Considering becoming a FT carer for elderly parents?

[MintyCedric]

At the beginning of the year my 81yo dad had a serious fall which has left him unable to walk unaided and needing help with washing, dressing, stairs etc. He is unable to do anything around the house/garden and hasn't driven for years. His speech also seems to have been affected although there are no physical signs of neurological damage in that area.

He is also on meds for blood pressure and cholesterol, has some urinary incontinence, atrial fibrillation, angina and quite severe depression which tablets have thus far failed to improve. Oh, he's on Warfarin too.

The consultant has advised us that realistically the best we can hope for is a 50% recovery over 18 months.

Mum is 80. She is running the home, caring for him (he's recently been discharged so they have a carer helping out twice a day at the moment but it's not 100% working for them and is only in place short term), doing all the driving when necessary which she is getting less and less comfortable/confident with.
She is also on BP and cholesterol meds, insulin dependant diabetic and on different blood thinners due to a heart attack 15 months ago. She is intermittently dual incontinent and suffers from anxiety for which she's currently receiving counselling.
She is also extremely hard of hearing, even with aids in.

Mum is a blue badge holder due to her heart and continence issues and we need to apply for one for dad.

We have no other family support and I currently work full time in a job which, by it's nature, is not very flexible at all.

My parents are comfortably off (but not 'rolling in it') and have recently offered to help me clear some debts I accrued through the process of getting divorced and setting up a new home for me and my teenage daughter. If they did this in full it's possible I would be able to manage on Carers Allowance and the additional benefits I'd be entitled to and be there for them f/t.

I'd envisage going in and helping dad get up, washed, dressed & downstairs in the morning, the discussing any help mum needs with household/practical stuff (cooking, shopping, cleaning, gardening, DIY, paperwork etc), and mapping the rest of the day around that. Running them to and from appointments (can be as many as 5 a week depending on the state of their health at the time), taking mum out or sitting with dad so she can have a break a couple of times a week, and trying to engage dad with some activities to support his mental health. Going back late evening if necessary to help Dad to bed (sometimes they can manage, sometimes not - they gave the carer yesterday evening off as he'd been ok the night before and doesn't like going up too early, but when it came to it he felt unable to manage and I had to do a mercy dash in my PJs at 10pm!). I'd basically be on call for them 24/7 although would obviously expect us to work out a basic plan then add in any extra needs as required each week.

Does this seem reasonable/realistic? Tbh it's not a position I ever thought about being in and I'm not 100% sure how doable it is, but feel it's something I seriously need to consider.

I'd be interested to hear from other f/t carers what their days involve and whether you think my situation is 'enough' for me to consider making this move.

I can almost guarantee that if I steal a day for myself, I'll be just settling in when there's a Phone Call. And that's my day gone. And I'm not a full time carer.

Minty I think you've had some really good advice here so just wanted to raise the money issue

I completely understand the "job not career" thing and also I can see how it would seem more sensible for your DPs to have you as carer rather than paying for care.

but have you worked out all the financials to see how much better it would be? I mean, it might be marginal.

was it your parents who were against having a stairlift fitted? Apols if I am confusing you with another poster but a stairlift would really help.

I do know a couple of people who do in-home care for one parent, but only with the support of other carers. Doing full time care for two parents sounds like you need to be someone who would suit seeing it as a job - which you might be of course! Also I would agree that you need to see it as potentially going on for a very long time - medical advances seem to be taking people very far into old age.

I believe carers allowance is approx £65 a week, so if you stopped work, how would you and your child afford to live ? If you stopped working, what would happen if you wanted a break, a holiday or you are sick. I think it would be better for your parents to have cleaner, gardener, carers and you help as a top up. Think of being on an aeroplane, where they say put on your own oxygen mask first, before helping someone else. You need to protect yourself and your child. You can get your pharmacy to deliver medicine free, you just need to order it.

If they have a downstairs toilet/bathroom, can you move a bed downstairs ? Or investigate a stairlift ?

Please don't. The toll on you will be horrendous and it will affect your relationship with your daughter. Buy in as much help as you can. Present it to parents fait accompli. An OT assessment of their home should give you an idea of what you need to do to their home to help enable them to stay longer.

