I want a new day in the week. It will be called Unday and I’m putting it between Sunday and Monday. Unday will be a Caregivers Breakaway Day. When the Caregiver wakes up in the morning there will be no one else there. They will not have work to do or any commitments. It will be a people free day. It will always have the sun shining all year round, be a pleasant temperature and just the ideal day to stretch out and relax.

Okay, yesterday I had just woken up and Ray had had a fall, so called Trev to pick him up, sat him down for a while and then showered him and went on with the day. This morning he had turned the alarm off and it was 20 past seven when I woke up and he had spilt the urinal in his bed. Yep, clean up, change the bed, put some laundry on, shower Ray and go on with the day. Tomorrow? Who knows? No two days the same.

I am over looking after someone every hour of every day. I know I get some breaks but it is not enough. This is years and years and years of looking after someone else, not having a life of my own! Under the British system a caregiver can get a break of a week every two months. At least that is regular and booking ahead you know how many weeks it is before you can sleep in, get a haircut, go out for coffee etc.

Here we can get up to 60 days a year at a subsidized price in respite rooms in designated nursing homes or respite hostels with nursing care. So far I have taken two or three two week breaks a year and that has been enough. I am not sure now whether a break once a month would be enough. But maybe a weekend off from time to time in between breaks would help.

I have just sent out an email saying we had a good day yesterday and to a certain extent that is true, we did have a pleasant BBQ lunch with our son Trev, Edie and Lukie and then Trev got out the Wii and after Edie and Lukie had played Carnival Games Trev Lukie and Ray had a couple of games of bowling and Ray won the second game. Good for him to occasionally have a win, do something well, have some praise, we all need that to happen.

So this week we have our old friend Claude’s funeral Wednesday morning, which means I will not be at chat again as I will be on the way to the funeral. I can’t miss this one as we have been friends with this family for over 20 years and for the last four years since he went into the hostel and then the nursing home I have been his main visitor.

The family will gather and cry and say how much they’ll miss him and they will but they have not had the week by week contact like I have. They are nice people but prone to “living their own lives” as so many of our friends do. I wonder who they think calls in to say hello and do small errands, and if they think kind neighbours should do the things families are meant to do or if indeed they think about it at all? I will miss him anyway.

I know it sounds as if I am always whining about my life, sometimes that is the case. I get unhappy about the unfairness of life, the unequal burdens some of us carry, the lack of appreciation and thanks, the way it is just assumed that we will do it, we will go on doing it, we are happy to do it etc.

Work is work, and looking after a person with multiple disabilities is hard work. And sometimes too much work for one person. But the alternative, putting the person you have loved for 42 years into full-time care is not the answer I want. No, not at all, I just want a little more time to myself, some worry-free time off, a weekend away, or a day of pampering.

Having said all that – give me an Unday once a week and I will be fine.