A couple of days ago, it was World Mental Health Awareness Day. I should have posted this then, but to be honest, I chickened. This is personal stuff, and whilst I know everyone reading and likely to comment is lovely, it's still hard putting it out there. Part of my list of things I want to achieve in the next years is recording stuff about my mum. So here goes. In at the deep end.
People who have been reading the blog for a while, or who know me 'in person', will know that my mum died when I was 21. Some of you know that I was her carer. A small minority know a little of what I am about to tell you - and I'm writing it both to give and inside but outside (since I wasn't the one with agoraphobia) point of view, and so that people are aware of how it affects the people close to a sufferer (that's the wrong word, my mum was incredibly strong, but I can't think of the right one). If any of this sounds a bit 'woe is me', it isn't supposed to. It wasn't a bad or awful experience for me for the most part, it just was.
Before my mum developed agoraphobia (fear of outside) and crushing depression, she was a brittle diabetic - which means that even with medication and monitoring, her diabetes was hard to control. She was also somewhat calcium deficient from having me. My early memories of my mum were of someone constantly doing things - baking,cooking, reading to me, organising a mother and toddlers group, taking us for walks, running around with us. She was sociable and had lots of friends. I say early memories because when I was eight, my papa died. He and my mum were very, very close, and it's about that point she began to get ill. I was little, so I don't remember everything, and now It really annoys me that as a grown up I didn't ask, but I assume that the initial depression was a reaction to grief. Slowly, my mum went out less. Sometimes we'd be downstairs playing (I lived with Hazel, her dad and her sisters and brother as well as my mum) and she wouldn't be around for a bit. She explained to me when I was about 15 that she locked herself in her room so we couldn't see her having panic attacks. When I was 10 (I know this only because my birthday was during the time), she spent time in a psychiatric ward, and on the day of my birthday, going in to visit her, I heard the doctor (rather too casually I now think) tell Hazel's dad she had thrown a tray across the room.
Occasionally I tell people these things, and I can see them thinking 'how awful' and in my head I'm thinking, It wasn't a picnic, but my mum was always my mum. There is this misconception that people with mental illnesses stop being them, stop being coherent, are violent. Other than the incident with the tray, my mum was never violent. She was still her. She loved us, and did her best to look after us (As you can probably tell, I am alive, healthyish and unscarred, other than from my own clumisiness). Personally, I think you have to be pretty lucid to be having the beginning of a panic attack and think 'this will scare the kids, I'll just go upstairs'. She still made a fuss on our birthdays, she still read to us, we still baked. She just couldn't go outside.
I actually mean couldn't. She'd be at the door, trying to leave, and not be able to. Shaking and hyperventilating, and crying because she so wanted to do important things with us and she couldn't. Sometimes, even though she was terrified, we'd go out. If things were all organised, and she knew exactly what the plan was, and there was a routine, she could do it. As well as the fear of going outside, my once social mum really did not like being around people she didn't know. With family, and with long time friends, she was the same bubbly person, but she clammed up with strangers. This meant that when the question of additional help came up, I automatically said no. I took on the role of carer - though I think it's a bit odd to even give a name to looking after someone you love, it's just what you do. I partly took on care of my sister too - cooking dinner, going to parents' nights (odd when you attend the school), looking at her homework. It's an odd thing, being 18 and trying to work out if you can leave your mum and sister at home so that you can go out. The upside of this was that I spent a huge amount of time with my mum, and now it's something I'm really grateful for.
One of the side effects of agoraphobia is that mum's muscles tensed up to the stage that her stomach was rock hard, and her spine curved. This, bones lacking calcium and diabetes lead to her physical health deteriorating pretty quickly. She had been seeing a psychiatrist regularly till I was about 16, but they eventually actually said she wasn't going to get better, and focussed on trying to balance (maybe not the right word) out her condition. So, it was maintained at a level where she could almost function, but it and her other existing medical problems were causing her to get more and more ill.
In the last three years of her life, my mum spent about 6 weeks per year in hospital. Once she had a hypo so bad she went into a coma. She also fell over and broke her hip, and it was replaced. As you can imagine, these things are not encouraging when you are already afraid to leave the house. On a day when I had an exam and she had a hospital appointment, she worked up the immense courage to go on her own,but she tripped, and her movement was so limited that she couldn't get back up, and it completely squashed the achievement for her(fortunately, we live in a village where everyone knows everyone and she was helped very quickly). BUT SHE TRIED. When I hear people flippantly make fun of ill people, I want to scream 'you don't know what it took for them to be outside!!'. I have occasionally said this to people. I am going to say it more.
I became 'primary carer' in our house then. My mum could barely move. Her bed had rails so she wouldn't fall out, and I was at points so afraid she would that I didn't sleep very much at all. I did all her personal care. I can't say I was always very gracious about it. Right before she was taken into the hospital for the last time, I was stressed and hormonal, and very flippant and rude to her. Not my best moment. For about a year, she got a little better, and would walk around in the house, sometimes walk along to my nana's house (she moved out and along the road), do a bit of cooking. Through all this, with us at least, she was still bright a cheerful, and made jokes and sang (badly, which I inherited) . I really think there came a point where she was only still alive because she loved us. I can't imagine how she felt inside, having been so on the go all the time, so vibrant, to be so debilitated. This is what I mean when I say she was strong. She was terrified, and she kept going. She got more and more ill, and she kept going. She broken her hip and couldn't move properly, and she kept going. People have a perception of mentally ill people being weak or in some way feeble. My mum was not weak. She was the strongest person I have ever met (the second being my sister). She struggled, daily for 13 years with crushing fear and doubt, and she kept living to the extent that her brain and body would allow her, and she frequently pushed herself to break point for us.
The last time she went into hospital, she was unconscious. What we didn't know was that the pin holding her hip together had moved in the joint, and she had septicaemia. She regained conciousness for a bit before they took her into theatre to try and fix it, and the last thing she said before she went in is 'I'll be ok, I don't want you to worry about me'. This ended up being the last thing she ever said to me. Again, strength, and love.
I know a little, tiny bit about this fear. A couple of years after my mum died, I had delayed grief reaction, including depression - at least that's what the doctor diagnosed. And I wasn't afraid of going outside, but I was so, so afraid I'd get that ill. And with some help from Dave and some crying and some very bad days and a lot of talking, I got better. Few people noticed I was ill in the first place.
Throughout 13 years of my mum being ill, the thing that bothered me most was the assumptions people made, the things people would occasionally shout when we were out. My mum was not a 'junkie'. She was not 'a psycho', she was not 'mental' - at least not in the way people use it. She was someone fighting very, very hard to get past something that was crushing her, and to look after her children. I think people forget when they see people talking to themselves on the street, or being a bit ranty, or looking a bit gaunt and vague that those people have their fight to fight, and that they have families who are trying to get through it too.
For my part, I hope I learned a lot about being strong and empathic. I certainly learned that I mustn't take things at face value.
There are thousands of children and teenagers across Scotland and the UK caring for parents and siblings with health problems. You can find information from The Princes Royal Trust for Young Carers, which my sister was a member of. They provide respite, councelling and a way to make friends for children who have a great deal of responsibility at a young age.