Hi, so since my dad died I have been helping my mum with her needs.
She has physical disabilities as well as mental ones which are getting worse, although her physical disabilities are manageable, her mental health needs are a huge problem.
Based on past traumatic events, she has complex mental health needs and they are very difficult to deal with. She also had a limited education thanks to family putting the care responsibilities of her dying mother on to her age 16. Because of this she has no qualifications.
Her history with her mental health has caused her to be sectioned multiple times over the years, she can get violent and very self-absorbed. In fact she is so self absorbed, she tends not to understand the pain I am in most of the time. It is really affecting my mental health.
One of her main things is being afraid to be on her own. I work full time and its a job I worked hard for and do not want to give it up. Once I come home from work she expects me to sit with her until she goes to sleep then watch over her whilst she is asleep just so nothing bad happens. This is impossible. Other than work, I am not allowed to go out anywhere. I have lost friends and its very hard to maintain a relationship
Dad used to support her and be her carer, but it is a role that has seemingly passed on to me and I do not want it. She had support from the local mental health team and has a care coordinator. The care co-ordinator does not seem to understand the fact that although mum may be intelligent in some ways and capable, she does not understand the type of care they can offer. Mum also doesn’t want to discuss past issues yet, they stated unless she asks for it then they wont do anything. The care coordinator does very little to contact mum otherwise. She now wants to close mums services saying she does not need them. Disgusting.
All this is really affecting me, a huge argument happened and I left the property to stay at my boyfriends house. His parents have offered me the opportunity to move in. I want to be with him. Whilst there my boyfriend has told me I sometimes I shake nervously in my sleep and he is worried.
I do not want to go back. I don’t want to do this anymore, but I dont know what to do.
You need to contact social services and the care co-ordinator and tell them when you are withdrawing your support - you need to give them an actual date. Advise social care that without your support your Mum will need an updated Needs Assessment. Ensure your Mum has the contact numbers for the care co-ordinator, social care etc and then move in with your boyfriend’s family. Be prepared for the fall out and keep any contact with your Mum on your terms only. You will need to be strong.
Once caring for a loved one starts to effect your own mental state of mind, it’s time to let go and let the professionals deal with it. Once you notify them of your withdrawal they have a responsibility of care for your mother.
We all have one life and you need to make the most of it. Selfish as it may sound, we as the sons and daughters of mothers and father’s were not put on this earth to solely take care of them in their later life.
We give as much as we can and help them the best we can, but if they are becoming selfish and not being considerate of your needs then you must let go as a career and become a loving daughter again and then and only then will the resentment go away. Stick by your decision trust me the professionals will have no choice but to get involved.
Hi there I can completely relate to a lot of what you have said.
I am 33 and currently a carer to my mother who has COPD and osteoporosis. We are not even currently sure what stage the COPD is at now as she refuses to have a breathing test done and as done for the last couple of years. She is not currently on oxygen however. Her condition is treated with nebulisers and the occasional course of antibiotics when she has an infection.
She has been separated from my father for some years and I have no siblings. My father doesn’t look near as he’s formed a new life for himself and to be blunt, they’re separated so I get it isn’t exactly his problem. However he knows the stress I have been under and continue to be under as I’ve communicated it various times.
I have been her carer for a few years now but it is only since 2019 that my role has become more. At that time I had a full time job (which I had worked hard to get and had worked my way through the ranks of the company) and I was in a relationship.
Back in 2019 she ended up in hospital with a chest infection and was kept in overnight, I popped home to check on our dog only to find she had passed away in her bed. It was this that started a real downward spiral with my mother, I believe this is where she ‘gave up’ a little.
Fast forward to now 2022, I work part time and other than work I am not able to go out generally - only to the gym which I rejoined for the sake of my mental health, but even then I cannot be out for long. She lives in one room of the house now and has done for 2 years plus, despite my father installing a handrail to make getting up and down the stairs easier. She never comes downstairs.
I walked out last year as I’d had enough, nothing I was saying was getting though and I went to go and live with my partner a good 90 miles away. I was extremely suicidal at that time and I know if I had stayed, something would have happened.
