New to care - advice please

[DogsLoveLakes]

Hi - I’m in despair over my current situation and looking for some support and advice. I know this topic is called elderly parents but what about when the parent isn’t particularly old, just disabled and incapable of looking after themselves? I’m only in my 30’s with a busy young family (children 0-primary school age) and find myself responsible for a parent in their 60’s who is resisting external care and support and won’t engage in conversation about forward planning in terms of what support I am able to reasonably provide. They just want to take a day at a time and get help as and when which I am finding immensely stressful. In fact I feel quite ill about it today which is why I’ve ended up here. There’s no other family around and I don’t know what i should be doing.

Oh dear, how difficult, do they live alone, what sort of accommodation do they live in. I would go and see your g.p. and explain the stress you are under and look up the carers u.k. site. If your parent is not looking after themselves they should have a needs assessment done by social services, what sort of disability do they have. They can apply for attendance allowance to help pay for care if money is an issue for them. Do you have a partner to support you. Somehow you are going to have to say you are not able to give so much, maybe you could manage help with a bit of shopping or housework, you need to write down what you can do, how often and for how long. You shouldn't feel obliged to help, don't feel guilty if you cant. Is your parent linked in with any community support, district nurses, g.p. who could have a chat.

Don't feel guilty about looking after yourself first - you can't look after anyone else unless you are healthy both mentally and physically,

Sadly, they won't accept the need for outside help if you are always there to step in. For the sake of the longer term future, you need to be prepared to stand back at times and let them realise the consequences of not accepting help.

Think very hard about what is achievable for you long term - how many visits a week? how much time doing admin in the background? are you content to have no holidays and no days out for the next 40 years? And once you've worked it out, stick to it. You don't have to spell it out to your parent, but you do have to be prepared to say "no, sorry, I can't manage that" (don't give a reason why - they will simply try to persuade you that there's a way round. Just keep saying "no" or at the most "I've got other things I need to do on that day")

Whatever happens, keep reminding yourself that what you do in a crisis has a danger of becoming the new normal.

Try to save yourself for the things only you can do - discussing decisions, social/family time - and be adamant about the need to bring other people in for eg cleaning.

Sorry for disappearing! Struggled to log back in after registering to post here.

I’m totally in the position of what’s been done to help in a crisis becoming the norm. I honestly think that the amount I’m doing (at least 2 frantic hours a day often more) isn’t even being registered as necessary despite the fact that I’m providing essentials such as clean clothing and bedding and providing the only meals that are being had. There’s no discussion of forward planning, apparently care isn’t needed. Any attempt to discuss what’s going on is shouted down and I’m accused of trying to bully or cause upset. Simply withdrawing to make a point isn’t a possibility as food, in particular, isn’t exactly optional. It’s so sad. I wouldn’t want this quality of life for anyone but neither can I bear the thought of this for the next few decades for myself and my own family. It’s greatly affecting my own physical and mental health already. As has been mentioned this is a future looming with no holidays or day trips for my own kids - having to rush back to be there and constantly thinking about what meals I can provide etc etc. But apparently I’m wrong. This care isn’t even needed at all.

Food is optional short term - I'm thinking in terms of missing a meal, or having a boring meal from what's in the house because you haven't cooked. Look at it this way - better to put some lines in the sand now, when you have control and can step in in an emergency, than to leave it until you become ill yourself and you can't provide anything and have no control over when you'll be well enough to start looking after them again. This sounds melodramatic, but if you're overworked and stressed, you're vulnerable. After dealing with my father's repeated hospital admissions over Christmas I went down with that nasty cold that's been going around, and it completely poleaxed me - weak, no energy, several days of fever and being unable to keep my eyes open for more than a couple of hours across the whole day. Haven't been that ill for a great many years.

Look at ways in which you withdraw and make things inconvenient - clean clothes but favourite clothes still in the wash. Not able to provide a lift for a social outing but will arrange a taxi.

Stop talking about forward planning - that requires an acceptance on their part that things are going to get worse, which is a scary thought they may not be ready for. Don't talk about needing help because they can't do it, talk about getting help because it will make life more pleasant for them. Or even appeal to their better nature and say you need help.

You, as carer, are entitled to an assessment of your own needs from social services. I've never tried this route, so I don't know quite the mechanics of getting it or how useful it is.

How disabled are they? I presume they have some mobility, otherwise they couldn't rationally be saying no care is needed. Can you provide a reheatable meal for one day, plus a pile of ready made sandwiches, and give yourself a day off? Do this a few times, and then meals-on-wheels (if available in your area - only 40% of LAs still provide it) may start looking like an attractive proposition to them.

