Hi, 25 year old here, caring for a parent with mental ill health, probably for varying degrees since I was a teenager. I’ve spent the evening reading through these useful forums. I’ve never really properly identified with being a “carer” mainly because I do get to do good things in my life despite supporting someone with long term mental illnesses. But in honesty it does affect and limit me in many ways and has taken a toll on my mental health I just dont like to admit it.
I sort of feel guilty even identifying as a carer and thinking that I may need some support myself, and I am struggling to share the ways it affects me and my worries about the future because of that guilty feeling. At the same time I feel emotional maybe acknowledging for the first time that I probably am a carer… I wonder if anyone related to the guilty feeling in the beginning or if the guilt stays with them? Guilt is one of the biggest struggles with my role. I hope I will share more of my story in time.
It took me about 30 years to realise I was a carer. Up until then I’d seen myself as a brother, then when my son was born, as a father. It took a while to wake up to the fact that on top of that I was a carer. It wasn’t so much guilt in my case as realisation that my situation was ignored by the authorities not so much because I was a parent, but more because I was a carer. That switched my attention away from one specific disability to carers as a whole.
But the word carer is relatively new compared to our main roles: we’ve known what a father or daughter, etc. is for hundreds of years. Carer was a word that only came into use in the early 80s, and took a good few years to gain any traction. So because it’s an unfamiliar word it doesn’t feel comfortable to use it. And that’s a way for guilt to get in - because it sort of feels like you’re seeking a status you don’t deserve, especially if you think you haven’t missed out as much as others.
Except it’s not true. You are a carer. And that does restrict your life, often in ways you don’t recognise.
So, we’re glad to see you here! Please have a good look round and feel free to join in!
Hi Charles, thank you so much for such a validating reply, I’ve just seen this. You’ve hit the nail on the head, I feel I’m just being a daughter/family member and that I should be wanting to do this. Sometimes I see things depicted online of carers and think “should I want to do this for the rest of my life?” and “I’m a bad daughter because I don’t want to always do this”. From reading here it seems like everyone has had their struggles with managing caring. I also feel that I shouldn’t be complaining as my caree (a term I’ve picked up here!) clearly has it worse than me. I suppose I should not compare to others and recognise that all my feelings are valid.
Thank you again, I will certainly join in more, what a great place to have finally decide to step into
I’m not sure when I became a carer. Everything changed when I was 8 years old and my younger brother was born. Mum probably had post natal depression looking back, diagnosed with arthritis of the spine when she was about 40. Withdrawn and disabled when I returned from Australia in 1976. About that time the hoarding started…
You MUST put your own needs first or your life will be ruined. Children have to do what parents tell you to do. As an adult, this no longer applies. You have every right to have friends, adventures, a career, a husband, a home of your own, children. Don’t ever forget this. If mum needs support, Social Services should help.
Dump the guilt. You did not give mum her issues. They are hers to address. Don’t let her blame others. Don’t try to jump through hoops for her. As soon as you try to please her by doing something, another wish will surface. Like shooting the ducks at a funfair shooting gallery. Feel proud for the support you can give. YOU must take control for your life, enjoy, live, love.
Hey so my mum started with walking difficulties and leg difficulties when I was about 15 or 16 but it took her until I was about 20 before she finally admitted she had a problem and couldn’t do everything she was doing before anymore. She started having doctor’s appointments to find out what the problem was. it was degenerative discs and a bunch of different stenosis’s.
She said that since I already lived with her that I may as well become her carer. I kind of just agreed to it because I felt as if I had no choice.
I felt like if I refused she would be mad at me as if I’ve betrayed her and don’t want to help my own mother. So as a result I was obliged to say yes ok I’d do it.
I didn’t really fully want to because I knew that this would spell the end of my life… I knew it meant I was going to have to do EVERYTHING in the house now and ALL the chores and wouldn’t be able to go out and have a life of my own. I knew that dedicating my life to caring for my mum and always being by her side that this would put a huge dent in any potential dating life. I’d already never dated before and hadn’t had any friends since I was almost 17 but I just knew that this was going to make it even more difficult to do that.
I was already not very independent but knew that this would ensure I wouldn’t be able to gain any independence when I WAS ready! It’s been a big struggle because the house is huge and is all cluttered. yes both me and my mum have contributed to the clutter but I’ve been trying to get rid of stuff for years. it still seems to be cluttered because mum still keeps either buying stuff, now online, and keeping all the boxes and packaging and other junk she think will be useful.
it’s been 10 years now and I’ve only dated a little bit, only had 2 boyfriends and very short term long distance friendships. My longest so far has been 2 years. Dating is still hard, tho i have more freedom now I still keep on getting ghosted .
