Monday, 6 April 2015

We Are Not Alone

Filming My Father In Life And Death click to watch on demand until March 2016 

If you want to know how MND has affected me and my family, watch this Channel 5 documentary. Although it's about another family , the similarities go way beyond us both being called Steve. Their journey with the disease has been almost identical to ours, warts and all. In fact THIS is the film I wanted to make, but I didn't have suitable footage from the earlier stages. However I am still happy with my Enduring Motor Neurone Disease video and its 14,000 views on youtube know from other MND sufferers, the Isaac's and our experience isn't universal but I suspect it's representative of many families dealing with this disease.
The documentary was very helpful for Tracy as I know she struggles with the same things as the Isaacs; carers in the house, feeling guilty about not doing my care, and most of all the fear of living this way for many more years. I don't begrudge her feeling like this because I have no idea how I would feel if our roles were reversed. 

I haven't yet had to make decisions about ventilation options unlike Steve Isaac. My brief experience of using the BIPAP ventilator wasn't good and a full tracheotomy requires significantly increased care afterwards, so at the moment I am of the opinion to let nature take its course. But then again, like Steve, I don't believe there's anything after death so maybe, like him I will choose to stay alive at almost any cost to myself. But what cost do I expect everyone else to pay. I think if I chose to have ventilation, our living arrangements would have to change. However, what's actually more difficult is the scenario where I stay stable indefinitely. 

I think I would be correct in saying, neither me or Tracy want the next 5 years to be like this. Again, this was discussed in the documentary; the fact that they have begun to lead largely separated lives, discussing living apart and Steve encouraging his wife to meet someone else. All of which matches our experience. In fact the recently acquired apartment was to address one of these issues and gives us options in the future. MND rarely drawers people closer and in both our cases it has forced apart to the extent that there's very little relationship left, just mutual respect and common memories of better times. We spend an hour or two in the evenings watching TV together and and occasionally go to the odd gig but that's about it. Yes, we're both very sad about this but it's a mutual decision. And as for Tracy meeting other people, whilst I suggested it in all sincerity, I appreciate the logistical difficulties and the potential issue of friends' and family's views, not to mention those of the boys. But we are living in VERY unusual circumstances, so people may need to accept very unusual decisions! 

The biggest difference between our situations are the ages of our children, which has definitely influenced our decisions to now, and will continue to drive them for a little while longer. But on a positive note, we are in agreement as to what is likely to happen and that has been made easier to accept with less guilt as a result of this film. So to the Isaacs, thank you.