I have an epileptic and autistic sister (she’s 30 but has a mental age of roughly 6), my dad has been severely impaired in eyesight and short-term memory by a brain haemorrhage he had in January 2012, and my mam (my sister’s carer) is suffering from depression, severe anxiety, insomnia and occasional suicidal ideation. I am also the only driver in the house, and take my mam for groceries every Saturday as well as keeping her company (with TV and board games) every evening.
I have never lived away from my parents – even though I went to university and have now been employed for almost 11 years – and now yearn to move out (primarily because I’d like to try finding a girlfriend or wife, and suspect that my family situation would be a deal breaker for any woman if she became aware of it). However last time I attempted to move out my mam caught me in the act and threw a major tantrum, and I abandoned the move out of fear that if I went ahead my mam would commit suicide! I’m now despairing of ever being able to move out, fearing that I’ll be expected to live with my parents until they die and then take over from my mam as my sister’s carer.
Have I ended up becoming a carer for my mam without even realizing it, and does anyone here have any ideas for how I can get out of my situation? (I am considering taking advantage of my workplace counselling scheme, but I am also looking for more practical suggestions.)
I have just read your post and I wanted to say welcome to the forum.
there are many people on here that i feel sure will have all sorts of practical advise to help you with your situation. but i just wanted to say a big welcome, its a very friendly forum and i am sure you will benefit from joining. i certainly have.
You are not responsible for your parents. How they live their lives is their own responsibility, not yours.
You are not under age and you do not need anyone’s permission to move out and have your own place, where-ever you choose to live. If Mum feigns illness or threatens self harm that is emotional blackmail which you should ignore.
It sounds like Mum seriously needs some counselling to deal with her anxiety and maybe a Social Services needs assessment may be a route to outside help for the family as a whole. Others here will be able to give you details how to access that help on their behalf.
As to the threats of suicide, I have personal experience of that from my own mother. She’s been doing that for two years now and never once actually done anything. Ignore it.
Find your new place, pack your stuff and go and get on and live your life. I wish you all the best. You really deserve it.
Hello, George. I agree with Sara’s excellent advice and suggestions. You need to set a controlled distance from this relationship.
Consider having groceries delivered, to ease the present strain and prepare for the time when you will be less on-hand. You are perfectly justified in wanting your own life and building your own family. Best wishes!
While my sister does go to a North East Autism Society unit two days a week (the council can’t afford more days), my parents currently use these to go for shopping (so that they aren’t totally dependent on me in that respect). I’ve also asked my mam why she doesn’t go out alone more to get some much-needed social contact, but she replied that my sister gets too anxious about being left alone with my dad!
How might I go about finding a counsellor that would be willing to visit my mam at home?
Just a quick answer for now as I’m on my way out. (1) Google “codependency” and “boundaries”. (2) Take up the offer of work counselling. (3) Leave!
Seriously, your mum will try anything, no matter how underhand, to keep you because she’s frightened. I had all the emotional blackmail from my mum, like “in my day we moved to be near our parents” and when that didn’t work she moved to be near me. (Incidentally, she had a brain haemorrhage at 47 but is still going strong at 95!)
You have the means to get away - grab the chance with both hands. I wish you all the best.
Starfish, I suspect that my mam doesn’t just regard attempts by me to set boundaries to be illegitimate, but that she regards the very concept of boundaries to be illegitimate too: she has often boasted that she never kept any secrets from her parents…
Hi George, you need an Escape Plan. “This time next year I will be FREE!”
My own son has severe learning difficulties, and now lives away from home. I have always believed that it is wrong for disabled children to live with their parents long into “adulthood”. During his late teens and twenties, my son learned to do so many things that he would never have done at home living with me.
It is time for your parents to make long term plans for your sister, so that she can move away from home and make a life of her own. The council MUST meet her needs, they cannot use the “not enough money” excuse for someone with critical needs.
Your sister will be entitled to legal aid to fight the council if necessary.
First steps are to arrange for mum, dad, and sister to have an up to date Needs Assessment from Social Services, and for you to have a face to face Carers Assessment (refuse to fill in a form instead!) and make sure this is done away from home.
Now start a Wish List of your own.
You need a home of your own, even if it’s just a studio flat to start with, somewhere that is truly your own. Start looking now. Then you will need a bed, bed linen, etc. so start thinking about what you would REALLY like, not just what will “do”.
Think about the colours you like the most.
I’m not saying abandon your family, but they have all used you as a convenient slave for far too long. Just because they can’t do something doesn’t mean you have to do it instead! Social Services need to step in.
You obviously care greatly for your family, but you also are entitled to your own life. Make plans to move out, but don’t be secretive about it. In your 30s it is way past time you did so and is the normal order of things. Whilst it sounds as though your Mum will be upset, it is far better to be open and honest and get her used to the idea. I am sure she will find it hard. But it really has to be done for your own sake. Also doesn’t mean you abandon them. You can still visit your sister and provide your Mum with some respite. But just not all the time.
As for your sister, her mental age may only be 6, but she may also like/relish a bit more independence too? Not all care environments are the same. She may relish the opportunity to make new friends? There is such bad press in the news about “institutions” which creates horrible fear. And yes, some are not very nice. But from my own experience there are exceptional care environments as well. Different situation, but my Dad has just died after being cared for in a specialist nursing home for those with neurological conditions. The age range of patients was from 20s to 80 (my Dad) the care was utterly humbling and mindblowing.
Take care and make some plans for yourself and don’t take any emotional blackmail. The power to make change really lies with you. You can do this.
Just properly read your story properly and my heart bleeds for you.
