Not That Unlucky

I'm slightly stuck for words, so much has happened in the last month, but for now we seem to be levelling off again.

Neil's last post listed the latest accessories our home has had to accommodate. That was the 21st of July, just short of a month ago. He mentioned the bed rail. Since then the rail has been and gone, we had an electric mattress raiser for a while, with a 4 inch high pressure foam overlay. He now has a profiling bed, and I have a single bed next to him. It was quite emotional giving up our bed but the benefit is worth it. The night before it arrived, and after waking to move for the eighth time, we were both in tears as we had been trying to find a comfortable position for him to sleep in for over an hour.


The same day the bed arrived, we had to go down to St. James in Leeds to pick up a ventilator. Neil's lung capacity is now down to thirty percent of what it should be and his oxygen saturation level, although fine during the day, was dropping at night. It's a bit like sleeping next to Darth Vader.

Both the bed and the ventilator have made a massive difference to Neil's awake time during the day. The equipment keeps coming, which makes our lives ever more manageable, but none of it compares to the people around us. We have an amazing stream of friends and family, without whom we would find it very difficult to keep going, both physically and emotionally. I can't help thinking that there are many others who are not as lucky as we are.

I can honestly say that this was one of our most difficult and lowest points and I will never be able to express in writing how it felt. Our little unit of three was no more.

Palliative care were brought in to help bathe Neil and get him dressed every weekday morning, and we had been given a night sitter about three nights a week, a nurse who would look after Neil in the bedroom so that I could try to get a good night sleep elsewhere. I know there are others who are not lucky enough to get this service, and were it not for having a baby in the house, I'm not sure we would have been so lucky either.

Without the palliative care team and the night sitters, I couldn't have coped. There were now three extra people a day, doing a job I had previously been doing on my own – by the time they arrived I was on my knees.

The trip to Ikea to buy my single bed was horrible. A trip out was always difficult, my anxiety would rise with every mile I drove further away from Neil, my nerves wouldn't calm down until I had all three of us back together under one roof. Thankfully I had company for this trip, but it was one of the days where I felt self-pity take over as we stopped to feed Oscar and I looked around the café at all the other families.

The journey to the hospital to pick up the ventilator had been upsetting, too. We had really been hoping that we would get to take it home that day, so I was confused when Neil's mood changed as we were waiting for the taxi home. He was normally a little upbeat after hospital appointments – we both were – but he started to get overly annoyed at the taxi being late. When I asked him what was wrong he stared at the road and said: "This is it... the beginning of the endgame."

This photo was taken on the 18th of August, you can see the ventilator pipe on the top of the chair. Neil is laughing because Oscar has discovered pushing the buttons on his recliner chair. – Louise (2013)


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@breathingfilm tweeted this page. 2013-03-06 16:28:34 +0000
Today's #Plattitude: a new bed arrives for Neil, and Louise feels "like sleeping next to Darth Vader." #MND #ALS
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