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.”

The monkey wins again

So the results of the Lithium Trial have been released. Andrew (Research Nurse at King's College Hospital) called Roch the other day to tell him. The trial has been a failure. There are no benefits to taking lithium in the treatment of MND. You know, it's strange. No matter how many times we said to each other over the past two years that we weren't pinning our hopes on it, that we really didn't think it would come to anything - now that we know it won't help Roch, that participating in the trial didn't have any health benefits, such as slowing progression - I'm still disappointed and so is he. I wasn't expecting a miracle cure. But it seems we both had a smidgeon of hope, that somehow lithium might slow the monkey down. Another win for the monkey.

I know that in terms of the bigger picture, all research is helpful. Knowing that the trial was properly conducted and not flawed in any way and having discovered that lithium is useless in the treatment of MND - well, they  can tick that box and move on. It's not time wasted for them. It does feel like time wasted for Roch, though. Two thousand, one hundred and ninety tablets later. We don't know yet if he was on lithium for the eighteen months of the trial. But he's been taking it for the past five months, for real, while we waited for the results. That's a lot of tablets.

A weather eye

It’s a beautiful day. Yesterday Roch told me he has been amazed that he hasn’t gone ‘stir crazy’. Apart from his two days in work, he hasn’t been out at all this past week. Today we’ve had a late breakfast together, and he’s gone back to bed for a rest. He didn’t sleep so well last night. We sat at the kitchen table this morning and watched the birds. The back wall of our house is basically all window and we never get tired of the view. I never liked birds much, but I have a growing fondness for them now. We have two daily visitors to the coconut bird feeder. Two robins. They grow very bold - and seem attracted by the smell of cigar smoke… Small groups of coal tits swoop and dart from one side of our garden to the other. There’s a tiny wren, shyer than the rest and a jay pays us visits now and then. I’m watching one of the robins right now. He has a fuller breast than his friend. His chest glows ruby in the winter sun. I’ve seen blackbirds too. We have wood pigeons, magpies and crows - but I like the smaller birds best. I leave a ‘Field Guide', illustrated in colour, on the kitchen table, so that Roch can identify any newcomers.


I don’t think we would have done this before. Taken the time to watch and appreciate. I know the robins always remind Roch of his mother. She loved them, too. In my more fanciful moments, I like to think that those robins are keeping a watchful eye on Roch just for her. I mean, have you ever heard of a robin liking cigar smoke?
Is someone keeping a weather eye on the watcher?