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Considering becoming a FT carer for elderly parents?

(50 Posts)
MintyCedric Mon 11-Mar-19 08:50:51

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.

Disfordarkchocolate Mon 11-Mar-19 08:58:53

To be honest it's not something I could ever do. I wouldn't be able to manage the personal care and the lack of time to myself (I'm very introverted). I'd also worry about the impact on my daughter as I've found teens need more support than you imagine. Finally, financially I need to save more for my retirement not limit my income.

Enough about me though, you sound like a very caring daughter but you need to think about the above too. All of you need to think about all of the options available from more carers, live in carers and supported living arrangements.

WhiteNancy Mon 11-Mar-19 09:03:52

My mil does it - it has had a huge impact on her life and those around her. She found herself doing a 24 hour, 365 days a year job, always on call, gradually doing more and more. It's not like a 'normal' job with a job description, planned hours, holidays, sick cover etc. so you'd have to be assertive in order to ensure these took place.

I think it's doable but you'd really need to think it through and assert yourself. Not easy with emotions, duty, guilt floating around.

hatgirl Mon 11-Mar-19 09:09:40

What benefits aside from careers allowance (which is a pittance) do you think you would be entitled to if you voluntarily give up your job?

What are your plans in some years time when your care is no longer required, you could easily be out of the workforce for a decade caring for elderly parents in their 80s - it's nit that old these days?

You need to check that them clearing your debts wouldn't be seen as deprivation of capital if either of them required a care home in the future.

Finally, as an adult social care social worker I can honestly say I have never met a carer who isn't extremely stressed out by the role and emotionally drained. I would never recommend anyone completely giving up a full time job to care for elderly parents, particularly if you are the sole earner in your household.

MintyCedric Mon 11-Mar-19 09:22:00

Thank you. Those replies are nor what I wanted to hear but possibly what I need to hear.

My job is just that, a job, not a career. I'm not in a position to save anything significant towards my retirement anyway and in fact caring for my parents myself, rather than them having to pay someone else is potentially going to preserve my inheritance (aka pension plan!) further down the road, although I realise there is no guarantee of that depending on their future care needs.

I feel like I'm short changing everyone at the moment...I'm struggling with work because I'm constantly on edge waiting for the next phone call from/about my parents; worried that I'm not spending enough time with DD because I'm either at work or having to keep up with them (and she has her dad and her own social life/commitments to fit it; I can't be there for my parents as much as I'd like/they need due to my work commitments and my own health is suffering as a result of the stress.

It's just a bit (lot!) shit at the moment, but I do need to be wary of seeing this as a 'quick fix' without taking on board the implications.

The financial side of things and the potential boundaries issues are the biggest concerns...lots more to think about.

PurpleWithRed Mon 11-Mar-19 09:30:55

Take a week off work and give it a go - see how you feel after 7 days, and imagine into the future as their needs progress. Could you do it?

Also, one of your parents will die before the other (sorry, but let's get realistic). When that happens would the other need you in the same way or would your 'job' disappear? And what if the remaining parent would be better in full time residential care? Would that leave you homeless?

cherryblossomgin Mon 11-Mar-19 09:32:07

I would get them a carer, you will run yourself into the ground. I've seen family members who thought they could do it but it's emotionally draining. Also there is the personal care aspect. Is your father comfortable with you assisting him? You could do the shopping and gardening, my mum does that for my grandparents. They could have a visit multiple times a day from a carer to help. I would get them assessed and let social work decide what they need.

hatgirl Mon 11-Mar-19 09:38:51

It sounds mean but you need to stop filling the gaps they are creating by sending carers away. I know it's hard, and I suspect if they have cleared debts you are now feeling a sense of obligation but you do not want to end up resenting them or their company in the last years of their lives. It's not a nice situation for anyone and lots of relatives end up feeling immensely guilty that their first emotion when an elderly relative they have been caring for passes away is relief.

Help out where you can, and as much as you can emotionally afford, but I can tell you that I come across lots of elderly people with no family available to help and they still manage. If you appear always available to pick up the slack then everyone will expect you to do so.

Hospital transport is available for hospital appointments, taxis etc for shorter journeys to GPs. If his evening carers are coming too early for him ask if they could be rearranged to come later. Your mum would probably be eligible for respite care in her own right, ask for a carers assessment from social services to see what they may be able to offer.

Good luck!

