Go part-time to look after parents more?

[Wemdubz]

I’m sure there will have been threads asking similar questions before but I’ve searched and am struggling to find them. I’m posting for the views of people who’ve been where I am and are able to look at my situation more clearly than I am. I’m all over the place.

My dad (85) had a stroke a couple of years ago and my mum (81) is main carer. My sibling who has early onset dementia also lives with them. I am due to start a new job soon (4 days a week compressed hours) but am now seriously questioning whether I can or should.

Dad is deteriorating and I think he possibly now is showing signs of dementia and is increasingly non-responsive and unable to bear his weight making it very difficult to move him.

A carer comes in the morning to get him up and shower him (self funded). Mum has managed so well at night and during the day but it’s getting harder and harder as dad doesn’t respond to instructions and sometimes appears like he’s in a trance. She would not entertain the idea of a home. I am now going at night to help get him into bed. I also go for the day on my days off.

I am considering not starting the new job as 1) I don’t feel like my mind would be on it and that I will struggle to focus on the training snd give it my all 2) I feel like I should be there for mum and dad as I’m worried mum will make herself ill and then I don’t know what the hell would happen.

I have a mortgage to pay and really need a full time wage but really want to be there for my family. I am also becoming very aware that my sibling’s needs are ever increasing and that this will be an added pressure soon. I feel a bit overwhelmed as I am the only one to deal with it. I’ve no other siblings and have no partner.

Has anyone given up full time work for part time to be there more and actually made it work? I don’t think I’d get much in the way of benefits but I’m thinking of trying. I’m worried if I come out of work I’ll never get back into a job and then be in financial trouble (I’m 54). I keep running through my income and outgoings to try and make it work. I could access a very small private pension to top up my income but still will have a shortfall I think.

I guess what I am asking is whether anyone else has done this and either regretted it due to the financial struggle or has done it and felt more at peace by being there to help. Thanks for reading. I’ve got some big decisions to make and feel constantly anxious going over it all in my head 😔

I don’t have any experience but honestly this sounds like a very very bad idea. I think you should be trying to increase the amount of support for the family that isn’t you. More paid carers - half the battle is already won if they already accept the need for some help. Paid cleaner as well maybe.
If you stop work then you will probably struggle to get back into the same level after a gap. All you will be doing is sacrificing your own future financial stability to perhaps slow the acceleration in your family’s increasing needs for a while.

Absolutely not unless they replace your income.

Your parents need to increase Dfs care package - at the very least to add a bedtime visit. The whole setup could probably benefit from a needs assessment.

Care needs are going to increase dramatically over the next couple of years with two people in the household having dementia. Inevitably there will be a burden on you but you need to work on focusing on management - eg setting up taxi services for them rather than driving them everywhere.

Surely none of them would expect you to live in debt or poverty and give up your independence to do this?

@Gassylady Thanks for your reply. I hear you.

We did have carers at night but they were inconsistent with the times they turned up and sometimes dad was ready for bed hours before they came so we ended up cancelling them. Probably need to re-think this.

I guess I’m struggling with my own thoughts around it being my responsibility.

@olderbutwiser thanks for your reply. I must stress this is all on me and the pressure I’m putting on myself. My mum would be upset to know I’m even considering it. You’re right that they wouldn’t want me to struggle.

Your first responsibility is your own health and future, which you're risking if you take a financial hit that will backfire on you.

Could you be more of 'the organiser' and less of 'the doer', which would enable you to keep working while ensuring they have all the carers they need?

Keep in mind that phrase: "Don't set yourself on fire in order to keep other people warm."

Your life will continue long after your parents’ care needs end- you need to plan for that.

Your contribution should be persevering in helping them buy in services that support them. Maybe the night carers don’t work- or maybe your mum needs to be more flexible about how it works. It isn’t cost effective to pay for only the care you need in the moment you need it. You are part of a system to keep costs down and that means compromise.

That doesn’t mean you don’t explore all the options and see what other solutions there could be. It does mean that you will likely need to be flexible and adjust some habits to fit in with what’s available.

I have two sets of elderly mums who are refusing to adjust their life to their capability. No, you can’t go on solo bus trips to different cities because you get lost/lose your purse/forget where to get back on the bus. No you can’t stay and supervise the workmen who are trying to fix issue x as you keep driving them away and they won’t come back.

