When my mother died in July last year, I was not able to attend her funeral, through my own ill-health. I wrote what I suppose would be called a eulogy which was read at the memorial service by my cousin Darryl Bennet, and if you’re interested, you can read it here. It may help to fill in some of the details left out of this part of the story.
Until very close to the end of her life, my mother was mentally very active. Physically, she had problems, a serious hearing deficit being one of them, but by using a good pair of headphones, she avidly watched the news and news commentary programmes, gardening and arts on the national broadcasting service, and read books voraciously.
In the early years of her marriage she looked after my father’s mother with great devotion to her duty until my grandmother’s death. This was not always easy, and it left her with one enduring determination that would stay with her the remainder of her life – she would remain as independent as she could until that became impossible. In fact, if she had had the choice, I suspect she would have quietly ‘slipped out of camp’ (to use Steve’s term) without disturbing any of her children.
But we don’t always have this choice. Each of my three sisters played an active role in ‘minding’ Mum’s independence, particularly Jan towards the end, at the most difficult stage. Lyn spent many years looking after her when she lived in Gladstone and when Mum was more active physically, and Kay had a longish stint caring for her when she took ill in Melbourne. It would be remiss of me not to add here that each of their husbands also looked after her as if she were their own mother. For most of that time, she lived in the way she liked best, in her own home, doing things the way she wanted, and imposing as little as possible on them all.
As you can see, I played almost no role in this, not that we wouldn’t have been happy to if she were living nearby or wanted to live here. It just didn’t work out that way, given our location.
I’m sorry to have to include things that may not seem relevant to the title, but I’m getting there. Bear with me.
Several times in her life, when she was undergoing operations involving physical pain, she given particular drugs to assist in pain relief and recovery. I’m not sure what these were exactly but they were standard drugs used for this purpose – pethedine based, I think. Often they induce hallucinations until their effects wear off, especially in older people. I remember each of my sisters at one time or another describing how my mother’s personality could change during periods of recovery where such drugs were used, quite startlingly at times.
As I wasn’t a witness to most of these I won’t try to make them part of this story. If it were to be told for some reason, Jan and Lyn are the ones who could do it, but you probably can see where this is heading. I am using these altered states of consciousness experienced by my mother to get at the broader question of what we perceive as reality and how deceptive that can be.
It’s safer for me to talk only about the episodes I witnessed personally. That way I won’t go off on quite so many tangents. I hope....
The first was in April 2009. Jan and Ken had been watching over my mother’s fairly independent existence at her unit not far from Jan’s. My mother was becoming increasingly forgetful, and if Jan didn’t keep a sharp eye on her, Mum would forget to eat and drink, so engrossed would she become in painting or reading or some other activity; then would realise she was famished and eat at odd times. As a complication, she rarely drank enough water, which dehydrated her system without her being aware of it.
This eventually made an emergency ambulance trip to hospital a necessity, and in convalescing she experienced the psychological effects of the drugs administered. They were quite severe and from Jan’s descriptions, she was inhabiting an alternate world until she got them well and truly out of her system.
On this particular occasion I drove down to visit her in hospital. By that time, although still strongly affected by the hallucinogenic qualities of the drugs, she was a bit more in touch with our world than she had been.
It had been a very disturbing time for her. Over and over again she went through the story, clearly inspired by her ambulance trip to the hospital and her time receiving the first bout of treatment. Jan had heard it all too often by the time I got there, but it was new to me to hear it from Mum’s lips for the first time. Very agitated, she described how she had been captured by these white coated people – kidnapped and taken from her home to this new place they kept calling her room but which wasn’t her home at all. She was making plans to escape or get a message of her whereabouts to Jan. She had even drawn maps, not that they would have helped much in a rescue mission I have to say. She must have managed to get up from her bed at times and walk some of the corridors before she was recaptured. She described with great animation strange rooms she had seen filled with white mounds of sheets, and looking down out of broad windows with Dali-esque perspectives, vertical walls that would slowly become horizontal, forms and shapes sliding and interlocking and disappearing. Kaleidoscopic patterns and colours that her fingers twitched to paint. And these shadowy figures, the kidnappers, constantly recapturing her and returning her to her bed - and this WASN’T her room.
In short, she was experienced a full-on psychedelic trip that would have done the 1970s mind-expanding gurus Alan Watts or Robert Zaehner proud, when they were conducting their experiments with LSD and mescalin, except that hers wasn’t a fun trip for the most part. She was trying to wrest back her freedom – from the place and the people she had been brought to, and probably mentally from the effects of the drugs as well.
Those were her constantly retold experiences of how she came to be where she was, right there on the 6th floor of the hospital. We came there together, Lyn as well as Jan and I when I first came to see her at that time, but her semi-lucid periods were increasing. Jan had heard it all before as it was running constantly through Mum’s consciousness and she had to tell it yet again, but she was still in the grip of the hallucinogens as we sat there. As we talked, or more accurately as she talked, her reality was an interweaving of what and who she was seeing and what was being generated from her imagination.
‘Look, look at the birds flying out from the top of the curtains. There are huge black spiders coming from behind your legs, Jan. Denny, what is that horrible.... thing.... I can see on your nose?’ she looked up at me with strong disapproval, as if I had brought upon myself this deformity or whatever it was that she was seeing.
These things were as real to her as we were. To try to tell her she was imagining things was as inconceivable to her as that one of us didn’t exist and that that child of hers in front of her was just a figment of her imagination. She could SEE the spiders, couldn't she? And why couldn’t we? They were right there in front of our noses. Or in my case apparently, ON it, and not a pretty sight.
The circumstances of this phase of life your Mum had to endure is, in my experience as a daughter, and as a worker in Aged Care, the hardest part of being human. I fear it - I think we all do. We all want to depart this earth with our mind and our self-hood, intact, whole, recognisable.ReplyDelete
To live a full, lucid, and intellectually engaged life is the best part of being alive, I reckon. I can only guess at the terror, the anguish and the confusion someone in your Mum's position experiences. Not easy.
All any of us can hope for at the end is that, like your mother had, there are enough patient and compassionate people around to ease our path, and protect us from the worst of the medical system, and from the worst our illness(es) dish up for us to live through.
When an older person, with their sense of self intact, dies suddenly e.g. heart attack, I am deeply relieved for them. It is what I would want for myself....and more importantly...for my beloved family to live with when it is my end-time.
Thanks, Ros. These are wise words. It is hard for me to know whether she felt terror or anguish when she locked her consciousness away from most of the world and lived in a past before I was born. But I am sure others would be in that dreadful position – of losing control over their lives while still mentally with it enough to know what was going on about them.Delete
I agree with you fully about sudden death amongst the old who are irremediably losing their health and the terminally ill who have lost or are close to losing an acceptable quality of life. I feel some sense of joy for them at their good fortune, not to have to go through all the traumas being kept alive have in store for them - and having at last to go through it anyway.
Another view is that of the advantages for the sufferer of 'golden dementia' – maybe not so much fun for the carer, of course. As a friend wrote to me about his father:
I have been retired for six years, having started by taking leave to become my father Peter's carer. He slipped out of camp nearly two years ago, with the sort of dementia I hope to get, a 'golden dementia' in which he was having an absolutely lovely time; everything around him was utter chaos, but, hey, things were great for him.
Once I wrote in a posting something that could be interpreted as that no matter what I hoped the last thing to go was my mind. I wouldn't want that to be the understanding. If 'no-matter-what' means dipping below an acceptable quality of life with no reasonable prospect of improving it, then that was never my intention. Now where is that posting?