I would encourage them to consider something like ' extra care housing's where they have a manageable flat, communal meals available if wanted, housework and laundry services and a helper for personal care as needed. If they own their home they need to be looking at the McCarthy and Stone type schemes. Or they could have a hot meal delivery daily to deal with main meal and pay a carer for a couple of times a day to deal with all the jobs that need doing both practical and personal. Your dad would have seen an OT in hospital hopefully but if not, definitely ask for a home visit. Age UK have a home from hospital service and are quite good at finding solutions to any issues. They could also attend Age UK day centres if wishing to have more social activities. Hospitals should be able to provide transport for appmts if people cannot get there and there are often local volunteers / charities who will help with stuff like this. Make sure dad is getting Attendance Allowance/ Pip etc. I would long term try and find a more flexible job but also try and get them receiving long term package of care that meets their day to day needs.

I can't understand why any parent would let their DC do this. I think it's unbelievably selfish of them I'm afraid. No doubt they've worked and 'saved all their lives' and as comfortably off, should now be spending that money on services/care to keep them comfortable and safe in their old age. Not allow their DD to sacrifice an indefinite number of years running round after them. MY DM helped out my grandma, didn't even live with her but ended up on antidepressants and BP medication because of the stress.
Without being unkind they've had their lives and their needs do not trump yours. I've been nursing almost 30 years and sadly my parents are now dead but I would never ever have done what you are considering.

Sorry not read all the replies but I did this for my in-laws. They employed me as their carer and this worked better than employing someone outside the family. I won't lie it was really hard but I don't regret it

I think that it would be very generous of you to become their FT carer. However, I think that is also ok, not to be their FT carer & that you should not feel guilty. Your parents are fortunate that you live so close.

cptartapp

"MY DM helped out my grandma, didn't even live with her but ended up on antidepressants and BP medication because of the stress.
Without being unkind they've had their lives and their needs do not trump yours."

thank you for saying this, particularly the last sentence. I'm not considering caring for mum and I still needed to hear this!

My GM died finally aged 89, then only six months later aged 69 when my DM was living her life again she sadly was killed in a car accident. Sometimes, we have to prioritise ourselves.

I get what you are considering and why.

Other PPs have said it'll take a huge emotional toll on you. And your DD who will need a taxi service and you there even if she is more independent than a younger child now.

They could pay you ? Are both getting Higher rate AA? (£89 each/ a week) for the extras you are doing? so you could cut your hours at work?

Carers allowance is very low, it's not usually a good replacement for an actual wage, but it might bring benefits with it? Please don't decide until you've spoken to CAB for benefits advice at the very least.

If neither need residential care right now, then you may not hit deprivation of assets issue unless it takes their home caassessment from full cost to ASD funded, but you can't count on it as it depends on the LA your parents live in. Some are more investigative than others.

*paying for care at home financial assessment
Sorry autocorrect

Just to mention that if you are talking about large money gifts and gift receiver then shortly afterwards claiming benefits like UC you have to declare those as income received. Worth treading very carefully ...

I think it's unbelievably selfish of them I'm afraid

They haven't asked me to do this and aren't aware that I'm even considering it.

Dad has been so difficult this week Mum is talking about looking for a place in a nursing home if it continues long term.
He managed to fall over on a flat surface whilst using his walking frame yesterday, which has set his already limited confidence back. He's barely eating and keeps saying he wishes he wasn't here anymore.

Mum and I are both doing our best but there just doesn't seem to be any consistent improvement - perhaps we are being unrealistic.

Financially, it's not impossible if they, in effect, paid me to be their carer, but for the time being I am paying back their help with my debt as a loan and we will continue to see how things go.

There are so many factors to consider, I just don't know where to start or what to do for the best. It's like trying to do a 10,000 piece jigsaw with no picture to go on.

sorry to hear this news

did your DF come straight out of hospital to the home - no rehab or anything?

That sounds very difficult OP and I'm very sorry to hear how tough it is.
All I can do is tell you what benefits agency and LA might say if they gifted large amounts to you. I can't tell you what will be ok. But you have my utmost empathy and kind thoughts xxx You must be feeling frantic at times. Have you thought about asking adult services dept to do a Care Act assessment? Doesn't matter if they are self funding or not, they're still entitled to that.