I see you have Asperger’s. Please don’t see this as a barrier to finding love and happiness yourself. I have a v good friend who is married with 2 lovely children and he has Asperger’s.
Just hearing of your lack of social like makes me so sad for you. Your Mum saying why would you want one is utterly ludicrous. We all need friends . A social life isnt about liking football or getting drunk. Is is meeting people who “get you” and you like being with. Doesn’t have to be scores of people. Just a few good friends can make a world of difference to your life. What clubs or classes are there in your area that sound interesting? Why don’t you try going to a few that sound interesting? It might be daunting at first, but I am sure will boost your confidence.
Finally, please don’t spend your hard earned savings on getting a place with your parents and sister. It sounds as though Newcastle is appealing to you. Why don’t you start looking at places? What is YOUR dream house? City Centre flat? House in the suburbs? Start looking and go for it. Regardless of what your mother says. Your destiny is not to care for your parents and then take over the care of your sister. But YOU have to make the move.
I really think you hit the nail on the head in your first post about the councelling. Please go for that if you can. I am SURE it will help.
Since everyone who has replied to this thread seems to be urging me to get out, can I take it to mean that the answer to my original question “have I ended up becoming a carer for my mam without even realizing it” is “no, I am not in any real sense a carer to my mam”?
As for what I’d do with my life were the weight of family obligation to be magically lifted from my shoulders?
Certainly beginning a social life would only be an intermediate stage and getting myself a woman would be the real goal: so I’d probably focus on activities that would give me plenty of chances to meet women: like the dance classes (that my mam for some reason stopped me restarting 7 years ago) or perhaps foreign language classes (I’ve learned little bits and pieces of various languages, but I don’t have the confidence even to try any of them with the many foreigners I know at work).
My ideal woman would probably be late-20s/early-30s, well-educated and (hope I’m not offending people too much) not melanin-deprived like I am, but I suspect that would sadly now be way out of my league. While I have plenty of savings in the bank (and I’m fortunate to look very young for my age: a work colleague suggested I only look about 30) my income (£24k/year) is pitifully low for someone of my age and qualification level: perhaps again because my confidence was destroyed by failure to achieve my mother’s blessing to move out?
The issue of have children I suspect is one which would tear me apart: while I find it a soothing experience seeing mothers with small children (although it scares me that I find Muslim mothers in hijab to be the most appealing) but I’m also terrified of being shackled to a disabled child like my sister!
As for where I’d like to live: I don’t regard city-centre living as necessary although being in walking distance of a Metro station would certainly be a huge plus (I’m feeling awfully guilty about the carbon footprint from my current 25-miles-each-way car commute). But don’t very few men actually prefer the big house in the suburbs anyway, with this being far more likely to be the wife’s preference?
You sound like a teenager talking that needs permission from his parents to do anything, instead of a 39 year old. When adult children don’t leave their home at a time when most other people of their age would be doing so, the parents can miss the join when they move from childhood to adulthood. I have had to be very careful in this regard as I have 3 adult children still at home.
Back to you and your family - your mum needs support with your sister and with your dad, not from you but from an agency outside of the family and you need support with planning the next step in your life and with socializing. Do you have any input from social services?
I’ve often complained to my mam that I feel like an overgrown child as a result of still living with her, but she always ridicules this by pointing to 40- or even 50-something men in the village still living with their parents. And I suspect her intrusiveness re my life is down to a burning desire (due to her own total lack of social life) to live vicariously through me.
I wonder if my problem is in part down to a culture clash (which may be the case for other working-class families that have only one member who went to university)? I assumed that people moved out as soon as they were financially able (or even earlier, as with students living away from home!) but my mam seems to be from a traditional working-class culture where grown-up children are expected to live with their parents until they get into a long-term relationship (an attitude which I had mistakenly assigned exclusively to Asian or Muslim communities).
Sill no conclusive answers to my original “am I a carer” question though…
If you feel like a carer, you are probably a carer. You don’t have to give to 24 hour a day care to make you a carer. It sounds as though she relies on you heavily. But how much of this is to keep you obediently at home? Doesn’t mean you shouldn’t move out and her find someone else to help with these things.
I am from a working class family and was the first child to go to university. No culture clash here. My family are very proud and want me to speread my wings. I now have children myself and want the same thing.
I wouldn’t for one second give thought to what sort of home a future “wife” might want. This person is theory at the moment. Who knows what she would want? If you meet that peron you can make plans together about where you might live. Do whatever makes YOU happy. Being happy and fulfilled in your own life is the most attractive thing in a person.
It’s interesting to note that she doesn’t point out the many many men who aren’t living with their parents.!!!
She has got very used to controlling you hasn’t she?
I’d suggest you get some counselling to help you start to understand things from your true self inside.
Yes, I think you are a carer in that she thinks she can’t manage without you, but I think you could move more towards a "care manager "role whereby you organise more things than you actually perform. That way you are still caring in the loving and dutiful sense but are freed from some of the drudgery and emotional blackmail
After some more discussions with my mam (the first one was at about 3 am when she came in my room after my sobbing woke her up) it seems like the issue is that she feels I cannot ever be allowed to engage in any kind of social activity which might lead to a sexual relationship, because she’s terrified that my Asperger’s would cause me to do something seriously illegal that I didn’t even realize was wrong.
(Another issue is that she’s worried about women taking advantage of me financially…)
What a load of rubbish your mum is talking.
Isn’t she really just trying to find any excuse to keep you tied to the apron strings for her benefit?
Isn’t she just scared of you leaving?
A good mum would want to see her children happy and settled, in a good relationship, with a job and friends. I’m sure my scientist dad would now be described as having Aspergers, but he loved us and ended up being a leading scientist in his field.
