Winter is a special time for us; it’s a time when panic could set in if I let it. It was two winters ago that Pam caught a cold and finished up with a stroke and nearly dying of pneumonia as a direct result. Last winter she fortunately suffered no winter-ills and this winter we are being very careful to protect her from such. Nevertheless, Pam throws caution to the wind once per week and still gets Therese (a TRIO Carer) to take her in her wheelchair to the Centro Shopping Centre for the groceries etc. It’s Pam’s only time out and if I wasn’t such a skeptic, I’d be keeping my fingers well and truly crossed each time.
It’s curious how the daily routine has evolved – here’s a brief rundown…
Pam’s four daily PEG feeds are scheduled for (approximately) 7am, 11am, 3pm and 7pm. Each has a pre and post flush with 30ml of water, however the pre-flush now contains an anti-nausea medication and is delivered 15 – 20 minutes prior to every PEG feed.
I reckon I must look really funny, dashing about in the freezing winter kitchen at 6:45am in my undies. (The air conditioner is still set to come on at 7am, but I’ll probably change that before too much longer.) There is already one pre-crushed anti-nausia tablet in the mortar, having been put there and so prepared as I was heading for bed the previous night, so I turn on the hot water and wait while it quickly drains its cold to (disabled tempered) hot, then I collect 30ml of that in a syringe and dissolve the powder whilst it’s still in the mortar. It’s then just a matter of drawing it all back into the syringe, drying out the mortar and going back and injecting it into Pam’s PEG tube back in the bedroom. I take the syringe back to the kitchen and then return to bed to warm up. In all, that operation takes only 2 minutes.
I’m out again at 7:07 to load the feed apparatus with Isosource liquid food in preparation for Pam's first feed. This liquid takes a couple of minutes to flow through to prime the feed tube, so while that's happening I go and start the washing machine to wash my yesterday's clothes and then return to close the flow of the feeding apparatus and take it into Pam.
This stuff takes about 40 minutes to deliver so while that's on the go, I do the three S's in the bathroom (including shower and shave), clean my teeth, apply underarm gooly, replace used towels etc, weigh myself and get back into bed until the PEG food has just 40-50ml left therein around 30 minutes thereafter.
When sufficiently drained (at about 7:55) I get up yet again, unhook the PEG feed kit (from the frame) and take it to the fridge in the kitchen, dress myself from the drying rack whilst there in the kitchen and go back to tend to Pam's 'getting up' routine - which is just about a book in itself. (...and having just written that phrase, it occurred to me that it's already been done - well maybe not quite a book, but it's 8 or so pages and it sits on the kitchen table so that others who come to care for Pam while I'm away have some idea of what she's used to. The details of daily routines and nighttime tasks are also described therein, by the way.)
Such is the morning feed routine – I get up three times! At the end of it all, Pam finishes up washed, toileted, fed and dressed, sitting happily in the lounge watching telly. Here’s a picture of how she was this morning.
Pam also has four 150ml hydration flushes scheduled for 9am, 1pm, 5pm and 9pm. The first two and the final one of these are also medicated. You don’t have to be Einstein to realise that this entire daily (every day) routine has twelve distinct daily phases. I’m 62 and occasionally get confused, but Pam’s a tolerant lady and takes my mistakes in her stride (if only she could ‘stride’).
We’ll both be happier when winter turns to spring and we are wishing and hoping that no winter-ills come Pam’s way. If I get crook, I can possibly take up residence in a TRIO house until I’m well again so Pam can't catch what I've got. In the meantime, TRIO Support staff give Pam 24hr care. However if Pam gets crook…
Well, if she does, I dare say I'll let you know.