I have 0 motivation to cook, clean and do chores so I spend a lot of time sleeping and my waking hours I spend making cups of tea, cooking for mum, bringing things she asks for and tidying and cleaning the kitchen. I’m pretty sure my mental health has taken a tole
A good parent would never ever want or expect their child to sacrifice their lives for them. Instead, they would want their child to live life to the full, reach all their goals, marry, and have kids.
It is the parent who should be feeling guilty, not the child.
A cluttered house and hoarding are signs of mental illness, anyone with a disability needs a clear and clutter free home. While you keep supporting mum, the problems will continue.
The only way things will change is by YOU taking charge in some way.
It took me and my two strong sons a YEAR to empty my mum’s house! She ended up in a nursing home for the last year of her life.
Yes, i thought that should be the case, my mum has never wanted me to get married or have aboyfriend or any friends. Before I became her carer she wanted me to focus on getting a career before I got myself a man and make sure I had a stable income and savings before I even entertained a man. She didn’t seem to approve of me dating or having boyfriends and when she did (as I managed to have 2 boyfriends which she discouraged) she was cool with my meeting with them but of course with her present as she never wanted me to be away from her incase she fell etc etc .Then because she deemed that I wasn’t paying enough attention to her when the boyfriend was around, she became reluctant for me to meet them anymore. Eventually me and that boyfriend broke up because he was controlling and posessive and would shake his fist at me and start arguments almost every night via text or messenger (skype at the time). after that my mum was reluctant to meet up with anymore men with me so I didn’t get to meet anyone for years, so i didn’t have any friends or date anymore. i would get asked out and mum said i couldn’t go on a date because it would lead to sex and she didn’t want me to have sex.
I dated another guy in secret as he lived far away so we just had cam chats over skype. She told me I shouldn’t agree to be with him. but i did anyway. I can date now. I have more free time since she broke her hip and i have to go out alone for the first time in my life but now nobody is interested in me and I don’t know why. I have trouble maintaining any long term friendships or relationships.
my mum deems herself OCD so she claims its not her that cluttered the house up and messed it up and that it’s me and although its partly true she does buy a lot of stuff that doesn’t get used and most of it is big stuff and paperwork and boxes she keeps… she doesn’t want me to get rid of any of it but somehow magically neated in all up even tho there is just so much of it that even when I try to do as she says and just put it in boxes and stack it up neatly it still looks a mess and there’s no room to actually neated any of it up.
When I’m not sleeping or out shopping she is constantly asking me to do stuff when I’m home. Either chores, cleaning or getting her things like food or cups of tea. i don’t even get free time at night as she’s constantly asking for food and cups of tea or to reheat a cup of tea i already gave her.
I’ve been doing this for 10 years and it’s taken its tole on me and I feel like I don’t really have a life of my own or much free time and i wake up unenthusiastic to get up and do anything.
I haven’t done many fun things in all these years.
I’ve sacrifieced my 20s never dated or had fun with friends like other young people get to do and still a virgin. most men only want me for sex and i don’t want that so it’s hard to find and it’s not my mum’s fault in that regard.
if I don’t get a a boyfriend or a husband by the time im 35 imma have that sex change I’ve always wanted and live as a man and hope to goodness one day I get a wife. and then i can be cared for for once in my life. I feel like a virtuall slave and I want to be pampered for once
You are over 18, you can vote, marry, serve the country, have your own life.
Your self esteem has been eroded because your mother is using you as a carer, companion, slave and punchbag for her conditions and frustrations from them.
That is, for want of better words, terrible.
A man should treat and spoil you when called for and pamper you with a meal out or takeaway or some flowers. You are in a dangerous age group where most of the good men are taken and the ones available may not be quiet so free and are playing away from home or are single for a valid reason.
There will be a few good ones in that mix.
Build your self esteem, appreciate what is good in you and about you in a positive way for yourself.
Respect and value yourself - if you don’t love yourself then it will be difficult for others to love you.
This is your life, none of your mothers business.
She is using coercive control to keep you there, like a period drama story where an old lady has a young companion at her side and is vile to her whilst reminding her how privileged she is to be there!
Just go out, no explanations, no discussion, no negotiations, just go out and do your thing, let her stew in her own juice about it. It’s a need to know basis and she doesn’t need to know.
