Walk a Mile in... Anne-Marie's Shoes
Anne-Marie is 31 and is a full time carer for her husband, Adam, who has mental ill health. She also has a 12 year old daughter with autism, 3 year old Phoebe and, since recording her story, has welcomed baby Libby to the family. Listen to Anne-Marie explain how Adam's mental health problems have affected the family's everyday lives and how she has learnt to take things day by day.
Listen to Anne-Marie's story to hear what it's like to walk a mile in her shoes. Or you can read her story below.
"I’m Ann Marie. I’m 31 and I became a carer in 2016. Adam had had a period where he wasn’t very well mental health wise and then he had a break down, meaning that he was signed off work, he was hospitalised.
"We have had all sorts of things. We have had crisis teams trying to section Adam, we have had people prescribing him the wrong medication and giving him diazepam which was causing a bad reaction. We have had psychotic episodes, which, when it was really bad would be every hour or so during the day, and the slightest thing would set him off. You know when you have anxiety and you are in your own little world, you are that busy worrying about things that a slight interruption will make you grumpy? It was like that but on a massive scale.
"We had social care involvement with the children, we had safety plans, we had all sorts and it was only really after Adam had been in hospital on a psychiatric ward that they started to realise that some of the medication was part of the problem. They had been giving him the wrong sorts basically. Then after multiple suicide attempts they started to realise that there was more going on, because we had been told ‘it’s just depression’, but it’s definitely not just depression. Must have been about 18 months by that point, before we had even really got anywhere.
"They started then looking at things like hallucinations, paranoia and delusion and what was causing them, and how that was linked to the anxiety, and started actually treating him for the root cause, which made things gradually get better. To begin with they knocked him out instead of really dealing with anything. Then last May/June sort of time, they hit on the right medication that seemed to help during the day but it means that Adam has really slowed down.
"Things like going shopping is a massive challenge because my three year old is well, you know, is like gone, so you have to chase her around the shop and Adam is sort of 10 minutes behind you wanting to talk about what items we need, and its challenging.
"At home the biggest challenges have been sleep, because I have had three years of huge sleep deprivation. I have been getting 90 minutes a night, and that’s been broken, because until we moved here quite recently, me, Adam and Phoebe were all in the same room because my eldest daughter has got behavioural issues. I would be up with Adam settling him in the night, and I’d be up with Phoebe settling her in the night. It was only when I bought a blow up air bed this time last year, and put it in between Adam and Phoebe’s bed and moved into that one (which caused huge psychotic episodes because Adam thought I was abandoning him), that I started to get really any sleep at all and if Phoebe was upset in the night she would just crawl in next to me. I stayed on that air bed until about a month ago when Derbyshire Carers gave me a grant to buy a proper bed.
"I am 32 weeks pregnant and the horrific amount of stress and sleep deprivation has not been easy in the slightest. It’s knowing what to do when you are dealing with a psychotic episode, the paranoia and delusion is that intense that they then become aggressive, but you are the only one that can calm them down, but you want to be as far away from them as possible because of what is going on.
"Your life is so heavily restricted because of it and nobody gives you a handbook that says ‘if the person you care about is doing this, then this is what you do.’ You have to make it up as you go along and keep everyone safe at the same time.
"Having all the battles with health care stresses you out because you feel like you’re losing it, because you are the only one that is fighting for it and seems to understand that there is more going on. It was hard for Adam to know what was going on because he was just in the middle of it all.
"For a long time now, because of what Adam had been through, Phoebe won’t go to nursery because she doesn’t want to be separated from me because I am the only one that’s looked after her. Until fairly recently she’s been having night terrors, she doesn’t really go to anyone else and when Adam was really struggling, she wouldn’t go anywhere near him, she was just so freaked out by the whole thing. It’s only now that she has a normal relationship with Adam, that we are kind of getting back to normal.
"My family sort of understand a little bit because they look after my grandad, but they are limited in what they can do because they work long hours. They don’t quite understand all of it. It’s taken us a long time to get to this point, for them to understand some.
