Becoming a full time carer

My partner is 72, I am 55. He has struggled with mental health issues for the past 6 years, I gave up my full time job 5 years ago and went part time, because it was just impossible for me to support him, work full time and also care for my parents who are in their mid eighties.
My partners mental health went down hill again last year, eventually resulting in him being admitted to a hospital that dealt with depression and dementia issues in the more older person. He has been there now since September of last year. He has always been convinced that he had a physical illness rather than a mental illness, and it didn’t matter how many different doctors tried to tell him that, after doing scans and all sorts of tests(several times over the years) he was convinced he was right, and all the doctors and tests were wrong.He also literally didn’t leave the house for probably 5 to 6 years either, he would call me on my mobile if I was outside and he wanted me!
He is slowly showing sights of improvement, they took him off all of his medication and then started again. He is currently taking lithium, which was to help with his depression issues. How do I deal with things when they start to talk about discharging him? I am thinking of giving up my part time job so I can look after him, and also have time to see my parents too. I only stack shelves in a local supermarket, but I have to start at 5 in the morning. My mind is a total muddle about what to do.
When they decide to discharge somebody from hospital do they talk to the carer too, to offer them help and support? I don’t want to ask at the hospital in case that gives them ideas, I want him to get as much support as possible while he is there.He obviously has the nurses and care support people there to talk to, as long as other patients, for the past few years he has more or less relied on me only, this is a big issue for when he comes home obviously. He has 2 adult children (not with me) he hasn’t seen one of them, for maybe 3 if not 4 years, the other lives much closer, but when he did start visiting his Dad I found out after that he had managed to get my partner to ‘give’ him £50,000 and lend him another £50,000, all done without me knowing, we live in a one bedroom old cottage, if we had that money we could of got a 2 bedroom bunaglow but that choice has been taken away. I wouldn’t mind so much if his son would help and support his Dad, but he got his hands on the cash and more or less buggered off, not much of a man in my eyes I’m afraid.
Have any of you given up your job to care for a partner/wife/husband, any regrets or words f advice?
We can get by on his pension,but the choice of buying a more suitable property is not possible now.
Thank you for any ideas you can give me

Hi Frances,

welcome to the forum. Just a quick answer from me just now as my caree is waiting of me.

I don’t recommend giving up work all together - this gives you some independence and a purpose outside of the house. Being a stay at home carer can be lonely and your husband will get used to having you home all the time and become even more clingy.

You have a lot to deal with. Do your parents’ receive any support or help from paid carers to take some of the pressure off you?

Is your husband sectioned or a voluntary patient?


Please please do not give up work as it gives you independence, and money if you should lose your partner, as how would you cope financially? You are a long way from State Pension Age. My husband is 82 and I am 60 and I REALLY regret not keeping a career going. I will never be articulate enough to express how soul destroying caring is especially for someone older with mental health issues.

Do you have a local Carers group? They may be able to advice you re discharge procedure but I think
you will have to fight for help. I have no words for your partners son but to me, what he did was illegal and it might be worth at least talking to a solicitor.

I totally understand how hard it is to care and continue working but it it were me, I would fight NOT to have your partner back as things are only going to get worse when he is dependant on you and outside the hospital environment. If he needs you 24/7 to the point where you cannot do a part time job then maybe it is time to consider a home?

I realise my post sounds hard and hopefully there will be others who can offer other angles but having had a husband discharged after hospitalisation back in 2013 with an acute on chronic brain haematoma, I can say the help the NHS offer is very very limited and that was before Covid. You do need to have a no holds barred discussion maybe with his and your GP and see what kind of help you will be offered but please believe me, it may be a fight.

Thank you for your replies, I know deep down that you are right in your replies telling me not to give up my job.
He is in hospital as a voluntary patient, if he hadn’t agreed to this I’m sure they would of sectioned him which i really wouldn’t of wanted for him.
He is still adamant that he has a physical illness rather than mental. The doctors are now doing tests to ensure that there are no physical illnesses to try and reassure him, and to also ensure that there isn’t any other issues.

I am thinking that he will have to go into some sort of care home after he is discharged, he is always afraid that ‘something is about to happen to him’ if I try and get him to go into the garden or a ride around the village in my car. He still feels this way now he is in hospital but he knows there are always doctors and nurses available if something was to happen.He has been saying this for the past few years now, I try and reassure him that nothing bad has happened yet, but can’t change his view on this.

Frances, sadly, I also think that a care home would be the best.
Then there would be a team of people to look after him.

Caring for him would in effect turn your home into a prison for life for you.

