Friday, July 26, 2013

My Mother’s Memory: The Effects of Delaying an Alzheimers Diagnosis


Could the human capacity to remember be imagined as a shelf on which rest the things we know of the world? And if the shelf disintegrates, our memories have nowhere to rest?

That’s a poor analogy in some ways, because the shelf itself holds the kind of basic memories that tell us who we are and where we belong in the world. It seems to me that some of the less important understandings – the items on the shelf – dissolve or disappear before the shelf itself completely gives way.

My mother has cognitive impairment. Her short-term memory is terrible and continues to get worse. She is fast losing her understanding of how the more complex aspects of the world work. She probably has the beginnings of Alzheimers or some other form of dementia, but until she gets tested, nothing can be done. Yet she doesn’t care whether or not she gets tested, and my father is in a state of active denial. The more you try and bring him around to the need for testing, the more defensive he gets.

My mother knows who she is, that she has daughters and grandchildren. She drives to Chadstone alone and walks up and down the main walkways; she doesn’t buy much, but she says the walking is her form of exercise. She rings me and leaves messages saying ‘This is your mother here’. She complains about finding it hard to buy clothes because she’s so short; she recently found a new skirt that she likes, and showed it off to me with great delight. She is as obsessive as she ever was about keeping the house tidy.

But her short-term memory is terrible. She’ll remember some of what she did the night before, but specific details get wiped. Visiting my sister one night she commented on the large, efficient clothes airer that sat in front of the fire. A week or two later my sister found an identical one in a hardware store. She rang my mother to ask if she should buy it for her. My mother had no recall of admiring my sister’s clothes airer, and no interest in the one my sister had found. ‘We don’t really need clothes airers’, she said.

More serious than that, she’s losing her grasp on the world’s complexities. She could probably no longer explain distinctions such as the difference between state and federal, a premier and a prime minister. And while she is still aware of the things that affect her life – her grandchildren, her friends and so on – she finds it hard to follow the thread of conversations that go beyond the basic.

Her memory continues to get worse. A few months ago, in her own kitchen, she began cooking a birthday dinner for one of her nephews. Soon afterwards, she forgot that she’d already started the cooking process.

Memory also includes what goes where. Months before that, another of my sisters dropped over at dinner time one night. Mum was in the kitchen, having just put the electric kettle on the lit stove. When my sister’s horrified eye moved towards the stove and saw what had happened, Mum saw too, and understood right away what she’d done. But it was the fact of her doing it that was the problem.

Yet to my knowledge she’s never had one of those catastrophic existential moments that can confront sufferers with the reality of their illness – the ones where they suddenly become so disorientated they don’t know where they are or what they’re doing.

Such a moment is dramatised in the biopic Iris, about the life of the philosopher and novelist Iris Murdoch, an Alzheimers sufferer. Murdoch is in the middle of a pre-recorded television interview when her magnificent brain fails her. She’s talking about education when she halts – what was she going to say? What’s going on? What is the meaning of the camera, the interviewer, and who is that person on the array of television screens? On the way home she gets hopelessly disorientated.

At the possibility of this happening to my mother, it is tempting to join my father in his denial. There are a couple of factors that encourage such a stance.

Factors that can cause poor memory

My mother is on a few different drugs for her ailments, which include high blood pressure and osteoporosis. Many drugs can cause forgetfulness. One researcher even developed a questionnaire to determine whether a drug regime was causing toxicity. This is something I would like a specialist to look at, but I realise it can’t, at this point, be the whole story.

The other factor is diet, but as I am the only one in the world who perceives this, there’s a fair chance that it is delusional thinking on my part. For Mothers Day this year my sisters pooled their money to buy my mother a coffee maker. I was horrified.

