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Thursday, 20 March 2014

Guilt Of Independence

"Independence can give Carla something 
that you and I will never be able 
to give her, dignity." 
The Other Sister

Independence is always something I've wanted, but never something I've properly striven for. I guess I never really knew what independence even meant for someone like me. I wasn't sure it existed for a person who requires help for the most basic things, like getting out of bed, getting dressed, cooking and the bathroom etc. I always figured if there was such a thing as independence (from my parents at least) it would come in the form of a knight in shining armour, who'd come and rescue me from my.. bungalow. Not that I assumed whoever I'd end up with would be my carer and take over from where my family left off, that's the last thing I'd ever want. It's just moving out on my own like a regular fledgeling adult never seemed possible.

I'd be lying if I said I didn't struggle with this. I've had bouts since I was about sixteen where I felt very trapped and smothered. Even falling into a bit of a depression at points, and developed a weird relationship with food because I lacked control in almost all other areas of my life. I think most people on the cusp of adulthood start feeling like that to different degrees. For a lot of people they escape when they're eighteen and they go off to University, which was another thing I never fully considered as an option. Or if not, people just generally grow up and move out when they can. As much as I wanted that, and hoped for it and maybe even assumed like I said that someone would rescue me, it still felt like I was going to be stuck here forever. I felt like I was never going to have any control over my life or where it was heading.

This is partly where the guilt comes in, because I know I sound really ungrateful. I sound like all I'm doing is complaining, when really I don't have it bad at all. That's not what I'm saying though, I am grateful and I know I'm lucky, but everyone gets to the point where they need to grow up. I can't rely on my parents forever, because they're not going to be around forever. And there's a certain amount of anxiety that comes along with that, not knowing what would happen to me if tomorrow I didn't have my parents to take care of me. Not to mention the anxiety behind feeling like a burden to them in the mean time, even if they don't view it that way.

Like I said though, I was never really aware of any options other than living with them. None that seemed possible. At a time where I was particularly feeling low about the whole thing we approached my Occupational Therapist about getting some work done to our house. Initially my parents wanted to buy the house we live in from the housing association we rent it from, then hopefully build a separate little granny flat for me out the back. Sort of like my own part of the house, where I could have my own space and make my own rules. This felt like a good compromise, however my parents were priced out of buying the house and the housing association who had adapted it to make it wheelchair friendly for us moving in, couldn't afford to do the adaptations we were hoping. In the end we compromised and they were going to make my room bigger, put in an accessible bathroom and give me a low level work top in the kitchen. I accepted, thinking this was the best I was going to get whether it was going to fix any of my anxieties or problems or not. There was also a bit of pressure from my parents who thought it was great, and I kind of just went along with it. There was a lot of anxiety for me surrounding the adaptations because we had to move out while the work was being done and I was worried what that meant for my cats. It seemed wrong to put them through that when it wasn't really going to fix anything. It wasn't going to give me more independence or privacy. I'd brought this up with my family and the fact I didn't see the point in going ahead with it, but all it had done was cause arguments because my parents really wanted it. So eventually I just kept my anxiety to myself and let it build.

I had attempted to look into independent living for disabled people on a number occasions, but it was one of the few times the internet didn't really give me much to go on. Then I met a girl on Instagram with the same disability as me, who'd been living independently with the aid of paid carers for a couple or so years. All of a sudden everything seemed a little more possible, even if she lived in America. I knew the system here in the UK was probably different, but at least I knew it was physically possible for someone like me to live by themselves. This was very encouraging, but also made me more anxious about the work to the house. I was worried if I had this complete overhaul to my house that it would go against me if I did want to move out. They had asked me when they agreed to do the work if I definitely planned to stay in this house and I had said yes, not knowing there was really any other option. That really hadn't sat well with me. I felt like I'd sold my soul or something. My parents said they couldn't make me stay here, and it wouldn't make it harder if I ever did choose to move out. At this time I had no idea my parents never actually thought I'd ever move out (my mums own words).

I thought a good start might be to look into getting a care package. Even if I was going to have to stay with my parents, I thought it might be a good idea to get used to someone else looking after me. There's a huge difference between having family look after you, and having paid carers looking after you. Family don't have a rule book or set times to do stuff, paid carers do. My parents aren't getting any younger, my mum has back trouble and my dad has heart trouble. It weighs a lot on me that I could be causing more damage to them. Or that one day they won't be able to do that stuff and I'll be forced to get used to outside carers. So I decided to take the bull by the horns. I contacted a local friend and asked if she had any experience with outside carers. She said she had and that she had been living in halls at University, away from home for the last three years. I told her of my plans, and she really encouraged me to look into moving out. I guess my talk with her watered the seed that had already been planted.

