Mother coming to live with me

[Janey russ]

My mother has taken a turn for the worse and is in hospital after another series of delusions. We have reached the point where I now feel she cannot go home with home support. As my brother and I both live over 250 miles away and there is no other back up where she lives , I have decided to move mum in with me and stop work. Any advice on what benefits I can claim for. My mother is independent financially and just gets pension and attendance allowance. Also my job has a company car which I will lose. Anyone know anything about mobility and getting a car.
Very emotional at the moment ...but am trying to park my emotions and deal with the practical

 

[Nebiroth]

Attendance allowance has no Mobility component.

The main beenfit for you to claim would be Carer Allowance. Your mum already receives what is called the "qualifying benefit" that classes her as "having a severe disability" and is th emain hurdle to Carer Allowance, since to claim CA the person you care for must get one of these "qualifying benefits".

However, be warned that Carer Allowance is a pittance - it is £61.35 a week. The only means test is income from employment - you can't earn more than £100 per week (after certain allowance are made) from working but other income (such as interes ton savings, dividends from shares, etc) is ignored, as are savings. It is also taxable income. Carers as carers get little else and there is certainly no Mobility allowance or car scheme for carers.

Depending on circumstances it might be possible to get help with council tax, housing costs such as rents, etc.

But AA and CA are the main help available and they are hardly generous.

Also be aware that your receiving CA may reduce your mother's benefits - it will not change her state pension, private pensions or AA but could affect others (for example, disability premiums attached to Pension Credit and so on)

Being honest I would think long and hard about this. Your mother may cope very badly with moving to a strange place. You also say she is hospitalised because of delusions. Some people have good outcomes and the drugs used arte effective...but not always. I would be personally inclined to wait until her prospective discharge and to see what a "best interests" meeting would suggest (you can be included in that). Is your mother hospitalised under section? If so what section?

If she is under section 3 and is discharged she would be entitled to 117 funding, in other words the NHS would entirely fund it including placmen tin a care or residential home.

My worry is that you will burn your bridges by leaving your job, your mother comes to live with you, then you find you cannot cope either right away or if she gets worse.

 

[winda]

I agree with Nebiroth.
Giving up your job is a massive decision to make.

It may be better to move your mum in with you but continue working with the help of carers, daycare, respite etc.
I think you need to make sure that you have your own life too, as much as is possible. Caring for someone with dementia is a very lonely task for anyone and eventually many carers can become quite isolated. Continuing with work, apart from the financial benefits will mean that you will still have connections with work colleagues etc.

I am sure there will be such suggestions at the best interest meeting. And I would wait until everything is in place before your mum is discharged.

I wish you luck whatever you decide to do.

 

[dottyd]

Attendance allowance has no Mobility component.

The main beenfit for you to claim would be Carer Allowance. Your mum already receives what is called the "qualifying benefit" that classes her as "having a severe disability" and is th emain hurdle to Carer Allowance, since to claim CA the person you care for must get one of these "qualifying benefits".

However, be warned that Carer Allowance is a pittance - it is £61.35 a week. The only means test is income from employment - you can't earn more than £100 per week (after certain allowance are made) from working but other income (such as interes ton savings, dividends from shares, etc) is ignored, as are savings. It is also taxable income. Carers as carers get little else and there is certainly no Mobility allowance or car scheme for carers.

Depending on circumstances it might be possible to get help with council tax, housing costs such as rents, etc.

But AA and CA are the main help available and they are hardly generous.

Also be aware that your receiving CA may reduce your mother's benefits - it will not change her state pension, private pensions or AA but could affect others (for example, disability premiums attached to Pension Credit and so on)

Being honest I would think long and hard about this. Your mother may cope very badly with moving to a strange place. You also say she is hospitalised because of delusions. Some people have good outcomes and the drugs used arte effective...but not always. I would be personally inclined to wait until her prospective discharge and to see what a "best interests" meeting would suggest (you can be included in that). Is your mother hospitalised under section? If so what section?