MintyCedric Mon 11-Mar-19 09:42:54

I wouldn't be moving in with them...I live 3 minutes round the corner.

I can't just take a week off work either, which is part of the problem. My current job is not flexible at all. If I look for a part time job so I can help them out more I won't earn enough to keep us going and with Universal Credit coming into play won't get enough in the way of tax credits to make up the difference (but will look into that option again).

The other option is to try for a more flexible full time job, but God knows how long that will take.

Feel really trapped at the moment...does anyone know the winning numbers for tomorrow's Euro Millions?!

TheABC Mon 11-Mar-19 09:45:27

I would worry about the isolation for all of you. It's hard to keep up with friendships or arrange a holiday if you are on call 24/7. Plus, as their bodies deteriorate, your parents will come to rely on you more and more: not just physically, but emotionally too. Unlike caring for a child, there will be no end date in sight.

In addition, you will have money worries. Living on benefits is stressful in its own right and a decade or more off work will not make you very employable in the future.

I would explore every option, including a move closer to you or to better accomodation. My grandfather is 89 and voluntarily moved to a sheltered flat five years ago when his house got too much for him. It's been brilliant as he can walk into town without a car, arrange for the doctor to visit (there are regular slots as the GP surgery find it more efficient to go there) and he has a social life on his doorstep. He recently had a bad fall and he has been housebound during recovery, so having his friends around to moan at is very beneficial.

Another option may be better technology to help them, more carers or cleaners or you changing jobs to allow more flexibility.

MintyCedric Mon 11-Mar-19 10:03:13

I'd been thinking about this and doing some number crunching before the financial side of things even came up. They have no idea it's something I'm seriously considering.

They are actually getting on better with the carer than I envisaged. He's a lovely guy and is being really flexible about when he comes and has a chat with mum as well as seeing to dad so we're very lucky.

Hospital transport...we had to do this a few weeks ago as he needed an appointment at hospital whilst he was in the community rehab unit. A 30 minute appointment ended up taking 4.5 hours because of the limitations involved, it was an absolute nightmare. Mum really needed to be with him so she had to get a taxi and then I had to go there straight from work and wish with them for 90 minutes until transport came to take him back and I could take her home. For various reasons re both parents, public transport is not easy for them either.

Personal care...I have had to help Dad to some degree since this happened although not on a regular basis. We are very close and he's pretty unfazed by it. It's more getting to and from the bathroom and in a comfortable position so he can wash/shave himself, help putting on pants/trousers (so he manages to make himself decent but things often need hoiking up or adjusting), he can't manage the stairs alone. When its really personal stuff I give him as much space/independence as possible whilst ensuring his safety ie last night, got him upstairs and sat on bed, took his brace off, gave him his PJs then sat at the top of the stairs just outside his bedroom whilst he got changed so I was on hand if needed. Also taking over the household tasks he can no longer do so mum isn't put under any more pressure than necessary.

At the moment I'm working full-time and trying to cram in running my own home, being there for DD and supporting them around the edges. My social/personal life comprises my best mate coming round for lasagne once a fortnight and crashing out in front of Netflix when I get the odd hour of downtime.

I can't imagine that taking 40 hours a week when I can do none of these things out of the equation is going to make life more stressful tbh, although appreciate it will be a different kind of stress.

Maybe best to do the research and keep the idea in reserve for a bit longer. I think the carers are in place for another couple of months so could review the situation then and take it from there.

MintyCedric Mon 11-Mar-19 10:08:31

TheABC mum is an avid Silver Surfer a d has her eye on the local property market on a daily basis!

There is a lovely retirement complex about 6 miles away and they've looked at a couple of places there but dad had an accident around the time they saw the first one and they were unable to proceed, and the one they looked at about 6 months ago needed a hell of a lot of work (think built late 80s and untouched since) and had a surprising number of dubious outdoor steps.

Mum is extremely picky and we have a very high local population of elderly people so trying to find something to suit her exacting requirements their needs is ahem, challenging!

limberlost Mon 11-Mar-19 10:28:46

Also consider your pension. Will you get NI contributions paid to claim a full state pension? Will leaving employment impact on a workplace pension?

MintyCedric Mon 11-Mar-19 13:06:55

I have no pension...have never been able to.afgors to pay into one.

justasking111 Mon 11-Mar-19 13:12:28

They are way past a retirement complex, it is a nursing home I am afraid. One person a woman at that cannot physically cope with the care needed for two people as things progress. My friend did her back in trying to get her MIL out of bed. Her DH who had been adamant until then that his mum would stay with them, baulked when he knew he would have to do the lifting, carrying to the bathroom.

