Nine Feet Underground

I could write a lot today, but I am not planning to.  Why am I bothering to write at all, you may ask?  Purely because of the date.  The twenty-ninth of February only comes every four years (yes, I know there are exceptions to that rule - I have written code to deal with that in the past), when it's a leap year.  I feel, for no apparent reason, I should mark this day with some words. It's starting to look a lot like E's decline has plateaued and we (the Sue Ryder nurse, maybe GP) may well decide to change the way medication is delivered.  We'll not stop giving her medication to reduce the likelihood of seizures, nor will we stop the pain-relief medication because I think everyone that knows agrees there is no turning back from that. Respite.  That's what I need, though as yet it's not easy to arrange. Maybe that will become a possibility next week. Within the family, we've been having lots of discussions about the end and how we want it to be, and where we w

I have a lot to talk about today, though I'm not sure how to begin.  Problem solved. It's a strange time at the moment. A lot of the positive, life-enhancing things I've been enjoying are on hold. E's condition is keeping me here, apart from brief excursions for a few hours or less.  Although she's on constant pain relief and calming/anti-seizure medication, there are things going on, intermittently.  As I am the main communication medium that attempts to interpret signs that mean she is in pain or having a fit.  This is far from an exact science and comes with responsibility that is concerning. Based on my observations medication can be increased, though the decision to do so and the amount of the increase are thankfully not decisions I have to make.  Today there have been signs of discomfort and now the driver is bleeping as it appears to be blocked somewhere, though after a couple of examinations I can find no evidence of it. The nurse has been to refill the driv

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 wo

After eighteen months of stability, it's been a while since the focus of these posts has been E, though that hasn't been the case in real life, of course. This past week has been very troubling with the onset of seemingly regular small seizures.  From our perspective we've been struggling to know if E's in pain and/or suffering discomfort, but increasingly there have been signs that she is. This morning I called the District Nurses to explain my concerns.  Whilst the nurse was here, E had several mini-seizures, and the nurse saw these and validated what I've been seeing. E needed pain killer and relaxant and she seems more settled, though there are still signs of seizures even with the medication. The nurse is going to contact both the Sue Ryder nurse and the GP, so I guess we'll have to wait to see what the next steps are. Against this backdrop, life goes on, though at an elevated level of agitation. Julia Holter /  'Spinning'   / 'Something In The

Where do I begin, to tell the story of...the week so far? After a long period of no apparent change, Monday began with E having a series of seizures (as much as anyone can tell).  We called out an ambulance, even though we knew E  is not for hospital admission.  The crew arrived quickly and they concluded that E had had a larger seizure followed by a series of smaller ones.  This necessitated a call to the district nurses as we needed some of E's PC medication to be administered, after which E seemed to settle. That very lunchtime I had the first of a short series of counselling sessions, which was as draining as such sessions usually are.  We have set a goal and hopefully if we get somewhere close it might help me get my sleep back to normal. Tuesday proved equally eventful and it seems that E is getting some kind of infection. This required a GP visit (fun to arrange!) and a prescription for antibiotics.  I just managed to get back in time from collecting the meds to allow the ca

A chilled day ahead after three consecutive days out, most notably with Wednesday's day trip to Dublin. Dublin for the day - how did it go?  A very early start for Q and me as we head off for Liverpool John Lennon Airport at five-thirty in the morning.  Unusually (for me at least) we have no luggage barring a small bag that fits under the seat.  We're flying BryanAir and it's a pretty full flight, but the window seat next to me is free so I moved into it.  I was glad I did as we had some great views of the sunrise behind us over the starboard wing. We took a taxi ride to the location of Q's meeting near the Botanical Gardens and parted company there.  I started walking to the James Joyce Cultural Centre on North Great George's Street, getting there far too early for its ten-thirty opening.  Exit stage left to a nearby coffee shop. I returned just after opening time and received a warm welcome from the director of the centre whom I'd only previously 'met'