Wednesday, 29 April 2009

A Tragic Unfolding of Decline

One of the benefits of being conscious about being conscious is that we try to put ourselves into the minds of others and ask what is it like from their perspective. From this grows the possibility of empathy and indeed sympathy. The basis of ethics is this reciprocity between people.

We wonder about the psychotic, the person who seems to have no insight or sympathy with the other, and who operates at any level to push through, victims made along the way having no impact at all back upon them.

There may be those too who can sufficiently put others and their experiences to one side, while they push through according to 'rules of the game' and make their own individual progress. They stand on their own two feet even if, at times, it leaves some people with only one leg.

On the other hand, one looks at one's own life and its sheer lack of any achievement in worldly terms, and its utter insignificance, taking respite only in the wonder of consciousness itself and the value of small moments of reciprocity. Little matters of shared talk create conversations that have some inkling of pleasure. The market system and the bureaucratic system fail to function in this case, and you drift along materially with virtual no resources for renewing material things - but at least not in abject poverty thanks to a collective welfare norm, but nevertheless that creep towards a point where things just fail to function.

We've lived with others, time is moving on and running out, and life moves on, and it moves on to death of one who provided and on whom perhaps one was too dependent.

Yesterday my mother was sectioned under the Mental Health Act. She suffers from Multifarct Dementia, and this is one of the cruellest of dementias because it is a slow drip drip drip of the brain shutting down.

I lived with my mother almost all the time since her separation and divorce, and this was too long and it was too convenient. Too good. My mother started getting strange experiences of momentary losses, like suddenly being lost inside a supermarket, or not knowing where she was in the bathroom. These experiences were instant and over. One day Elena (wife from 2001) and I went to Cambridge, for my medical tests, and my mother fell out of bed, and we couldn't understand the sheer force of her annoyance that we were not there for some entirely unpredictable event.

She grew resentful of Elena, who, as it happens, went to Portsmouth to do teacher training, and so I decided that afterwards, we would have to move away, despite my concern for my mother's welfare. When that point came, I didn't have the job or another job that would have made the move possible, but the situation with my mother while she was at Portsmouth became increasingly impossible. As it happened, Elena was so frustrated with British education and its virtual realities that she went away to do a statistics course, but this followed the crisis period.

Listening to my mother, my sister and niece supported my mother's account, and there was what amounted to a household coup d'etat. With no foreknowledge, my mother changed her will against me, and a move was engaged that installed her in a rented house in between the two owned houses of my sister and niece. In the bit between their visit (my finding out) and her move away, when other people were here constantly, I managed to turn my estate agent involving eviction into a rent agreement, as a sort of crisis management, with the benefit of looking after the place, and potential garage rebuild and orderly exit. However, all round I was regarded as little other than a piece of shit, and that over the year I had "changed" to become a toe-rag.

The truth was I was trying to manage my mother and her experiences and her increasing aggression. It wasn't easy, and the social services told Elena and me to get out. When she got lost in the bathroom, I insisted we see the doctor. The doctor said this or that could happen, or not (with not what this or that was) and my mother said she felt a bit foolish. Anyway, I took my mother on holiday in which she had a fall, and I transported relatives across the country before my mother transferred hospitals and came home in plaster. And that too was turned into something to do with me having a free holiday while my mother was in a Lake District hospital. And this after taking her back after recovery, to see the places she'd missed. And my mother needed looking after on both occasions.

I had a story to tell about managing my mother, but somehow it was all lost via the telephone and in one visit of my mother to her relatives, when the plot was decided. I was trying to find ways to understand my mother's behaviour and inability to sequence anything, and manage her. I was of the view that I had been done over, and on top for the material benefit of others. What sort of family was this?

I'm quite satisfied how that this wasn't the case: my mother had a neighbour help her do the will changing, and then the sister and niece really thought they were helping her get out of a situation they believed was harming my mother. In other words, they were acting in ignorance not selfishness. They went along with it all, and took her out, and I was regarded as dirt. I tried to make contact and talk about the matter after the move away, but the phone was put down on me.

Within seven weeks the experience I knew to be real was transferred to my mother's new location. Now everyone locally was telling me to cut links and get out of the connection, to rent privately and save my own situation. Actually I wanted some sense of justice, and to reverse and restore what had been done against me. I've come to see that this was a mistake, but the strategy was to sit and wait, and it seemed to be working for a while.

It was a mistaken approach because the Transient Ischaemic Attacks (TIAs) just go on and on. The idea was my mother would fall out with them, and return, and restore, and I'd be the wiser. It doesn't work like that. However, I made a tentative visit to where my mother now lived, and demanded some one to one space with her to talk about the situation. My mother then wished it all hadn't been done as it was (and in a sense, for someone who never apologised for anything, that was enough). However, the second visit I made proved to be more awkward, because I wanted to say what I had done and how I had been treated. Too much perhaps and I left frustrated and surrounded by suspicious people. However, I started giving advice from experience, and then came the breakthrough of a visit back here. My sister and niece were able to experience"respite", though at first that was not one of my motivations. They'd made the bed and they could lie in it.