Ever since I was diagnosed with the little-known and incurable condition of low blood sugar, or functional hypoglycaemia, I’ve thought that this condition was implicated in my mother’s long-term fatigue, forgetfulness and low-level depression; caffeine and concentrated sugar, both dear to her heart, are the worst things for this condition. Her memory’s been poor for years, and she’s always useless in the afternoons, slightly better after her obligatory nap. I can’t count the number of times, even before her memory problems became serious, I’ve suggested she give up sugar and caffeine. Each time in her airy way she acts as if it’s the first time she’s heard of it. This is understandable now, but she’s always been completely uninterested when I broached the subject in investigating diet for her fatigue – she’s a long-time foodie.

However, I am fooling myself that Alzheimers or some form of dementia isn’t the culprit. Research shows that mild cognitive impairment can be a precursor of Alzheimers by many years. And Alzheimers is ‘by far the most common cause of cognitive impairment’.

An incomplete diagnosis

About two-and-a-half years ago my mother did get tested. The specialist told her she was on the borderline, could take anti-Alzheimers drugs if she wanted to, and should come back again for another test in two years time. I didn’t find out about this until almost a year later – my elder sister deliberately lied about the results to shield me. However, it wasn’t, in my understanding, a diagnosis of Alzheimers but of cognitive impairment. 

Even once mild cognitive impairment has set in, much can be done to halt and even reverse it and perhaps actually prevent it from sliding into Alzheimers. I curse the specialist and all my mother’s doctors for their slackness. Did the specialist tell her to do brain exercises? Watch her diet? Walk regularly? That she could arrest or at least slow some of the decline if she wanted to? Not by the sound of it, apart from offering the drug option. She was, it seems, just another bumbling 76-year-old woman. Next, please.

When my sister told me the truth about these tests – about a year ago now I suppose, I am vague myself – I wandered around in a daze of low dread, of loss and helplessness. It was as if I was feeling my mother’s loss of mental power in my own head. This laid bare, mercilessly, how bound up my identity is with my mother’s. It was as if my own brain, my own self, were under threat. In a way it was. I had never escaped the over-identification with the mother that is the trap of poorly mothered women.

Yet I don’t want this to sound as if I have come to terms with my mother’s illness. The move towards acceptance of Alzheimers in a parent seems to come in increments. I cannot properly grieve for my mother’s Alzheimers because there has been no proper diagnosis.

Of course, that dark dread, which returns periodically, is not just about over-identifying with my mother’s brain. There is a much more prosaic way in which it translates to my own experience. If she has Alzheimers this means it runs in the family, so I have a greater chance of getting it.

And this is ironic too, because mental debilitation of different sorts was an early symptom of what I now see as my OCD. I spent my twenties and to a much lesser extent early thirties dreading the onset of hallucinatory schizophrenia, and the future risk of Alzheimers. I had no idea that these lonely worries were part of a completely different disorder that was not in my future but very much in my present. I have always been a vague person, and worry about my vagueness came second only to concern about my social anxiety symptoms.

My identification problems with my mother make it difficult for me to witness with any objectivity her poor management of her debilitation. At the same time her shortcomings seem too conveniently related to her illness (a selfish stance I know, reflecting my own damage).

There have been so many ways she could have improved her memory, and even at this stage she could do more to preserve what she has. Frustratingly yet predictably, everything about my mother’s character that complicated my own development is writ large in her failure to take control of her cognitive impairment to the extent possible. This failure is all too consistent with her careless attitude to not only my illness as teenager, but her own physical health.

My mother’s identity has always been weak. Her lack of a strong sense of self, her utter emotional slipperiness, her reliance on others for affirmation – all these have been bound up with a chronic lack of attentiveness, resulting in an inability to shield her children from nutty relatives, poor teachers, the ravages of neurosis. Now these same weaknesses impact on her own ability to hold off some of the effects of her illness. And the illness accentuates those weaknesses to strengthen its hold on her, encouraging her not to care.

More than that, the cognitive impairment itself seems to be all of a piece with these weaknesses, a natural outcome of a lack of attentiveness to self and others. It seems as if my mother is making the ultimate escape. How dare she leave when she has never been fully present? And what does it say about me that I am incapable of viewing her dilemma except through the lens of my own needs?

