New to care - advice please

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

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 )

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

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.

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.

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.

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.

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.

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.