When my mum was in a care home, I could pop in and out whenever I wanted, it was only a mile away. In many ways we regained the relationship we had long before she was ill.
Try to find out what is available in your area, all registered homes are on the Care Quality Commission website, that would be a good place to start your research.

I’m sure you are feeling mentally and physically exhausted, try to escape, even if it’s just for a few days, to get away from it all. I’ve just had a short break in Sussex, a lovely converted barn I found on a website called “Last Minute Cottages”. The medical profession are so focussed on the patient that the efforts of the carer are invisible!

So, just to update the situation, I received a phone call yesterday from the hospital.
They are not planning on discharging him yet, he has had a bit of a set back because first of all someone was tested on his ward positive with Covid so for 10 days they were all told they would have to self isolate in their rooms to stay safe, then a few days on he also tested positive. Luckily his symptoms were mainly a chesty cough. Also one of the men on his ward that he would actually interact with was discharged, again, the doctor said that effected his mood.

However, he has been in hospital now being assessed for 6 months. The doctor has told me that she has now asked for aSocial Worker to be assigned to him, and that when he is discharged he will need to go into residential care as he isn’t well enough to come home. To be honest I know that I sadly wouldn’t be able to cope with his care needs, I have had to increase my working hours since he was admitted to hospital as I don’t get any financial help from him since he was admitted as he used to give me a cheque once a month towards bills, food etc, and i think we would soon end up in a similar position to before.The doctor says that he still doesn’t leave the ward, they have an outdoor space they are encouraged to use but he seems content just staying on the ward or in his room reading.It seems so sad as we used to have weekends away, and a couple of holidays abroad each year and now he is happy to just spend his days dong the same thing every day, I hope he is happy in his own way.
So, how does the next step go? What happens once he has a Social worker? And how do they decide which residential care home will suit him best, do we have any say in where he goes? I want him to be fairly local so I can see him

To answer the financial matters, and which home he goes to, it depends on various things.
The best advice can be given by our CUK helpline, so the following are pointers only.
If he can’t manage at home, have the hospital mentioned an NHS Continuing Healthcare Assessment?
If not, ask them to do one. This would give free care but it’s difficult to qualify.
Do you have Power of Attorney?
If not, you need to investigate the DW P Appointee scheme so you can manage his benefits on his behalf. He should still be financially contributing towards your joint home.
Does he have, in his own name, over £46,000 in savings?
Receive Attendance Allowance?

Have you been claiming exemption from Council Tax dude to his severe mental impairment?
This CAN be backdated!
As you are now living alone, claim single persons discount.

Thank you for your reply!
I have spoken to the council in reference to getting the discount on council tax but have not got on too well so far, have spoken to them several times to no avail. They say that because he is still registered at the home address I can’t claim the one person discount. When I spoke to them last which was a couple of weeks ago the girl sounded almost as though she didn’t believe me when I explained that he had been in the hospital since last September, she said ‘nobody lives in a hospital’ Once things move on a bit more and he is moved to a residential home then I will be able to give them that info as his address and then I will be able to claim the one person discount.

We are not married, and I bought the house myself, his name was never on the mortgage, all his life he had financial struggles, including being made bankrupt., I had a big deposit from the sale of my previous house on.
Financially he became much more secure after receiving £150,000 from his parents estate after they died. Because by then he was already struggling with his mental health he never got to do anything with that security, he ‘gave’ his son (from previous marriage) a ‘gift’ of £50,000, along with a loan of £50,000 to be repaid back within a year. That was about 5 years ago, he has only received £10,000 of it back.We also have a joint account which has £28,000 in it, and he has also probably about £15,000 in his own private account. I am more than happy that all the money in the joint account goes back to him for his care, as that money was from what he was left by his parents, so I would like that to go back to him to better his standard of life.

When my late husband was in a nursing home I had to ask the manager if they would type a letter as proof he was living at the nursing home. I then had the 25% discount. Didn’t take long.
Let’s hope the girl who said no one lives in a hospital for that long is never in that position with family herself. I was. Very unprofessional.

Frances, only half the money in the joint account counts as his.
Whatever money he has that goes on his care won’t reallybetter his standard of care, just reduce the amount the council contributes I’m afraid.

As your husband has a severe mental impairment, it is possible that he has been EXEMPT from council tax, right back from when this started. Easy to claim, the council send you a form for details of his GP, and ask the GP for information. As you are not married and his carer, you too might be exempt.

Talk to the Carers UK helpline for further advice.

Thank. You for that info about the possibility of him being except from paying council tax, I will talk again to the local council and ask them to send me some info, they have not been very helpful so now I have this information that may help things In that direction at least.

