In New York

In New York

Sunday, 19 May 2013

A bit of a moan and a visit from MaDonna

I’m finding it really hard to get down to any writing these days and it’s bringing me down.  I am new to twitter (@dmar_miss) and I am trying to follow fellow writers for encouragement and writing tips. It is a start I guess and there is helpful stuff out there, but the most I seem to be able to do at the moment is blog. That’s another thing, all the writers’ advice is to start your own blog, but I think they mean a writer’s blog and I think “I don’t have the time to start another blog!!” Does this one count?

Writing makes me feel better about myself and better about things in general, so what gets in the way?  I can’t blame Roch – there are times here when he is comfortable and content and I could just settle down and write, and that’s just it – I can’t settle down! But the longer I go without writing, the worse I feel about myself and then I get crabby. It won’t do. I’m conscious that my mood affects Roch. He’s pretty much captive to it. I’m sure it’s no fun when your carer is withdrawn and silent.  I guess what I need to do is set some time aside every day – the morning would be best, but recently most mornings I wake up and I just don’t want to get out of bed.  My energy levels are rock bottom. Sometimes I can’t think of anything that will entice me to start the new day. (I wonder how Roch does it?) I ask myself – am I becoming depressed? Where’s my motivation? Of course, I do get out of bed every day and get myself going, and things get done. But writing isn’t one of them. Why do I find it so difficult to get motivated? It's something I will have to work out for myself.

I try to think now about the things I’ve achieved at home this week. But as usual all I’m left with is a feeling of dissatisfaction for not making more of an effort to get back into writing. It was a bad start on Monday as I wasn’t feeling well enough to go into work. It took me out of Monday and Tuesday really and even Wednesday was a struggle.  It didn’t help that I was trying to get all the paperwork together for the new Motability car and couldn’t find my counterpart driving licence. I ended up having to apply for a new licence as it was coming up for renewal in September anyway. But I was so convinced it was SOMEWHERE that I spent days ripping the house apart to look for it. I drove Roch crazy, before finally admitting defeat.  But now, on the bright side, all the paperwork is going through and the DVLA have said Motability can check all my licence details directly with them. My replacement licence will take three weeks to come through and I really don’t want this to delay delivery of the new car.

Kate is graduating in July – she had her last exam on Friday – and we'll be off to Exeter for a few days. I’d like to have the car well ahead of Graduation Day, to get used to driving it and operating the WAV elements, too.  I just don’t think we are getting out enough. Maybe that’s why I’m feeling crabby, too.  We need to be able to get out an about together under our own steam.

At last all the paperwork for Tom’s student finance is done and I posted it off this week. That is a load off my mind, never mind his. He started the process online weeks ago but only this week we were told that he needed to send it all by post. This is because the financial information Roch and I have to send in support couldn’t be electronically connected with his online application. Well now, if we’d only known that at the beginning!!! Our household income has been reduced by more than 50% since Roch’s retirement on medical grounds so we are hoping Tom will get a Maintenance grant.  Anyway, all that felt quite stressful but it’s another thing off the list.

Writing about Kate and Tom there made me think. It’s almost four years since Roch was diagnosed. We didn’t know how fast the disease would progress.  Kate was 17 and Tom was 14. At that awful time I remember thinking, “If we can just get Tom through his A levels…if we can just get Kate through University.” So now Tom is doing his A levels in June and Kate graduates from Exeter University in two months.  And Roch is still doing well.

We had a visit from Donna on Wednesday. You may remember that Donna is Roch’s Palliative Care Nurse.  We first met Donna in September 2009 and it felt a little strange then to have contact with a Hospice Nurse but we love it when Donna visits – she has become our friend and her visits seldom fail to cheer us.  This time she had a lovely story to share.  She told us how the child of a former patient had asked her if she could take Donna’s name for her Confirmation name. Donna was touched but explained that the name had to be a Saint’s name and so she didn’t think it would be permitted. That was two years ago, and she thought no more of it, but lo and behold, the child made her Confirmation recently and contacted Donna to say that she had written to the Bishop and discussed it with her Parish Priest and all were agreed. She could take the name ‘Donna’ – as it was a derivative of ‘Madonna’.  Donna told us the story because she knows we are Catholics and thought we would appreciate the thought of her facebook photograph displayed in Church along with pictures of Saints like St. Catherine and St. Joseph, halos and all, and it did make me smile. But I know that Donna meant more to her than any saint ever could and she was determined to keep a part of Donna in her life – more than that – she wanted something of Donna to stay with her, because of the way Donna had looked after her parent and the whole family in the last days. That is what good palliative care is all about. We are so lucky to have her in our lives.



  1. Hi Deidre
    Just wanted to say that I know I'm speaking for everybody at the local branch when I tell you that we're all thinking of you and willing you to keep up your strength in everything you're doing for Roch. If there's anything else that you think we can do just let us know.
    Our love and best wishes to you both.
    PS Your blog is beautifully written - even when you're describing all the frustrations you're facing.

  2. Hi Nick,
    Thank you so much for your lovely and encouraging comment. It's always so nice to get positive feedback. Hope to see you at the meeting on 9th.