I know I sound brutal and uncaring, but you really do have to put your own health as top priority - you have so many other people depending on you.

If your parent has full capacity then you are not responsible for their choices, they are. Being disabled sucks but does not give you the right to ruin your own child's life. Do what Mere suggests, its a really good plan.

you're providing the only food that the parent gets?

Is there an issue with capacity?

I agree with Dint, it sounds harsh but if they won't accept that forward planning is needed, I'd leave something that can be eaten cold - can they use a microwave? - and then I wonder if they will see the situation for real.

Is adult social services involved? If not call them and repeat what you have told us. Say you are willing to provide some support but you are at your wits end and need help. As far as costs - care needed for health reasons should attract funding whereas social care eg shopping doesn't. There's means testing for some care.

Each area sets their own thresholds so hard to generalise but up to 3 hours of visits per day is typical before residential care is likely to be considered if they have funding.

If you believe that they lack capacity then you can approach the court of protection for power of attorney.

So sorry you are going through this, it's tough but there's help if you ask, don't be s martyr

Dogslovelakes I know exactly how you feel. I am going through a similar situation and struggling to find a solution. It is not feasible for me to drop everything at a phone call to sort out emergencies which are frequent.

I have had to employ a carer initially without Mum's consent and the carer does the shopping once a week. I no longer do it. Mum will not starve as food is brought for her but it no longer involves me. Interestingly this has been set up for a couple of months and she loves her Tuesday afternoon outings with her carer to the big Tescos!

I have just this week organised a daily carer to pop in. Mum is now kicking against this saying she does not need it - I have said I need it.

Harshly I have not contacted her for two days as I had to have the space - she has seen other people and I know she has all she needs. Today I got the emotional phone call that she is all alone while everyone else in enjoying themselves having turned down an invitation to go with her neighbours so her loneliness is her choice.

I find this incredibly hard to do as I will bend over backwards for anyone and everyone so I feel that I am being hard on my own mother. However I will be dead before her if things carried on as they had. Also my own family suffered as I had no time for them, had to cancel plans etc due to situations with my Mum.

Also I feel that she gets more stimulation from seeing other people than just relying on me.

However this is work in progress and I know that there will be another emergency.

On a practical level can you sort out Meals on Wheels - they will bring a hot meal and sometimes even sandwiches for a second meal. Just book it and say you are not able to come every day - do not give a reason just that this is going to happen.

In my experience once one thing has been sorted out there has been another thing that only I can sort but again outsource this. Keep your visits for social only.

You must not sacrifice your family holidays etc for one member of the family when there are tbh probably better qualified help available. (That was meant in a nice way not that I think you are incapable just giving you a reason to let someone else do it )

Sorry you said not elderly so meals on wheels may not be suitable

Thanks everyone. I’m feeling so down about it all that I can hardly face posting but wanted to say that your responses are appreciated and food for thought. I am the only provider of food so do leave cold plates most of the time and do hot meals when I can. It’s good that your mum will go out and be sociable - that would not be entertained in this case! Both out of preference and lack of mobility. I don’t feel like calling in social services etc is my place as the person involved is so mentally capable nor could I afford to employ someone myself. It would not be received well either! I’m going to just have to see how things go.

OP, the person involved has capacity - so they can see that you are cracking under the strain and they need to make an alternative arrangement.

you could call Adult Social Services on the basis that you can't look after them. It won't be well received - but how long can you go on like this?

can the person pay for private carers, that might be the best way forward. Has the person thought what happens if you get ill? Obviously I hope you don't, but it's just one of many possible problems of relying on one person for care.

Sorry you said not elderly so meals on wheels may not be suitable Our meals on wheels serves all ages.

You can ask for social services to assess your needs as a carer.

The situation will sort itself- from what you're saying you're near breaking point, so that breaking point will come sooner or later, and then the person will have to accept care from somewhere else. That's one reason people are saying act now, when you can apply some sort of control to the process, rather than when you're incapable either physically or mentally.

I do feel for you DogsLoveLakes you are as important as your Mother and you deserve to have help. You do not need to do this all yourself.

Whats the worse that can happen? Your Mum gets cross and upset with you but then has extra help or you leave things as they are you get ill and to breaking point and she has no help and you suffer.

If she can not or will not see that you need help you will have to ask for the it.

I realise that most of your energy is already used up but please do look after yourself.

