Advice please...

[Shari12]

Hi All... I know I will be given the correct help and guidance on here...

Mum had to go into a care home a few months ago, because I could no longer keep her safe in her own home... She gets her state pension, a very small private pension that was originally my Dad's and an attendance allowance... other than that she has no savings and her income doesn't come close to covering the cost of the Care Home, so as her Attorney, I'm having to sell her little 2 bedroomed ex-council house to fund her care.

Since I moved in to care for her 24/7, in June 2016, Social Services made it abundantly clear that, because Mum owned her own property, we were on our own and would get no help from them... so I found a lovely care home for her, where she's happy and well cared for.

I have been funding more than half towards the cost of her care out my own pocket until her house is sold and I'm struggling to cope now. I don't earn that much and have had to use my very modest savings to manage. Hopefully, the house sale will complete before the end of October and I will only have to pay for this month before the proceeds of her house can start funding her.

It's been the most difficult and heartbreaking process, clearing out my Mum's home, (63 years of memories), while she's still alive, something I never imagined doing...
I lost my Mum for the first time 4 years ago, to Alzheimers... I now feel I'm losing her a second time and that I've in some way let her down, because I always promised I would care for her at home... I now have to prepare myself for the ultimate loss...

In the midst of all this grief and guilt, I have to start thinking about the practicalities, like cancelling all the utilities and informing the DWP, HMRC etc that she no longer lives at this address and transfer all her official mail to my new address.

I've never done anything like this before and it's overwhelming...there's so much to think about, at a time when I just want to curl into foetal position and cry...

I'm sure that many of you will have been through similar experiences, so any advice about how to go about it would be much appreciated.

Thank you x

 

[Beate]

Did the council not offer you a Deferred Payment Agreement where they pay the care home until the house is sold and then you pay them back? There should also have been a three months grace period to enable you to sell the house without incurring costs. I feel you have been badly advised.

Have you got financial LPA? Without that some companies might not talk to you or take instructions from you. If you do, I guess it's just making a list and contacting them one after the other.

 

[love.dad.but..]

How you feel is exactly how I felt with dad in every aspect that you have detailed. I am a list maker which helps me to be methodical and helps to feel things are being achieved as I cross off. Write down all the people you will need to inform...write a standard letter then copy as many as you need and just fill in the different details for each individual institution, account ref etc. You say you are her attorney which am presuming is at least the finance one so some may accept just a letter confirming that accepting the action you are taking some may want copy of the poa...some may accept photocopy some may want certified. Don't send the original anywhere.It seems daunting but once you start and can see you are getting somewhere it will feel easier. The emotions however natural are hard to deal with and it hurts but try as I did...just keep reminding yourself dementia is making these decisions not you and you are a wonderful caring daughter who is continuing to do the right thing for your mum in the past...now...and in the future.

 

[Shari12]

I do have POA, which is why I'm able to sell my Mum's house to fund her care.

As for Social Services... they have been no help or support whatsoever... in fact the Social Worker who came to see me in the Hospital had a very bad attitude and showed not a shred of humility or empathy. She was only interested in finances... her first question was not about my Mum's welfare, but did she have any savings or property. Then, as soon as she knew my Mum owned her house, she told me we weren't eligible for any help or funding. Basically, we were on our own.

 

[love.dad.but..]

I do have POA, which is why I'm able to sell my Mum's house to fund her care.

As for Social Services... they have been no help or support whatsoever... in fact the Social Worker who came to see me in the Hospital had a very bad attitude and showed not a shred of humility or empathy. She was only interested in finances... her first question was not about my Mum's welfare, but did she have any savings or property. Then, as soon as she knew my Mum owned her house, she told me we weren't eligible for any help or funding. Basically, we were on our own.

Dad was self funding and I found similar response although the SW was quite kind but she admitted there wasn't anything she could offer in terms of practical help and I had already got things like AA for dad.

