In New York

In New York

Sunday, 19 February 2012

Sharing the Darkness #Phase One

Ever decreasing circles. That’s how Roch describes his life now. He can do less and less for himself. He says he has surprised himself by adapting to losses more readily than he expected. But it’s so hard. This last week Tom and I have been visiting my mother in Dublin and one of Roch’s brothers kindly offered to stay with Roch in my absence. Since I’ve been home, I’ve thought Roch sadder than before. This morning he shared some of his thoughts with me. Perhaps because his usual routine was disrupted, perhaps simply because someone different was helping out - whatever the reason, he told me this last week has left him feeling more helpless, more useless than before.

“Do you see a difference in me since you went away?” He asked me. I don’t think there’s any great change in his physical condition, but he’s definitely sadder. I asked him to list the things he is still able to enjoy and he was able to come up with a list quite quickly. I was encouraged by that. His life is so limited now. He’s feeling it more today. We had a moment of ‘sharing the darkness’ this morning and he talked for a time about his fears for the End. There are times when it is right to talk about the end game, the dark times ahead, those thoughts are in both our heads, and best shared with each other, but if the end is all he’s thinking about, if it’s preventing him from enjoying whatever quality of life he has, then it’s time to talk to a counsellor, because it’s a waste of his time.

I felt exhausted when I was at my mother’s house. I began to feel more relaxed and then fatigue set in. I slept a lot. I thoroughly enjoyed being with Tom, who is a delightful travelling companion. It’s tough for him and I think he needed a break too. I was looking forward to coming home and I’m glad we’re back - Tom and I agree that it was a good holiday but I’ve always found it hard to get back into a routine again after a break. The first time I went out by myself after Kate was born (I’m talking at least ten weeks after she was born) I remember the health visitor making a remark which assumed the break had left me feeling fortified for my return to the role of new mother. In fact, I was feeling that I could have done with more time. It just made me miss my freedom more! Having said that, I wouldn’t have swapped being Kate’s new mum for anything…I felt a bit like that yesterday. Back from Dublin, I slipped back into the routine here easily but it made me realise that sometimes I do miss the freedom just to think about myself and nobody else.

Roch has accepted the offer of a week in the Hospice, in May. Paradoxically, having just said that I sometimes miss the freedom I used to have, I’m feeling that it’s too soon for a Hospice stay. I don’t like the idea much. Roch told me about it in a resigned kind of way and I’m not sure he’s too keen on the idea either. It’s partly for him to see how he feels when he’s there - (Is it the place where he would choose to end his days?) It’s also partly to give Tom and me a break. I have to say, it feels weird. He doesn’t have to go, he can see how he feels in May.

Our talk this morning has made me decide to go back to Sheila Cassidy’s book, ‘Sharing the Darkness’. She writes about the relationship between the terminally ill and the professionals who care for them but I think there is a lot I can learn from her. I had thought it too early to read it, but the thoughts he shared with me today have reminded me that we have already embarked upon the journey.

From ‘Sharing the Darkness’ by Sheila Cassidy:

“What they want more than anything is that this thing should not be happening to them, that it should turn out to be a bad dream, that they should be rescued, cured, kissed better, made whole. But since this cannot be, they want someone to comfort them, to hold their hand, to face the unknown with them. They need a companion, a friend.”


  1. Hi Deirdre

    My husband has just spent a fortnight in the hospice and I can honestly say it's done both of us the power of good.

    He was in a lot of pain over Christmas and it was suggested that he go to the local Sue Ryder hospice to get his pain relief sorted. He too was a bit unsure about it, but in the end the MND Co-ordinator there rang and said he could come in the next day - no time to think up a reason not to go!

    He was insistent that I only go in on the Sundays to see him as he wanted me to have a rest as well. Lots of friends made the effort to go and see him, so a day didn't pass when he didn't have company of some sort.

    When the time came for him to come home, I too felt very uncertain. Like you say, having tasted 'freedom' how was I going to cope? Of course I missed him, but I didn't miss the hard work. But it also made me realise that I could and will cope on my own.

    Make the most of the time - do all the things you never have time to do, like clothes shopping, girly lunches and clearing out the understairs cupboard!

    Helen x

  2. Hi

    My husband did an interview the other day for Three Counties Radio, along with the newly-appointed MND Co-ordinator, and it has been picked up by the local BBC News as well.

    Thought you might like to it