On one visit she was convinced she was not in New Holland, and we were both in the wrong house. I had to resist. At night my mother stood in the upstairs hallway staring. I could see that she was trying to work out why it was the wrong place and yet wasn't. When calmed enough in the daylight next day and a bit more 'normal' I did take her on a round car trip via various villages and back that proved we were in the right house and village - which my mother laughed off.

About a year ago my mother came here for what was to be the last time and I couldn't handle her at all. She was up different times of day and night, that half of our house was occupied by neighbours who were evil (when next door had become vacant: they had been awful neighbours), that she was lost on a number of occasions, or moved about the landing on her bottom, and her clothes were put on in the wrong order, and conversations ended up having a logic of their own. First days good became later days bad: that she wanted to go home when people were about to take a few days away (the conversation on the telephone proved she had to stay longer - and as soon as it was over she immediately said about going back there and then). When the time came to return, she wouldn't go and it just ended in the frustration of arguing - and the guilt of arguing with someone with dementia is all consuming.

So here we are and she has now proved too much even for constant and almost systematic oversight. She is frequently very aggressive and can deny what has been going on. She spent a week in bed and said it never happened. Self-neglect, lack of basics, has worsened. More than this, she is wearing people out who are not exactly in the best of their own health. Thus I have spoken to my niece today and counselled that enough is enough, time is up: she cannot come back to a situation where they cannot cope any longer. The drug treatment has started, so has hospitalisation: what this means is something like personality removal (I think - but it is distorted anyway) and diminishment as part of necessary handling. Maybe it sweetens and removes the aggression: my mother has already had a bath and shower she simply would not take for her own relatives. Everyone is gobsmacked. Yes, she stopped having baths even when with me, and these persuaded self-washdowns were inadequate (social services said otherwise).

What is it like from inside that consciousness? My friend, whose mother has dementia too, sees the aggression as a form of personality assertion, and I think that is right. There is an overcompensation for absence of actual control over situations. Go back to when life was 'normal' but yet suddenly I did all the cooking because my mother could not plan the cooking sequence for a meal; go back to the last time she attended the art class and the tutor said something has gone and it had - her art lost its creativity.

One asks whether the aggression has always been in there, suppressed by layers of culture and self-performance. I think it was, because there were moments when it appeared, like at her separation. But it is a surprise, and the extent of it too.

We are prisoners inside our own heads. We don't just die: we die many many times. Inside we protect ourselves and we deny what is going on. But the window out gets smaller and smaller.

Not long before the first symptoms at all appeared, my mother's sister was finally overcome by the effects of a life of smoking and an unsatisfactory operation that left her short of breath for years. That side of the family had its divisions too: we here got people together appearing to be reconciled before she then died. My mother and I visited her sister in hospital, and the diminishing seen in the stature of the body was obvious, and she feared her own oblivion and feared what might come after. My mother said to me that if she ever gets like that I should do something to end her life quickly.

Elena and I agreed that my mother never outwardly grieved for the death of her sister. We think that was one trigger for her behaviour change, but it cannot be a trigger for a series of mini strokes that have gone on for years. But we don't practice early euthanasia, and the person undergoing these has a quality of life (and even now does) that they will cling on. I just wish we would let go, and aggression is an evidence of clinging on.

Life is just cruel, but this is how we are: biological units that do as they will do, via the death of cells. Somehow, I think, we have to train ourselves when fully competent, when awake, to let go. Any of us may travel down the road of dementia that is more than ageing (my mother is 85: there are many capable 85 year olds; when she was 81 she was like a 70 year old); somehow we need to develop a means by which, should this happen, we can smile at the world through the narrow window.

We may not achieve much materially, or have much impact, but we do in small corners. We don't ask to be born, but we are, and we find ourselves in peculiar life-experiences. Sometimes I wish I had grown up bilingual, like in Wales where I feel an affinity, thanks to teenage experiences, but my unique biological unit wasn't there, and may not have been anywhere but for here, inside this bundle of renewing and dying cells. That's it. So here we are, and here we live, and we do something small, and then there is the task of dying and vanishing like sand.

My mother has been dying in stages, but it has not been a good death. Inside the prison, arranging a good death I see as a kind of religious task, and where religion or the spiritual interacts with who we find ourselves to be. Plus we try to imagine what the other is experiencing. It is very difficult to empathise with such difference. I once decided not to be like my father and his sense of aggression and failure and frustration, and took a different road (though obviously I still exhibit some of this); but with my mother I just puzzle about such a decline and what it means.

Somehow the biology of what we are lets down such a marvel as consciousness and self-understanding. Most animals are freed of this reflectivity, but to us it becomes an amazing wonder and a dreadful burden.


Tim Goodbody said...

what an extraordinarily honest and open post. I do hope you found the experience of writing it helpful, and I hope you do not mind if I pray for you and your family.
thank you

john said...