In the end I got up the courage and I told my parents about my talk with my friend, how I wanted to look into moving out and that I wanted to talk to my OT about the work getting done to my house because I wasn't sure I wanted it anymore. Especially if it was going to have a negative impact on my future. My parents agreed to let me talk to my OT. They were a little inconsistent with their support, but the important thing was that they were going to let me do it. And what's more, they let me talk to her on my own.

Yesterday was the day I had the meeting with my OT. I think it went really well. I was kind of shocked. I hadn't actually met her before so I was very nervous, but she said I spoke really well. People never seem to notice my social anxiety. Anyway, I was kind of surprised how fast things are moving. I thought we were just meeting for a chat. I told her my concerns about the work and how I wanted to look into moving out. She confirmed what I had thought, that it would go against me considerably if I were to get the work done to our current house and then decide to move out. Later my mum said she still didn't think that was true, but I think it's safer to follow what the professionals say and plus not having the work done is kind of a load of my mind. I told her my interest in moving out and getting paid carers etc and she was very encouraging and supportive. She said the first thing we'd have to do was call off the work which was basically just about to start. So I guess I really called her just in time. I explained to her that this had been on my mind for quite a while, but the delay in bringing up my concerns was partially to do with getting my parents agreement. My parents had actually thought it would look worse if I pulled out of getting the work done, rather than if I went through with it then wanted to move. She told me once she let them know I wasn't getting the work done, I would have to call the housing people and ask to be rehoused. Then she would also refer me to a social worker and they would help sort out my care needs. She also planted some seeds to think about, and suggested I think of what skills I need to live by myself and start to acquire them. Things like calling people, laundry and going out by myself and such. I also brought up the possibility of my sister moving in with me, and she said that might be possible. I, by no means want my sister to be my carer and I made that clear, just I thought it might be safer to have someone there at night and my sister and I always wanted to live together for a while anyway. By the end of our discussion I felt a little more clear on everything, I felt like a weight had been lifted off since she was calling off the work. And I also felt better because I knew my anxiety about it had been justified. I felt like I had finally started moving on the road to independence, or even just a journey to figure out what the future meant for me. I know I'm right at the beginning and living independently might never happen, but if I don't try I'll never know. And they do say you regret the things that you don't do.

And that's what I'm trying to hold on to. That I need to do this for me, and I'm entitled to grow up at some point. It's just there are so many strings attached, and my decisions have a domino effect on those around me. Our house, my mum losing the money she gets for caring for me and my dad losing my car (which I paid for) because legally it has to stay with me. And that is part of the reason I'm doing this, because I truly also feel it will benefit both me and my parents to cut those ties we have looming over us. I know it will be difficult in the short term, but in the long term it will make everything less complicated. My affairs will be mine, and my parents affairs will be theirs. There will be none of this confusion.

My OT phoned me today to give me an update. She said she had spoken to the man who is to do with getting the work done and told him the change in situation. She also asked him who I needed to contact in relation to rehousing and he said he'd get back to her. I could tell my mum was taken aback that she didn't ask to speak to her. And I understand why it's difficult for her, when she's so used to dealing with these people and being in control, that I'm taking this control back. My dad has barely spoken to me since yesterday (I might be being paranoid, he might just be tired from working), and he apparently keeps bringing up our old house we sold to be able to move here. He thinks the move was pointless, despite the fact we've lived here eight years. The house has been pretty tense and everything feels a little awkward, I'm pretty sure my mum has been crying a bit too. Although she came into my room tonight and had a chat and she seems on board again. I think on some level my parents are taking it a little personal too, like their care hasn't been good enough and that's why I want to leave. So there's all these mixtures of emotions and thoughts and that's where a lot of my guilt stems from. The fact that me wanting my independence has completely turned their worlds upside down. And even though my rational side really feels like this is for the best, not just because I want my own place, but because it's the responsible thing to do. To take control of my future and not just depend on my parents because it's the easy thing to do. Put things in place now because my parents aren't always going to be around, and also to enjoy a taste of freedom because lets be real, my disability is only going to get worse and I want to have lived a little of my own life before that happens. Still, because I'm the one putting them through this I'm still plagued with guilt and the thought that maybe I'm just being really selfish. But when those negative doubts creep in, I just remember this quote...

Twenty years from now you will be more disappointed by the things you didn’t do than by the ones you did. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.
Mark Twain


  1. That's a really well written entry. I can relate to a lot of that. My Dad never thought I'd go back to uni after I got a wheelchair. But I was determined.
    At least I guess you'll move somewhere near your parents. Which is something I regret sometimes. It's either ~4 hours on a train via London or 5 hours in a car.