Long story short the guilt ate away at me and I returned in January this year, my mum promised she would accept outside help to give me more balance (something she had always resisted) and that I could absolutely have a social life e.g. go out after work, go for overnight stays. Whilst I was away she was looking into getting another dog, looking at a particular breed that she would be able to tuck under her arm and look after with little trouble. It was after I returned that we rescued a little dog. However when I brought up wanting to go and see my friends for a couple of days, the guilt trips started. Implying I could not leave the dog overnight in her care as she could not cope. Now I feel completely fed up again as I have tried time and time again to communicate that I need more of a balance and my own mental health is suffering greatly in all this. Anytime I speak about it I get comments such as ‘well I feel like a burden now.’ ‘I feel terrible now’ but nothing ever changes as once those comments start I then feel rubbish and back down. She has witnessed me in tears numerous times over the past few months, I have been open that I worry for my future when she’s gone as I’m facing the prospect of having to start all over again in my 40s.
Now I’m at a point where my mental health is the worst it has ever been and I don’t think I can continue this.
I have struggled with depression and anxiety since my late teens, I’ve been on antidepressants for the majority of the time since the age of 19. This is again something both my parents are aware.
COPD breathing test refusal is probably out of fear.
My mother has severe COPD, only 30% lung capacity but she is not on oxygen because her blood oxygen levels are 95%
The breathing tube test is of no use now for my mother, the GP said there is no reason to do it anymore. He listened to her chest on the stethoscope and said they’re down to 30% capacity and there is scarring on one lung possibly from pneumonia or collapsed lung and he offered x-ray to see if anything more sinister but didn’t think there was.
So basically the GP can just ask to listen to her chest and deduce a lot from that.
It is only when the blood oxygen levels are low that they qualify for oxygen
Do you have the finger oxymeter to test her levels?
My mother only has a nebuliser in hospital when she gets a chest infection which hasn’t happened for over 2-3 years now since being on Trelegy inhaler
Ask the GP about Trelegy inhaler if she isn’t on it, it’s once a day and has medicines in it to help guard against flare ups and infections, it has really helped my mother in that sense.
Breathing, my mother has another inhaler, the GP said use them even if they don’t feel like they are working they are helping.
She gets out of breath just brushing her hair or removing her top/putting one on.
Transferring from bed to wheelchair can leave her in a near state of collapse.
Her heart is making up a lot of effort for her lungs.
BUT she will not let it stop her, she has not given up, she wants life, she wants to get out to the garden centre, she wants to be in her chair, she wants to get out and see the garden, see people go by.
She has such a zest for life and to live.
My mum already has the Trelegy inhaler which I believe she’s had for almost a couple of years now. She insists it doesn’t help. So also does monitor her oxygen with the finger oxymeter, quite often it’s around the 95-97% mark. We have been told before that a COPD sufferer can sometimes expect to see a reading in the high 80s and that is classed as normal due to the illness.
Reading how much your mum still tries in spite of her illness has shone even more of a light on my own situation. My mum lives in her bedroom now, she hasn’t been out of the house since well before the pandemic apart from for medical reasons.
Oxygen levels below 88% are a call for the GP or an ambulance call out of hours.
A GP examination will reveal what lung capacity i.e how much of her lungs are working, my mother as said 30% i.e just under a third of her lungs are working.
My mother was saying Trelegy doesn’t make a difference but I told her she isn’t going through boxes of tissues coughing and she isn’t going to hospital with chest infections or pneumonia. Thus it has proved itself!
Your mother is now dependent on having someone to care for her.
Up to a certain point, you are willing to help your mother - especially with her physical health and mobility needs.
The mental health aspects - however - are a much deeper concern and this is something you cannot (and should not) deal with alone.
Over time, your mother’s psychological state has become slowly more challenging - yet perhaps not fully appreciated - until you inherited your caring role.
This will eventually break the fragile relationship you have.
Caring for a dying loved one left a life-long impact on your mother, leading to her dependency on others.
Witnessing your grandmother’s deteriorating health created your mother’s insecurities about health, mortality and needing someone. Any friendship/relationship your mother had in the past will have been affected by a constant fear of being left alone.
She sees a likeness between herself and your dying grandmother, re-enforcing those fears.
The care co-ordinator lacks understanding of your mother’s complex needs, resulting in an inadequate assessment and not dealing with the underlying problem.
Shaking in your sleep could be due to the stress and this is not helping you.
Even when Mother is sectioned…Is that addressing her underlying problems? Or is she just going in…Then coming out…
You don’t want to be your mother’s carer, yet she can help herself.
Your mother can make a start by asking the care co-ordinator for help. She doesn’t want to discuss past issues but this will be the way forward.
