Love, Poetry and Revolution - Saturday 17th February 2024

After a fairly distressing few days, things seem to have settled down for E. Let me explain, if only for my own peace of mind.

E has continued to be disturbed and agitated, despite a number of interventions by way of injections.  Her symptoms were still not being controlled and she was still unable to rest for more than a few minutes though she must have been fatigued after all the mini seizures etc.

A Sue Ryder doctor, then the Sue Ryder nurse that 'knows' E visited on different days. As a result E is now receiving constant medication through a syringe driver.  I guess it's not an exact science but the doses of both the medications she is receiving through the driver has had to be increased.  Now, at least, she seems more settled and able to sleep.

It's been a difficult process as I have had to be E's proxy, as she can't say how she is feeling. I've had to interpret the spasms and groans she's experiencing to try and understand how she is feeling. It worries me that the medication doses she is receiving are based on nothing more concrete or exact than my interpretation of what I see.  Luckily the Sue Ryder nurse and other nurses have seen instances of what I've been seeing and agree that E was in pain and distressed.

Although no one is suggesting E is at the end, the Sue Ryder nurse felt that the changes E is undergoing are not reversible and this is part of a downward spiral.  E's quality of life is so low anyway that the last thing any of us want is for her to spend a long time feeling upset, anxious and in pain.  What in God's name is the right thing?

Life is in an uncertain state for all of us and it's impossible to plan or make decisions for now.  This is very difficult for me and those that I care the most about.

One small spark of light on the horizon for me at least is that I have a ticket to see Nick Mason's Saucerful of Secrets at the Albert Hall at the end of June.  All being well, I guess. Live music.  The cure for most ills.

Warpaint /  'Common Blue'  / (Single)


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