    So visiting family (coming or going) isn't that often. I regret that now I'm not an angsty teenager but it's how it is. I hope your parents do understand and support you.

    There are many different types of care in the UK. Ultimately it depends on your council which post recession are pretty awful. I'd advise you to ask about Direct Payments. It sound's complicated and the social workers like to exaggerate the complexities.

    One option for Direct Payments is that the money is given to you (~£11 per hour) and you sort out hiring/firing/sick cover/paye/holidays/hourly rate. It's a lot of bother for you and you have all the extra stress of that.

    The better way of getting Direct Payment is that you let them know you intend to use the money to pay for a care agency. They give you £13.50 per hour and you choose an agency. They tend to cost a little more than that (£14-15 per hour which you make up out your own pocket) but you get none of the stress. If you choose a good agency they also CRB vet and train their employees. Offering them NVQs, advancement into management, and a decent wage. I had agency carers when I returned to uni and I found them to be highly motivated and easy to get on with. And changing them is always possible.

    Don't let them force you into Adult Social Care. That is a nightmare. Direct Payments where you are in control of the agency is the best option in my experience.

    Good luck with the future!

    1. Thank you. I was on a bit of an emotional roller coaster when I wrote it, so I was worried I just rambled on a lot. Also, thank you for your comment. It's given me a lot to think about and I'm going to write your advice down, so I remember to bring it up. My OT mentioned Direct Payment, but she said she didn't really enough about it to properly advise me. She's referring me to a Social Worker and they'll link me with a Care Manager or something she said, and I'll discuss all that with them. Another person had told me of Direct Payments, but she hadn't said you could use them in relation to agency as well. That does sound a lot better. So thank you for the tip. :)

      In relation to family, my mum has been a lot better and more encouraging and supportive. After barely speaking to me since my meeting with the OT on Tuesday, my dad has been talked to me a bit more today.. so I'm hoping he's coming around. I guess it's just an adjustment period. But yes, I'll definitely still be in the same area as my parents. The same town at least. We're a very close family, so I couldn't imagine being too far away. :)

    2. Also, thanks! Whatever happens in the future, I'm just glad I'm finding out what my options are. Which will be a weight off in itself. :) Take care.

  2. Whew! I read every word of this and this seems so familiar to me in so many ways. Like you, I've had desires to move out on my own, some of those thoughts have recently came back as we have a new building complex almost completed and it's for assistant living. I keep asking my parent's if they know if it's just for elderly people or the younger generations of physical/mental disabled people can live there too. They still don't know and we seem to dodge that topic very quickly afterwards.

    I haven't been too vocal about living on my own now, but reading this post did remind me of the last part of 2010. I was supposed to go to college and even though I agreed with my parents that we'd look into living on campus for second semester, I still grew into a depression very fast like and before the end of Oct everything about online classes just became too much for me and three months later I have no memory of what I did, there are a couple of things I remember but not much is good about them. We've been working on my independence and finding ways to do things easier, but not much has really stayed for a long period of time. My mom has been experiencing different pains lately so I've basically gotten a wake-up call and been wondering about different things such as lifting and she hardly did that for a week. My dad, who also has back problems too had to do the lifting. It just made me feel weird and a burden all over again. A part of me has thought of moving again out, but I can already picture the outcome of that conversation already.

    Sorry for making this comment so long. Lol

    1. This is part of the reason why I started a blog, to tell people my journey and also to hear about what other people have gone through and find people going through the same thing as me. It's so easy just to leave things how they are and not want to rock the boat, but you just hit a point where you can't live in limbo. I don't think able bodied people fully appreciate how scary it is knowing your future depends on others. Especially when your parents are getting older and you're causing them pain. My parents make no attempt to hide how much of a strain it is for them to lift me now that they're older, but at the same time don't want carers coming in or using hoists etc. It just makes me feel really crappy and guilty. It's really not a good situation for any of us.

      But yeah, we're at a bit of a stand still at the moment waiting to hear back from the housing people. But I am glad I started the process. It might have been hard on my parents and I had to push them and have countless arguments, but at the end of the day you have to do what's right for you. And it isn't always the easy thing. Maybe if you're serious about it and your family is reluctant to help you find things out, you can find it out yourself online or something. I wish I could give you advice, but it's probably different in my country than it is in yours. Though my friend who lived independently up until recently is from the US.

      Anyway, never worry about long comments. I'm known for it myself. :D


I read and welcome all comments and appreciate them greatly even if I may not answer all of them. I love hearing my reader's thoughts and interacting with you. Thanks!

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