She already has a mental health team…It’s a case of utilising this service to find a counsellor who can help with your mother’s situation. Again. It’s about your mother requesting that help.
Problem here. It is the person who receives the care that needs to make that decision - as no-one else can do that.
Ideally. Your mother will benefit from counselling that focuses on the care of her dying mother.
Overcoming this will enable your mother to progress with her physical health.
It would certainly be worth trying to convince your mother to seek this form of help. The care co-ordinator may be able to help so get them involved in the conversation.
There’s also the option of private counselling…Financial help could be available due to your mother’s mobility/health problems.
You have the offer to move in with your partner. Tell your mother that you are accepting this and you cannot go on living how you are.
It’s a very difficult situation, yet there can be some compromise.
Regular visits will benefit your mother and at the same time, give you peace of mind that she is OK.
It is your mother’s choice whether or not to accept help…The help is there if she requests it…Financial, mobility aids and counselling could all be on offer.
Then there’s your job and what it means to you…Your financial independence and wanting to make your own life choices…
Your mother cannot undo her past. However. She has the opportunity to face the future.
Bowlingbun is absolutely right. The legal basis is that the law makes it plain that parents are responsible for their child’s wellbeing, and this is always interpreted that parents have a duty of care. It’s often used as a “reason” to deny parents assistance in caring.
However, parents are also entirely responsible for their child’s learning, and yet schools are provided. “Responsible for” does not mean you have to do it all.
Once the child turns 18, they become an adult. When that happens, there is no duty of care placed on any individual, other than what they decide. No one can coerce you. This is enshrined in law, at least for now.
im in this same boat whereby i have sacrificed my entire youth to become a carer for my mum and as a result i get not much social life or dating life and I’ve not gotten to travel or go on holiday since I was a kid. I’m now 31 and still single and isolated. I only get to go to the local shops as my going out time and sleeping are my only time off. My mum expects me to do everything for her and with no help. she wont get another carer in to relieve me even tho she says I’m a crap carer anyway. she wont have a stranger look after her. it makes it very difficult. she even keeps telling me that one day her problems will get worse and I’ll have to do even more for her and she still wont let me get help. Shes akways complaining and criticising everything I do and says I can’t have a life of my own AND be her carer, I’ve got to choose, but if I choose not to do it anymore I know she will feel betrayed and she will just disown me. what shall i do
You are not a child any more, but an adult. Mum has no right to ANY of your time. You don’t have to do what she wants. Google Coercive Control and Narcissistic personality. YOU choose what you want to do, and what you won’t. If mum doesn’t want carers in, it does NOT mean you do it instead. You have a right to a life of your own. Sadly, we have had others in your position who I have urged to escape.
Hello, thank you for understanding.
Here is an update for you: i have a friend who recently offered me to share her home if I want it. If things become too difficult with mum and she goes off the rails again like she did back last years and a little bit this year when she had severe breathing problems due to a rat infestation and she became very very aggressive and almost physical with me.
Yes, her breathing difficulties made her so frustrated and angry to ME as if the rat problem was my fault that she actually would get up, chase me and one time came at my face with scissors. It was her very first time doing anything like that it was scary. She started getting in my face, grabbing my arms and shaking me as she yelled and screamed inches from my face (that last bit happened a few years ago but the scissors thing happened last year the day before or after my birthday on the 16th june 2021) It was so scary that whenever she gets angry I have to move well away from her.
I actually got that incident on camera because I was livestreaming on youtube at the time. My viewers were shocked, especially my 3 friends who saw it, nobody else who watched seemed bothered at all. was honestly expecting a visit from the police because one of my viewers were concerned and called them.
I was relieved the police didn’t come as if they did mum would question me as to how the police knew this happened and would go ballistic if she knew I was recording.
She didn’t even seem that angry at the time and she came around me and then in my face with scissors. I should probably have left at that point but had nowhere to go and wasn’t aware mum was being abusive. I figured she was so frustrated with me because I did dinner late. It made her breathing problems worse if I made dinner late as she kept yelling at me. So that is my fault I guess. She was the one who didn’t want to poison the rats though. She expected me to get rid of them some other way which I did and clearly it didn’t work. After she finally agreed to my poisoning them, she blamed me and said I should’ve poisoned them ages ago when they first invaded the house! Well duh, but she wouldn’t let me kill them! I only did as she asked. She said I should’ve disobeyed her. I’m like what? If I disobey her, she would get angry at me for that, so what the hell am I supposed to do? I agree she was right, I should’ve gone behind her back and just bought poison and kill the damn things. They’ve ruined our house.
