Only at sixty, when she and my father emigrated from England to Australia to live with their eldest son, did she have a spell in hospital. Bought on, I think, by not acclimatising to either the heat, or the remote lifestyle. I am a great believer that unhappy people very often succumb to illness. If the spirit is sick, so follows the body. Whether it be coughs and colds, or something more severe. In Darwin, Australia, she had some small illness requiring an operation during which they perforated her bowel. With the nasty results you may imagine. Instead of being in and out of hospital within a few days, it stretched to weeks, then months. I remember getting an impassioned telephone call in England, saying " if you want to see me alive, you better hurry up and come", which we did, my daughter and I. Arriving whilst she was still in hospital. In those days, Darwin had a few such mistakes, today, the compensation would have kept her comfortably for the rest of her life. In the eighties, there was no such recourse for bad medical practice. The surgeons never admitted they were wrong.
The whole hospital fiasco was just the tip of the iceberg, she hated the tropical North, where everything was so different to what she was used to. She was never able to settle in Northern Territory, Australia. Her husband, my father, was happy to go around with his son, blokes together. Catching the auctions, mending motorbikes, taking the truck into the bush to check on the pearl farms my brother managed. Whilst mother, suddenly retired, had only the house where it was too hot to do anything all day, surrounded only by bush and strange creature, with no near neighbours, or shops. After I was there caring for her for few months, my parents went on to New Zealand to visit. With my mother not much better, no energy, no appetite, unable to swallow. Indeed, she hardly lifted her eyes to communicate at all. The visit was an attempt to stimulate some interest, a holiday which soon became permanent. Moving to be near their second son, where the heat was not so extreme, was what ultimately saved her. Within the family, we tell the story often, of how, her health not improving, she got on the plane to New Zealand in a wheelchair, unable to eat anything but food the consistency of baby food. To emerge to a tradition high tea of England, with baked ham, meats, vegetables, salads and cakes. Once seated, she cleared the table whilst we all sat spellbound at her recovery. Her specially prepared food 'mush' untouched beside her.
I'm sure my youngest brother though my story of what she required to eat in Australia, a complete fantasy. Her soft diet became a thing of the past, as was her inability to stand, or walk. Within weeks they had bought a house, settling down the hill from my younger brother, my Mother expressing her approval of the climate, and less creepy crawlies. Much to the dismay of both my Father, and my eldest brother I think, who had loved their time together in Australia. What else could they do if they wanted her to thrive.
This time, her illness at ninety, with both my eldest brother and my Father gone for over twenty years, the bare facts were that her organs were plainly wearing out. Worsened by the fact that as she aged beyond eighty, she decided to stop making any effort to get about, or take any excercise at all. Nothing would persuade her to walk as far as the post box at the end of her very short drive. Within a few years she was having difficulty walking, or balancing at all. The old adage of use it, or lose it is so true. I am convinced that if she had kept active, she would have lasted perhaps another ten years, well and active. Of course you need quality of life, to, so she lived as she choose to live. You must at least, enjoy the lifestyle you have. Perhaps she did, she had her reading, her knitting and her sport and soaps on TV. Naturually, as her muscle tone worsened, she was able to do less and less, but above all she was stubborn. A pity that the very end of your life cannot be so decided to suit yourself. Hers certainly was not, all choice withheld.
Now during this final period of her life, where we, as a family have tried to do the best we can for her. We knew her wishes, understood the illness was was now entering it's final phase. After so many years of no discernible decline, suddenly she was falling a lot, with digestion problems, as well as bowel and bladder complications. She went into hospital after a couple of such falls, which she hated. No matter how good the nurses there is no worse place to be for becoming isolated, with rest being the last thing offered. Once home again, we knew she wanted to finish her life in her own clean, bright home, surrounded by her families things. Despite worsening daily, through this last period as she was. Despite me being back in England again, after an emergency visit six months previously when we thought she was at the last. My brother and I tried to organise to keep her at home, which is what she wanted. By then, she was suffering from a whole raft of problems, the worst being her kidney deterioration, which, causes so many associated problems, she found it very difficult. I know she hoped to improve, hoped to get back to having some quality of life. Of course, that could never be, but I know she hoped for it. It's been demoralising and hard going for her and all of those who have had to cope with the day to day problems. Whether that were near, or far. For me, as for everyone else in the family, it's been a building strain and frustration. For her, the indignity of incontinance and pain began and went on and on.