People that have never been in this sort of situation really have no idea on how hard it is, when he first went into hospital I felt as though I was grieving for him,it took me a couple of months to come to terms with the situation. Since being told by his doctor the other day that he is not well enough to come home, although deep down I already knew that, once again I feel as though I am grieving once more.Its my birthday today, and I have treated myself to a weekend away, it’s been 6-7-8 years since I have been able to this, and although I am glad that I have got away, I still bloody miss him, and the times we had together, it’s all just so sad

Well done for going away, I often recommend this to people recently bereaved, just to get away from home and everything in it, to concentrate on getting back on “an even keel” again. Every so often, especially in the cheaper months, I take my sewing machines and a pile of fabric to a little self catering cottage somewhere. Then I can eat, sleep, and sew whenever I want, mainly early morning and evenings. During the day I visit towns with local fabric shops, and go for walks if the weather is fine. We NEED to escape at times, it’s now called “self care”.
Even when someone is in residential care, there are all sorts of odd jobs that come our way!

You have done the right thing. I couldn’t go away but the 1st time I did a day trip with my friend made me realise that it was ok. Hubby was being cared for, and I had a different focus. Felt guilty getting on the coach but it eased. To get out of the West Midlands was so refreshing x

What a ridiculous response - some people can be many months in hospital. That is unacceptable.

The social worker should be speaking to you too, they will want to know about financial arrangements and paying for care.

I don’t know if you count as legal next of kin for decision making, I hope you do, if not it could be his blood relatives, eg sons or siblings.

The SW will want to know his financial set up.
A joint account is that, joint, you have claim to a percentage of that money.

It is very important that you tell the social worker about the money situation - he gifted and loaned substantial amounts to his son. They will be asking to see bank statements to see his balance and if any substantial amounts have been moved to avoid them being spent on care.

Law, the Gvt, via the social worker could see this as him defrauding himself of money for his care later in his life and ask the son to repay the money towards his care.

Start with citizens advice and if need be a consultation with a solicitor, pick a good firm, they will give you the up to date legal situation advice on where you stand financially and I reckon it should be just one appointment giving you the information you need to know.

Phone a few solicitors, ask how much for a one-off consultation to establish your legal and financial position regarding your long term partner going into care.
Then decide which firm to use
Phone and arrange an appointment.
Make two lists of your situation and questions - one each.

This is to start you off, add to it as required:-

We are not married
I own the house in name and mortgage
We have been together x years
He has two sons
He has x siblings
Who is his legal next of kin?
We have lived together in this house since purchase x years
I gave up full time work to part time work due to his needs x years ago
He has given me x per month towards bills and food
Does he/the Gvt have any claim on my earnings/house for his care?
Do I have any claim on his money?

As Bowlingbun’s signature states: Information is Power!

Find out

Good luck.

How long he has or has not been in hospital s utterly irrelevant.
He has severe mental impairment and is therefore exempt.
The council should give you an application form, once complete they send it to his GP.
Google Council Tax Exemptions and look at the .gov pages.
Print off two copies of the relevant page, one for you, one for the council.
I would then make a complaint to the CEO about staff urgently needing further training!!!
The exemption can be backdated,

Thank you for your info.
To be totally honest, I’m not sure that I want to be his next of kin when it comes to the legal sides of things. From what I can make out some care homes want the next of kin to sign paperwork to say they are a guarantor for their care payments. I am thinking that his son needs to take some sort of responsibility for his Dad, he was happy enough to take a big chunk of his inheritance, so I feel as though he should be the one to sign guarantor papers for his Dad who handed over such a big sum of money to him. My partner also has a daughter who he hasn’t seen for 3-4 years probably, I feel it’s time for them to step up in looking after their Dad.
As far as I am aware from the conversations n with his doctor, although they have now requested a Social Worker for him they haven’t had one assigned to him yet, they did say it takes a few weeks as there is such a backlog for these situations at the moment

You need to find out the legal situation for next of kin and cohabiting finances.

I will message you.

If legally OK giving the whole issue to the son sounds a brilliant idea. In fact with nursing home fees around £1,000+ per week, he is going to be in an “interesting” situation. Have you thought about sending son all partners possessions?

Give deference to family and refer them to blood relatives for next of kin signatures and decisions.

Only pass on financial information eg bank and pension/DWP benefit payments directly to social worker for them to deal with it all. Don’t pass it onto any relatives. The SW will want to see you and go through all his finances and bank details.

Keep a copy of the DWP awards and pension letter and tax so you have contact details if you need them.

Get legal advice about the joint account.