So frustrating. Things change whether we like it or not.

Could you look at live in carers?

I’m so sorry you are in such a difficult place. You seem to be taking everything on single-handed. I agree with pp that ceasing work is a bad long-term idea as it may not be easy to get back into the workplace in the future. I’m caring for my partner who had a stroke two years ago. I’m fortunate in that I’m self-employed and can work around caring, but it’s still relentless. Do your parents have attendance allowance and other benefits in place? Does your brother have any kind of financial package? Care support makes a difference but it can take a while to get to know support workers and find reliable people.

Thanks all. I agree I can increase my contribution by doing more organising. I do some of this already by dealing with their bills, online shop, admin etc.

I think I just panic a lot as the only child who has the capability to support them. I can’t see the wood for the trees at the moment so everyone’s objectivity is helping.

@MadameCholetsDirtySecret live in carers wouldn’t be a possibility but thanks for the suggestion.

@Craftycorvid Hi, dad has attendance allowance and sibling has PIP. These do help. Thanks for sharing, I agree it’s relentless!

Please don’t.
Are you in touch with Age UK and the Alzheimer’s Society? Lots of excellent advice and pointers to services, Memory Clubs etc.

Don’t put your house at risk.

In some areas Age UK have advisors who can go through the finances etc to advise if they are claiming all the benefits they can. It doesn't operate everywhere but they were really helpful for my ILs. If there's more to claim you can use that to try and persuade them to buy in more help. On top of that we've found it's easier to get them to accept extra paid help if an outsider suggests it. They could also point you in the direction of local services like lunch clubs/day centres etc that could help your mum. MIL was severely disabled and non verbal after a stroke and went to a day centre 10-3 two days a week to give FIL a break.
But giving up your own long term financial security is really not a good idea.

@MrsSkylerWhite @countrygirl99 we have been in touch with local groups. I’ve tried regularly to get my brother to attend a group but he just doesn’t want to leave the house. I think possibly due to the groups being aimed at much older people but he also just sleeps a lot. It’s very sad to see.

Social Care have helped with aids such as bed for dad etc. We’ve set up lifeline as dad kept ending up on the floor so they’ve been brilliant assisting. I encourage mum to meet her friend for lunch every month so she is getting out too.

We’re claiming everything we can I think. I do worry dad’s needs are becoming increasingly difficult to manage at home but also understand mum’s wish to keep him there.

Don't do it!

You keep saying you're the only sibling who has the capability to do it, but you don't. You have a mortgage to pay. You wouldn't get benefits if you gave up.work voluntarily, carers allowance is a pittance, and only available if your other earnings are minuscule. You can't afford it. And caring for 3 people with steadily increasing needs will break you.

@NoBinturongsHereMate I know this deep down 😔

You can’t do this. There is no way you can care for three people with increasing needs. It will kill you. Sorry but residential care is going to be the only way forward.

I've had to make a similar decision this year, part time work was refused so I have to go back full time.

I'm reframing it that I will have the extra income to spend on home helps, which aren't welcomed unfortunately. We have had many medical issues over the last 5 years and I was beginning to consider being a full time carer.

I've decided to embrace work this year as an outlet, a time when I focus on myself and my career. It sounds like you will have to make many of the hard decisions about your family in the future so put yourself first now.

It's very hard not to feel guilty but it is your life as well and personally I have already done so much and spend huge amounts of time and money helping them which has no real end to it. Try to advise yourself as you would a friend as emotions interfere with decision making.

If you don't want to change jobs however then don't but if you're excited about it then go for it.

@Acheyelbows Thank you for your reply. I’m backwards and forwards with my thinking. I go from feeling positive about the job to feeling guilty that I’m not there enough. I know that if my dad could communicate he’d tell me to keep the job 😢

Keep that in mind, your parents wouldn't want you to give up your own life. Even if you did, it wouldn't be enough as the care needs keep increasing.

They need to have a team in place as if you take on with it and get unwell there will be no one to take over. You can still help but three adults is too much for one person.

It's a very hard decision, I too am the sole decision maker with a sibling who is unable to help. The responsibility can be overwhelming at times but try to think about your responsibility to yourself to live a fulfilled life which includes your career.