MintyCedric Mon 11-Mar-19 22:32:47

just Mum is miles away from needing a nursing home! Dad, admittedly maybe not so much, but having seen the impact of 6 weeks in hospital/rehab centre on his mental health and overall well-being, it would be a last resort . Thankfully there are plenty of options for us to consider first, although I now think resorting to giving up work to look after them full-time at this time may be jumping the gun a bit.

Part of what I'm struggling with it that they could use considerably more low level help than they are currently managing but the nature of their needs is so intermittent and ad hoc it's impossible to easily work around it, or pay someone else to do it.

He's seen the consultant today, and needs to see two further consultants, one which can be near home, the other is about a 45 mile round trip away for tests, which I will have to facilitate somehow. Can only hope that the latter will be covered by their medical insurance privately which will mean they are more likely to be able to fit in with my limited availability.

MintyCedric Mon 11-Mar-19 22:54:07

you changing jobs to allow more flexibility.

I think this is probably going to be the way things need to go.

My last job was amazing. Admittedly I worked part time (25 hours over 4 days), but I could literally go in of a morning and say 'I need to do such and such tomorrow - can I leave early and make the time up?' and it was just a case of writing it on the office whiteboard so everyone knew where I was and that was that.

Unfortunately my marriage broke down and I had to move jobs in order to get a mortgage on my own.

In my current role I have to apply in writing to the senior manager with a minimum of 7 days notice. They have been pretty good in this and other emergency situations tbf, but given how ongoing the situation is likely to be I just can't see it working if I'm constantly having to ask for time off...quite apart from the impact on the business, it makes me really anxious to keep having to ask.

DementedO1 Mon 11-Mar-19 22:57:06

I've done this for parents in law, I would never encourage anyone to do it. Admittedly they moved in with us but nevertheless, as much as we love them, it was the single worst decision we could have made for our family.

It dictates every single thing we do, and very much restricts what we can do. My mental health is ruined, our finances are destroyed. Everything will be your responsibility, therefore all problems will be yours to solve. It's isolating, and I cannot see any plus sides to it. We thought we were doing the right thing, but as pp said, what you're signing up for now will look very different in a few months, and you need to adapt constantly. My kids aren't guaranteed to get to any of their clubs, because nothing is predictable. They understand, but that doesn't make it fair.

At the time you think well they'd do anything for us, so now it's our turn to take care of them, but as one of our local carers put it, "your giving up the best bits your life to prolong the worst bits of theirs".

As an aside, carers allowance, although shite, does pay NI contributions.

I don't really know my way around the site but message me if you like, I'm sure I'll get a notification or something. X

Coronapop Mon 11-Mar-19 23:55:06

I think you should prioritise your daughter. Caring for elderly parents would inevitably mean prioritising them and it could go on for many years, depriving you of holidays or being able to pursue your own interests.

MintyCedric Tue 12-Mar-19 00:06:31

Coronapop this has been huge issue over the last couple months.

We're really close and although she's a very capable and independent 14yo, she still needs me and I know she has really felt it that I've been having to spend so much time evenings/weekends supporting mum and dad.

The pressure has eased off a little now that he's home and will hopefully continue to do so.

Just wish I didn't have to feel like I spend every waking moment clock-watching and trying to slot in the next thing somewhere.

BackforGood Tue 12-Mar-19 00:13:28

I'm of an age where I've known a few people wrestle with this decision.

One gave up her job to care for her Mum - 2 months in her Mum passed away and she was stuck, in her late 50s, really struggling to get back into the workforce

Another gave up work to care for his parents. He did get a year with one and about 2 and a 1/2 with the other, but again, same scenario - then unable to get back into the workforce at his age.

Another (whose Mum had lived with her for a number of years, some time before she needed much care), found a place for her Mum in a supported living home, and said it was the best things she ever did. She said she now actually spent real quality time with her Mum, and had the energy and strength to enjoy being with her Mum, taking her out and about when she could, and just chatting with her on other days, and she said it was 100% the right decision for them. She said they no longer had to have somebody at home with her at all times (thinking about when you get invited to a wedding, or a birthday party, or if you want to go out with friends, let alone to work, even before you think about holidays).