 

[Sirena]

I had the same attitude from SS, as soon as they knew my mother had funds they dropped her like a hot potato. Yes, you're very much on your own.

Fortunately my mother's money was not in property so I could access it immediately to fund her care home. I hope the house sale completes asap as that will be one big weight off your mind. I went through this from January-March this year, arranging the care home, rehoming her cat, dealing with her landlord and clearing her flat, working through the acres of paperwork, multiple institutions to inform, accounts to close etc. It seems like a huge mountain to climb, but you will get through it. Keep posting here and you will get plenty of support.

 

[Distressed55]

Hello @Shari12

Yes, social services are beyond useless. Which is no comfort to you at all. There was a thing called the deferred payment agreeemnt which could have helped whilst the house was sold, but since you've very nearly completed the sale, it's not worth looking into now. Which again is no comfort, other than the fact that you've saved your mum some money because interest and arrangement fees are involved.

In addition to the already extensive work you're doing, you need to draw up a schedule of the payments that you've made on behalf of your mum whilst she's been in the care home, and make sure that you get reimbursed. The schedule of payments are just there in case someone should take issue with you. Hopefully it's unnecessary but I've learned that there are an awful lot of venal people around. And I'm sure that your mum would be the first to say that you shouldn't be out of pocket, looking after her.

Although interest rates are low, you can still make some money for your mum through investments, and there is a £1000 savings allowance for basic rate tax payers which will reduce her tax bill a little. Some banks and buildings societies won't let you do internet banking if you've got a poa, so you may need to consider local branches where you can physically open the accounts.

Clearing the house and so on is ghastly, and I keep howling every time I go to my dads house. This is an absolutely ghastly disease, and we are all doing the best that we can. You are clearly a wonderful daughter, and I'm sure that your mum would be very proud of you. There is a lot to do, but try to do one thing per day and you'll get through it. Keep a master list of what you need to do, but don't try to do loads in one day - small steps, small steps.

 

[DeMartin]

I too was ignored by SS, Mum admitted to hospital with acute confusion, I must say the hospital fully evaluated her, and gave us a diagnosis of severe vascular dementia. She needed 4 care visits a day or care home. 4 visits a day would have existed for 2 visits so CH only option.
I was given a list of local CH with vacancies, and told to get on with it.
I had no POA, and it was too late to get one.
I moved mum to Kent from the South West, got COP.
What really worries me is no one ever has checked where Mum is.( she’s in a nice CH, safe and secure)

 

[MaNaAk]

Hi All... I know I will be given the correct help and guidance on here...

Mum had to go into a care home a few months ago, because I could no longer keep her safe in her own home... She gets her state pension, a very small private pension that was originally my Dad's and an attendance allowance... other than that she has no savings and her income doesn't come close to covering the cost of the Care Home, so as her Attorney, I'm having to sell her little 2 bedroomed ex-council house to fund her care.

Since I moved in to care for her 24/7, in June 2016, Social Services made it abundantly clear that, because Mum owned her own property, we were on our own and would get no help from them... so I found a lovely care home for her, where she's happy and well cared for.

I have been funding more than half towards the cost of her care out my own pocket until her house is sold and I'm struggling to cope now. I don't earn that much and have had to use my very modest savings to manage. Hopefully, the house sale will complete before the end of October and I will only have to pay for this month before the proceeds of her house can start funding her.

It's been the most difficult and heartbreaking process, clearing out my Mum's home, (63 years of memories), while she's still alive, something I never imagined doing...
I lost my Mum for the first time 4 years ago, to Alzheimers... I now feel I'm losing her a second time and that I've in some way let her down, because I always promised I would care for her at home... I now have to prepare myself for the ultimate loss...

In the midst of all this grief and guilt, I have to start thinking about the practicalities, like cancelling all the utilities and informing the DWP, HMRC etc that she no longer lives at this address and transfer all her official mail to my new address.

I've never done anything like this before and it's overwhelming...there's so much to think about, at a time when I just want to curl into foetal position and cry...

