A Challenging Sunday

Sunday 18 May 2014

When one is in full time long term care giving (33 years to be exact) – it becomes necessary to learn how to navigate life – over and above the normal daily stuff – all over again, from day to day to day. Care giving is a full-time job. It is exhausting – physically, emotionally, financially, socially. Finding time to take care of one’s own needs is not always an option. We literally haven’t had a decent holiday in all these years…

Today Sunday 18 May 2014 I had a reality ‘attack’. I had moments of overwhelming fear about our  reality we face on a daily basis – the exhaustion we have to deal with from day to day… feeling so very alone to the point of thinking and believing that we’ve been abandoned by mankind on our journey? Worried about the effort/hours/energy we both have to put into earning enough money to keep our boat afloat – salaries, nappies, medical, school fees… the future  

There are countless tasks to attend to when caring for another person, and at the end of the day there is rarely time for other relationships. Caregivers often find that their relationships suffer because they cannot find time to tend to them. Caregivers therefore need family and friends who reach out to them, unconditionally.

Yes, honestly – on a day like today I feel that we have been abandoned.  I believe that I put so much effort into building and maintaining relationships. But why is it that I (on a day like today, when I have such a great need for support/intersession/reaching out), just don’t feel at liberty to phone someone and ask for some kind of support? I went cycling midday today (had a good long ride), I was crying as I was cycling up hills today. It felt like a condensed version of my life in the moments I battled uphill (heartbreak hills?). And yes I felt sorry for myself, I cried for me… in fact I thought terrible thoughts today. Tania Clarence in London also crossed my mind...    

Getting a break. We need a break. We desperately need a serious break. But how? And with what?

Guilt. Between bathing, dressing, feeding, cutting hair nails – fighting athletes foot, worrying about Markus not sleeping – balancing the budget, and all the other odds and ends that go along with taking care of a disabled adult person, I often feel overwhelmed. The urge to quit is common, as well as the feelings of guilt that inevitably follow if you think that you should spend more time with your disabled children. Caregivers confront, over time (with less intensity as time passes), the living death of the child not growing into the adult we dreamt about, working hard to make  peace with the ‘broken’ dream, as well as the ebb and flow, of the sometimes intense unplanned grief. "It takes reaching out" – and to reach out takes a whole lot of effort in itself.

Experts use the term "caregiver burden" for the on-going low frequency emotional and physical stress of providing full time care to a severely disabled family member. In short, the burden remains squarely, on the primary caregiver. Caring for a disabled child is a highly demanding, tiring and emotionally exhausting job.