The title makes me think of ‘Interview With a Vampire’!
I make no secret of the fact that I suffer from mental health problems. On top of this (or because of this, more likely) I don’t have a very strong immune system which makes me prone to catching pretty nasty colds/viruses/tummy bugs/etc as well as a number of other annoying conditions such as problems with my knee caps, eczema, irritable bowel syndrome, menhorragia, migraines, and acid reflux, as well as long-lasting soft tissue problems in my back and neck from a whiplash injury some months ago.
My ‘level’ of disability, if you like, can vary greatly from day to day, even minute to minute depending on my mental state. There are a lot of things that I struggle to do. Sometimes these things can’t be put off, so somebody else has to do them – and that somebody is almost always my lovely partner. Not only does he have to shoulder a lot of my tasks/responsibilities, but he also has the unenviable task of emotionally supporting me through my health struggles too, as well as somehow maintaining a relationship with me that is fulfilling, and as equal as it possibly can be considering the circumstances. I am constantly amazed by his resilience, his acceptance, his patience, and the sheer love that he gives me. Nevertheless my health certainly impacts on our life together, our living arrangements, and ultimately some aspects of our relationship.
My partner is my main carer, and recognised as such by the local social services. Before me he was a young carer for his late grandmother and then his disabled mother until he moved out of her house in September. This week, June 9th to June 15th is Carer’s Week in the UK and in light of this I thought I would interview him to help spread awareness of what it is like being a carer- particularly for someone like me who is primarily disabled by severe anxiety and depression as for a lot of people it can be hard to envision being a formal ‘carer’ for someone who doesn’t need much physical assistance in their day to day life. I hope this interview helps people to understand how big a responsibility being a carer is, how disabilities like mine can affect someone’s day to day life, and yet also how we manage to sustain a happy and fulfilling relationship together despite these challenges.
Me: When did you start identifying yourself as a carer and how does the use of that word to describe you make you feel?
Him: I’m not sure if I ever had a single point in time where I thought ‘I am a carer’ it just kinda happened over time as my role and what my responsibilities were became more clear. But if I had to say there was a point where I thought about it more so than ever was when you said that I was one for my mother and was one for my grandmother following a row I had with my mother because I felt as though I had had enough of dealing with her. This made me realise that I was doing more than what was considered an adequate contribution to helping someone. I guess I never labelled myself one because I just figured that looking after your relatives is just what you do when they’re unwell and that labels are insignificant.
I didn’t like the label because I didn’t want to draw any attention to myself which I guess was my coping mechanism for it ever since I had been a carer. It also feels a bit daunting because I think when most people think of a carer they think of someone looking after an elderly person 24/7 and with no end in sight. I guess that is pretty daunting but I just get on with things because I know I have to otherwise you may not function as well as you should.
Me: What kind of an impact did your caring responsibilities have on your life as a teenager? Did they affect your wellbeing, your social life, your studies at all?
Him: I really struggled when I was younger. I realised some things weren’t normal like my dwindling social life. But I didn’t realise that some things weren’t normal like my addiction to games. When I was able or allowed to go out and see my friends I often didn’t feel like it because I was exhausted from what was happening at home. My studies were heavily impacted on by everything from stress to lack of time to procrastination to just general lack of interest. I often felt that the little time I had to myself should be spent doing things that I enjoy such as social networking and playing games instead of important things like tidying my room and doing my homework for fear of my head exploding had I not spent that precious time trying to relax and think about other things.
Me: Do you think there is enough support in place for young carers? Where you supported at all when you were caring for your grandmother and then your mother?
Him: No not at all. However when my mother informed my head of year at secondary school that I was struggling at home and at school, I was signposted to a counsellor who I saw once a week. She was very helpful and made a massive difference to my mental health. Had it not been for her I am sure my mental state, which I believe was mild depression at the time, would almost certainly have spiraled out of control. Even with this support I still don’t think there was much availability of young carers’ support, and that may have been partly why I was so reluctant to tell people how much I helped out at home.
Me: Now on to caring for me… can you give the readers a general idea of the main tasks you need to do for me on a day-to-day basis?
Him: This usually entails feeling quite tired in the morning – more than your average Joe that doesn’t have a carer’s role – and encouraging you to get out of bed. If this doesn’t work then I coax you out of bed with breakfast and a cup of tea or coffee. I often feed our guinea pigs when you are unwell too. I encourage you to come downstairs to get out of the bedroom because as great as our little bubble is, the bathroom isn’t in there! Plus a change of scenery is really important for someone who suffers with depression especially even it is just sitting on your laptop downstairs like you would upstairs. At some point during the day I’ll probably tidy the room because a cluttered room means a cluttered mind because a more open space as your mind to feel less pressure in your head. I will often make lunch for both of us also and remind you to go in the shower if it is a bad day because that often makes you feel better. I will also make sure I spend some quality time doing something fun/stimulating like watching something ‘on demand’ on the internet. Most days I must make some phone calls as you can’t make most of your phone calls which is a real drag because I hate making phone calls. When it is time for dinner, I always start to put it on and then I usually cook it if you’re not feeling too well. The evening usually involves doing something something together like watching TV for a bit after eating dinner. After winding down by having some cuddles, reading together or something I usually get your medication for you, or at least get water for you to take them and remind you to take them.