I'm sure that many of you will have been through similar experiences, so any advice about how to go about it would be much appreciated.

Thank you x

Dear Shari,

I am in the same position as you so I know what you are going through. You have done your best and are continuing to do your best. I am sorting out dad's utility bills one of which is the council tax to which dad has been promised a pay back. There are still things which he is entitled to such as pension credit which I need to look at but you must take things slowly and do them in your own time otherwise you could end up with shingles like me. I am much better now
but I did have a melt down last week when I thought of what both mum and dad would have done if they knew I was ill. It is similar to bereavement but I think of my dad's smiling face every
time I see him and I know I have done the right thing. I had to call the paramedics five times last year and if I hadn't put him in the home I would have had to call them again.

MaNaAk

 

[Barbelle]

Hi @Shari12

I empathise with you having also gone through a similar experience earlier this year with my Mum. Whilst we were lucky and supported with a great SW finding a CH due to Mum being under the cap in savings, dealing with the process and paperwork has been a lonely job and did seem overwhelming at such an emotional time.

I had registered PoAs with most third parties yet still been moved to tears at the lack of understanding within some call centres, and had to apologise for losing my temper with another whose process felt so onerous it was painful, so where possible I'd agree with the comment above and do it in writing in advance. Some did make it easy though, BT, HSBC and DWP all get my vote of thanks for their support.

The suggestion to list all is a great idea also as you'll be able to remind yourself how many of those organisations you may not previously have shared a copy of the PoA with - as advised above, don't share the original but get copies and have them certified. Perhaps, approach the solicitor handling the house sale, they may be happy to help in the circumstances.

My watch out would be AA, they were ruthless (when a CH placement is publicly funded to any degree, AA is no longer applicable) - I notified them a couple of weeks after Mum went into the CH, she was originally there on emergency respite vs permanent, and they as good as suggested I had committed fraud for not informing them immediately. They issued a repayment notice and penalty which was 90% of the repayment amount - I challenged it and it was annulled. DWP later told me they would have advised AA saving me the hassle.

Another point to note is tv licence, when coming to close down Mum's account online I was directed to a transfer instead as we put her old tv in her room at the CH just in case.

You're not alone with the feelings of guilt, and for me I don't think they will ever go away, I'm just learning to live with it. It was in my Mum's PoA papers that she wanted to remain at home, but in the end, I had to realise that home wasn't the sanctuary it had always been and that fact makes the decision easier for me to bear. I wish you well and hope you can find the reasoning that helps in time.

 

[Nicnoks]

Hi @Shari12

I empathise with you having also gone through a similar experience earlier this year with my Mum. Whilst we were lucky and supported with a great SW finding a CH due to Mum being under the cap in savings, dealing with the process and paperwork has been a lonely job and did seem overwhelming at such an emotional time.

I had registered PoAs with most third parties yet still been moved to tears at the lack of understanding within some call centres, and had to apologise for losing my temper with another whose process felt so onerous it was painful, so where possible I'd agree with the comment above and do it in writing in advance. Some did make it easy though, BT, HSBC and DWP all get my vote of thanks for their support.

The suggestion to list all is a great idea also as you'll be able to remind yourself how many of those organisations you may not previously have shared a copy of the PoA with - as advised above, don't share the original but get copies and have them certified. Perhaps, approach the solicitor handling the house sale, they may be happy to help in the circumstances.

My watch out would be AA, they were ruthless (when a CH placement is publicly funded to any degree, AA is no longer applicable) - I notified them a couple of weeks after Mum went into the CH, she was originally there on emergency respite vs permanent, and they as good as suggested I had committed fraud for not informing them immediately. They issued a repayment notice and penalty which was 90% of the repayment amount - I challenged it and it was annulled. DWP later told me they would have advised AA saving me the hassle.

Another point to note is tv licence, when coming to close down Mum's account online I was directed to a transfer instead as we put her old tv in her room at the CH just in case.

