Tuesday 11 June 2013

The loneliness of a full-time carer

In general terms

Becoming a full-time carer is life-changing experience. We often hear about life-changing injuries, but rarely do we hear about the life-changing role of being a carer.

Where once we were able to work, the needs of the person or persons we care for, often means that work is no longer an option. Interaction with colleagues, both at work and socially, is no longer possible. Socialising with friends comes to an end. Going to the pub, restaurants or theatre, is out of the question.

Hobbies and activities are put on hold. Holidays just don't exist. Weekends, whatever they are, become the same as every other day of the week. Caring doesn't stop at 5pm on a Friday, and resume at 9am on a Monday, in fact it doesn't stop at all.

Sometimes, if the person cared for is unwell, we may have to stay up until the early hours of the morning waiting for an out-of-hours doctor. On other occasions, at night, we may have to tend to the needs of the one you love, such as "commode duty", reposition them in bed, and make them comfortable, or administer any essential medication. We need to be available, at any time, night or day.

As carers, the only people we may see throughout the day, are the carers who come in to help. As the main carer, this doesn't provide any form of respite, as we are also there to help. In between these visits, there are all the other tasks that need to be carried out. Preparing food and drink, administering medication, cleaning, washing, and assisting, in a variety of ways, the person we care for, when needed.

If it is possible to leave the person we care for alone, it is usually only for a short period of time, time in which we do essential shopping, collect prescriptions, or post mail. Or, we may take them with us, more often than not, in a wheelchair, encountering all the obstacles, attitudes and difficulties involved, when shopping with someone, who is wheelchair bound.

For the most part, as carers, we are effectively "held" in solitary confinement. Few people, apart from the carers, visit. Few people phone, many just don't understand what we, as carers, are doing, or don't understand the illness the person we care for, has. Society, as a whole, just doesn't understand a carer's role, we are often stigmatised - too lazy to work, benefits scroungers, opting for an easy life.

If only they knew! As carers, we are paid a pittance, if anything at all, we take a massive drop in income, we work unsociable hours - we work many more hours than those in full-time employment. Why? Because we care! And we love the person we care for.

We sacrifice many things that non-carers take for granted. A quiet evening in, having a drink with friends in the pub, going away for the weekend, taking a holiday, or just going for a stroll in the countryside. None of these options are open to a full-time carer.

A personal point of view

I sacrificed my career, and I sacrificed the things I enjoy most. I love mountain walking and skiing, yet have no chance of doing either for the foreseeable future. I have a car, but cannot afford to run it - where would I go anyway? I can only leave Mum for about half an hour. I could take her out in the car, but due to her limited mobility, this would cause distress, when transferring her in and out. So, it's really not an option.

The last time I went out with friends, was when Mum was in hospital, last November. Only one friend ever visits, and since moving slightly further away, even these visits are now few an far between. The phone calls I receive, are either people trying to sell something, or the occasional calls from health and care services.

Family members living in the area, have all but disappeared. For most of the time, it's just me and Mum, our little parrot, and two budgies. That's my life now. Because I love my Mum, and because I am the only one there to care, I do it unreservedly. Knowing she is happy, safe and comfortable, is worth more than anything else in the world.

And, thankfully, blogging, Twitter, and the CarersUK forum helps me maintain my sanity.


  1. Hello Martyn,
    Talking Point is also a great support forum if you haven't already discovered it.

  2. So true...
    I have never had a conventional life to miss - as most of my friends have lived overseas anyway and i worked at home, but I have lost the choice of when I go to bed and get up, lost the opportunity to plan an overseas vacation, lost the time in which to 'focus fully' on reading/writing, never know when i will be interrupted when i start to cook/doze/hang out laundry...
    It is a very different and difficult life - but weighed against what dad would have if I did not care for him....it is worth it!

  3. Martyn, Well said mate. I would like to add to it but cannot, without it becoming a complete rant about what we as carers do. Keep fighting the fight mate, am tweeting you blog to all those that will listen.


    Ollie....(Yep that one from Carers UK, not the other one... Lol)

    1. Thanks Ollie - I'll keep on fighting, and tweeting, until our message is heard - loud and clear. Take care mate :)