Tales From The Crypt - Tuesday 19th April 2022

The last day's breathing space before E comes home.  That may sound bad in black and white. It certainly does when I read it back.  Although E is much better cared for at home and is happier in an environment where there are people she knows around her, there is another side to it.  For those of us who live with E's condition on a day-to day basis, it raises the stress level and stays high all the time, except when it goes off the scale. It means I can never fully relax and it's pretty clear that I sleep better when she is elsewhere, because I'm not constantly anticipating sounds that mean there's something bad happening or about to happen.

It's also nice not to have the regular interruptions of carers coming and going. Don't get me wrong, I really enjoy the carers being here as I count them as friends, in fact more than that, I count several of them as extended family members.  Apart from the wonderful care and love they show E, they have kept me going through some of the darker times.  You know who you are 💜

Nevertheless, until or unless there are medical reasons why she'd be better off somewhere else, I wouldn't have it any other way.  It's one of the many aspects of this life where there are two impossible choices to choose between. Ultimately I am in a position to rationalise and deal with these things, so it has to be about what's best for E. There is no other way. Every day I remind myself how lucky I am to have the friends that I have. Not to mention Q, who has changed my life in so many ways 💓

Against this backdrop, I am also trying to work, so the lack of interruptions helps with that, too. In fact, I must get on with work now. Not much more to say, or at least no more time to say it.

No day would be complete without chatting to Q, and we speak a few times before I start making the evening meal.

Son #1 and I watch a HIGNFY whilst we eat, before a chat, clearing up and heading upstairs to get ready for bed and speak to Q one last time before sleep envelops me.

Denny Zeitlin · George Marsh · Mel Graves / '2 Steps Forward, 1 Step Back' / 'The Name of This Terrain'


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