Louise has Down syndrome and is currently living in a group home where she is cared for full time. My sister Yvonne and I care for Louise every 2nd weekend and during public holidays. It has been 17 years since our mother passed away and my sister Louise initially lived with me for a 1 year before I realised I couldn't cope with caring for her full time.
For 17 years every 2nd weekend we have had to plan or change weekend activity, we have had to advise friends that Louise would be joining us for dinner (thank goodness for understanding friends), cancel trips away (thank goodness for an understanding husbands), postponed friends staying as there was no room available, all if this so that Louise can be with us in the weekends. Sometimes you become resentful at the fact your leisure time has had to change because of your responsibilities.
My sister Yvonne and I are very lucky that the fulltime carers are understanding of our needs and when we are tired or sick they understand we cannot have her out for that weekend. It does upset Louise and she can't wait for the next weekend, so we try not to disappoint her. I don't think people understand the huge burden caring can have on family members and how it alter their lives. I just want others to realise that extended family or close friends can be a big help in taking over the burden from the main carers.
Some weekends it would be nice to chill out and not worry if I have given her medication, washed her hair, taken her on an outing (so she doesn't feel too bored). On rare occasions the weekends may result in sleepless nights or sitting up with her when she feels unwell. Being a carer is not all negative, that's so far from the truth. There are many positives. Most weekends she folds my washing, keeps my grandson entertained and delights me with her dancing; her laughter is infectious and there is so much love in her eyes.
My story has been a long time coming. We should value the work of carers especially the part time carers who look after their loved ones on weekends or during the holidays, they are doing an important job, their commitment to their family members is honourable, they have given up valuable family time, leisure time to care for their loved ones.