When your parents' time has come

I am tempted to start with the rhetorical question, "Is there anything worse than . . . ?" But the truth is whatever it is I am writing about there will always be something worse. Always was, always will be.

I am aware, too, that when I'm writing I tend to look at the lighter side of life, really enjoy seeing the humour in everyday occurrences. But it's not always like that in reality, is it? Sometimes life is tough, hard, cruel and unforgiving. Sometimes you just can't ignore that fact either.

As one leaves one's childhood behind and heads towards adulthood so one becomes aware of the inevitability of one's mortality and, more significantly, that of loved ones. And I guess like everyone else I thought about how I would cope with the deaths of my parents and possibly also my siblings. I thought too about the likely manner of their demises - my dad seemed a certainty for cancer having smoked heavily for most of his adult life. My mother, a sufferer of high blood pressure for close to fifty years, always thought she would suffer a stroke.

The one thing I had never considered was my parents both being very much alive in their eighties. And yet so very much dead.

Dementia is such a cruel finale to anyone's life. Both parents, long since divorced, getting the disease, albeit in slightly different forms, at the same time was pure chance. Life's cruel lottery at work.

At the time of writing my mum usually recognises me when I visit, more from hearing my voice than seeing me but my father during the last visit clearly had no idea who he was talking to and in no way recognised his grandson, my former wife or me. I know some people feel hurt when the recognition just isn't there any more but it was something we had been prepared for. You could clearly see my dad's discomfort as he tried to answer the questions from these three strange people. You could see him trying to think of something to say but his memory bank was virtually empty.

He does actually know he has three children including a son called Kevin. Just doesn't equate that person to me. I'm in my late fifties - when he thinks of Kevin he's looking for what - a twenty-something? A teenager? A child? Who knows how far back he has travelled already?

My parents are in different homes near the south coast of England and in my father's case he doesn't relate to his immediate life before he went in to care. His main concern is the mistake he made leaving the Royal Air Force and most of his thoughts take him back to those days. When asked he thinks he left about three years ago. He actually left in 1948!

Years ago my parents were family friends of Johnny Haynes, at that time captain of both Fulham and England soccer teams. My dad has various pictures of Johnny in his playing days adorning his room and when my dad mentioned him I thoughtlessly said that he was, of course, dead now. My poor old dad sat down and started crying, clearly not prepared for the shock. I felt mean for not thinking before I spoke. It was a guilt I felt for all of five minutes but no more - in fact up to the point when he asked me as I looked at another photo of the player, "Does Johnny still play for Fulham?"

I recall being chastised by my family on a previous visit to my dad for asking him directly what year we were in. He thought for a few seconds and then said 1989. It was actually 2009. It is one of the standard questions they are asked when being assessed for the severity of the illness and far from feeling as though I was being unkind putting him on the spot with my question I was aware that within minutes he would have totally forgotten that he had been asked.

Reports say that he is reasonably self sufficient, still remembers how to play the piano, is sociable and content. But for my sister, Carole, and me it is heart rending to read the line, "Needs help cleaning himself after opening his bowels." Not that he cares - he lives on an entirely different level to us. But - if he did know . . .

Where my dad has Alzheimer's my mum is cursed with that plus vascular dementia. That is far nastier. Simply the blood vessels in her brain are slowly clogging up and, bit by bit, her brain is being starved and dying off. She fairly frequently has mini-strokes and will fall or collapse for no obvious reason. And that means another small part of her brain has died, never to recover.

She is currently completely incontinent and needs to wear appropriate underwear referred to by my sister and me simply as nappies (diapers to my American friends). She is blissfully unaware of this, thank goodness, and has no sense of not being "normal" at all apart from she does actually realise that her memory is not there. Hence telling you of her plight does not deprive her of any dignity. Dignity is simply a concept she does not compute or understand.