The upside

I don’t want to be completely negative. My mother’s excessive acceptance has its good points. She is childlike and easygoing. She has lost some of the more bitter aspects of her personality. If she does descend to full-blown Alzheimers, I can’t imagine her being difficult to manage. If anything, she will be overly compliant.

My father is in good health and at seventy-eight has more energy and sprightliness than most men his age (‘sprightly’ seems the wrong word for him – he doesn’t really seem particularly elderly to me) and is a very giving person. He has taken over much of the domestic load, although his semi-incompetence in this area is becoming a problem – he burned my mother’s nylon undies recently when he put them in the dryer.

For a mother who was always so absent, so lacking in maternal instinct, my mother gave a good impression of presence. I always believed she was looking out for me even when there was evidence to the contrary. Now I know she never will be, never can be. I must look out for myself, be my own mother. It’s a heavy, difficult task. I cannot give to her at this point the care that a fully functioning daughter could. But I will give what I can when the time comes.


Thursday, July 18, 2013

The Grow Program and Me


In my last entry I looked at Grow, a peer support program for mental health and life skills that I’m part of. This week I’m giving a personal perspective of my involvement with Grow.

My history with Grow is instructive for anyone navigating self-help in the mental health area for the first time. I went to my first meeting way back in around 1990, and scurried away because it didn’t seem ‘suitable’ – in fact, the people seemed ‘sicker’ than me. I was sharing a house with someone whose partner was a psychologist; she told him I’d been to Grow, and he confirmed my impression, relaying through her that Grow was for the really ‘sick’ people, and definitely not right for me. (At the time I’d never been diagnosed, so who knew how ‘sick’ or otherwise I was?)

So I left it at that until 17 years later, in a particularly difficult period of my forties. I had moved out of the inner city and left my previous 12-step program, and my freelance work was drying up. I was unmoored and uncertain, and lacking in any real hope for the future.

In the middle of this Dante-esque period, in around 2007, I went to a Grow meeting in St Kilda, and came away with the same impression: I just wasn’t ‘sick’ enough for Grow. In fact, I thought, I didn’t fit in anywhere; no-one understood how hard it was for me to sit through a meeting, but I considered the problems of most of those at the St Kilda Grow group, some of whom seemed to be on very strong medication, to be remote from mine. (I was wrong in retrospect: it was my fear of medication that was the barrier, not whether I had anything in common with the other members.)

Finally, late last year, I hit rock bottom. This was when my OCD got so bad that I felt I had no choice but to go back on antidepressants. I thought I’d try Grow again, and that the meetings might be manageable, given I was on drugs. Grow was my last resort.

I remember being led into a cramped room with yellowish light, where a group of about 10 people sat in a close circle. There was one vacant chair in the circle, and everyone pointed me to it. In my desperate state, the chair seemed symbolic – there was a place for me here.

The cohort was completely different from the St Kilda one; the majority were reasonably prosperous retired people aged sixty and over. There were a few younger people, mainly dealing with life after addiction or learning difficulties. The problems people aired seemed work-a-day, those I was familiar with from other groups I’d attended. Predictably I constructed myself as the sickest puppy in the meeting, but I also felt I a sense of acceptance and lack of judgement that, while it couldn’t douse my fear, did subdue it a bit.

Grow was medicine for me when I first arrived, but for a while I was in danger of sliding away from it because I didn’t take my need for medication seriously enough. When things got bad again, Grow was a bridge to some version of normality. When I was ready to take my medication regularly, I got support from the meeting to get back on my bike. Not that I really believed that I could feel better; but I pretended that I believed, and kept going to meetings, and now I do feel better. I’m still up and down, but the acute suffering is gone.

Group dynamics at Grow meetings
One aspect of Grow meetings does pose a problem for me. For about two years a decade or so ago, I attended an intensive, twice-a-week therapy group led by a psychiatrist; as well as providing objective feedback to the problems aired by participants, the main point of the group was to voice and explore the emotional responses that other people evoked, both positive and negative.

