Hiya,
I’m 22 soon and have been mum’s carer for the last couple of years. Mum is 59. She has Rheumatoid arthritis and Neutropenia so has been quite unwell (very swollen joints, barely eating, no energy, high risk of infection).
I live at home with mum so I am her 24-hour carer, I don’t get any support for this (emotional or financial) despite also having sleeping problems and worsening depression. I really can’t cope with looking after her as I’m needed throughout the night to either lift her out of bed to move her to the commode or to get her a drink if she’s coughing a lot.
Sometimes she exaggerates, texting me to say she’s been screaming all night when I haven’t heard a thing (I sleep very lightly, if at all and run to her if there is a slight noise, both my auntie and boyfriend have stayed at mine with me and neither heard mum shout) and she’ll say she couldn’t reach something minor, e.g. the telly remote. - bearing in mind that I’m on edge all the time which has made my anxiety worse, I also have very frequent tension headaches and a sensitive, tense back which can lead to very sharp pains when I move. Causing me to panic for something minor and have ongoing very high stress levels.
However she does not communicate when it’s something serious, last year she had pain in her back and seemed to struggle more than usual but kept saying it was nothing, cancelling GP appointments I had made to get her checked over. After having a stern word she finally agreed for me to take her to the doctors, for the doctor to send her to A&E and for her to end up in hospital with pneumonia for about two weeks, only to have no support in place after being discharged (so it was immediately on me again). I used the time when she was in hospital to redecorate her room to make it cosy for her and I painted the kitchen only for her to not give a single thanks and telling me to pick her up within the hour when the flat was upside down (she was aware I was making the flat better for her and knew I would have needed notice to at least shower and get to her).
She has very angry outbursts telling me to die or to ‘f’ off which makes it even more difficult to care for her when I can get suicidal anyway and am trying everything to not get more unwell. It’s hard to juggle caring for her as well as fitting in shopping (I don’t have a car, she gets funny about deliveries and I need to get a weeks shop from the corner shop which is not only more expensive but very heavy so I frequently overwork my back).
Mum keeps calling my auntie round who is already caring for my grandad and has her own mental health issues. When she is here, she makes it more difficult as she is very heavy-going, thinking the worse and completely disregarding me.
I’m not being selfish, but I need to try to care for myself at least the bare minimum. My auntie will say “what does your mum want for dinner, what does your mum want over the shop” but I feel irrelevant to my family. When my boyfriend stayed down with me, I was still caring for mum but if things got tense or stressful or unbearable he was there to support me (we don’t see each other often due to money and distance (Liverpool and Portsmouth)) and made me feel valued. He made sure I was looking after myself and gave me much needed hugs. I was in tears last time he had to go home, not because I didn’t want him to go, I know he would have had to eventually, but because I didn’t want to go back to being insulted, disregarded, to having a huge crash with my depression. Both my auntie and mum find that I’m incapable of sorting appointments, being very patronising and condescending when if it wasn’t for me sorting things out, she would probably have passed away by now due to lack of self-care and my auntie thinking she knows best when she doesn’t. It’s hard to care for someone and to exist in a family unit where you might as well be invisible.
In an ideal world mum would be in a home with round the clock care (or at least a nurse who is always on call) as she doesn’t listen to me when I know she needs medical help and she refuses medical help or patient transport. I know she feels awful being so unwell and I know she’s frustrated that she can’t do anything but I can’t help her any more than I already am unless she lets me get her the help she needs and works with me rather than against me or ignoring me completely.
Sorry for the long post, I think I just need advice? Either for services that might be of help to either of us or just any guidance from someone else in a similar situation.