If she is under section 3 and is discharged she would be entitled to 117 funding, in other words the NHS would entirely fund it including placmen tin a care or residential home.

My worry is that you will burn your bridges by leaving your job, your mother comes to live with you, then you find you cannot cope either right away or if she gets worse.

I totally agree with nebiroth.

Also mobility allowance and or cars does not kick in if you are older or the person claiming is older than 65.

It's very harsh but that's what happens I'm afraid.
The best help with mobility is a dial a ride service and when cuts bite , these are some of the first to go, as happened in my town.

 

[uselessdaughter]

I think you need to check the age limit for mobility help. A friend of mine has hàD to give up work because of Parkinson's and has been Offered the possibility of a mobility car. She is only 58.

 

[2197alexandra]

Yep definatley check out all the pros and cons.

I don't work to look after my father and all I get a week is £61.35 carers allowance. And I also have a one off payment once a year from social services for me to buy myself something to make my life as a carer a bit nicer last year I got £350 and took my children and dad away for a long weekend with it. No help with any thing else.

My father receives his normal pension plus a small private pension and his AA. He is 70 and is entitled to no other benefits apart from a council tax exemption under section U which is severe mental impairment.

We have 4 care visit per day and 2 day care placements through the social services which my father makes a £51.50 contribution towards each week. The total cost before his percentage is took off is £254.00 per week.
He owns his own house outright but I think because we had a social services assessment after a hospital admittance last year and a re enablement package that didn't work out, we got funding from the social.

All in all for us it works out that dad is no worser off financially from having 4 care visits a day because we never had to claim attendance allowance before and the cost of his care and the amount from his AA cancel each other out with a little left over which dad uses for his taxi costs to transport him to and from day care.

What I can definately say is it is NOT easy coping with a small carers allowance esp if you are going to lose your company car too. My fuel bill alone is £50 a week just driving to and from dads daily, I get no help with that so if you take that out of my carers allowance I really end up with just over a tenner a week for 70+ hours work/ caring.

 

[Nebiroth]

I think you need to check the age limit for mobility help. A friend of mine has hàD to give up work because of Parkinson's and has been Offered the possibility of a mobility car. She is only 58.

58 is not 65

At age 58 she would still qualify for DLA/PIP which does have a Mobility component.

Once you're 65 or over, you can't get DLA (or PIP, it's replacement); you instead get Attendance Allowance.

AA has only two rates and has no mobility component. Indeed, anything you put in the claim form about mobility outside the home is ignored as irrelevent to the claim.

The only exception to this is persons who are awarded lifetime claims for DLA younger than 65, it then continues until they are 75.

Although a car under the Motability scheme can be registered under a carer's name as the norminated driver, the elligibility is entirely based on the disabled person and the car can only be used for their personal needs; not the carer's (or anyone else's)

 

[Neph]

You need to think long and hard about this and listen to what everyone is saying to you. I personally would look at a care home near to where I lived, where I could monitor how she is being looked after, it may be better for both of you. Looking after a parent is a very hard and very lonely business. My mum actually thrived when she first went into the care home, loved the attention and the other residents and her health actually improved for a while.

 

[Boldredrosie]

I became my parents' carer by default because we all lived together as they begin their awful decline in health. Since my father's death in 2012 my mother's dementia has accelerated and I would given almost anything to 'unbuy' the house with them.

If I hadn't been living with my mother at the time of my father's death I'm pretty sure she would have been institutionalised as she cannot look after herself and her ability to to perform acts of daily living is steadily diminishing. I HATE being her carer; I am not suited to it and as you'll see from many of the posts on this site people who really need care have a tendency to refuse when it's provided by a non-family member, heaping all responsibility on the family.

