Hi, I'm new to the forums.
My mum was diagnosed about 6 years ago, I'd just turned 18. I went off to uni and didn't think about it. I was such a typical idiot of that age. I still am an idiot. Mum and I had a rocky relationship while I was growing up and I was so excited to be out in the world on my own. I saw her very rarely during my three years in Manchester. Our communication was mostly phone calls, or frustrating Facetimes where mum would say "hello, how are you" over and over again as if it was a form of conversation. I know she was just reaching out, I know I'm selfish, she just wanted to know what was going on with me, I don't know why that's so hard for me to grit my teeth and be tolerant, that's what you are supposed to do!! Why did I act like an overgrown baby, why do I feel like I still act like that?
Mum is from Saudi, so she spent large chunks at a time over there when I returned to London from uni and started working. I knew she was deteriorating more and more every time I saw her but never thought much of it. Complete denial I guess - it was easier to ignore. We didn't talk about it, we hardly talked at all, like two strangers living together. I tried to bring it up and it was always "we'll take it day by day", which I found so frustrating, that undiscussed, unknown future. She still says it now, when she can get a sentence out.
The other day I tried to talk about everything AGAIN, and she simply said "I feel nothing". I don't know. I know her mind is sound but she is so vacant. I know it's part of the illness, to appear detached, to feel depressed, to appear apathetic. I'm not surprised, this disease is her worst nightmare. It's everyone's worst nightmare, but hers especially. She has always been staunchly independent, proud and self-reliant. The thought of her daughter, or ANYONE, having to look after her must be agonising. She raised me on her own, completely isolated, and she really struggled. I don't know how she did it. She's dealt with alcoholism and depression in the past. She's addicted to Zopiclone, I know she would have trouble sleeping otherwise because of the pain but her dose was unnecessarily high from the beginning, and I tried to help but she was stubborn as an ox. Bloody hell it's been a long time since I argued with her about her dosage. I've just accepted it now.
She was always very protective of me. I'm an only child. It was always about me, this constant and intense focus. I don't even know who she is. It makes this illness hard because we don't have this connection. She has got an interesting but upsetting past, which she doesn't talk about, I've gleaned bits and pieces from the few members of her family who maintain contact with her. When she married my dad, an English man, she was ostracised from her family for about 20 years, even after they divorced when I was five. She remarried a Saudi guy recently and has been "accepted" back, but I hardly know any of her family and Saudi seems worlds away.
Her care package was abysmal last September. Over 5 years into the disease and she was still on the same care hours as 3 years in. She was getting about 5/6 hours a day, I was helping a lot with going to the toilet, putting her to bed, feeding. She kept going back and forth between London and Saudi and it meant she was never here for long enough to get correctly assessed and form relationships with the physio/SALT/social worker. So last July I said OK, you're staying here now, we're going to sort everything out. And we did. Battled for months with the social worker, the funding panel, so many forms to fill out, so many different carers coming in, having to train each and every one of them, carers stealing from mum, carers being rough, impatient, me losing my temper, me repeatedly vocalising how I was unable to bear it, mum watching on, helpless and silent.
I've had problems with my temper, I just lose it, I can't control it. I've given up alcohol, sugar, and the contraceptive pill to help stabilise my moods and it has helped. I work two jobs and that keeps my mind active. I walk as much as possible. Some days it's fine, some days it's so difficult to wrap my head around, so difficult to keep going.
We have got more hours now. We also have a private carer who used to come in 8 hours a day but on a reduced rate, last night she said she can't do that anymore, she needs a raise, which I completely understand, but we can't afford it. So she's on 4 hours. It's still enough I think together with the council's care package. But things still don't feel manageable somehow. I'm not helping at all anymore with care and am somehow finding it harder to cope. The choking is a problem at the moment. I've had to physically fish food out of her throat, and one of the carers had to give her the Heimlich the other day. She coughs and splutters on water and the wheezing that follows, the sound of it, that breathlessness, I can't stand it.
She wails during the night. I looked it up and it sounds like a muscular thing, the cords relaxing during sleep which causes the sound but that noise I find so harrowing. It wakes me up at around 4am every night and it's unbearable.
I referred myself to the local counsellor and hopefully speaking to someone will help. It's so ironic that both my parents are/were psychiatrists. Hopefully I will somehow be able to put to rest the issues I feel have gone unaddressed with my mum so that I can make things more bearable for both of us. I've tried to talk to her about everything but she is in denial of us ever having a difficult relationship and won't talk things through. Maybe I'm not communicating properly either. Perhaps it's better to just try and move forward rather than somehow "fix" the past through blame game. I know how important it is for me to just bloody grow up and get on with it. I know my mum loves me. I'm sure I love her, that's why I can't leave. Or maybe it's guilt. I don't know. I feel better for writing this all out. I feel like I want to be less selfish. It's so easy to get wrapped up in myself and ignore how it's probably tenfold more horrible for her. Sorry for the massive essay. I'm trying!