Caring is bad for you?

My sister told me that now that I was over 50 years old, my body would start to let me down and ‘bits would drop off!’ . While nothing has dropped off exactly, this year I have had two warnings that I am indeed getting older: back in May, my calf muscle was giving me a lot of pain and after I had to crawl up the stairs and could barely walk, I reluctantly saw a Doctor and immediately he told me that I had torn my achilles and that it would be 6-8 weeks to recover. He showed me some exercises to stretch it and told me to ‘listen to my body’ and rest when I needed to.

I discovered that two things eased the pain : a hot bath, so I was having two of those a day, and raising it up when I sat down. It would get more painful if I had not rested it enough, until I was forced to sit down. Since having a torn achilles, I realise in caring for Joshua, how little I sit down before he is in bed at 9pm and at how often I need to run up and down stairs too. So I have become more organised and saved up trips upstairs, rather than going each time I needed something, or I have asked my husband to fetch and carry things for me more. But being in a caring role, really is not conducive to sitting around with my leg in the air.

At the  same Doctor visit, I had blood tests done and they showed that I am pre-diabetic – meaning that if I do not change my lifestyle, I will becoame diabetic in the future. This news struck me hard and I immediately began taking more exercise. I had got into a routine if coming in from work and spending the evening caring for Joshua, eating my evening meal, bath then bed and there was no room for exercise in that weekday pattern.

At the moment ,I am awake and up early in the mornings, full of energy. So I decided to harness that energy and now, on three days a week, I cycle 1.5 miles to our local leisure centre ready for them opening up at 7am. Then I swim for 35-40 minutes and then I cycle home again, getting home for around 8am, where my husband has got Joshua fed and dressed. I have now been doing that since early June, so this is my sixth week of this new routine and it suits me very well. Unfortunately swimming makes me very hungry afterwards, so I have seen no real weight loss, but I am certainly fitter than I was.

The Doctor will monitor my blood sugar levels in 6 months time and the nurse thought that if I could exercise more and reduce my carbs – that is a tougher ask! –  that I would be out of the pre-diabetic zone. I have found time in my busy week to slot in some exercise that I enjoy – I am a fair weather cyclist so I will not be cycling there in the winter or when it is raining – which has to be a good thing. Even to be released from dressing Joshua everyday is a bonus.

I am not blaming Joshua for either my torn achilles or my pre-diabetes, but as his primary carer, I know that I need to keep fit and well for him as long as possible, as he needs me.

Care in the Community

It has been Carer’s Week this week, when we recognise the contribution that carers make to family life and the relentless hard work that they do.Let me start by saying that I do not consider myself to be a carer, I am simply a mother who is looking after her son, the same as others do. The only difference is that my 15 year old son needs more support than other typical teenagers : he needs help with dressing, eating, toileting and getting around, thats all. I do take good care of our son but I still do that as his mother rather than as a carer.

For me, carers are when someone is doing something unexpected  such as a child taking care of their sick parent or when the relationship changes between a husband and wife, when one of them becomes ill and so the other takes on the caring role, as my Mum did ,without complaint, when my father developed dementia. My Dad towards the end also needed help with dressing, eating, toileting and getting around and this was not expected of the strong, intelligent man who she had been married to for 50 years. But she might also argue that she was simpy being a good wife to him, rather than his carer.

I do understand the immense pressure that carers are under, when they are taking sole responsibility for someone and so they can rarely relax and take some time back for them. It can be an isolating, lonely experience as it can keep you house-bound and unable to partake in the frivolous activities that tend to keep us going. Often carers find it very difficult to leave their cares behind and allow themselves some much-needed time off. But rather than being a treat, I regard it as an essential means to re-charge the batteries, to fortify themselves ready to tackle the strains, both physical and emotional, of caring when they return. But they need to first of all have confidence in their stand-ins, to know that all will be well when they return to their duties. I know with Mum it took years of caring before she would go away for a few days either to family weddings or to have a short break with her sisters, but she was eventually persuaded that we could hold the fort with Dad, we would not do it as well as she did, but we would do our best and would not let either of them down. She never went away for long nor very far, so she would not jet off to Rio for her holiday, but the change of scene and company was always refreshing and liberating. Good carers do not  hand over their responsibilities lightly, as they know how much work is involved,and they do not like to burden others, but that is exactly why they need a break.

So this week, let’s spare a thought for the many unpaid carers out there and for the hard work that they do, day in and day out, that is rarely recognised.

Who cares for the carers?

I have written a great deal over the last year about how isolating it can feel to be the parent of a child with special needs and I am certain that the stress of that experience impacts on the health of carers in many different ways. Being on constant red-alert, is bound to create anxiety beyond measure and having anxiety about the future may often stimulate depression too. I know that I personally try not to think much further ahead than a couple of weeks at a time, as imagining Joshua as an adult is just too frightening to contemplate, even though at 15 now, it is approaching and needs to be confronted. Carers often put their own needs after those that they are looking after and as such, they neglect themselves and their own well-being. They may not have the time to be physically active, to keep themselves healthy.

The stress and worry may cause parents problems sleeping, as well as disturbed nights as many children with special needs have difficulty sleeping. It is well documented that sleep deprivation can create both mental and physical health problems, so that alone may store up health issues. I am writing this at 3am as Joshua will not sleep tonight!  The demands of caring can be physical too, with lots of lifting , carrying and bending, which can develop into back problems as well as other aches and pains. I was once told by an Occupational Therapist that Joshua was heavier than the maximum recommended weight for me to be lifting, so I asked her what she expected me to do when I was home-alone with him and he had a seizure and fell to the floor?! She wanted me to leave him on the floor until he recovered and could get himself up, which I sometimes do, just sliding a cushion under his head and covering him in a blanket, but if we are in a supermarket, that is simply not practical.

Many parents of special needs children have low self esteem : they lose confidence that they can do little else other than care. Carers devote their lives to others and as such, they can feel that they are not worthy of any care or attention in their own right and they can become overlooked in society. Social isolation is a big issue as perhaps they are envious of the family lives of those with ‘normal’ children and they can start to find it difficult to socialise with those typical families, such that the gap grows wider.

Many parents give up paid employment to take up their caring role, so this could create financial worries as well as more isolation from others in the working world. Not everyone is as fortunate as I have been to have a flexible employer who can accommodate our endless hospital appointments during Joshua’s life, including some lengthy hospital admissions, and the occasional urgent need to drop everything and dash to school in the event of a seizure or injury.

For all of these reasons, and many more that I have not thought of no doubt, we need to take better care of the parents who have children with special needs. As if they are neglected, then they will become unwell and not be able to look after their children any more. I know from personal experience how valuable respite is as an opportunity to re-charge the batteries, to regain my equilibrium and to come out the other side, fighting.