Anyway so the most recent thing that happened was that I had a discussion with my mum and it somehow got onto the subject of my being transgender and she told me that if I’m going to be changing myself and transitioning I can just move out then, she doesn’t want a weirdo living in the house with me, she said. I never said I would fully transition because I knew she wouldn’t like that plus I’m terrified of surgery and permanent body alterations just incase I ever regretted it for whatever reason. I’ve felt this way (trans male) since I was 11 and I’m 31 and haven’t changed my mind apart from brief experimenting with going back to living as my assigned gender.
Anyway I told mum fine then if you want me to move out, I will. She wasn’t expecting me to agree to it and later when it sank in, she started warning me of all the stuff I’d have to know (usually scare mongering) about moving out, such as having no money when I got my carers allowance taken off me. I informed her I could get other benefits. She said I couldn’t get a job because I have no qualifications. She’s right and I wouldn’t want to get a full time demanding job as that would just replace the one I already got and would be escaping from!
She asked me where I’d live, I said my friend in wales offered me her place. She said “well she’ll soon get sick of you when she finds out how lazy and useless you are” I told her she doesn’t care… she would happily look after me and she also has a mother who normally does all the cleaning and the cooking and another “lazy arse” living there (the dad who literally does nothing but play on his computer) as she calls me.
She then started ranting and raving about how she’d have to learn how to take care of herself and do all of the chores (like cooking, cleaning, getting cups of tea, snacks, putting bins out, washing pots, washing and so on) all with her breathing problems and disabilities (she can walk and do stuff but struggles with pain, stiffness and breathing problems due to aspirin allergy and salicylates ) I said that she doesn’t have to struggle alone, she can get carers in. She said carers only come in once a week or day and she needs full time care. I was sure she could get that and with a professional carer which I am not. I am crap at it, as she says, because I was not trained nor is it what I want to do… no offence but for me personally its like being a servant and that is just not for me.
a friend confirmed full time care was available for those who need it and do not wish to be put in a care home.
I told my mum this and she acted dumb like she didn’t know why i was saying this. I reminded her of the conversation we had. Clearly she was hoping I was still bluffing about moving out, even tho it was her idea!.
When I said this she went ballistic again and started doing stuff herself that I’d normally do all the while making passive aggressive, snarky and sarcastic comments about how I’m abandoning her knowing she is disabled, in ill health and have nobody else in her life to help her or for company. guilt trip city.
Anyway I ended up saying “I won’t move out then, I’ll stay if you want, but I still want a holiday for a week or at least 3 or 4 days away with my friend in wales.” she calmed down and begrudgingly said “right” and went quiet. She said “a break from what??? you sleep for 12 hours and go out every other day " I said that may be but I still have to wake up to chores and my whole day is about chores and being yelled at, I may go out but I still have to come home after an hour or so to chores and being yelled at, i need a proper break, for days!” She said “Oh I see so you mean you want a break from ME”
“you, the house, the chores, the area, the neighbours” everything! Just to see what it’s like away from here and being your full time carer!" she really resents me wanting a break. She thinks my outings every other day is enough. I’ve been doing this for a decade with no holiday or official break apart from her version of a break which is my going out for only an hour and getting a decent nights sleep… that doesn’t count does it? So you see. I can’t move out OR have a break without her making me feel guilty about it. I’m not even sure if my friend is serious about putting me up. I know she is serious about letting me live with her family if I get kicked out or came at with scissors again and I’m scared.
At 31 years old you are a grown adult, others your age had supportive parents enabling them to achieve their goals or they had the passion and determination and got off their backsides and went out and worked hard and achieved their goals, they weren’t held back by a gaslighting controlling mother. There are some grandmothers at your age or a few years later if they had early starts with having babies.
Think about what your mother was doing at your age and remind her of that, give her some perspectives that you are no longer her child, you are an adult with your own mind and desires for life.
It seems to be a contradiction of herself that she’s so helpless and then can attack you with scissors.
She might not be as helpless as she has you believe she is.
Life is out there for the taking, it is up to you to leave and take it.
If you don’t want her left high and dry, leave a few days groceries and the social services number.
She will probably survive when she admits to herself that you have gone and she needs carers.
There is no magic wand to wave, it is down to you to take charge of your life and destiny and move out.