Most recently friends I've been supporting (they had no children themselves) took a long, long time to accept help, but then eventually got carers coming in 4 times a day, and it wasn't cheap, but it gave them back quality of life. One of the carers would come to hospital appts with them in a taxi, and most of them would do things like odd bits of shopping for them, etc. Their health and quality of life and general happiness improved so much when they had the right support in place.

Personally, I wouldn't give up my job - I'd help them to get the right support in place, and be there for them for the 'emergency times' rather than the day by day x 52 weeks a year commitments

MumUnderTheMoon Tue 12-Mar-19 00:19:28

Do you own your own home? If you do there will be some benefits you don't qualify for. Eg benefits will pay rent but not a mortgage. being a full time carer is exhausting and because social and support services are stretched external help will probably be greatly reduced or even stopped. That could mean no weekends away, no holidays etc.

Itwouldtakemuchmorethanthis Tue 12-Mar-19 00:24:54

A part time job would be more workable. Best of both worlds.

HazardGhost Tue 12-Mar-19 00:51:55

I would leave the option on the table and see how it works out with the hired carer, also have a look into p/t hrs with carers allowance.

I'm in my early 30s and gave up work to care for my partner two years ago and have no regrets. Its been the hardest experience in the world but hand on heart I wouldn't have missed a moment of it. When you do something out of love it's amazing how you cope.

I do worry about how I would return to work in the future. The reality is I'm currently spending my time doing my best, I'm where I need to be and I can't ask any more of myself then that.

You sound like a lovely daughter and you also sound very stretched out. I find it a relief when I stop juggling and people pleasing and focus on what i want to do and what i need to do. For me that's being a carer but I know this situation would be harder for others handle.

So.. what do you really want and what do you REALLY feel the need to do? Thats the question i would ask myself in your shoes.

Also 're isolation... I don't feel that isolated except when in the company of others who are having a pity party on my behalf - sad head tilt how's DP?. It's gotten old real quick.

All the best and I hope you find something which suits you and your family.

Defenbaker Tue 12-Mar-19 02:08:06

No - don't do it. I'm writing as someone who helped care for elderly parents for several years, enabling them to stay in their own home until dementia/mobility/incontinence problems made it impossible for them to remain there. I had carers coming in 4 times a day, but even so there were plenty of times when things cropped up between visits, so I was constantly on edge, dashing over there to sort out problems. That was all pretty stressful, but my part time job was a welcome distraction and at least I had some down time (most days) in my own home, where I didn't have to cope with a severely deaf parent with zero short term memory asking me the same question several times an hour, then not hearing or understanding my answers (which had to be shouted, as hearing aids were usually lost/broken). Also, no matter how well the carers and myself battled with the personal hygiene issues, and how hard the cleaner worked, the smell of bodily excretions was all pervasive, because when adults wear incontinence pants it's a constant battle to keep on top of changing them, especially if those adults have no sense of smell and are in denial about their issues.

Being a carer for one elderly parent with health issues is enough of a strain, but caring for two could easily break you, then everyone will lose out. You could find yourself in a situation years down the line where one or both of them has dementia (around 50% of 85yr olds have it) then they may eventually need 24hr supervision if they become a danger to themselves and/or others. I'm galloping ahead to the worst case scenario here, and maybe neither will get it, but anyway they both have health problems which are likely to get worse with age.

Some people say that it's a person's duty to look after their parents in their old age. I say that's judgemental nonsense, and a totally impractical attitude to take, considering the increased life expectancy and prevalence of dementia in the elderly. Anyway, most loving parents would not expect their adult children to sacrifice their own health for years, so don't guilt trip yourself into doing more than your health can stand. You can do a lot to help and support them through old age, but taking the whole burden on yourself full time is a massive commitment, and will only get harder as they age.

Organise regular care visits then you can fill in the gaps. Hopefully your father will make a partial recovery, then you could seize that window of opportunity to move them to more suitable accommodation (perhaps some sort of retirement complex with on site help/support/activities on site). There are retirement complexes where people can live independently, with support, until their needs grow and then they move into a care home on the same site.

I was lucky to find a lovely care home where my father lived the last 3 years of his life. I will always be grateful for the kindness of those carers. Mum stayed in her home until she became so frail that falls were a daily occurence, she became bedridden and tipped into crisis point with organ failure. She ended her days in a nursing home, and the carers there were very kind. I miss them both, but given the choice, I would not have done anything differently. Part time care for them took its toll on my health, full time care would surely have destroyed me.

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