In New York

In New York

Thursday, 20 May 2010

At the Hospice yesterday

Well, we did go to the Hospice yesterday. We were asked to be part of a planning meeting for the Hospice Families Open Day in July. The staff involved wanted the parents' input, ideas about what might work for their children, the kinds of activities to organise. It was my second visit and I don't find it easy. I'm hoping with each visit it will get easier.

I thought it was a useful meeting and I hope Kate and Tom do come to the Open Day. It won't be easy for them, no matter what kinds of activities are lined up, but I am hopeful, given some of the input from staff, that if they do come along, it will help to dispel some of the myths around the dreaded 'Hospice' word. They might come to see the staff there as a kind of 'bank' of people there to support them. I am getting there with that.

Two other sets of parents were there and I suppose for me, that was the most difficult part. Steve is 42. He has motor neurone disease and is at a more advanced stage of the illness than Roch. He and his wife, Tracey have three young children. I was surprised at how hard seeing Steve hit me. Bit of a reality check. I know Roch and Steve have been in contact through the PLM website since the meeting and I hope Steve will understand what I mean. I wanted to talk to him, and to Tracey but I didn't get the chance to talk to either of them. I felt shy, too. I wanted to ask him questions about how he was communicating - how did his 'communication device' work, exactly? I wondered at how calm and capable Tracey seemed. I ask myself, will I be able to be like that? Seemingly relaxed and accepting. I felt such admiration for her, for both of them.

Roch talked to Steve for a while and I know he found it helpful. The way the staff made sure Steve was placed beside him seemed a bit contrived to him, but I think if they did plan it that way, it seemed to work for Roch and I hope it worked for Steve. Steve has a blog too and we read some of his posts at home later on. Very interesting and helpful.

During the meeting, Tracey asked if grandparents and cousins could come along on the day, and the reply was that as they were part of their support network - yes ok. Later I felt a rising panic. I don't have a family support network here. It's basically just down to me. But then, a lot of family members cope on their own - I mean day to day, with carers. I guess I'll be one of them. It's pretty scary tho'.

I look forward to meeting Steve and Tracey again at the Open Day.


  1. it was great meeting Roch and I hope we get a chance to talk another time. I have forwarded the blog to Tracy and I look forward to reading iI. Steve

  2. Please don't admire me! It's easy to look collected and calm to others- you should see me at home! I have had much longer than you to get used to living with MND. I remember also feeling shocked seeing sufferers more advanced than Steve and after a while this way of life becomes our "Normal" although a very surreal one. We are lucky to have Steve's family locally who are a big help- our kids are too young to leave helping/responsible for Steve so I would have little/no life without their help as "Steve-sitters" as well as child minders. We also have help with carers- all funded which is very much thanks to Ann and Mop at the hospice pushing for it. I thought we would have to pay for any care- many others do.
    Anyway I am sorry I didn't get a chance to talk with you too- it was a bit of a public forum but to me you also looked very calm and relaxed! Do email me if you would like to talk further- phone can be difficult to have time for long conversations!! Take care and keep up the blog- I haven't done one but have left it to Steve- he does find it very therapeutic I know.