Moving, probing post.

Irritating as I generally find you, all sympathy with all of this.


Mary Clara said...

Adrian, having lived through this with two beloved elders, I know what it means to lose someone by inches over a very long time and to try to manage the unmanageable, to ameliorate the intolerable and the hopeless. You have my utter sympathy and my prayers. No matter what you did it would never have been enough in the sense of solving the problem or achieving emotional resolution among all involved, or peace for her. When there are big holes in the bottom of the bucket, life and consciousness and civility will inevitably drain away more and more. But what you did WAS enough, in that it was your best. Be kind to yourself now, and rest and heal.

Pluralist (Adrian Worsfold) said...

Grateful to all and awkward.

Erika Baker said...

my own mother had a life long undiagosed mental illness and would frequently turn into a completely inward looking, aggressive, self-hating and destructive woman. As a child I felt it was my responsibility to help her, and often, I was indeed able to "snap her out of it in time". Ultimately, she rejected all serious help and chose, as my sister once shouted at her in rage: to just rot away from the inside.

The brain is a fearsome organ, it can destroy the person it represents and poison everything around it.

I love Mary Clara's image of there being holes in the bottom of the bucket and everything good and positive draining out of them.
Why is it never the case that all bad things drain out instead?

But it wasn't my fault that I couldn't help my mother, and it isn't yours that you couldn't help yours.

When I held my oldest child for the first time I had this overwhelming sense of how ridiculous it is that this small creature should ever be held responsible for how my life turns out and for who I might become.

You have done more than many and the task was impossible.

Fred Preuss said...

This is why euthanasia should be legalized.
Nobody should have to go through this. I wouldn't put Stalin or Pol Pot through this.

Anonymous said...

I echo Tim Goodbody's comments and especially Mary Clara's

'But what you did WAS enough, in that it was your best. Be kind to yourself now, and rest and heal."

It's time think of yourself now Adrian.


Pluralist (Adrian Worsfold) said...

Treating Fred's comment seriously, the question is when would you actually implement euthanasia, because if there was a note about this (and my mother hoped I could do something so she did not share her sister's physical decline) what would be the point of execution? The answer is at no time. All the time my mother has mental health of some narrowed sort, all the time she has some quality of life, even if it is to bite people and pull hair and be very nasty - in the end we, as community and individuals, do have to care, and do not say sorry time's up love. Unfortunately it comes down to administering drugs, and a half life possibly or a different even slightly better less angry life. But these people cling to life, and to that they are completely entitled.

Fred Preuss said...

I can respect your decision and I pity your situation.
My only wish, for myself, is that I am able to express my wishes, for myself, in a way that those around me can use and not get sent to prison. I hope to be able to make this available to anyone else who CHOOSES this for the ends of their own lives.

Lynn said...


My heart goes out to you for the usual reason: I was once a caregiver. Although the details of my story are quite different, the emotional distress was quite the same. You are not alone.

Yes, you must start to heal and it will be a long process. Don't do you self the unkindness of thinking you will "get over it" in short order now that the immediate crises of daily care have ended in your household. Even death is only the beginning of your release. I do not say that to discourage you; rather, I encourage you to know your feelings are normal and you must go through them properly. You will find peace if that is what you wish - just go slowly.

Anonymous said...

Fortunately, my own experience of this kind of position has been much less stressful,but still upsetting as one reflects on whether one has done the 'right thing' as a son/daughter for one from whom one has received much.On the matter of the rewritten will,I wonder if it was legal - a person making a will MUST have mental capacity ; its absence is one of the few ways in which the validity of a will may be challenged- as it was written with a neighbour's assistance it may be void on this account alone ( unless the neighbour was a solicitor!)- these 'informal'wills are often not witnessed correctly and some of the DIY wills from WHS,etc are not completely legally correct in their wording.their wording.

Pluralist (Adrian Worsfold) said...

There was some thought given to this, though the neighbour's assistance was in travel not in the writing (she sat outside).

I had become sole driver by this time; for a long time my mother had retained a driving licence but by this time she had given it up. If you can't sequence to cook there becomes never any possibility of an emergency drive of the car - and the car had become mine by necessity (though she insisted it was hers).

So there was (as far as I know) no witness to the first rewriting over the actual document (I have asked the neighbour and its a no from her).

The will was another element of 'waiting' though challenge is set against cost.

Mental decline is something that goes in degrees and a measure would be in these situations whether anyone ought to or could enact power of attorney, and whether others cast undue influence for their own benefit - and at that point the evidence became that they did not. One at least knew subsequently.

Anonymous said...


i sucked at this, myself. if there has been a lesson of any kind, it has made me realize that murderers, burglers, robbers, pimps, whores... may have treated their mentally ill, going through the TIAs, dementia suffering family members.. better than I did. Quite humbling, and overwhemling... throw yourself at the mercy, and let that one ride for a while.