That last sentence has grown in significance since it was first written. One friend has challenged my thinking, another considered it opens up the whole question of dignity as a concept deserving of thought and consideration. To me it is simple - a loss of dignity, whilst being caused often by a momentary experience, is, an ongoing feeling. It is the reliving in your memory of an embarrassing or humiliating event especially in relation to the witnesses of it. But if you don't have a memory, especially a short term one, how can you relive that feeling. And if you can't relive it how can the dementia sufferer feel a loss of dignity?

I believe the loss of dignity that people refer to for dementia sufferers is the loss of the dignity we wish for them and would normally expect to afford them but as the person cannot feel it themselves the loss is ours, not theirs. I'm prepared to be challenged about this but these are my heartfelt beliefs.

Before the incontinence inflicted itself upon her we were asked to supply my mother with underwear which had solid padded sides to protect her hips in a fall. Asked on one of our visits whether she had got them and found them comfortable to wear she lifted her skirt and started to remove them in full view of my sister, brother-in-law and myself. Mine and my brother-in-law's anguished cries for her to stop what she was doing was met with playful laughter - she obviously realised she was creating some sort of scene, some sort of discomfort to us but clearly didn't recognise that what she was doing was outside of the what is socially acceptable as 'normal'. I think that was when I realised our concepts of self-respect, social graces and dignity are totally lost to dementia sufferers.

My dad's clothes are put out for him each morning but the order he dons them are of his choosing so it is quite normal for him to have a sweater under his shirt. Equally my mother has no sense of discomfort at the ubiquitous food stains on her clothing.

Throughout our lives shared with my mother she was far from the warmest person I have ever known - very far from it. I have no memories of ever being hugged as a child and I suspect my sister and brother are the same. Her life seemed to be a series of rejections and betrayals and each one I guess made her more defensive, more reserved as though protecting herself from the next heartbreak. She was fiercely competitive at everything she did, always striving to do each task, each challenge to utter perfection and, of course, always failing to reach the standard she aspired to. I long ago discovered that perfection doesn't actually exist; it's always one step beyond your best achievement. She never did realise that so for all the time she had her mental faculties she was living a life of failure, a failure more imagined than real.

I can't blame her in any way for the person she was, we are all just the product of our upbringings and whilst we can change it really needs someone special to be able to guide you through those changes. Sadly my mother never found that someone special for my father most certainly was not it.

The only part of her life with which she felt in any way satisfied was her ballroom dancing years. She was indeed a very good dancer, good enough to turn professional but in those days - the late fifties and early sixties - married mothers of three children were pretty much expected to "do their duty" raising their brood.

So to see this hard, competitive, perfectionist woman as she is now, bewildered, fragile, so vulnerable, liable to tears at any time is truly tragic.

My mother and father who raised me have gone. They've left this world never to return. I feel as though I have already grieved for the loss of both parents - although I suspect it is in reality an ongoing process - and realise I'll never again be able to talk to the couple who raised me about my life, their lives or any of the myriad things families share between them.

This is going to sound so cruel but it's not intended. It really is as though my parents have died but their carcasses just don't know it's time to quit. In both of their conditions if they had been family pets we would have had them put to sleep some time ago. But that's not an option with humans, is it? Society expects us to sustain their frail bodies for as long as possible.

Ask the question in the context of should they be put out of their misery and it makes it so much tougher to know what is best for them. Carole and I talk frequently about this and the truth is we are not sure they are suffering any unhappiness. They are most certainly not in any distress. They are in a blissfully unaware existence.

I describe their lives as being like the ball in a pinball machine - they are just bouncing off the bumpers and flippers of life with absolutely no sense of direction, purpose or even a sense of being. They just are. Just are what? I have no real idea. They seem to be existing in a mental vacuum.

Inevitably Carole and I have discussed at various stages what we will do if either or both of them suffer severe physical illnesses, strokes or heart attacks, for instance. Fairly early on I questioned the point in prolonging the lives of either of them in those circumstances, lives which far from ever getting any better are deteriorating continuously and devastatingly and will continue to do so. Carole argued for some time that for as long as they were content in the life they are living they should be allowed to be treated for a longer life.