Also, do you have children? My son is 15 and is about to do his GCSEs -- the stress of living with a mother who works full time but has to care for a confused, anxious old woman and so is very stressed herself is taking its toll on him. To say nothing of the fact his grandmother alternatively thrusts money at him, then accuses him of stealing her cash and drinking her gin.

If you don't have to have her live with you my advice would be don't. You're life will never be the same again. Your responsibility as a child, surely, is to ensure your parent is safe and secure, not to sacrifice your job.

 

[Merrymaid]

I have my mother living with me. She has AD and I gave up my job to become her carer. It was something I thought long and hard about but came to the conclusion that this is what suited us best.

She is currently in late middle stage dementia and I can honestly say we have our ups and downs. In my opinion she is much calmer with me home all the time, obviously she will not improve and her condition can ultimately only get worse from here on in. She is totally dependent on me for daily needs & is affected by sundowning every evening, with nightmares and wandering at night, plus a few other behaviours we are familiar with on TP.

At this moment in time I am convinced that my choice to be here with her is the right one. I am however looking after my own well being and have secured two days a week when Mum goes to day care, leaving me some free time. I have also joined a local choir who are happy for me to bring Mum along in her wheelchair. She appears to enjoy my singing efforts.

I am aware that changes along the line may well mean I have to re-assess our arrangement as Mum's needs become even more challenging. I know this is not right for everyone but each of our situations is different and I felt it important that both sides need to be aired.

Lastly I also think it needs to be said, I am no angel, I often feel frustrated with some of Mum's behaviour but as yet not to the point I feel I can no longer cope. I do however constantly research the disease to try to better understand it and know what is possibly down the line for us both.

 

[Nebiroth]

My main concern was that the original pposter noted that her mother had been hospitalised with delusions.

I know from experience that delusions can be very difficult to successfuly medicate and it doe smake me wonder about how sustainable it would be for someone with delusions severe enough to warrant hospitalisation to be in an informal care arrangement.

Particularly as delusions can often lead to agressive or violent behavior as the person suffering from them has (understandable) responses to the delusions. Delusions can be harmless but would be unlikely in that case to warrant hospitalisation.

My dad was eventually sectioned becaus ehis delisions were of the obssessional paranoid type and it was a constant nightmare, his whole life rotated about what "they" were up to and he made sure our entire lives were totally dominated by it as well. It almost drove my mum to a nervous breakdown.

Whilsthe was in the assessment ward I told the hospital that I was utterly adamant that he would NOT be returning home to live with us - I would have locked the doors!

It sounds horrible but weeks and months of having someone rant constantly about paranoid fantasies can grind anyone down.

 

[cricketmad]

I have my mother living with me. She has AD and I gave up my job to become her carer. It was something I thought long and hard about but came to the conclusion that this is what suited us best.

She is currently in late middle stage dementia and I can honestly say we have our ups and downs. In my opinion she is much calmer with me home all the time, obviously she will not improve and her condition can ultimately only get worse from here on in. She is totally dependent on me for daily needs & is affected by sundowning every evening, with nightmares and wandering at night, plus a few other behaviours we are familiar with on TP.

At this moment in time I am convinced that my choice to be here with her is the right one. I am however looking after my own well being and have secured two days a week when Mum goes to day care, leaving me some free time. I have also joined a local choir who are happy for me to bring Mum along in her wheelchair. She appears to enjoy my singing efforts.

I am aware that changes along the line may well mean I have to re-assess our arrangement as Mum's needs become even more challenging. I know this is not right for everyone but each of our situations is different and I felt it important that both sides need to be aired.

Lastly I also think it needs to be said, I am no angel, I often feel frustrated with some of Mum's behaviour but as yet not to the point I feel I can no longer cope. I do however constantly research the disease to try to better understand it and know what is possibly down the line for us both.

I moved back home from Hampshire to look after my mum about three years ago because she was getting very forgetful. There was no diagnosis of dementia until February this year when she fell and broke her hip and was diagnosed at the RUH Bath.

