Caring for the Carers

carer's week 2You are probably not aware of it, because it doesn’t seem to be that well publicised, but it’s Carer’s Week this week in the UK and Ireland.

Carers Week is all about recognising the hard work, dedication and self sacrifice carers make every day in caring for a loved one. These are not paid staff employed either privately or by the state to look after a disabled person; these are people who give up their own lives to in order to improve the life of a friend or family member who can’t look after themselves.

In the Census of 2011, 4.1% of the population were giving unpaid regular assistance to someone who needed it; of these, 98.3% were family members, mostly spouses, two thirds of them female. It is hardly surprising to find that separation and divorce is higher among carers than in the rest of the general population.

Sadly,  the 2011 Cencus found that 4,228 children aged under fifteen years were also engaged in providing care to others, accounting for 2.3% of all carers. Some of these children are under nine years of age.

38% of carers looking after someone in the same household reported feeling completely overwhelmed by their caring responsibilities, and many suffer anxiety and depression as a result.

Carer’s Week aims to relieve the pressure a little by organising fun events for carers, raising publicity, and offering support and advice. However, there’s not a lot going on. In Co Cavan, where I live, there is only one event, a coffee morning and pampering day in Cavan town; it doesn’t really cater for male carers, or those elderly carers who live in rural areas and have no transport. It is hardly going to sound like much fun for the younger teenage carers, or the children, either.

Although the state recognises me as a carer (unpaid, of course), I never think of myself as one. I’m a mother, and caring is what we do. But in terms of caring for a disabled family member, be it an ageing parent with Alzheimer’s, a partner with cancer, or a child with a disability, we do it firstly for love, and secondly because we have no choice.

I care for my daughter, Carys. She has a rare syndrome, which means she has the abilities, physically and mentally, of a one year old. She can’t communicate, she can’t walk, she can’t feed herself, she wears nappies (diapers), she can’t dress herself, get in and out of bed, and so on… I do it all for her. Administer her meds, mash all her food, do her speech therapy, physiotherapy, occupational therapy, bath her, clean her teeth, taking her to all her Dublin hospital appointments, regular and emergency, and so much more. Caring for someone like Carys means going above and beyond what any parent ever expects to do for their child, until you, or the child, expire.

But I do it because I love her with all my heart. I want to take care of her. She’s my child, flesh and blood, wanted as much in her imperfect state as the day we decided to try for our third baby. Perhaps that is a choice.

I’ll give you an example why caring for her is not the same as caring for any other child. For three years, she never drank fluids. At all. It’s not something you can force someone to do. Yes, we tried. We tried a lot of things. Eventually, after trying every bottle, cup and beaker on the market, I found one she accepted.

Now to actually get her to drink from it. In the end, I had to cut holes in the teat. (she would only take a soft teat, but didn’t know how to suck, so it had to be free-flowing… have you ever tried to find a child’s cup with free-flowing soft spout? Let me tell you, they don’t exist.) I filled it with chocolate milk shake. She allowed me to put it in her mouth. She even swallowed a little. Success!

After a while, on a good day, it would take me 15 mins to get 150 mls into her. Eight times a day. I spent two hours of my day just getting her to drink. Two hours. And I still had to feed her, clean her, etc… and look after the rest of my family.

That’s one of the nicer jobs. You don’t want to know about some of the not so nice jobs. No, really, you don’t!

I am not alone. I know parents whose children have feeding tubes directly into their stomach, or bowel. I know parents whose children have to wear oxygen masks over their faces just to survive, or tracheotomy tubes. That’s tough. And I have friends who are working, raising their children, and caring for elderly parents with dementia.

But mothers are perhaps the lost, secret, hidden carers. It’s expected of her, and she gets on with it, and it goes unnoticed, because mothers are expected to look after their families. No one sees what she does. It takes place in the privacy of her own home. No one looks too closely; it would after all make you feel quite uncomfortable.

The best thing anyone ever did for me was take the responsibility of being a carer away from me for a couple of days. I have good friends, very good friends, who surprised me round about this time last year, by taking care of Carys and the boys in our home so that Conor and I could have a night away together. That was the first time since she had been born that we ever spent a night away from her. (it helped that one of my friends was a nurse). Conor and I had a fabulous care-free time, it rekindled our relationship, and refreshed us.

No one I know would give up their caring role, or want to be paid to do it. But we would all appreciate a few hours off now and again… you have no idea how much!

So maybe this Carers Week, if you know someone who fulfils a caring role, maybe you could offer to help out by giving them some time off. Take it from me, they’d love you for it! Carers do a great job, and save the state an awful lot of money. Let’s show them some appreciation, and remember to care for the carers.

You can find out more about Carer’s Week here.

Last year, I appeared on local radio during Carer’s Week. You can listen here.

35 Comments on “Caring for the Carers

  1. Aww, you’re most definitely one of the best carers I know, and you deserve to be honored this week and every week! I sure wish I lived on your continent so I could help you out sometime and give you some time to yourself. I know just from how needy Jeremy was with his autism throughout his entire childhood, if someone would have given me a respite break, I would have appreciated it immensely, but he only wanted Mommy. It was grueling spending so many hours with him on one task (such as tucking him in bed for the night) that would have been quick for other children, but I wouldn’t have traded that time with him for anything. Hugs to you and Carys.