Me: Which of the above tasks do you find the most difficult or dislike the most?
Him: PHONE CALLS!
Me: Are there any positives at all to being a carer?
Him: It is very rewarding to know that I made and am making both my nan’s, my mother’s and your life just that bit better and easier by picking up the slack sometimes.
Me: Does being a carer impact on your own health and wellbeing at all?
Him: As I mentioned before I received counselling from secondary school and during some of sixth form because of the impact it was having on my functionality. I also received some counselling at my university to cope with the greater load of care I was giving when living together, as the greater work load put a strain on this as I wasn’t able to devote as much attention to you. So I figured it would help to have this extra support in place which did help somewhat.
Me: In what ways does being a carer now affect your ability to live your life the way that you would like to?
Him: Well, I would probably go out more to socialize and I bet my games collection would be greater too.. but all in all I still get to do the things I enjoy, just less of it. But I also get things out of being a carer that I wouldn’t have if I wasn’t and it has probably made me a better, more caring person.
Me: Are there any other people or agencies that you feel help support you as a carer? If so, what is it that they do that makes your life easier?
Him: I was very fortunate to have a small but very close network of friends and have stayed friends ever since then and these were kept in the loop to an extent so it helped to have the vent but also a place where I could go that wouldn’t have to deal with everything that was going on. Now though as we’ve all grown up and gone into careers and further education, that circle isn’t as closely knit as it used to be but they are still there if I need them, plus I do have friends at uni that I can speak to as well, just not as in depth perhaps.
Me: Do you think there is enough support out there for carers, particularly young ones like yourself? If not, what support would you like to see put in place for other people in a similar situation for you?
Him: I would say there is more support now but I guess I look out for more of them now that I consider myself a carer. However, what I assume is down to funding, I think there is very much a lack of reaching out to people who are in those positions. Especially when I imagine that most carers are like me – they would rather just get on with things than tell the whole world about it.
I would like to see more presentations done in schools to make young people more aware of the struggles that many people face, as well as the fact that there are many people who are probably sitting there listening who are young carers sitting amongst the people listening and don’t have a clue. It is especially important to have those who are carers speak out for those who can’t speak out themselves to help them understand that they are not on their own, and to make people who aren’t carers realise how hard it is .
Me: Do you think that there is stigma attached to being a carer and if so how do you think people can help to reduce it?
Him: I grew up not really telling anyone and I don’t think my friends realised that I was either, having said that they’re a good bunch so they wouldn’t have excluded me if they knew I was a young carer since they were so good with regards to asking me every time to come out even though 4 out of 5 times I couldn’t. However I imagine there is stigma associated with it because I find a lot of people just don’t care about dealing with a person that doesn’t have a peachy perfect life so they can complain about things like the weather instead of things that actually matter like how a carer copes with doing what they can for another human being day in day out.
Me: How open are you with other people about being a carer and about what exactly that entails? Do you feel comfortable talking about it? If not, why do you think that is?
Him: Well I certainly don’t use it as a conversation starter but once I get to know a person more I do tell although I never used to… I guess as you become more okay with the fact that you are a carer then it’s just a natural progression of openess once realising that, if you associate yourself with the right people, the more you tell the better because then they can be more understanding and accommodating.
Me: How do you manage to maintain a positive relationship with a spouse that you are caring for? Do you have any advice to people in a similar position to you who may be finding it hard on that front?
Him: Well it has been challenging, and there have been times were I’ve felt I’ve had to question whether this is what I really wanted. I remember having felt that way and then meeting you later that day and seeing your beautiful smile and feeling your warm embrace when I met you and that made everything alright again because it reminded me that more often than not you bring me more happiness than I ever had before I met you.
My advice therefore would be for people who are in my situation would be to try and clear your head from everything going on and have a good think about whether you have more happy times with your partner than unhappy ones. If you are more unhappy than happy then, as it hard as it may be, you have to look after yourself at the end of the day and if that means that someone has to pick up the slack then that’s what you’ve got to do. But I would definitely make sure you could put whatever in place for them so that they have the right support for when you leave to make sure they can cope.
Me: Would you consider going into work/career that involves caring responsibilities in the future or do your caring experiences put you off that kind of work?
Him: Well I’ve wanted to be a doctor since I had my appendix out and that was when I was around 12 and my caring role didn’t become as weighted until my nan had her stroke and I never stopped wanting to be a doctor. However, as much as I’ve been told I would be really good at working with specifically mentally ill patients, I believe it would be too difficult, especially after my brother had a work experience as a part of his psychology degree at a psychiatric health care center and found it incredibly difficult to be there.
Thanks very much to my husband for his co-operation in this post. 🙂