So Monday we went to Gerry's funeral. Here he is back in July at the Bushy Park walk in aid of the MND Association. That's his wife Pat beside me. Gerry and Roch were diagnosed with MND (ALS) on the same day. 16th June 2009. Gerry had a far more aggressive type of ALS.
About two weeks ago, Gerry caught a chest infection and when Pat called to let us know he was in hospital, I think both Roch and I assumed it was the first of probably many chest infections, one of which would prove fatal. This is often the way it ends for a person with MND. So I was shocked when Pat called to tell us that his Life Support was going to be turned off. I was even more shocked when I heard her story of Gerry's last days in hospital. Unfortunately it is a story I have heard before and it is why the MND Association are working very hard to push for a National Strategy for End of Life Care (see previous Blog entries).
It's such a rare disease that ordinary nursing staff don't have experience in dealing with a patient like Gerry. He couldn't lie down because he couldn't breathe lying down (for us this is so obvious - why couldn't they understand?) but they kept trying to get him into bed and complained to Pat that he was 'giving them trouble'. I should explain that Gerry had lost the ability to speak. For quite some time he had been unable to communicate by speaking. Pat told me that she asked for extra pillows to prop him up. They didn't come, so she went home by taxi, got two pillows, put clean pillowcases on, went back by taxi and propped him up herself. But that's not the worst. Gerry could no longer swallow and so he had to be fed through a tube in his stomach -what they call a PEG. But no-one at the hospital was prepared to take responsibility for authorising feeding and so for 36 hours after admission, Gerry was not fed nor was he given anything to drink. Was this one of the reasons he died from the first chest infection? I don't know, but it couldn't have helped, could it?
The day Pat told me they were going to turn off his Life Support, she also said that he was attached to so many tubes and there was so much equipment round the bed that she couldn't get close enough to hold him.
I am determined to make sure Roch does not suffer like this and that Kate, Tom and I are not standing by, helpless to prevent it. So how do we do this? Already Roch is accepted at the Princess Alice Hospice. We have been assured that when an infection like this strikes, he will be brought to the Hospice, where the nursing staff are properly trained. He will not be brought to the nearest hospital. Now I need to have some more reassurance about this and we also need to think about treatments and interventions. Well, we have thought about this. Now we need all of it in writing and I need to talk to our Hospice Nurse, Donna. It is the worst nightmare scenario for people with MND and their families. I felt for Pat from the bottom of my heart and I don't want to find myself in the same position.
For Gerry, it's all over now. The limitations, the frustrations, the indignities. You often hear it said, but I know it was true of Gerry 'Died after an illness bravely borne'. R.I.P.