[photo : http://www.bbc.co.uk/worldservice/news/2010/02/100203_dementia.shtml]
“There is no cure for Alzheimer’s disease : Thirty-five million people around the world suffer from dementia, a progressive, degenerative brain syndrome which affects memory, behaviour and emotion. The most common cause of dementia is Alzheimer’s disease” (BBC World Service News).
(reference: “Mother-in-law dearest” by Kate Thompson, in the ‘First Person’ section of ‘The Sunday Telegraph’ magazine, 19 September 2010)
<< Kate Thompson movingly accounts how dementia reduced the woman she once adored into ‘an object of dread and enemy to outwit’.
I never understood mother-in-law jokes. I had such an excellent rapport with my husband’s mother that some people found it unfathomable.
Hazel was 40 years my senior, but she was my friend and ally. As a young woman she had been a real beauty: studio portraits of her in her youth show a flawless, heart-shaped face, delicate bone structure, eyes that could bewitch a man, and a tumble of Rita Hayworth curls. Her mouth was a perfect cupid’s bow, her figure that of a Dresden porcelain shepherdess. Newspaper cuttings from the 1940s predicted that she could be the next Maureen O’Sullivan. But – despite offers of starring roles – Hazel chose to marry and remain in Ireland. >>
<< When I muscled in on her territory in the 1980s by marrying her son, she was supportive, generous and – most important of all – uncritical. Even when I insisted on cycling everywhere with her new-born grandchild strapped to my stomach – which was most empathically not the way things had been done when she was a young mother – Hazel kept her counsel.
Fast-forward a decade and a half. My baby is showing all the signs of growing into a beautiful young woman; my mother-in-law is showing all the signs of encroaching dementia. She can no longer live alone in the pretty pink-washed bungalow that has been her home at the foot of the Wicklow Mountains for the past 20 years; she must have someone with her 24-seven, to make sure that she doesn’t set the house on fire or go wandering off on some urgent odyssey, leaving the doors unlocked and the garden gate open. We are lucky. The carer we engage is a woman after Hazel’s own heart – a free spirit with a mischievous sense of humour, a love of culture and an infectious laugh.
But carers have private lives, and it was proving difficult to find a replacement when she needed time off. On one such occasion, when we found ourselves with a three-week care deficit, I stepped in. Three weeks in the foothills of the Wicklow Mountains at spring time, miles away from Dublin city centre, where we live, would be good for me, I thought.
I couldn’t have been more wrong. While I lived with my mother-in-law I was at her beck and call 24 hours a day. The first inkling that life as a carer might not be as rose-tinted as the cottage in which I was living came when I brought her breakfast in bed on the first morning. Not only did she have no idea who I was, she treated me as if I were a servant. When the cereal I served up was not to her satisfaction, she threw the spoon at me. When I suggested she might like to wash, she took it as a personal affront. Any time I spoke on the telephone she became jealous, attempting to wrest the receiver from me. She never said please; she never said thank you. It was like living with a stranger – an autocratic, unpleasant one at that.
I became fearful – locking my bedroom door at night because she wandered and I found it unsettling. I would lie there, listening to her moving around, on tenterhooks that she might fall, yet powerless to make her stay in bed. She was mistress in her own home, after all, and would iterate over and over that she could do as she damn well pleased.
I discovered that the easiest way to survive was to adopt the course of least resistance and embrace my slave-like status. However, when she had an accident one night and I was obliged to change not only her bed linen, but her mattress, there was a fierce battle. It took every determined ounce of my persuasive powers to get her into the bath that she insisted she did not need.
During my three weeks as her carer I lost weight, my self-esteem plummeted, I felt as though I were living in a madhouse – which, of course, I was. The woman for whom I had once harboured only feelings of love, admiration and respect became an enemy to outwit and an object of dread. Sometimes I found myself hating her.
The French call their mothers-in-law belles meres – ‘beautiful mothers’. Now that Hazel is dead, I mourn the beautiful woman who had for many years been my friend and adviser. It is my charming, witty, generous belle mere whom I hope I shall continue to remember always with affection – not the woman claimed by the spectre of dementia, the woman who would have hated what she had become.>>
:: More on dementia ::
“Love in the Time of Old Age” by Dr Sarah Eagger of the Royal College of Psychiatrists in London, UK.
“Dementia in Our Kids – the Uninvited Thief” by Michael G Stults in ‘Niemann-Pick Children’s Fund, Inc’
“Work more to avoid dementia” by Shue in www.pharmas.co.uk
My words and thoughts
How traumatising. I suppose many of us don’t really know what it takes to look after someone: a body, a mind, a soul – a life. It is necessary to take stock occasionally, if not regularly, to check-in with yourself and those around you on each other states of health: mental, physical, emotional and spiritual well-being.
It is a very challenging process to really and truly determine what health is. Some say, “Don’t have such high expectations”, but I say it’s not about high expectations, it’s just want needs to be achieved. It’s always been essential for me to take time out to readjust and regulate myself once more, away from the haste and activity of my everyday life.