You're not alone with the feelings of guilt, and for me I don't think they will ever go away, I'm just learning to live with it. It was in my Mum's PoA papers that she wanted to remain at home, but in the end, I had to realise that home wasn't the sanctuary it had always been and that fact makes the decision easier for me to bear. I wish you well and hope you can find the reasoning that helps in time.

Hells bells I didn’t know that about AA. Will ring them tomorrow as Mum moved 2.5 weeks ago and I haven’t been able to face starting the paperwork yet - I had assumed because she is funded on an emergency basis that the SW would handle all of that side of things as I know they will take all her pension money bar as small amount for her sundries. Another steep learning curve to climb

 

[Kevinl]

Hi @Shari12
Another point to note is tv licence, when coming to close down Mum's account online I was directed to a transfer instead as we put her old tv in her room at the CH just in case.

You shouldn't need a TV licence as the home can get an ARC licence which is £7.50 per room per year, link below. The home normally just count it in with the fees as it's only 14p a week so hardly worth bothering about.
As your mum doesn't need a TV licence (assuming the home has an ARC licence) then you should get a rebate, check with the home first but I suspect that you're just throwing money away by licencing a TV that's already licenced.
K

https://www.tvlicensing.co.uk/check-if-you-need-one/for-your-home/care-home-residents-aud4

 

[Nicnoks]

Hi All... I know I will be given the correct help and guidance on here...

Mum had to go into a care home a few months ago, because I could no longer keep her safe in her own home... She gets her state pension, a very small private pension that was originally my Dad's and an attendance allowance... other than that she has no savings and her income doesn't come close to covering the cost of the Care Home, so as her Attorney, I'm having to sell her little 2 bedroomed ex-council house to fund her care.

Since I moved in to care for her 24/7, in June 2016, Social Services made it abundantly clear that, because Mum owned her own property, we were on our own and would get no help from them... so I found a lovely care home for her, where she's happy and well cared for.

I have been funding more than half towards the cost of her care out my own pocket until her house is sold and I'm struggling to cope now. I don't earn that much and have had to use my very modest savings to manage. Hopefully, the house sale will complete before the end of October and I will only have to pay for this month before the proceeds of her house can start funding her.

It's been the most difficult and heartbreaking process, clearing out my Mum's home, (63 years of memories), while she's still alive, something I never imagined doing...
I lost my Mum for the first time 4 years ago, to Alzheimers... I now feel I'm losing her a second time and that I've in some way let her down, because I always promised I would care for her at home... I now have to prepare myself for the ultimate loss...

In the midst of all this grief and guilt, I have to start thinking about the practicalities, like cancelling all the utilities and informing the DWP, HMRC etc that she no longer lives at this address and transfer all her official mail to my new address.

I've never done anything like this before and it's overwhelming...there's so much to think about, at a time when I just want to curl into foetal position and cry...

I'm sure that many of you will have been through similar experiences, so any advice about how to go about it would be much appreciated.

Thank you x

Oh Shari, I sympathise with your situation and relate so much to what you are going through.

Firstly, if you have been resident at your mums can they make you sell the house to fund her care? Surely they are making you homeless by doing this?

Secondly, definitely keep a detailed schedule of everything you have funded yourself - they will not accept your word that you have paid out of your own pocket or give you advice on how to reimburse yourself. You will have to provide an audit trail.

Thirdly, Take care of yourself and if there is someone who can help you let them. Big hugs my lovely x

 

[Kevinl]

Hells bells I didn’t know that about AA. Will ring them tomorrow as Mum moved 2.5 weeks ago and I haven’t been able to face starting the paperwork yet - I had assumed because she is funded on an emergency basis that the SW would handle all of that side of things as I know they will take all her pension money bar as small amount for her sundries. Another steep learning curve to climb

AA stops 28 days after you enter the care home or hospital so you need to tell the DWP as soon as possible but if the LA are funding on an "emergency basis" then does that mean you're going to be self funding in the future? If so you can start claiming the AA again so you need to suspend the claim not cancel it otherwise you'll have to re apply.
K

 

[Nicnoks]

AA stops 28 days after you enter the care home or hospital so you need to tell the DWP as soon as possible but if the LA are funding on an "emergency basis" then does that mean you're going to be self funding in the future? If so you can start claiming the AA again so you need to suspend the claim not cancel it otherwise you'll have to re apply.
K

Thank you, that’s a great help.

