Stream of Consciousness

Extract from notebook 23/11/2010

What would happen if I ate sensibly and took some exercise? If I didn't feel tired ALL THE TIME? If I went back to Pilates once a week? If I meditated for 20 minutes every day? If I prayed (why have I stopped praying?). If I wrote 3 sentences every day? If I blogged as often as I had orginally intended? Would all that make me feel better? Would I feel less scrambled up, tinny, jangly, stretched? What would happen if I took some deep breaths? (Now, there's a thought). If I stopped.
STOP!
Stopped what?
Stopped making endless lists (they sit in my notebook as a constant reproach). Stopped ceaselessly turning thoughts over and over in my head - sofas, death, ramps, beds, measurements, paint colours - jewelled bead, frozen marrow, tint of a hint of a not quite cream but definitely not magnolia, oh for God's sake, MAKE A DECISION! Is the curtain material too much? Will the bed fit downstairs? (Just measure it!). Will Tom get into Sixth Form at St. Mark's? (Take that tone out of your voice, young man!). Will Kate EVER get rid of that cough, and keep up with the work, and be ok - so far away? OmiGod Roch can be so annoying but what will I do without him/What will it be like?/My life is closing in on me/oops nearly went to THAT PLACE but came back just in time...Will I ever get rid of the dust in the house? Will that painter ever stop talking? Oh shit I have to get up at 6 for work, must post that parcel to Kate...
STOP!
Maybe now would be a good time to take a deep breath.

Good news and good friends

When will there be good news? This is the name of a Kate Atkinson novel, and whenever my eye falls on the title in a bookshop, I have to admit, it does resonate with me. It is a question which has presented itself a number of times over recent months. So now I can tell you that there is good news - the MND Association have agreed a grant to us of £2,000 towards the works in the house! This comes from the local branch, so come July - you better be ready to sponsor me on that walk again!!!

Also today, more good news as I realise how lucky I am in my friends - how many friends good and true I have and how much support there is for me. How nice it was to call work re: sending of sick certificate and realise, to my genuine surprise and pleasure that I am missed and that there are people who would willingly come to the house armed with mops, buckets and dusters and be my 'Molly Maids' for the day! I can't pass up an offer like that.

I surprised myself today by asking my lovely neighbour Michelle to help me clear the books and dvds away in preparation for the painting. I don't know why it should feel so difficult! It is completely in my head. It's that Superwoman thing again. I try to do everything myself and then pretend to be surprised when I collapse. Now I'm really pleased I asked, she will help me and promises to bring cake!

(Note to self - learn to ask for help and accept help when offered, people may surprise you and bring cake).

Gerry McDonagh R.I.P.

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.