There are a lot of demands, but they’re not (necessarily) from others, more situational demands. That is, the situation calls for high-performance and achievement of goals and objectives, which I must recognise for myself – others will rely on the results later on, but I know I must not delay despite not really having anyone to check-up on what I do. And thus I do. I must navigate me in terms of life goals and career paths – that results in long-term and accumulative stress and pressure stemming from independence, reliance on self and a multitude of decision-making that is required at every waking moment, not just for myself but also for others who also seek my counsel, advice and opinion.
For me, it’s the width, range and depth of skill that is required in my variety of work that poses a longer-term problem spawning yet more longer-term issues. Not everyone can recognise my issues and thus my solutions are difficult to find – I must seek them for myself. It wears down a person, and when the brain becomes exhausted, sleep is not the answer.
To many people, sleep is out of reach as it is; to them successful deep sleep, on a comfortable scientifically-made bed, every night is still an aspiration and it would seem logical, to them, that sleep is within the range of viable solutions for mental exhaustion.
My road to mental exhaustion was paved with a regular patchwork of Elastoplast’s of sleeping nights, every night. A sleeping period of 8-10 hours every night becomes necessary, plus a 12-hour stint on one day during the weekend. That was the rather ‘fortunate’ periods, then there is the descent into ‘nothing helps’ and the wrong type of sleep begins. The sleep that brings on poor dreams, or even nightmares. The sleep that jerks you awake suddenly and with heart-stopping consequences – “What did I forget to do or finish?”
Without my sporadic ‘readjustment’ periods and without acknowledgement of ‘transitioning’ between prolonged periods of intense, demanding and wide-ranging working life and personal life, I would go mad and have gone mad before. I’m constantly seeking and applying methods of maintaining, building and increasing health to enable my work.
Not literally mad, but more mental meltdown and physical exhaustion and, thus, emotional exhaustion. I understand this is not the same as dementia, but there are a few similarities, enough to be able to relate to the dementia sufferer.
I did seek salvation through prayer – there was just no other way. “How can it be?” some may ask. “How could life get so difficult and busy?” It just can. It’s all the things that need to be achieved.
It is not self-imposed personal ambition to create a better life for me, it really is to out-pace the maddening crowd to get ahead and to show the better ways. It does result in a type of madness and deprivation of self, but it is necessary.
I am that person who often believes that madness, insanity lurks just around the next corner. Not the corner after, or in the next alley, or in the next house, but literally around the next corner that I’m going to be approaching. I don’t like to be taken by surprise, so I have reality checks – not anal, not obsessive-compulsive and not pedantic, it is just me reinforcing my sanity.
But as they say, sometimes to maintain our sanity we need to go a little insane – let loose a little. Indeed, I agree. Uptight-ness really isn’t something I strive for. But I know that over time, the core of me, literally the core going from the pit of my stomach to the base of my neck (through my central torso) can get wound-up like a bathing towel that is being wrung and twisted hard, to rid it of water. I feel it: the twist.
The accumulated stress runs so deep that it’s impossible to undo short- to medium-term. I literally need an overhaul of being and access to certain well-being goods and services within a pedestrian-convenient geographical radius e.g. a variety of (physical) therapists, to ease me for wind-down and finally to revitalise me. Sure, when I get to enjoy the time off it’s pleasant and even, possibly, ‘luxurious’ but until that day it’s a mental nightmare.
It is very difficult to understand until experienced. And anyway, it is a personal learning experience, no matter who you have around you (family is a vital resource for me – they don’t really have to do much, just be around, except for my mother for whom I have much higher expectations of care! But I have been independent for a long time and also seek time and effort to tend to her and our home), you still have to be responsible for recovering yourself.
Since the dawn of time that is the truth: you are responsible for your own recovery, but everyone needs assistance and help.
Apparently, the ‘cure’ for dementia is to ‘work more’ i.e. the “use it or lose it” method. For mental exhaustion it is “a change is as good as a rest”. Use another part of the brain to rest – don’t actually go to work, as in a working position with responsibilities for others – but you must have hobbies or personal interests in which to delve and indulge.
Take it slower, lose the pace, lose the high-energy octane and lose the pressurised situations. The ultimate problem here is that these people are geared up for certain types of work (higher responsibilities and higher- and wider-ranging skills) and so in preparing and winding themselves up to a higher-level of being to achieve, how do they then wind down to lower-levels of being for a much-needed and much-deserved rest period?
It’s tough, actually. Because when they’re winding down it appears as if they could work, albeit at a level that is other people’s excellence but their standard, so they must seek outlets, methods and ways to release restlessness to enable respite and relaxation. A way to occupy themselves while transitioning into a ‘restful state’.
Winding down is a pain. I choose to use this time for a bit of a personal over-haul – a period to seek professional therapies for recuperation of self. But that, as always, is only part of the recuperating picture. The rest is just difficult, but I don’t feel fortunate enough to let loose and whinge too much and thus I won’t.