Wednesday 4 December 2019

What I have Learned...

...from nursing a terminally ill man for two months, and mostly doing all the looking after one for 6 months..

It's bloody hard work. And relentless. After a while you long to run away and not have to prepare meals which don't get eaten; prepare and provide drugs; change beds and clothes. Washing, washing-up, more washing, more sheets and towels and  t-shirts and pyjamas...

And you don't go, because that is unfair on your Lovely Man, who is almost always unfailingly polite and grateful and kind, even when you don't get things right or assume stuff or make mistakes. Or inedible dinners.

Eventually you need more help, and it's a good idea to ask sooner rather than too late, because then the pain in your back goes a little and you stop panicking that this sad soggy lovely man might fall over, or off the bed, and you may be helpless  to get him up again.  The invasion of the house is hard, too. We never spent much time entertaining visitors, and in the last 8 weeks we have had hundreds of different feet on our doorstep, nurses, doctors, delivery-people, palliative care, and all and all.  The cat is disturbed, and plays up.

And equipment! Dammit, all this stuff is functional but it's also astoundingly ugly. White-coated metal tubes everywhere. Yes, the electric bed is wonderful, but oh! I shall be so glad to see it go. I have no words for shower-seats that were not attached to the wall, toilet-lift frames that pinch, and grab bars in the wrong place. No, I will be suitably grateful, but I will also be very glad to have my dining-room back.

You spend far too much time waiting in the chemist's for "lost" prescriptions; cooking food which gets thrown away, and sitting quietly in a dim room while your Lovely Man sleeps, in case he wakes and needs you for something. You get up three times in the night in case he needs something. You empty his catheter bag and his stoma bags and you clean and replace these, and wash him, and comb his hair.. And you don't wash his hair often enough, as it's so hard to arrange. And, as you know he likes clean hair, this makes you feel inadequate. And you are so tired all the time.

And you feel bad if you go to sit by the fire when he cannot, to watch TV when he cannot, and go outside when he cannot.
This has been the most gloriously beautiful Autumn and I cannot speak of it, because it's unfair..

And then, he is gone, the sun comes up and the birds sing, and the relief is so enormous, that you want to sing and shout, but that would be wrong?