I don't for one second think either Carole or I were right or wrong although our views were poles apart. They were just our own personal judgements of the task we feared we would be called on to undertake at some stage.

More recently we have started to agree that prolonging life would now no longer be beneficial to either of them - particularly my mother - and therefore in the event of such a severe and catastrophic illness we would ask that no attempt is made of resuscitation. Carole is more involved in the day to day lives of our parents if for no other reason than she lives much nearer to them so there is every chance she will be the one first asked to make the decision. Unfortunately for Carole she has suffered enormously from guilt all the way through my parents' descent in to this nether world they now inhabit.

She was asked by my mother to promise she would never be put in to a care home and would never be made to leave Epsom, the only town she ever lived in. My mother's eventual inability to look after herself meant that Carole was forced to do both things, and at that time because she and I were estranged - family difficulties we've probably all experienced - she was forced to make those decisions alone. She and I can both clearly see there really was no viable alternative. Nobody who lived close to my mother was willing or able to care for her, both Carole and I lived more than one hundred miles from her and she had already reached the stage where she would wonder the streets at night aimlessly. She had also lost a ridiculous amount of weight because it never occurred to her to feed herself.

Carole had hoped by moving my mum to the New Forest she would share more time with her family. Carole and her three children would be able to visit her on a regular basis, have my mother come to their house for, say, Sunday dinner and also be able to take her out for day trips to the coast, garden centres, etc. And that is what they did.

The one thing Carole hadn't bargained for was the brevity of sharing these moments with our mother. Within twelve months she had deteriorated to the point where taking her out of the home, even for a few hours, would cause her to be disorientated and far, far from her comfort zone. And, of course, her incontinence made it less than practical.

So for Carole the guilt has deepened as the reasons and justifications she used for bringing Mum away from Epsom and her home have disappeared in some instances. It is very easy to see that everything Carole arranged for our mum was done with the best of intentions and was the very best decision - I have no doubt whatsoever about that and there isn't one aspect of her care that I think I could have done any better myself, really there isn't.

None of this prevents Carole being wracked by this dreadful feeling of guilt, though, and I know that despite my protestations that there really was no better alternative there is nothing I can do or say to help her cope with what she feels.

For that reason I have stressed upon Carole that if and when the time should arrive that a decision has to be made about either parents' long term future that I will be more than willing to make any decision and relieve her of that burden. She really doesn't deserve to carry any additional guilt for making that decision, she already has more than her share. I guess there is a real chance that my courage and strength could leave me at that moment but for now I feel I would be capable of making the choice that really is best for whichever parent and for everyone else involved. It's a situation I have imagined and run through in my mind many times.

So, having spent odd moments over my adult years wondering how I would cope when I got the phone call or message telling me that one of my parents had died or was dying I find myself now thinking of having to make the choice to let them go and, if I am to be totally honest I also spending a lot of time wishing so much they would both just go to sleep and never wake up.

I see no meaningful future for either of them, no sense or purpose, as we know it, in their worlds, no sharing of any thoughts or feelings with their family because they are at the stage where they don't know who their family is. Just a worsening of an already sad, pointless and meaningless existence.

My dad is still in some ways the same person he ever was but a hollowed out version, if that makes sense. The core of him, the essence of the man is gone. All we have left is the shell. My mum is the complete opposite of the woman she used to be and has no resemblance emotionally or personally to the woman who raised us, just in appearance.

I wish their lives and the futility of those lives would come to a decent end. They weren't the feelings I ever imagined I would have and I am so aware I feel no guilt or shame having them. Will I when the inevitable ending comes? I hope not, really I do. But I'm aware it is possible. All those times I pondered how I would cope with their demise I had never imagined I would actually end up wishing my parents dead but dementia is a particularly cruel and heartless ending to anyone's life.

Dementia – it just eats away the soul.