It’s been a funny old week. I saw it stretching before me, a world of possibilities, lots of time to myself, time to sleep, to write. In fact, although I did nap on occasion during the day (so tired!), I found when I went to bed early that I didn’t fall asleep quickly, but had to read for a few hours until I could drop off, then woke early and found it difficult to go back to sleep. I worried away at some poetry every now and then, watched over the studying Tom and wandered aimlessly round the house, which felt far too quiet and empty. Maybe next time, I’ll try to get away for a few days.
I did spend one lovely evening watching one of my favourite films (not Roch‘s kind of thing) and I definitely ate too much chocolate! A highlight of my week was a visit to Twickenham Rugby stadium to watch Leinster winning the Heineken Cup! Thanks to my brother for a great afternoon.
I went to see Roch a number of times. It’s a lovely place, The Princess Alice Hospice, in an almost rural setting. It helped that there is a very nice pub nearby which serves delicious food. There were several visits to the Prince of Wales! We spent a pleasant Sunday afternoon there together, just the two of us. Although he’ll be glad to come home today, I think the stay was okay for him. As he remarked to one of the nurses, “It’s not as bad as I thought it would be.” A good deal better, I think. Tom, although in the midst of exams, went to see him on Saturday and they watched the Champions League final together. It was great that Tom had the opportunity to see the Hospice for himself and spend time with his Dad there. Seeing Roch there was not too traumatic for us as he is relatively well at the moment. Many of his fellow patients were very ill indeed and their presence is a reminder, if we needed one, of the main purpose of the place. It is, in the end, a place where people go to die, but palliative care began for us when Roch was diagnosed and will continue through the years of his illness and I thank God for it. Roch cannot praise the nursing staff highly enough, or Donna for the careful preparations made for his visit.
But it will be good to have him home.
Last night I went to the first MND Carers support meeting for West London, arranged by Mick Stone, an Association Visitor with the West London branch of the MNDA. It was a mixed experience, depressing, moving and uplifting in turn. But I was glad to be there. I met a group of inspirational people, all caring for family members they love, brought together by the tragedy of this awful disease. So what am I left with this morning? I am feeling angry.
Once again the words ’postcode lottery’ came up. This is a phrase frequently used these days but its meaning took on special force for me last night. I am grateful that we live in Richmond, as some MND families , living in other areas, have little or no support and struggle for services which I was beginning to take for granted. No more. On behalf of those people, especially those whose relatives have a rapid form of the disease, I feel angry today. Change upon change in condition occurs, deterioration is fast - not only do they have to cope with their feelings about what they see happening to their mother/father/partner, but they have to do so with, it seems to me, little or no professional guidance or help about what to plan for or advice about what would help, financial assistance etc. So glad Lorraine Carter was there from the MNDA to take up the baton on behalf of those present, but we all need to do what we can to make sure to spread awareness of the disease and its devastating effects (one carer last night described diagnosis as an ‘earthquake’ and I thought yes, what a good way to describe it) and the need for the same level of services and support to be available everywhere around the country to all who are affected. The usual problems were raised - hospital staff who don’t understand what MND is, GPs who fail to diagnose early and later fail to provide adequate care after diagnosis. It’s not their fault, many GPs will never see a patient with MND, others may have one MND patient in their entire career. But that’s no help to that patient, or their family. How could you not feel overwhelmed as a carer?
I felt grateful that, for Roch, the progress of the disease is slow, and that we have had, so far, so much support and help from so many. I know there are others like us. But I wish I could do more to help those who are not so lucky.
Last night I glimpsed a future which frightens me but I saw how bravely others live a life devoted to caring for relatives suffering in more advanced stages of MND and took heart from their courage and their tenacity. I learned a lot last night from my fellow carers and I look forward to more opportunities to meet with them.