I was teaching in Hampshire and found that the journey back and forwards every weekend was affecting my health and also my work. So I made the decision to come back home. I realise that this is not something everyone can do but I agree with Merrymaid that for both our state of minds this was the right decision.

Mum has got worse since the fall and this forum has been a great help to help me understand more about the disease. We have good days and also some days which are hard work. But I also have found that Mum is calmer now I am home all the time. I am lucky that Mum has a good pension from my late father but I do worry about what will happen in the future.

I have been lucky to get a grant from my council which is helping me to have some life of my own (I have just obtained a dog which has also helped Mum) and to pay for carers to come and sit with mum. I am also looking into some day care for her to get her to meet other people.

Jane

 

[Kevinl]

Tons of good advise already been given but as you're giving up work to look after her and she'll be living in your house wouldn't it be reasonable to expect her to contribute? This is something that would need to be fair and you would be have to agree it with your brother.
If you do what I did and for 3-4 years when my Mum lived with me I never took a penny from her so however much accumulated in her bank account during this time was split 4 ways (in my case) when she died. I didn't need the money but when I never even got so much as a thank you off them I did wonder why I did it. I don't know how much it cost me and my wife but when I realised they couldn't even be bother to say I wished I had. I'm not bitter I could afford it just disappointed.
K

 

[Janey russ]

Tons of good advise already been given but as you're giving up work to look after her and she'll be living in your house wouldn't it be reasonable to expect her to contribute? This is something that would need to be fair and you would be have to agree it with your brother.
If you do what I did and for 3-4 years when my Mum lived with me I never took a penny from her so however much accumulated in her bank account during this time was split 4 ways (in my case) when she died. I didn't need the money but when I never even got so much as a thank you off them I did wonder why I did it. I don't know how much it cost me and my wife but when I realised they couldn't even be bother to say I wished I had. I'm not bitter I could afford it just disappointed.
K

Thank you and yes my brother and I have already agreed that my mother will contribute, I cannot afford to lose my salary, but I would rather use my mothers money for me to care for her rather than give it to a care home at this stage. Eventually as this progresses it may be necessary but I feel I can only consider a care home when the disease has progressed so far she doesn't know she is there.

 

[Janey russ]

My main concern was that the original pposter noted that her mother had been hospitalised with delusions.

I know from experience that delusions can be very difficult to successfuly medicate and it doe smake me wonder about how sustainable it would be for someone with delusions severe enough to warrant hospitalisation to be in an informal care arrangement.

Particularly as delusions can often lead to agressive or violent behavior as the person suffering from them has (understandable) responses to the delusions. Delusions can be harmless but would be unlikely in that case to warrant hospitalisation.

My dad was eventually sectioned becaus ehis delisions were of the obssessional paranoid type and it was a constant nightmare, his whole life rotated about what "they" were up to and he made sure our entire lives were totally dominated by it as well. It almost drove my mum to a nervous breakdown.

Whilsthe was in the assessment ward I told the hospital that I was utterly adamant that he would NOT be returning home to live with us - I would have locked the doors!

It sounds horrible but weeks and months of having someone rant constantly about paranoid fantasies can grind anyone down.

My mother was hospitalised as she lives alone. The carer was concerned about her state one evening called the doctor who sent for an ambulance as she was alone. We suspected a UTI but not the case. They have kept her in hospital as nowhere to release her and still waiting for test results. With the bank holiday weekend everything is being held up. I know it will not be a easy journey ahead but now feel it is the only option as we live so far apart. I cannot consider a CH just yet as she still has moments of clarity and it will destroy her emotionally. I am sure it will be necessary as things progress but not yet.

 

[listenfirst]

Stop! Same situation as you for us 6 wks ago....now after 24/7 care from me mum is better...but not quite well enough to go home. I have left myself as main carer, feel exhausted, she's getting stronger, whilst siblings show no interest or help. Please think about yourself a bit here.

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