
"That involves calculating family care by taking the commercial cost of care in the client’s home area and reducing it by 20%. This in turn follows the approach taken by the Queen’s Bench Division of the High Court in quantifying heads of damages in personal injury litigation."

You might want to get a quote for live-in care from an agency and send that, plus a link to this and send it to your sister!
Giving care in return for living there rent free is peanuts compared to that.

 

[GELeake]

Apparently live-in care is £900 and rapidly upwards per week.

 

[Duggies-girl]

@GELeake I think £900 a week for 24/7 live in care would be cheap and well below the minimum wage.

I knew I had seen it somewhere @canary so I googled it. Dad offered to help me out and my brother was outraged. The only reason I accepted the help was because I was fed up with doing absolutely everything apart from a night or two off every 10 days if my brother didn't have some function or other to go or an holiday booked. Taking advantage of me was taken to the limit.

My husband used to cover for me some nights so we only spent time together about once a fortnight.

 

[Bunpoots]

I’ve not trusted myself to comment on your sister so far @Panicky as I’d probably be permanently excluded from the site if I said what I think of her ?.

I can’t help wondering if she imagines that getting your mum into a carehome means that she will then be able to sell the house and keep the money for herself using POA. She won’t - the proceeds of sale will have to be used to fund your mum’s care but maybe sister doesn’t realise this or thinks there’s a way round it?

I really don’t understand what she hopes to gain by taking this stance and I am disgusted in her causing you all this stress when, in my opinion, she should be proclaiming her undying gratitude that you’ve chosen to take on this incredibly difficult job and supporting you emotionally and financially to do it.

 

[MaNaAk]

Thank you for your reply. I have always lived with my mother. I do not have a house of my own but would rather live in my own home and take my mother with me. My mother would find it difficult in another place otherwise I would if I was permitted move her into another (lesser) place than she currently has and is used to. However, I feel like I am being blackmailed by the other POA.

No one will tell me if I have to pay rent. I keep being referred from pillar to post. Is anyone else in this situation? I have been told by the Office of Public Guardian that my mother's Attendance Allowance is for her not for compensating me for my care.

I would never have given up my job if I had known this was the situation. The problem is my sister the other POA causing problems.

I've been in the same position with you except I was the only POA and rent was never demanded and I say you shouldn't be paying rent. I would suggest to your sister that she could have your mum at her house to stay occasionally to give you a break.

MaNaAk