OP I feel your pain but your children are young and you will wear yourself out and be no use to anyone. My parents are elderly and were just about managing my dad has early stage vascular dementia but my mum who is a bit of a martyr is in hospital at the moment. So we are all having to step in and do what we can. Dad can do beans on toast which he eats umpteen times a week but that’s about it, he can’t do the washing machine, is sometimes incontinent at nights but he’s been ok the last fortnight but can’t or won’t wash himself or go food shopping. I am trying to set up power of attorney which they have agreed to but apparently they don’t need any other help. They live in a house with one bathroom upstairs and I am sure they bought the house an ex council house with some dodgy company whereby they pay a minimal amount every month but it goes to that company after their day. My mom will need an assessment before she comes out of hospital but she’s saying she doesn’t need any help. I don’t know what the savings is like. I know they inherited some money from my grandfather and they made home improvements with some of this. But I know I may need to push to apply for attendance allowance sooner rather than later for one or both of them.

I’m just coming back to this post a couple of months on. I was feeling so overwhelmed then and still am but I realise I’ve just become acclimatised to how things are now. I think when I first posted I hoped it would be a temporary situation but further down the line things are much the same. There is a home help going once a week and carers going twice but I’m still going on most of those days too. @OverFedStanley when you talk about outsourcing lots of the practical care, who is paying? If that’s not too rude to ask? I just couldn’t afford to take on any financial responsibilities even though obviously it would really help.
I really struggle with knowing what should be reasonably expected of me in normal duties towards a parent and where I can have boundaries. For example activities that I did before for myself have had to stop and my energy levels and mental health are being affected. Activities as a family are impacted as we can’t go out far or for long and a holiday would be completely out of the question.

I am 58 and there is no way I would expect my only daughter to be doing what you are. This parent with full capacity should be doing everything possible to remain as independent as they can. You need to discuss this and tell them that 'll care should be paid for themselves. They should be paying out of thier benefits and topped up by savings. Why are you having to go every day.....and why and what are you having to do while there

What can be reasonably expected is, quite simply, what you are prepared to do. And as you have your own life and a young family then realistically that may not be very much.

However, you have to walk away from the guilt and harden your heart and leave your parent to it. And that's easier said than done, but they are being utterly selfish by refusing to recognise the problem and be quite happy for you to ruin your life running round after them.

It's not your fault they are disabled. It's not your fault they are in denial about the level of their care needs.

In your shoes I would be completely honest and say you cannot do this any more and they must find a way to manage their own care needs.

Just imagine if you broke a leg and were hospitalised and in traction for several weeks. What would they do?

You are NOT responsible for this situation - there are options and if they have the mental capacity then they need to explore the options. You running yourself ragged and neglecting your own life and your family can no longer be an option.

Yes it's going to be a tough conversation. Yes you are going to be accused of not caring, of being a bully, you will be on the receiving end of tears and heaven knows what.

But what's the alternative? Ask yourself that.

@user1497997754 full mental capacity / zero physical ability! I do food, laundry, some admin, bits of personal care, general house running stuff.

@RatherBeRiding I’ve said I can’t and don’t want to be doing it but nothing changes.

Have they had a full financial care assessment? Attendance allowance etc? Carers association may be able to support you- and help find ways forward.
But you do have a right to your own life!

You need to phone adult social care for your area. Explain the situation, that your mother needs care for lots of every day things, but that you are no longer able to provide this care. Tell them that she is refusing to let you engage support but that the situation isn't now desperate. They will visit your mother, probably sending in an emergency care coordinator. They will assess your mother and advise her of the support she is entitled to. You must NOT go back to continue with the support you have been giving until she utilises the professional support she is entitled to.

when you talk about outsourcing lots of the practical care, who is paying? If that’s not too rude to ask? Social Services will pay for care, asking for a financial contribution from the person being cared for if they can afford it. The financial assessment is based first on savings, and if savings are not over a certain limit, then on income. As she's living at home, the value of the home won't be taken into account.

Is she already getting attendance allowance?

As people have hinted above you can yourself get an assessment of needs as a carer, and that might be a route in to persuading her that she needs to accept outside help.

You shouldn't be letting your own family suffer, and you shouldn't let your mental or physical health suffer else you won't be able to help anyone. Don't listen to anyone who isn't themselves caring for an elderly person - the people prepared to heap on the guilt are almost always people who have no experience of the draining effect of being on call 24/7.

Unfortunately I don't think anything WILL change as long as you keep doing the care. Saying you won't/can't but then doing it anyway is obviously having no effect. Saying you won't/can't - and then NOT doing it anyway will work. But it will be hard.

I cared for my disabled father until his death. It nearly broke me. It was absolutely dreadful by the end. Don't let this situation get to crisis point.

The main thing that's expected of family to to act as coordinators, and also have power of attorney. You need to set your own limits and have a really tough conversation about what you will and won't do. As far as paying, you can ask for a reassessment if needs at any point, you are not expected to pay yourself