I am a man in my early 50s. I have been caring full time for my partner who is 10 years younger for many years. She has a rare genetic disability that has got worse over the years and I had to give up work to look after her. As our previous accommodation came with my job, we had to move out and were rehoused by the council into a two-bedroom flat.
I have found that the stress of caring for her constantly, without any breaks, has got harder. It’s been years since we’ve been able to go away, and one day just slips into another. We are both very isolated due to the nature of her disability and neither of us has any family to speak of. We have gradually lost touch with friends and associates.
We did try to get some help from social services but they haven’t been much help as we would have to pay for any care or respite and we can’t afford it. This is now compounded by the recent benefit changes and having to pay the “bedroom tax” for our so-called spare bedroom – my partner sleeps in there. I am still quite a few years off retirement and don’t know if I can hang on that long the way things are going.
I am aware of a local carer’s group but it’s difficult being a man, and it’s difficult for me to leave my partner.
The only other way I have found of making contact with others in similar situations is through social media and chat rooms for carers and I am a private person. Really, it would be so nice to escape all this occasionally and do something to take my mind off it all.
I’m sorry if this sounds self-pitying, I try not to be, but we all need things in life to look forward to. This isn’t a life for either of us really, and I don’t know when it will all end. I still love my partner a lot and want her in my life, but not like this.
Do you have any suggestions?
I’m sorry it’s taken me so long to reply – your letter only recently reached me (where possible, email is best as it gets through more quickly).
Unfortunately, there are many families in a similar situation, so your story is not an uncommon one – I say this to make you feel less alone, not to dilute how you must feel. Did you know that 42% of carers in this country are male?
I wonder if you have ever rung Carers UK? I know it can be hard to make that first call, but I would urge you to please try (0808 8087777, all calls are strictly confidential). There is also a lot of useful information on the website.
Think of taking small steps. Look at the website (carersuk.org) today, aim to call them on Monday (hotline is manned Monday-Friday 10am-4pm).
You see, many carers come to caring via their doctor and some GPs only advise on the medical aspect of caring. An adviser at Carers UK can talk to you about your particular individual circumstances. One of the things they could look at is if you are receiving the maximum amount of help you are entitled to – both financial and practical.
When you are as exhausted, mentally and emotionally, as you obviously and not surprisingly are, you go into a “holding” position and it can be extremely hard to step back and reassess your situation from a different perspective, or be able to look at what you may also be entitled to.
Carers UK can also advise on challenging your bedroom tax ruling. Sometimes these things are all in the language you use to fill in the forms. You may also not have been told about all you are entitled to, or you could be better off switching to a different sort of benefit which then enables you to qualify for others. The advisers can help you with all these details and I think that sorting out some practical things will really help you emotionally, too.
The Carers UK adviser I spoke to on your behalf also sounded surprised you weren’t entitled to any support from social services ( for example, respite care for your partner, be it day or residential) without having to pay for it. You could look again at this with an adviser.
And have you ever had your needs, as a carer assessed? You can ask for this through your local authority, which has a duty to carry it out. It could highlight other areas in which you could be supported, and helped with training and equipment.
I appreciate that you’re not keen on social media and chat rooms, but they can be useful as an add-on that you can dip in and out of, and you may also be able to find local groups that could help. Being a carer may give rise to complicated (but normal and natural) emotions, such as anger and guilt, which can be difficult to discuss face-to-face with anyone else.
This article first appeared in the Guardian Family section on 11 April 2014.