Despite being a member for a couple of years now, I have not posted on here.
My wife has Chronic Fatigue Syndrome and Fibromyalgia but not serious enough that she needs full time care. We are both in our early 30’s.
On bad days, she will be in bed all day and need someone to provide food/drinks etc, but on good days she can do things around the house.
I have never felt worthy of being a carer and I guess don’t like feeling like I am or that my wife is I’ll enough.
She has a blue badge, but no other financial help (like pip) because they have said it’s not severe enough.
I am a full time teacher and spend most of my evenings providing food/drinks and doing jobs around the house.
We live off my income. My wife started a uni course as a mature student back in 2016 but still has to complete this after taking lots of time out.
We are so blessed with many things in life and others are much worse off than we are, which I guess is why I don’t feel like I count as a carer.
Not sure why I am even posting on here, just feels lonely sometimes when those around have no idea how it feels to be me.
I do think your wife would be entitled to some benefits and would suggest you discuss applying. Citizens Advice Carers UK can provide help in this area. Likewise a local carers group would help complete the forms. You don’t need to be getting carers allowance to join a local carers group.
When another person who has knowledge of the PIP criteria and completing the form. They ask relevant questions you and your wife may not have thought of. I have suggested to many to claim varies benefit who may have been deterred by the process and have had very successful outcomes.
It’s doesn’t mean you will in turn need to start claiming carers allowance. And it’s important you retain your employment. You are both young and there is a long road ahead. You both need to start thinking what will make our lives better.
Does your wife’s illness have a significant effect on you? If so, you ARE a carer.
Lots of carers have many other roles in life too. I describe me self as a mad crazy woman who owns steam engines, expert on old lorries, but most of all, a keen needlewoman!
Does your wife have any social life at all?
When did you last go away together for a holiday? There are self catering cottages that might be suitable?
Yep. You’re a carer. No doubt about it. It’s a title none of us really wanted, and I guess that part of the “not enough” that we hear is that little bit of hope that someone will say: “Yeah. things are not so bad for you that you need that title.”
But caring is about all the extras that we do: stuff that on the face of it seems normal until you realise that without it, the person you care for would be in a mess - and you’re stepping up your game to fill that gap.
Most teachers I’ve known are exhausted from teaching, let alone doing all the other stuff. And yet you do that bit extra a lot of the time, when needed.
And yes, we all have times when life is a bit sh- er, a bit of a struggle. That’s why the forum is here to get us through that. So welcome aboard - we’re really glad you’ve taken the plunge! Feel free to join in the other discussions, too!
Tim I agree with the comments - you ARE a carer. Your life revolves around your wife and I do worry that your ‘quality of life’ is not that good? Do you have any hobbies? I do realise it is very hard to get out. I agree with Charles that teaching is so mentally demanding . Always being there for your wife after work is very socially isolating and cannot be good for you long term.
It might be worth contacting a local Carers Support Group? If you could maybe find a telephone befriender - that may be an option? Most have been carers and it may help with the lonliness if you have someone who understands
Tim, it’s really important for a carer to look after their own health, as well as their caree.
If anything happened to you, how would your wife manage?This is a conversation you need to have with her.
It would be much better to have some domestic help to do basic cleaning and food preparation whilst you are at work.
This would not only reduce your workload when you get home, but also give your wife someone else to chat to another woman.
I’ve had long periods of having to stay at home following surgery and illness, it’s really easy to get into a downward spiral.