Bath time, houses and plain speaking...

Hello all,
That’s right, I’m clean again following yet another wonderful bath. Nothing to report on that front save to say that Louise and I had another chance to talk a little more. Talking of Louise, she is as we speak on her way to Scotland with Oscar. The purpose of their visit is to have a look at a cottage she has seen in a small village in Fife with a view to buying it as the first stepping stone into her and Oscar’s future. Now it was suggested to me today that this would be difficult for me to stomach. My response to this is simply that I would much rather know where my little family is heading, so I may be secure in that knowledge when the time comes, than not and have to worry and wonder. But each to their own and answers on a postcard.

The plain speaking was done between myself and a very amiable Consultant in Palliative Care regarding exactly what we intend to do in the immediate future.  My advance directive sets out my own requirements, however these are not finite and may be subject to change.  Due to the fact that my swallow is already affected and my speech is not, my advance directive is already applicable if I wish.  Due to the advanced nature of my condition it seems unlikely that I may be fed artificially, although consultant is to confirm this.  Therefore I am faced with a number of options.  I can choose to go any time I please under the terms of the advance directive and also because I can physically tell the doctors so.  An alternative is to remain on the ventilator and receive fluids artificially thus giving me additional time to continue participating as I have done until either my speech fails or I succumb to the lack of food.  Another alternative is that I contract an infection which makes the above two rather irrelevant.  There are others but all equally difficult.  I had decided for the moment to jump off this particular bridge when, and absolutely not before, I have to.

But, having said all of the above I am of good cheer considering the fact that we are officially in a recession and I think I’m about to be subjected to Coronation Street again!

Oh and by the way, the interview last night seemed to go pretty well.  I’ll let you know when you can all rush out and buy a newspaper.

All my love,
Neil x


We both had mixed feelings about looking ahead to a future where we were not together. It didn’t feel right, but if we didn’t act upon it, Neil would not have time to see a picture of that future, and know that he had helped us get to that safe place.

Neil’s life insurance had paid out when he had first been diagnosed. Responsibly invested in 2007 when the market was buoyant, the interest accrued monthly was enough to give me breathing space to find work after Neil’s death, without corroding the lump sum too quickly. During the time that I had been on maternity leave, my husband had been diagnosed with a terminal illness, I had left London and become a full time carer. There was no job waiting for me.

Our investment had been my future security, but 2008 brought the stock market crash and interest rates fell to an all time low. We decided to put the money into property instead, so that no matter what happened in the immediate future after Neil’s death, I would not have to worry about keeping a roof over Oscar and myself.

Neil wanted to know that Oscar and I would have somewhere to go after his death, he cared about the future for his family. We knew nobody where we were living apart from health professionals, it didn’t feel like home and he knew I would want to move on after his death. So much had happened in that place, but nothing that I would want to keep living with.

After the incident when Neil thought he was about to die a couple of days previously, I was reassured that he still wanted to live, and he was not about to make the decision to apply the wishes in his advance directive. With this knowledge I was able to make the journey to Scotland. – Louise (2013)

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@breathingfilm tweeted this page. 2013-05-13 15:40:02 +0100
Today's #Plattitude: Plans for when Neil's Advanced Directive could come into effect... #MND #ALS http://www.iambreathingfilm.com/bath_time_houses_and_plain_speaking?recruiter_id=2
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