The dynamics of the Grow meetings have brought out all my personality traits and then some, but there’s no real avenue in Grow for processing the feelings that come up towards others, and as a response to interacting with the group. Occasionally people whom I’m very fond of will nevertheless irritate the hell out of me – but there is no real forum to explore where those feelings come from and what they might reveal. On the other hand, this gives me the opportunity to simply practise patience. Seeing a therapist one-on-one would help with this.

What I do love about Grow is that it gets me out of my own head. During the sharing part of the meeting I can listen to other people’s problems and along with other members offer objective advice. It’s such a relief to get the attention away from myself for a change, and to realise that I can bring an objectivity that is often completely lacking when I try to deal with my own issues; and the other members do the same for me.

I would recommend Grow for anyone. It really does provide a strong level of support once the initial settling-in period is overcome. I feel more optimistic about the future now, but not in a fake way; I know I will always have difficulties, and I still get very resentful about the circumstances of my life.

And I still find meetings very difficult; I’m convinced that soon, perhaps next time, they’ll get too hard and I’ll never come back. Yet as long as I follow my gut, I’m mostly okay. It’s hard but it does seem as if there is a group bond that helps me, even if it can’t save me completely. One of the older members, who is a plain speaker and who knows how difficult I find it, once said to me something like ‘keep coming to Grow because we love you’. Oh well, if you put it like that ...


Friday, July 12, 2013

A Growing Concern: Peer Support and the GROW Program


These days, self-help groups for mental illness come in a whole range of shapes and sizes – or what the therapists like to call ‘models’.

There are men’s groups, long-term psychotherapy groups, personal development groups run by counsellors, self-help groups for specific problems, short-term courses for disorder management – and then there is GROW.

GROW is a 12-step program with a difference. Instead of being based on a specific addiction, it’s for anyone with a mental illness, recovering from addiction or simply finding life difficult to cope with. 

The aim of GROW is to bring people to a state of greater maturity – in other words to help them grow up. You’re not necessarily cured of life’s travails or the mental illness that plagues you, but not only do you learn how to manage your life better, you get support from others with the same goal.

Meetings are held weekly and include problem solving, study of GROW literature, readings and stories of recovery. Leadership of meetings is rotated among members. Some members are seeing therapists or on medication, while others aren't.

GROW actually began in Australia. It was started in 1957 by a Roman Catholic priest who had a nervous breakdown and discovered there was nothing to support him in his recovery. He started going to Alcoholics Anonymous, where he found other people with mental illness who were there because it was the only thing available. They started meeting weekly to share their recovery, and after the meetings Father Keogh would write up what came out of the group.

The priestly origins of GROW can still be found in some of the literature. Yet GROW is actually more enlightened than other 12-step programs in that it gives people the choice of substituting ‘Truth’ for ‘God’; atheists are welcome.

GROW now has branches in the USA (Illinois, New Jersey and Alaska), New Zealand and Ireland. A similar organisation, Emotions Anonymous, was founded in the USA and has chapters in Australia, the UK, Canada and elsewhere. Another option is Recovery International, on which some of the GROW program is based.

A quirky program that works

While GROW is based on 12-step programs such as AA, it differs from them in significant ways. These differences can be both a strength and a weakness.

Unlike most 12-step programs there’s a free exchange in the meetings themselves, with people offering each other advice and referring to useful bits of the program material. This means it's easier for meetings to get out of control. Some of the people in my group find it hard to stick to the structure and need reining in, and Control Freak here suffers from apoplexy as she bites her lip and refrains from making bitchy comments about the relevance of members' contributions.

Most 12-step meetings are up to one-and-a-half hours long. GROW meetings run for two hours, which is quite a long time, and this may put some people off, at least initially.

The older program material is very dated, and some of it is downright odd, but it's currently being updated. I worry sometimes whether the material is based on the latest evidence base for mental health treatment.