Mum is under threshold so our LA are funding her care but she has to contribute the bulk of her state and private pension plus the tariff payment on her savings ( £1 for every £250 she has over £14250 - it’s disgusting!). The emergency funding is in place I assume until they do the financial assessment and/or get their paperwork in order.

I’ll call them tomorrow about her AA and let them know. Thank you again x

 

[Barbelle]

You shouldn't need a TV licence as the home can get an ARC licence which is £7.50 per room per year, link below. The home normally just count it in with the fees as it's only 14p a week so hardly worth bothering about.
As your mum doesn't need a TV licence (assuming the home has an ARC licence) then you should get a rebate, check with the home first but I suspect that you're just throwing money away by licencing a TV that's already licenced.
K

Thanks for the tip but as Mum is over 75 and receives a free tv licence, it was a process point and one I haven't raised with the CH as a result. May be one to consider if news reports are realised and charges brought in for all in future.

 

[Barbelle]

Thank you, that’s a great help.

Mum is under threshold so our LA are funding her care but she has to contribute the bulk of her state and private pension plus the tariff payment on her savings ( £1 for every £250 she has over £14250 - it’s disgusting!). The emergency funding is in place I assume until they do the financial assessment and/or get their paperwork in order.

I’ll call them tomorrow about her AA and let them know. Thank you again x

Hi, seems our Mum's circumstances are similar, and my advice would be don't rely on the SW to cover both care and financial organisation, in my case they were totally disconnected and it caused issues. So just to clarify, Mum's emergency respite was as a consequence of needing a place urgently and she was defined as a visitor, charged an amount to stay at the CH as such whilst her housing benefit, Pension Credit, etc, continued to be paid to her.

Once the Best Interests meeting was held and it was agreed she should be moved into full time care, the paperwork was set in motion to transfer from a personal contribution to a state funded position. In hindsight, this is the critical point/date at which the financial status changes but I didn't receive anything in writing at the time, no letter, report, CH contract, nothing, so as Attorney and daughter, I didn't think it appropriate to release tenancy on Mum's house of 40+ years with only a SW's verbal assurance that Mum would be taken care of and the placement was permanent. In fact, I had asked the SW at the end of the BI meeting what to do financially and was advised not to do anything until I received the CH contract and told I would be contacted by the Council's finance department, neither of which happened.

Consequently, it was two weeks of chasing before seeing the SW again who gave me a report of the proceedings (dated the same day as this second meet) but still no CH contract, apparently a problem with the fees(!). With the report in hand, I contacted all the appropriate agencies and utilities, including the Council's finance dept giving the date of the report as the point at which permanent change of address occurred, notes were taken and calculations were made accordingly. Ultimately, we received so many different financial assessments as the period crossed over the end of the tax year, I'm still confused by them but had to let it wash over me.

I received confirmation that the Housing Benefit would be paid up to the 4 weeks after the date of the report but later that was rescinded, and an overpayment charged to align with the earlier BI meeting date. Same with the AA. I still find it ironic that the Council who manage the whole process could not correlate the dates across their systems and notify those impacted by it.

To add to the debate, I received a third DOLS report literally a month ago saying there are questions still over whether Mum's move to the CH should be permanent or not. A communication that was subsequently withdrawn and asked to be deleted.

Expect a painful process and you may be pleasantly surprised. I just wish someone had provided me with a step by step guide to actions required and potential pitfalls on both the logistical and financial process - it could save so much time, energy and emotional outlay.

