Tales From The Crypt - Monday 15th August 2022

Another week begins, with big changes in the offing.

It marks the start of the first week of Q being away in Australia, the first of four. It's going to be hard (restraint) but we can at least keep in contact - we had our first video call this morning. 

On top of that, today marks the culmination of a few days of soul-searching and discussion about where E should go when discharged from the hospital. This has been very difficult, weighing up what's best for E, the boys, and me. Initially, we had thought about a nursing home, primarily for reasons of close medical care when needed.  Since then I have been reassured by several sources (including the NHS) that this shouldn't be a problem in the community. Most important of all is what's best for E even if it might come with emotional challenges for us in the future. We have all agreed that E would be happiest and most comfortable receiving palliative care at home when the time comes. That way she would be in familiar surroundings, she would be looked after by carers and community nurses she knows and we could be with her all the time. E's carers have always looked after her so well. They are family.

There are still tough decisions implicit within this return home plan.  E would not be readmitted to the hospital again unless something really unexpected happened. If she got another infection then this would be allowed to run its course (exactly what this means in practice is still to be agreed upon) and she would be referred to the community palliative care team.  This feels like a big change.

Phone calls galore!  The care agency has called me to say that E will be home on Wednesday afternoon. I need to do some checking and organising.  Now social services have called to tell me the same thing, but with a bit of extra info (like how to get hold of the hospital palliative care team contact.)

Final (?) E-related call of the day with the hospital palliative care team. Lots of questions, a new understanding.  I think I am feeling reassured about what we're doing. 😕

Had a call with my big sister late in the afternoon before catching up with a couple of new albums (from Brian Jackson and Gwenno), hopefully not listening too loud for my sons.

I forgot to mention that I got my DNA results in at the weekend.  This was fascinating and identified one source that I didn't expect.

Time to make dinner.  I made this mostly on my own with a little help from son #2 near the end of the process before we sat down and watched the second episode of 'Outlaws' together. 

The weather is changing, so with any luck, my sleep won't be disturbed due to the heat.  Disturbed in other ways, probably, but what's new?

The Orb / 'The End of the End' / 'No Sounds Are Out Of Bounds'

[[Yep! I've done it again. Another song that's been here before. Twice, in this case, I think?

The title is not significant. Quite the reverse.

The lyrics, or some of them, at least, are. Not too obfuscated, I hope!

I never tire of this song.]]