We’ve got a situation, They’re always putting us down
We are the generation, Can’t keep us underground…
We’re on a one way mission, We can take it or die…
Running the world, It’s the time of our lives…
We better start believing, Before we run out of time
Fight til we fall, Standing tall…
Coz we’re the young, We’re alright
(Mcfly: We’re The Young, Motion in the Ocean)
Great diverse alz chat on Twitter today about young carers. Here’s a write up and some added thoughts from me for those of you who couldn’t make it (including the host who ended up in Twitter jail)
Our first question was how young is young? How can we define someone as a young carer? Aren’t we all just as young as we feel? Guaranteed some days I feel older than nan. Myself and another young carer, whose blog can be found here (http://charlotte-emily.net/2013/01/21/i-think-i-forgot-a-poem-about-alzheimers/ …) are both in our twenties (she started caring for her granddad when she was 20! Astounding, I was still out at uni, experimenting with life. And I don’t think I would have made a decision to care then). Which is apparently still outside of the norm for caring, particularly in the field of dementia.
I started off caring for nan by accident really, I needed a place to live, and nan needed some extra help after coming out of hospital with a broken wrist. And then I realised just how ill she was, and how terrifying the idea was of her being left alone. So I stayed, and a year later I can’t ever imagine leaving.
We both found (as I imagine older carers do too) that personal care is the biggest hurdle. I think it’s the role reversal that freaks me out so much. But you do just get used to it. It’s really not something to worry about (and is, as my AN told me, a great way to prepare for children. Most carers have had their children and so know personal care inside out. Younger carers have it the other way round, and I think, once you’ve dealt with adult personal care, babies are a breeze).
The hardest part of dementia was something I think we can all agree on, when the one you love and care for, doesn’t know you any more. Or even just the confusion of a situation where they look at you so lost, and there’s nothing you can say to help.
Another struggle younger carers are having to overcome is external attitudes. Some friends find it hard to accept that they/socialising is no longer a priority (why I am so truly grateful to all of you who stick around, because I feel I am not being the greatest friend I can. It is not that I do not care for you anymore because quite honestly I think of you all every day). Explaining to friends why you have taken on a ‘responsibilty’ can be quite challenging, especially for me as I find it hard to articulate my thoughts when talking. Which is where my blog came in handy. I think some of my friends began to understand the thought processes behind me and my role as nan’s carer much better when they read my blog. And it’s not only friends, professionals can be surprised to see a younger person accompanying a relative to the hospital etc and quite often have voiced their surprise. Should we be having to explain ourselves?
I struggle to cope when I think of plans I had made, and dreams that I had. That have now been forgotten about, put away or quite simply refused. Because nan, and the love I have for her, will always be my priority. But that doesn’t make it any easier to see friends living the life I thought I’d have, happy couples walking around, or the books I have for travelling. In fact, honestly, it makes me quite bitter. The hardest question I was asked tonight was if I regret it. Sometimes, I do. I really do. I wish I could drop everything and drink til I pass out. I wish I could go window shopping, spend all day in bed with a fella, or loiter in the park (or whatever it is young people are doing nowadays). But then nan smiles at me, or I’ll remember a good moment. And the regret and the bitterness fades away, and all I can think about is nan. Love comes first. And besides, even though I have/will have to turn down amazing opportunities, I have found even better ones in their place. Caring for nan has closed some windows, but opened many doors in return.
Relaxing as a young carer is hard. Well again I suppose any carer. But all my friends are going out, seeing new things, doing the things I used to enjoy and I just don’t feel I can leave nan long enough to truly enjoy myself. Whenever I leave the house I am checking my phone every 5 minutes in case there’s an emergency. I am thinking about nan and can’t truly relax. (Very much looking forward to my holiday at Disneyland Paris. Disney is the only place I have ever really been able to switch off, and I’m hoping it can work it’s magic again). It was re-iterated once again though how important it is to have a break.
Is it really more challenging to be a young carer than a “grown up” carer? We were split. I don’t think so, caring fullstop is challenging, and why should my struggles be any worse just because I’m younger? The counter argument is that we are still finding ourselves, and our place in the world. This is where I worry, my place in the world is quite firmly by nan’s side. What about when she leaves? Have I set myself up too young? Will it be harder for me to find a new place when I am older? As I won’t really know any different. I never set up a place anywhere else, I just wandered through life.
This chat made me grateful that nan is not yet at the aggression stage of dementia (not sure I can rock the black eye look). That she is (pretty much) sleeping through the night. That my boss is so understanding and that my friends support me too.
The best way to cope with caring? Especially as a young carer. Educate yourself. Know what it is you’re getting in to, how to get out, how to ask for a helping hand. Find an escapism. Bugger everyone who doesn’t get it. And love yourself as much as the person you care for. You need time too.
Also check out http://charlotte-emily.net/2013/09/02/being-a-young-carer/ a view from another “young” carer, who also happens to be a delightful person.
Websites to support young carers:
@lotsahelping runs website Lotsa Helping Hands
@carerstweets runs a young Carers Online service for young carers