Tuesday, 8 October 2013

The Importance Of Being Idle.

Here I'm lucky enough to get input from two fantastic people who have helped make this regarding respite and our unsung heroes behind it.

Res.pite - A short interval of rest or relief.

Care and rest is needed and should never be taken for granted. Quite often you will see 'care' workers in the media for all the wrong reasons, and rightly so in these instances. However you will never see carers in the media getting the credit they deserve. Have you ever heard of someone in the caring profession or indeed my wife's profession of being a nursery nurse retiring early or shouting from the roof tops about their fantastic wage or financial situation?
Not likely.

With some disabilities or illnesses there is usually a carer, someone who looks after the ill or person who may not be able to live independently. This may be a Partner or relative or a paid professional whose job it is to do so.

Looking at it from a family perspective I would like to say that sometimes it’s much needed but it also brings feelings of guilt and make you feel retrospectively remorseful. How could I possibly feel that my wife and I deserve a break from our children? They’re our responsibility and it was us who brought them into this world!

Myself and Michelle.
Actually, respite is needed by every single person surrounded by someone with a disability, in my case, Limb Girdle Muscular Dystrophy. My wife Michelle and my oldest daughter are my heroes. Michelle is my carer, she deals with me on a day-to-day basis (I wouldn’t like that job!) and Lucie helps by looking after her little sisters, always going the extra mile.

We have three fantastic girls Lucie (20), Olivia (7) and Skye (2). Lucie recently moved into her own place and has offered to have her sisters over for a sleep over this weekend. The timing could not be any better, I have had extreme pain in my neck and shoulders recently and a break is needed. As for Michelle I cannot imagine how she feels. Michelle is a nursery nurse by day and mum, wife and carer the rest of the time.
We are also very fortunate to have understanding parents that  love to have their grandchildren over when it is needed or simply when they want; maybe without even realising how they are helping us.

So what’s the reason? Why should people need respite? As the title says, it is important to be idle, even if sometimes it’s for twenty minutes to take time out for a breather. Simply to rest, regain composure, get to thinking straight and then go again. The same goes for the children too, an exhausted parent that does not have the right frame of mind is usually not a good parent. That is without even mentioning any emotional or psychological effect that muscular dystrophy is having on myself or my family.
So what about if it’s the other way round , what if you have a poorly child, someone that you are desperately trying to do your best to care for , what if respite is needed for the parents?

I got an opinion from a someone I recently met on social media, Mark and Dawn Creswick's son was diagnosed with Duchenne Muscular Dystrophy and here Mark tells me why a break is important to his family

Mark with his son Harley
Mark and Harley

Respite for parents with a child suffering with Duchenne Muscular Dystrophy

Our son Harley was diagnosed with DMD in September 2011, the following day I was made redundant, then the day after this we had a Family Break booked for a week on the South Coast with Harley's Grandparents - the different emotions we went through in the 48 hours I would never wish on anyone, our lives were thrown upside down & changed forever. The positive out of this time was that we knew we would need to have family time, but also a break from the children so that we can re-charge our batteries & the children get some time away from us!

We are lucky that both my parents & my wife's parents love spending time with our children & will always have them, whether it's just for a few hours or a couple of days, they also realise that it is important for us to have these breaks, as over the last 2 years we have had ups & downs with Harley's condition and also the side effects from his Steroids (this is another story!)

Some people may not have the luxury we have of having both sets of Harley's grand parents wanting to have him, but if you do I would definitely say utilise this time to rest and re-focus. Don't think you’re being selfish that you’re having a break, whether it's an hour, a day or a weekend. As this time away will make your family stronger & make family time more enjoyable, we have realised this & have even more so since we changed our lifestyle to a healthier active lifestyle.

I also got the perspective of close family friend and Residential care manager in Buckinghamshire,Marie Johnson, who has worked in care at both ends of the age spectrum.

Respite care provides a valuable opportunity for people who have life limiting medical conditions to have the time and space to be themselves, while being supported by professionals who are trained to meet their physical, medical, emotional and social needs. This gives them a chance do things they may not normally do, mix with people with similar conditions, so they have a peer group that understands the situation they are in and how they can make the best of it, or someone who they don’t feel guilty about letting off steam to!

It also allows the family, carers and friends of the person with the condition time to recharge their batteries, without feeling guilty. They have time to get other things done, spend valuable time with other family members, do something nice, such as see a movie, go out to dinner or simply get a good nights sleep in the safe knowledge that their loved one is also having a good time and is in good hands.

Respite can be offered in many ways, in a specific residential service, in the persons own home or out in the community. It’s all about being flexible and working with the individual.
There is an eligibility criteria that gauges if you are entitled to respite and if so, how many hours, unfortunately it is not a statutory requirement of the Local Authority to provide respite, but if you are entitled it can have a huge positive impact for you and your family.

Believe it or not some people actual do their job because they DO care for people and they love what they do.They should be praised for that.Thank you Marie and everyone like Marie.

As for our family and friends and those of Mark and Dawns, We cannot thank you enough!
Grandparents, family and friends that help 'share the care' and give us that break deserve to be thanked and this is my perfect opportunity to do that.  

Without you we would not be able to function. Thank you!    

You can read more about 'Harleys fight' Here
Or to get involved with the great work of the Muscular Dystrophy Campaign then go Here


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