"Sometimes I feel like I’m failing miserably, half the time I feel like it’s my fault. If I’d have handled it better then maybe Adam wouldn’t be quite so poorly. When Adam was really going through the roughest bit I couldn’t even sit near him on the sofa because that would freak him out. It was just me and the kids, trying to cope, because it was just too much for Adam, being anywhere near him was too much for him. I couldn’t talk about me, I’d try every so often, saying ‘I’m really struggling with this emotional thing, can I talk about it?’ and Adam would look at me and say ‘no, I’m not up to it’. It was lovely that he was able to be that honest but it wasn’t what I needed and there was nobody there that understood in the slightest.
"I had loads of people including my family and the small amount of friends I did have saying, ‘how come you are still there, why are you putting up with this, what are you doing?’ That makes it even harder because you the feel guilty about yourself even more.
"Adam’s family don’t have much contact with him at all because they can’t cope with it and so it is just me looking after him. Me doing everything and trying to hold it together at the same time. The strain of it has got that much that I might start to fall apart.
"My community midwife has not grasped the idea of caring whatsoever. I have been saying for weeks that I really need a special plan in place for when I go in hospital, for the labour, for the birth. I need to look at having Adam’s medication being reviewed because he is out from about 9pm, when he has his tablets, until about lunchtime. If I go into labour in the middle of the night, we don’t know what is going to happen. I am not going to be able to wake Adam up, he is not going to be able to look after the children, and he won’t be able to be there with me. We can’t even share a bed because once he gets into a certain position his body won’t move, it’s like concreate once he has had a sedative (so I can’t wake him). I have managed to get the hospital to listen a bit more but the community midwife just says ‘oh, we will talk about it next time, you don’t need to worry about that stuff at the minute’ – that’s not helpful.
"We don’t even share a bedroom now because Adam is asleep that much, and that sedated, that I have ended putting my bed in with Phoebe and that is where the baby will go when she comes. I will have my bed in the middle and their beds either side. I’ll just be doing everything on my own all night.
"It sounds daft because doing all the physical stuff on your own is not much fun. Having to organise everything and deal with all the paperwork, stuff that you are not always up to but you don’t get much choice, but having to deal with all the emotional stuff on your own, having to be there to support somebody else (is the hardest). Who can I talk to about what I am going through, I can’t just ring my mum, or my brother, or a friend because they are not going to get it, they’ve not been there.
"The lack of having a proper partner relationship, and there are that many physical side effects from the tablets Adam is taking means this little one (baby) is nothing short of a miracle. My family will say, ‘you didn’t ought to be doing these things’, and ‘you don’t want any more children.’ She wasn’t planned at all, that’s just another humungous curve ball I have been thrown, that in lots of ways I am dreading to be honest, and I shouldn’t really be feeling like that, it’s just that it’s going to be such a big deal for me and a huge amount of work and pressure. Phoebe is really looking forward to it, she can’t wait to be a big sister, fingers crossed she won’t mind sharing mummy.
"We moved here just before Christmas, having managed to give up rental accommodation and get a council house. I had to plan the move over about two months to allow for Adam’s health and my eldest daughter’s .Trying to get everything done on top of looking after everybody, doing all the child care on my own and everything, to then plan the house move as well, pay bills on two properties for two months trying to make it all work.
"We were really struggling, didn’t really have enough money for Christmas, so having to sort that out on my own because it’s too much for Adam, means even the happy things aren’t really happy things.
"I took everyone to a play centre a while ago, and everyone else was able to have time off, but I was busy looking after everyone and running around like a headless chicken. I am crumbling under the weight of it, I’m mentally falling to bits, it’s incredibly hard.
"I don’t know what we are going to do, I am going day by day at the minute, just trying to get to the end of the day in one piece without falling to bits. If I get a bath, it’s a good day, on a not good day I get baby wipes and dry shampoo. On a good day I get some sleep, on a bad day I’m up having loads of nightmares. I guess just keep on getting through the days without any major intervention, without me going into hospital or anything. I guess in an ideal world they will find a medication that doesn’t sedate Adam so much and he will be more himself and can actually have a life again. There are so many things that could go wrong that even the birth is being planned around looking after everyone else."