I came very close to losing my career by caring for one terminally ill parent. At that point in my life I didn’t have major financial commitments like a mortgage,
but I did take a lot of time out of work. The trouble with caring is that it grows and grows. Even if you went part-time, they’d still end up needing support on your working days and you’d end up running around after them whilst struggling financially. The care needs will increase. It’s physically impossible for you to care for three people what will become 24/7, and it’s more helpful for them to have to engage more with other services so they’re used to it when more care is necessary.

How good are your finances? How many years left on the mortgage? How much in your pension pot and what sort of retirement would it buy you? You don’t have to answer those questions here but think about your future and what your needs will be in a year, 10 years, 20 years. The jobs market is insane at the moment, it would be crazy to step away from a job that has already agreed a flexible work pattern, and a very real prospect you might not get back into work again, or not at the same level.

I went in the opposite direction and went from part-time to full-time work. I have a mortgage to pay and a child to get through school and maybe university. But if I’d stayed part-time I’d have been expected to take on an ever-increasing amount of care and it wasn’t going to be sustainable. Going full time means I can’t be the default option although I can help organise things.

Good luck!

@Acheyelbows @EmotionalBlackmail Thank you. Everyone’s replies are really helping me to try and keep things in perspective. You’re all very kind to take time out to reply.

All the advice here is really useful, soI don’t want to repeat it.

Just wanted to add:

People don’t realise that modal (statistically most ‘popular’) life expectancy is much higher than average life expentancy. Typically, men live to their late eighties and women to their early nineties. Therefore, you are looking at at least a decade of increasing care needs. How do you feel about that?

If you went part time and became integral to your parents’ care, you’d then become the default and it;s very difficult to get support in. Example: all siblings plus another relative took on the 24/7 care of our FIL. They took turns to live there. Social services assessment “Your father has capacity and he’s decided that he will continue with the current arrangement of his sons living with his dad to meet his needs’.

Your 54 and single. You need to be earning a salary to pay your own mortgage and save for your pension. Also it important that you have some down time for both your own physical and mental health.
A few years ago one of my friends was in your position. She was in her 40's and has a small mortgage. She had a sister living about an hour's drive away with older kids who worked PT.
Both her parents were elderly and her father had Alzheimer's. At the time she was working 3 days a week but it was about 45 mins drive away. She was thinking of leaving work and claiming careers allowance. She could be around more for her parents then.
Another friend of ours said to her if you give up work now it will be extremely hard to get a job later on.
My friend stayed in her job and organised careers to help her parents. She arranged doctors appointments ect for the days she was not working.
After her father died a full time job came up with her company closer to home. She applied for and got this. Her mother need care shortly after this and she got careers in. She took time off work for a few weeks when her mother was declining and after her death. It was not easy but work gave her time away from elderly parents, give her a lunch break and kept her income up. During her lunch break she meet friends for lunch.

In your situation I would contact adult social services and explain that your parents and brother all have caring needs. They need an assessment for care and to have careers coming in. You need to arrange this for a day that your off and be very honest about their care need's. Your mother might try and say that everything is fine.
It fine if you're there most days and doing the shopping, cleaning, admin work but if you were not around for a few days they would be in trouble.
Tell your mother that careers are coming in to help out because your in work and tell her that you that you will be working late an odd evening.

From what you have told us they may need a nursing home at some stage. I know some elderly people are very anti nursing home but if an elderly person has high care needs due to declining physical or cognitive ability this is the most suitable care.

I would also contact age UK and see what benefits they could claim like attendance allowance and pip. This money could be used for careers ect.

The reality is that you can't give up work to mind them. If you give up your job you can't pay your mortgage or put money into a pension. You have to think of yourself and your own future also.

@Popsicle1981 you’re right, this could go on a lot longer than I’m expecting it to. Food for thought.

@Ilady you’re right about needing down time and it’s true that the more I do, it’s going to be harder to get help from social care as needed.

My mum is happy to have carers as long as there’s consistency. My dad struggles and becomes less cooperative when it’s different people turning up all the time. I do have sympathy with the care agency and know it can’t be the same carer all the time. I’m asking mum to request a new financial assessment to ensure she gets any direct payments but I think they will be close to the threshold and need to self-fund.

I don't have any advice beyond what other posters have provided, however I just wanted to say that I wish you all the very best. It's a difficult situation you are in, and you sound very kind, thoughtful and also very selfless.