He was in a community hospital for 3 weeks but tbh it wasn't great. The physios took him for a 10 yard walk most days and did stair practise once a day for a week before he came home. They cocked up his discharge, and he went 3 days without physio whilst that was being sorted, and also fell from a chair as he'd pressed his call button for help getting to bed but waited so long he attempted to do it himself.

He's on sertraline for depression and the hospital tried doubling the dose but that seems to make him worse. I don't know why they don't try him on a different AD. He had a GP home visit last week and she is organising someone to come from Sage to come and chat to him.

I have been signed off for the last two weeks which was extended today for a further fortnight. Occupational health for me have been in touch and are supportive of me returning to work on a phased return over several weeks which buys us some time.

I don't want to make any knee-jerk decisions and am definitely putting the f/t carer option on the back burner for now, but unless Dad makes a considerable improvement in his mental and physical health over the next 4-6 weeks something is going to have to change radically.

Mum's also talking about selling the house and moving to a bungalow, but my concern is that Dad may not be around for that long and they could go to all the hassle and expense only for him to pass away and she would then probably want to move into sheltered accommodation rather than be on her own.

She had a heart attack 15 months ago and she is not going to be able to keep up with the demands this situation is placing on her long term.

Mum can be quite challenging but thenone upside of all this is that it's ultimately brought us closer.

Every cloud and all that...

OfftoBed Mum's quite hot on the financial stuff so I'll mention that to her in case it becomes an issue longer term.

Perhaps we ought to put the fact that it's a loan in writing.

If parents put it as a loan and go into care home shortly afterwards, it could be considered an asset and funds available. I beg you get some specialist financial advice.

#juatsaying it's never simple.

If you are full time carer, then they are vulnerable if you are ill.

My DF refers to his carer as the "home help". I think he feels it's more acceptable to have a home help than to need a carer.

Without being unkind they've had their lives That is unkind, and saying it isn't doesn't make it any kinder. I agree your point that one person can't live their lives on the back of another person giving up theirs, it is unkind to write off an older person and say ' well, they've had their life, and don't deserve anything now.

I was doing this for my Dm and sharing it with a few siblings and 2 carers coming in and l was exhausted. It's the constantly being available and too serious to not do properly so have to be on alert at all times. Looking at a part time job would be a good thing. Here in lreland carers can work 15 hours a week and still get benefit. That would make it easier to slot back into work later.

One other thing to think about is how you becoming their main carer may lead to more isolation as their social circle reduces. Isolation and loneliness can very easily least to depression.

Have had a brief chat with mum this morning about what could be done to help them longer term.

There a quite a lot of scope but the problem is getting her to make a decision and run with it.

The sheltered accommodation she likes is about 20 - 30 minutes drive from me (not far in miles but roads/traffic not great), and the maintenance fee is frightening for her as if dad was pass away she'd lose a significant proportion of her monthly income.

Bungalow is an option but would probably have to involve equity release or buying through Homewise scheme or similar, and then, assuming dad passes first she would have to go through the upheaval and expense of moving again into some kind of assisted place as she wouldn't want to live on her own.

There is scope to extend/convert the garage to provide a downstairs bedroom and wet room, and I think doing this would be the best option. They'd have to get equity release but the cost would be at least partially offset by the fact they would be adding value to the house by the works done, which would be better financially if mum was left on her own or one or both of them needed to go into a nursing home at a later date.

They would remain 3 minutes from me, with neighbours they know and trust, the same GP surgery that they're used to and the shops down the road.

We'll also look at having the front and back grass replaced with artificial lawn so there just beds which mum enjoys doing as much as she's able to and even dad may be able to help with. My oldest friend is a gardener so we've got someone trusted who can deal with any additional work.

Mum's theoretically in agreement so fingers crossed we can start to move forward.

I think we'll have to consider extending the morning carer at least and will make some enquiries about ad hoc care for appointments and respite for mum.

I'm also going to look at reducing my hours slightly or changing jobs.