Dec 19, 2012

Stop! I want to get off! - My advice for carers.

When we were teenagers, we went to the show with my parents and Mum decided that she would go on the Ferris Wheel with my brother and I. In those days, the Ferris Wheel didn't have any safety cages, it was just some steel framed seating with wooden benches and a canopy on top. Anyway, we hadn't been on for two minutes, when my Mother had a panic attack. For people watching, it's almost a little comical, but for the person having the panic attack it is horrendous and terrifying. Mum stated yelling to the Ferris Wheel attendant "Stop! I want to get off!", but of course with all the screaming from the other rides, he just kept on going and my brother had to try and calm Mum down. I was a little shaken, because I'm so nervy already and Mum having a full on attack was a bit scary.

Any time, I have felt my life getting like the Ferris Wheel, going round faster and faster and seeming like I am stuck on it forever, those words haunt me. "Stop! I want to get off!" I know when it is going to happen, when my life begins to spin out of control, and I feel more like running away than facing another minute of it.
I've been trying to read information about dealing with stress and staying in control of your life, but they all say the same thing. "Reduce Stress". What do you do when you can't reduce stress? This is true for thousands of carers who care for people with special needs, or who are frail and aged.
I keep reading about how if your life is stressful or hard, then make better choices - but what if you have these things thrust upon you, like the person who is ill, has a chronic disease or a permanent disability?
This is becoming a common occurrence and I think we need to consider the harmful effect that the extra stress has on you and your family and try to at least reduce it for a short period of recovery time, so that your health as a carer doesn't suffer.

This is certainly not a good idea!

Here's a few suggestions I have that have helped me:

1.Reduce the guilt - most carers are givers. That's why they are the ones caring for their relative or friend. So when you need time for yourself  you feel guilty. You feel others needs are more important than your own and you put them first. So you need to get rid of that feeling. People have told me countless times over the years that if I drive myself to illness because of stress, that I'm no good to anyone. I finally get it! It's okay to have time for myself.

2. Learn to say no to people - I used to think that if I said to people that I was busy, stressed or under the pump, that they would understand. But they don't! I had to learn to say no to people, even if it meant that I upset them. People not involved with caring either as the person with challenges or as the person who cares for them, have absolutely no idea what it is like for you. These are the people who whine on Facebook if they get the slightest cold. So forget it, the only sympathy you will get is from those in the same position as you. I never find other carers asking me if I can do them a favour. Not everyone understands and you don't need them to understand in order to say no.

3. Value yourself - as I said many carers are kind and selfless people, but if you don't learn to value yourself then others won't either. Some people don't understand why you don't just put your elderly parent in a home, send your child to a special school or hire a nurse for your ill spouse. Sometimes we do those things when we need help, but that doesn't stop the caring role or the stress associated with it. I have tried to have a full time job - it was a disaster. I am not lazy I am otherwise occupied and I don't need other people to get it!

4. Take time out - sometimes my friends joke that I always seem to be out doing things. This is true but there are also many days spent in appointments with specialists and hand holding, sorting medical information, researching, catering to special needs and so on. I don't tell people about that. It's not fun like going to a movie. I now take time out and I don't feel guilty about it. If your special person can't be left alone then there is respite available, put your name on the list for respite, enrol in a respite day program where your family member will meet with others, they also get to have a break from you!

5. Get a massage - truly. I never realised how much a massage can keep you going. It's relaxing, and it's healing. It might feel weird at first, but shop around, find someone you like, it's really worth it.

6. Find help - join the Carers group near you. In Australia we have Carers Australia with groups in every state. They have social events, information sessions, pamper days, counselling, anything you can think of that you might need to know about and they have a wealth of information to share.

7. Sleep -it's so important. Some people have to be awake during the night for the person they care for, and that's always difficult. But I have become a huge advocate of sleep because I didn't get any for so long. Now my sleep apnoea is treated I have seen vast improvements in my ability to cope. It might seem obvious, but sleep matters.

Above all else, believe in yourself and the choices you make for your loved one. I have had people tell me that I am wrong, smothering, overly protective, imagining things, not tough enough, lack discipline in my family, the list goes on. Unsolicited advice is the worst. I ignore them. They don't even know me or my family or what our life is like. Same goes for you. Only you know, and only you can do what you do.

Love and hugs,


  1. Agree with everything here. Especially looking after yourself and trusting the choices you've made. So much well-intended advice without a real understanding of the situation out there.

    I would also recommend tai chi classes as they really help with stress levels (so long as you don't stress about learning the moves :D).

  2. Thanks for that comment. Tai Chi is something I have been wanting to try for ages, I think it will have to be on my list for next year.


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