That’s a boundary set right there.
Take some control for yourself, it is empowering.
Be kind to yourself.
Be your own best friend and cheerleader.
Watch your self esteem build and maybe some confidence come.
Easier said from my keyboard than done in your life but I hope you can do that.
You are human, this is normal human responses and behaviours.
Be kind to yourself, don’t beat yourself up over normal human feelings and responses.
If you have not had a carers needs assessment get one, tell them the toll it is taking on your mental health. If you have an assessment in place, contact them and tell them you need a review as you are feeling a toll on your mental health.
Why do so many older carees sound like narcissists?
I’ve now read a huge sample of posts on a variety of topics and a clear theme in many is an aged person expecting someone to care for them whilst treating them pretty poorly.
Many fit the criteria of a narcissist and many of the carers are near breaking point. How can this be……?
A while ago I read an article which explained that as people become “very elderly”, defined as over 85, they become increasingly “self focussed”. Unable to see just how hard others are working and trying to please them.
One day I saw my disabled mum telling my dad, who had taken longer than usual to go shopping in the large Tesco nearby, that he’d been a long time. Completely forgetting that she hadn’t been able to walk round there herself for years, and dad had terminal cancer!!!
I don’t like the words “Elderly Toddler” but don’t know any better way of describing this sort of behaviour. Probably a mix of all sorts of emotions, fear, frustration, hopelessness?
I know I don’t meet the criteria for depression.
Yes, I get really fed up with the never ending battles with Social Services about the care my disabled son needs, however as soon as I “escape” I’m the same old me I always was.
For years I thought the old me had gone forever, but I flourished again as soon as I went on holiday to Crete.
Non carers go out for meals, weekends away, theatre, pub, but even these simple things are difficult for many carers.
Try to think of caring another way. If you have given 50 weeks of the year to someone because they love and care for someone, shouldn’t that person love them enough in return to give them just 14 days off every year?
If they don’t love you enough, why are you bothering with them?!
Many of the comments I make are passed on from my own counselling. In 2007 I was newly disabled, newly widowed, son with learning difficulties, housebound mum 6 miles away, I had inherited 30 tons of lorry spares from my late husband, which I needed to sell to earn a living.
I constantly felt a failure, worked until 1am to meet printing deadlines. Completely unsustainable long term.
My counsellor encouragedme to feel PROUD of what I was doing, not beat myself up for what I couldn’t do.
I was also encouraged to do something for me on a regular basis.
Ever since I have had a home beautician for a treatment once a month, and a regular hair cut and colour, plus a facial and massage at times. They do a good job, my son gets annoyed when people think I’m his sister not his mum. Recently I went to the town hall for a bus pass form. I was initially refused, as they are only for over 60’s. I celebrated my 70th birthday this year!
Maybe you could have someone visit your home for a treatment?
Jeromiah, I don’t believe anyone here is trying to limit your options. We’re making suggestions based on our own experiences and knowledge, which for most of us will not include the trans experience, in most cases even as a friend or colleague of a trans person. It’s hard to advise from a position of knowing and understanding the caring role but not having the tools to understand the rest of the equation - your relationship as a trans person with your mother.
So we’re all learning here. And that’s going to mean that some of us will occasionally tread in areas we don’t understand may be sensitive. Please bear with us.
As you can’t have any proper relationships in the current situation, I would suggest that for the next few months you concentrate on drawing up an Escape Plan, for your eyes only.
Think about where you are now, where you want to be, and how to get there.
Probably how to go from Totally Trapped to Totally Free?
Start by writing a list on the computer of all the things mum demands of you.
Whilst best summarised as total subservience, break it down into tasks. What drives you nuts most.
Housing, work, money all need to be considered as part of the plan.
Is it ever going to live your own life in mum’s house?
What is your income now? What will you need in the future?
You are not allowed to say to yourself “I can’t because mum…”! This plan is about you, not mum.
However, you can do another list thinking about mum’s Independence Plan.
Is it realistic for her to keep living in the current house?
What would she need?
I would recommend a book called “Starting Again” by Sarah Litvinoff. Written primarily for people separating, it helped me work out what i wanted for my future after I was widowed, and I’m sure it would help you too.
Mum has deliberately ruined your self esteem, but you have been her carer for years, and that shows kindness and compassion, great qualities.
People who are widowed go through a huge upheaval, and it’s easy to grab at anyone who might be able to “fix” things, only to regret it later. The book will help you sort yourself out and build the new life that you richly deserve.