Good luck!

 

[Nicnoks]

Hi, seems our Mum's circumstances are similar, and my advice would be don't rely on the SW to cover both care and financial organisation, in my case they were totally disconnected and it caused issues. So just to clarify, Mum's emergency respite was as a consequence of needing a place urgently and she was defined as a visitor, charged an amount to stay at the CH as such whilst her housing benefit, Pension Credit, etc, continued to be paid to her.

Once the Best Interests meeting was held and it was agreed she should be moved into full time care, the paperwork was set in motion to transfer from a personal contribution to a state funded position. In hindsight, this is the critical point/date at which the financial status changes but I didn't receive anything in writing at the time, no letter, report, CH contract, nothing, so as Attorney and daughter, I didn't think it appropriate to release tenancy on Mum's house of 40+ years with only a SW's verbal assurance that Mum would be taken care of and the placement was permanent. In fact, I had asked the SW at the end of the BI meeting what to do financially and was advised not to do anything until I received the CH contract and told I would be contacted by the Council's finance department, neither of which happened.

Consequently, it was two weeks of chasing before seeing the SW again who gave me a report of the proceedings (dated the same day as this second meet) but still no CH contract, apparently a problem with the fees(!). With the report in hand, I contacted all the appropriate agencies and utilities, including the Council's finance dept giving the date of the report as the point at which permanent change of address occurred, notes were taken and calculations were made accordingly. Ultimately, we received so many different financial assessments as the period crossed over the end of the tax year, I'm still confused by them but had to let it wash over me.

I received confirmation that the Housing Benefit would be paid up to the 4 weeks after the date of the report but later that was rescinded, and an overpayment charged to align with the earlier BI meeting date. Same with the AA. I still find it ironic that the Council who manage the whole process could not correlate the dates across their systems and notify those impacted by it.

To add to the debate, I received a third DOLS report literally a month ago saying there are questions still over whether Mum's move to the CH should be permanent or not. A communication that was subsequently withdrawn and asked to be deleted.

Expect a painful process and you may be pleasantly surprised. I just wish someone had provided me with a step by step guide to actions required and potential pitfalls on both the logistical and financial process - it could save so much time, energy and emotional outlay.

Good luck!

Thank you for this, I’m meeting the social worker tomorrow so will address this with her then.

 

[Shari12]

Oh Shari, I sympathise with your situation and relate so much to what you are going through.

Firstly, if you have been resident at your mums can they make you sell the house to fund her care? Surely they are making you homeless by doing this?

Secondly, definitely keep a detailed schedule of everything you have funded yourself - they will not accept your word that you have paid out of your own pocket or give you advice on how to reimburse yourself. You will have to provide an audit trail.

Thirdly, Take care of yourself and if there is someone who can help you let them. Big hugs my lovely x

Thank you so much Niknoks... The fact that I have been living with Mum for 2 years and caring for her with no practical or financial support, counts for absolutely nothing with SS. 'They' don't care that this has been my home for 2 years... it's not long enough...If I'd have been here for 5 years or had been just one year older, my home would have been safe.

The Social Worker who was assigned our case in the hospital, didn't have a shred of humanity or concern for my situation... in fact, she was obnoxious.

I was so angry, that I decided if SS were not prepared to help us, they certainly were not going to interfere... hence, I'm doing it all myself. The house is now sold STC and I'm hoping the sale will complete this month, because I'm now really struggling to pay for the care home.

Hopefully, the revenue from the house will last for what's left of Mum's life, otherwise I'll just have to cross that bridge if (or when) I get to it.

 

[whatproblem]

... I now feel ... that I've in some way let her down, because I always promised I would care for her at home...

Don't feel this way, Shari12. Nobody knows what dementia is like until its hits them or their loved one, and nobody can look after a dementia sufferer at home for very long. It's not humanly possible. You have already done as much as you can and it sounds as if you will continue to do so. I hope things get better for you.