My family doesn't get it

I’ve been caring for my mum for 7 years. I moved from London to a quiet elderly community in Wiltshire to look after my mum full time. I rented out my house and because of that I’m not entitled to any carer’s support. I teach an over 60s keep fit class in the village once a week and gave up my business and a relationship to give my mum a good end of life.

Since I’ve been here I’ve made the house completely disabled friendly, done loads of repairs and decoration and rejuvenated the garden and created an environment which my mum loves and is very happy. Every few months mum has a health crisis which usually involves the paramedics and endless trips to hospital. Each time she has recovered well.

Its full on. I try very hard to keep her connected with her friends and we go on lots of exciting outings, disabled ramblers, disabled flying lessons and on and on. I have been happy to make this sacrifice I know she is at her end of life, she has Lymphoma and it is progressing, she’s 90.

The problem I have is with my family. They don’t give me a great deal of support but the trouble is they think they do and are often quite critical. When they do come to visit its always a power struggle because instead of working with me, they seem to take over and leave me feeling very disregarded. They don’t ring me often and I think they all think my life is easier than their’s cause after all ‘I’m not working’. They ring mum and say ‘give Joy our love’ but don’t ring me. They don’t consider that I live in virtual complete isolation and most of my time is taken up with care, hospitals, cooking, shopping, washing, social services and admin. I can’t leave mum on her own anymore more than a quick trip to the Coop and if I try and talk to them I usually get a mouthful about how busy they are.

Even today my brother came for the day and I said to him you need to come and spend more time with mum, she doesn’t have that much time left to which he replied I have not idea when I can come again. Why don’t you bring mum to Wales? He’s 50 and mum is 90 so although I do take her to Wales its exhausting for us both. My mum doesn’t seem to notice what I do any more, she only seems to notice if my brother of sister come and cook the dinner, she will go on and on about it and it makes me feel very bitter. The toxicity is eating me up and I’ve reached a point I just don’t know how to handle the situation anymore. Does anyone have any ideas? I have my full quota of sitting service money but I use it for care because I don’t get enough hours for care. Social services are a nightmare.

It never ceases to amaze how many relatives. Have a lot to say and contribute little. And excuses they live far away. Have you ever asked. Any of your siblings to come and stay for a week. While you have respite. Make a request but write a full list of jobs that have to been daily/weekly. Include your Mum’s expectations that she has of you.

Ask your brother why doesn’t he take Mum with him back to Wales.

Hello and welcome!

Make a short list of household tasks for him to do each week. Print it out and pin it up on a fridge or on a wall. Type it up and laminate it. Make sure that he can see it. Discuss realistic expectations.

Alternatively draft a job advertisement for a carer. Can you afford a care home or not for her? There are several in Britain. I recommend visiting. Take a good look round the place and see the staff too. A social worker can help you to find one appropriate for her. Or you can use this website instead to find a good carehome- www.carehome.co.uk. Lots of useful information on that site including useful tips and helpful reviews as well. Trust your gut feeling additionally. Do not be afraid to ask questions either.

Why does he not help out? I get it. My parents do not live here, rather they live abroad in Pennsylvania. So I am wholly responsible for my brother’s welfare and consistently have to deal with his bathroom routine and care needs plus everything else too. My partner helps me out however. He gives him his bladder meds at night, and sorts out all the childcare arrangements. My sister in law who is a few years older currently works as a nurse in a pediatric children’s hospital in Texas and has given me helpful and useful tips and advice in the past.

Is she on benefits?

Ask them to come help you for a few days. See what their reaction is. It will tell you a lot about them.

Ohh…I know what you feel…I think that you should talk to your family once again. Maybe try to talk with your brother but with calm, if he gets angry just ignore it. Tell him how much you sacrifice for your mother. What about making a plan, as people above say? Maybe it will help to deal with the problem. I don’t think that sending your mamma to Wales is a good idea. With her age and diseases it may be dangerous, your family can come and help you - it is also their relative and a person they love.

How much time does mum have left. You need some outside help so you get time off.
Forget about your useless family.

Hello Joy and welcome to the forum. I do understand what you’re going through.
It sounds like you have been a brilliant daughter/ carer to your mum. You’ve make countless sacrifices along the way - giving up your business and a relationship and moving in with mum. This all started 7 years ago when your mum was less fragile and more appreciative.
The trouble is you’ve been too good! You’ve given your mum a wonderful time but now you’re just ‘mum’s carer’ . Your own identity has gone. This is not good.
Why can’t you leave mum on her own anymore?
Stop thinking about what your mum wants and start thinking about what you want. Join local groups that interest you and gradually you can build up your own social life.
Take your mum to Wales (but you don’t have to stay) so your brother can look after her to give you a break.

Personally, I don’t think it’s fair to expect anyone approaching the end of life to be shuffled between relatives who don’t want to care. Much better to arrange more care at home for mum, so you can have proper days off.

As for the family, think “here comes the Helicopter” when it drops in very occasionally, tells you what MORE you should be doing, then quickly flies off, to be seen again who knows when?

Various options are available for care arrangements, depending on mum’s financial situation and the severity of her illness.

I think I’ve been through some of what you’re coping with. I am an only child and returned from the USA to look after mum’s care. A family friend told me I should stay because " What’s a year out of your life anyway?! ". She never did visit while I looked after mum for 14 months but Mum always did speak so highly of her. It sickened me.

Are you sure you’re not able to claim Carer’s Allowance? Income from a single rental property (even a London one!) is considered unearned income and therefore disregarded.

The work you have done and are doing is magnificent; that you are doing it in the face of unthinking criticism and thoughtless neglect makes it all the more so.