    Liked by 1 person

  2. What a wonderful mother you are. I understand how we do things for people we love, and do what we need to. All the same, your little one is fortunate to be loved that much by a mother who sees so thoroughly to her needs. Not all children are, and that’s so terribly sad. Bless you and your family. You’re blessed to have such great and giving friends.

    Liked by 1 person

    • Thank you Suzanne! I am very lucky indeed to have such caring supportive friends. Our families are both in other countries, so our friends mean so much to us. Funny thing is, although I have tried to tell them how much it meant to us, they don’t seem to realise what an extraordinary thing they did for us.

      Like

  3. Ali, it is nice that they have a Carer’s Week to bring attention to the caregivers in the world. It would be even nicer if they had events for the carers that would give the carers some time off and some pampering – like a spa day or something.

    I hope that your friends can give you a day or two away with Conor again this year. You need time off to refresh and recharge.

    I’m glad you got to go hiking with your friend. The photos were amazing.

    Liked by 1 person

    • Thanks Rachele. Yes, Carers certainly need to be looked after, particularly the older and the younger ones. That whole trip to the Cliffs of Moher was just the most amazing break for me… Physically demanding, because I’m not very fit anymore, but inspiring and fun and free too. Xxx

      Liked by 1 person

  4. You’re right about finding hidden resources, and they are there. We’ve all been in that zombie state with babies, getting up for the fiftieth time in the night, feeding the little bugger until you fall asleep first, sitting up all night with a sick child and crawling off to work in the morning. But you have been operating at that rhythm for years. That’s more than resources, that’s a bloody miracle! You and all the carers like you deserve recognition and a big dose of HELP! Hope one day the penny drops.

    Liked by 1 person

    • Thank you! Its a lovely community here. Which is really important as neither Conor or I have any family here to fall back on when times get tough. We are very lucky.

      Like

  5. A wonderful article and my heart goes out to you – a truly unsung hero. It’s so important to highlight the role of carers in our community and your words go a long way towards doing that xx

    Liked by 1 person

    • Oh yes, a syringe can be quite effective! Cary’s doesn’t have much of a swallow mechanism though, so she could hold liquids in her mouth for ages without swallowing… I don’t know how, I couldn’t do it! It made giving meds a nightmare. We had to switch to crushable tablets and mix with food in the end!

      Liked by 1 person

  6. It’s so important that carers be recognised. For the past eight years I have been responsible for the care of my now, 93 year old Mother. First in her home and then overseeing care in a nursing home.
    It is only because i have worked for myself over the past forty years that I have been able to continue my work at any level….and much of that I attribute to the internet….without it I would have been extremely difficult.
    Not only is it enormously time consuming and tiring, but the costs involved are unbelievable. My Mother – deemed a self funder, has had to pay for all her care since entering the first nursing home in 2011 – however, since January of this year, she has been moved to a much better – in fact I would go so far as to say, wonderful nursing home – a place where she is happier and I enjoy visiting her.
    My circumstances pale to those of so many others….and this is an issue which is definitely not going away.
    Thanks for highlighting this most important subject. Janet

    Liked by 2 people

    • Hi Janet. I think the carers rolecis underestimated but to be fair, most people have no concept of what it entails. I think my life as a carer is tough enough, but when I see what my friends caring for their parents have to cope with, I realise I have it quite easy! I’m so glad you have found the right nursing home for your mum… Its so important and such a weight offvyour mind to know shes happy and well cared for. And all the best to you and your family. Xxx

      Like

  7. Believe me Ali I know how hard you work. What you do saves the state a fortune yet it’s unappreciated by them.It may be something you love doing because it’s family, but it’s still a job and it would be good to receive pay for it that might allow you a few treats.
    A little respite care might be good too so that you and the rest of the family can perhaps take a few days break.
    I know you love Carys very much but the opportunity to do something with thee other children might be nice.
    I hope your friends give you a night away again this year, or even two just to recharge the batteries a little.
    xxx Massive Hugs xxx

    Like

    • Thank you David! There is a two year waiting list for respite. I hate the idea, but we do have to think of our boys too. So yes, we are on the list. Massive hugs to you!

      Like

  8. Ali you are a saint, Saint Ali. I really mean that. I do know what you do and feel for you, the constant over and over again, all because you love her so much. My kids are healthy and driving me bananas.

    I think you should make a video of a couple days of time with all that you do, to show others the time and commitment displayed for another. I’d like to show my teens how fortunate their lives are and to believe me when I tell them things, instead of treating me like an alien!

    PS. I would donate to a charity that provided you relief from your hard work in caring for your daughter. Start a charity, moms need it!

    Liked by 3 people

    • Thank you! You are very kind. I agree with you, its important that kids get to see a bit more of life, my oldest volunteers with special needs kids teaching them sport in the local community. I was so proud of him! And he loves those kids! My youngest has to wait a year before he’s old enough to do it.

      Liked by 1 person

    • I’m not going to heaven when my time comes, Craig, I’m going to the Otherworld where they know how to have fun lol! We always think we can’t do things which are difficult until we are forced into a position where there’s no choice, and then its amazing what we actually can do.

      Liked by 1 person

Please feel free to join in the conversation...

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s