I’m writing this blog sitting in my parents lounge. Mum is sitting upright in her Laura Ashley chair which keeps her hip at 90 degrees, Teresa is sitting on the floor, Bonnie the dog is sitting on the sofa and dad is lying in a medical bed. He is fairly zonked out as the carers have been this morning and two young women helped dad up sit on the commode and washed him, applied menthol cream to him, re dressed him and now he is zonked out.
There have been a variety of healthcare professionals who have visited over the past few days. St Luke’s Hospice nurses who assess dad and instruct others who are not so well informed with end of life care. The GP, a young woman from Northern Ireland along with a third year medical student reviewed all the meds and decided it was time for a syringe driver. The urgent care district nurses who came out at night to give dad an injection and settle him. The St Luke’s nurse who set up the syringe driver might need some support as the evening (only the night before last) he came to unlock the silver box bag of controlled drugs we had brought up Fish and Chips. We ate our chips – Mum, Andrew, Teresa, Phoebe, Nick and I and dad seemed to rally. He sat up and was quite lucid. We started to sing songs – To the Land of Macleod by the Corries, A life on an ocean wave, the ballad of the Green Beret (a truly dreadful song about the US Marine Corps) and dad joined in. The poor St Luke’s nurse sat through all of this and then the telling of terrible jokes. Dad seemed more settled. He sat up and held hands with mum. The syringe driver has a potent mix of “comfort drugs” to keep dad less anxious, more settled, to stop any pain from renal failure. The drugs are kept in a locked box and administered over a 24 hour period. I stayed with mum until 10pm as then the Marie Curee nurse arrived. Her job was to sit with dad and keep him comfortable and she did just that.
Dad really appeared to decline the next day (Wednesday) he appeared exhausted and everything seemed more of an effort. His breathing is very ropey and he spent a fair bit of the day asleep. Getting on to the commode was an effort for all. Two nurses from St Lukes came to visit him and part of their job was to organise more overnight care. My brother did the shift last night until I arrived early this morning so he could go home and get some sleep.
Today, Thursday dad has slept away most of the day. The district nurse has come to top up the syringe driver and fit a catheter. This should stop dad wanting to get up as he doesn’t have the energy to do so. His breathing is loud and rattly. It is all rather distressing. Yet… he can still communicate with us. He asks for tea and makes the odd comment. They do say that hearing is the last thing to go.
I read a book, recommended by a great chum, who has a senior nursing post dealing with prem babies. The book is written by a palliative care consultant – Kathryn Mannix, it is a series of stories about the end of life. It vocalises the fears people have about death and explains how it can be made comfortable, peaceful and kind. She outlines the way in which the body fails – through cancer, old age, diseases and says there is a pattern. The patient sleeps more, eats and drinks less and gradually drifts off. Just before the end of life there is agonal respiration a very definitive type of breathing which is an indicator that the patient is going to die. We haven’t reached that point.
I thought by reading this book I would be able to disassociate death with my dad and I’ve been sadly mistaken. Seeing my dad’s decline and the effect is having on the entire family is one of the most difficult things I have experienced. Everytime I say “goodbye or goodnight” he says “love you” and I then cry in the car.
We were told, I was told by the consultant that when dad was discharged he would have a “good week to ten days” that was on 30th September. Today it is the 17th October, dad is confined to a bed, syringe driver in place, catheter fitted, sleeping, sometimes saying “oh dear” or “that is wonderful”, having the occasional sips of tea. So Kathryn Mannix is right there is more sleep, less drink, less food and he is still with us.