Me, well, being several thousand miles away merely means you are just as involved on an emotional level and with practical decisions between my brother and I. Although being on the other side of the world in England, whilst she is in New Zealand, means broken nights have become the norm lately. There is little enough I could do, except for daily decisions, and progress to be discussed. As I struggle to deal with the fact I'm not there this time, although still determined to ensure things are as she wants them to be, as she reaches the end of this struggle, and of her life. We were able to get her extra help, three daily health visitors, with family filling the gaps at night and in between. The professional opinion was that she would fail quickly, and peacefully, her many conditions eventually causing a heart attack. No one took into account her amazing constitution, or her strong heart. Just like six months ago, she kept bouncing back, although each time with more residual problems.
Of course, my brother and I are in perfect agreement on all decisions regarding her welfare. Something I am sure we are both grateful for, I know I am. But having to keep the lines of communication open are only possible to such a degree because of modern communications. Emails, texts, phone calls and all the rest...even Facebook has it's part, although not my favourite medium. It's too 'in your face' for me, I'm too old perhaps to deal with the floods of personal things the young post. Let's be honest, much of it appals me. Different attitudes to privacy and respect I guess.
As she gradually sank, she ate less, she lost all interest in everything and coped less well. Her kidneys were soon down to 10% working ability. Everything began to fail but her heart kept going. Her strong, farmers heart just would not give up. God bless the woman, she had a hard end, with both building pain and all the indignities that double incontinence brings. I prayed for a swift end, I think we all prayed for someone to overdose her, to send her on......to help her.....for it to end. Her pain and her moans were almost non stop. Honestly, you wouldn't let a dog suffer so long, or so hard, why must she. No one deserves that hard end, not when there are the medicines to take away the pain. Murderers and rapists, those guilty of despicable war crimes are given more care and consideration than an ordinary, hard working wife and mother of Old England, or old colonial Motherland was. Even the final two weeks, back in hospital, they were unable to prescribe enough pain killers to keep her pain free more than a percentage of the time. I'm sure it must have been the same as that stage you get to when giving birth, when you become the pain. There is no you, no surroundings, only the pain. You are the pain, the pain is you. Except hers did not last for twelve hours, thirty six hours, there was no baby at the end of it. It went on, and on.....she had to suffer! Why must she suffer such torture?
Needless to say, this missive has taken a lot out of me. A lot to write. I struggled to set it down, to explain how the healing profession have their hands tied when it comes to such circumstances. At no time must the patient be given enough Herion, or it's substitute to be a danger to her life...but for goodness sakes, what life? Had she been in Holland, they could have helped, as in some other countries. We read all the time in England about being put on 'the pathway' once hope is gone. Where was her pathway out of there. No one would listen to the family, could listen to the family. Before the end, she wanted to die too, but with no recourse for doing so. She had no choice, we had no choice, but to see her, and hear her suffer hour after hour was insurmountable. I can understand how loved ones put a pillow over a face, I might have done so if I were there in person. Or an overdose, except we had no access to her medication.
My poor Mother......when I began writing this, she believed she had hopes of recovery, now she has been gone some weeks. In truth, it was only her last four/five days, when she was moved to a hospice that she was given enough drugs to keep her sedated, finally out of pain. That was hard to wait out, but at least peaceful for her.
Previously, I believed that to choose to be euthanised was a cowards way out, that it might hurt the family. Family who might think their loved one choose to leave them, rather than stay longer with them. Except it's not like that is it. When hope has gone, when pain builds, when bodily indignities only worsen with no hope of improvement, it's time to go. Who in their right mind would want to stay, would want to keep her there...no one! She should have slipped away peacefully weeks ago, when her failing organs put added strain on her heart. Except she had the unlucky combination of a weak body and a strong heart.
I for one, have made it clear that should I be in a similar situation to her at any time, then help me go. With, I hope the approval of the powers that be. I hope no one has to put their liberty on the line to help me, as I would have tried to help her. No one should be faced with that decision. Then..NO ONE SHOULD BE LEFT TO SUFFER.....as my Mother was, for hour after hour, after hour.
The government should have compassion, not to take the decision out of our hands, not to be scary big brother, but to give us, the family, and the pateint, the choice. Not to let the suffering go on......and on.......and on........
Therefore, as I said, after that harrowing experience I now say bring in EUTHENASIA. it was hard for me at a distance, what must it have been Iike for my brother in the same room....and so helpless to do anything.
Don't put more patients and their families through that! Give us all the freedom of choice!
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