But if you're interested, you have to look beyond these surface elements to what it is about GROW that works - for work it does. A longitudinal study conducted by the School of Psychology at Curtin University found that it improved members' wellbeing, strengthened their identity, and resulted in fewer hospitalisations and a reduction in medication.

Why so successful? One reason is that GROW asks members to attend the same meeting every week. You can’t just float around different meetings, which is possible with conventional 12-step programs. What this does is build strong bonds between people, the ‘peer support’ that is now considered so important to successful management of mental illness.

There is also a huge emphasis on acceptance, non-judgementalism, and, that over-used word 'love'. Every week you say simple things like ‘In GROW we love one another’. These affirming words and the spirit that goes with them are a boost to the fragile self-esteem that mental illness both causes, and is fed by.

Problems are listened to carefully, and the advice of other members is down-to-earth and helpful.

The program literature includes many commonsense sayings and readings. After a while, you learn some of the basic things to read over and think about when the going gets really tough.

If you're having difficulty with a life event or mental illness, or just generally finding life hard going, I heartily recommend giving it a try. If there's no GROW program in your area, other forms of peer support may be available - and when it comes to offering advice and support for mental illness or struggles with life, there's no wiser resource than other sufferers.

Next time: GROW and me

Sunday, July 7, 2013

Fractious Fifty Year Old in a Flurry of Flight


I didn’t get around to writing a birthday post this year. Partly because I have written one every year, trying everyone’s patience in the process, partly because the birthday itself was manageable. If you are having trouble with birthday depression, blog about it!

So the birthday itself was fine, apart from spending literally – I kid you not – up to three hours online finding the right restaurant: a recently opened Middle Eastern place in South Caulfield, nearish to home. It was worth the time spent – the place made up for its pretty basic ambience by being right in terms of food, location and price. Everyone was happy and I got to eat enough hommous and falafel to last me to my sixtieth birthday.

This was the restaurant. I would go back there in a jiffy.


Did I mention it was my fiftieth? Turning fifty is a bit special, what I mean is other people think it is. Sisters who don’t normally buy you anything leave birthday cards with money in them. Aunties you rarely see send cards or express a desire to see you. Wishes are expressed to see you blowing out birthday candles surrounded by the nephews and nieces.

I wonder if fifty is in some ways the biggest milestone of all. Half a bl—dy century – how amazing is that? Just to have survived that long, to be honest, feels like an achievement. Am I biased? Have I just enjoyed the attention too much? Part of me wants to rest on my laurels, to sit back and from my venerable age hand down my matchless wisdom to the younger ones.

But a post-fifty scramble is upon me.

Fifty is the time when you realise that the ‘now’ that you constantly revile, fight with, curse, try to come to terms with, forgive and generally are up against will change, is itself impermanent. Behind the scenes, the crew are arranging for a change of props, while the writer is preparing new calamities for the melodramatic heroine. The invisible/visible event of old age is looming, and rather than having a mid-life crisis (isn’t everyone in the West in an ongoing mid-life crisis after the age of twenty-eight?) I’m experiencing more of a mid-life scramble. There is so much to do and I am staring into the abyss of my mortality. Hurry! Hurry! life urges me. Like the white rabbit in Alice in Wonderland, there’s no time to waste.

The New York poet Frank O’Hara adopted Lewis’s white rabbit  much earlier than I. In a journal he kept at the tender age of 22, he wrote: ‘one must hurry, one must avoid the impediments, snares, detours ... I’ve a long long way to go, and I’m late already.’ I understand how he felt.

Is this why I've published four ebooks on Amazon and am in the middle of a fifth? Like a woman who keeps having babies one after another, then has to stop and settle down and look after the ones she has, writing another book gives me an excuse for not marketing the completed ones. So the one I’m writing now, I promise myself, will be the last for a long while. And I promise not to unduly harangue my long-suffering blog readers too much* about these books; I have, or am preparing or resurrecting, separate websites or blogs for three of them, possibly four.

All this work is self-created, is really a hobby, and by definition shouldn’t be stressful. My paid work with clients should come first. So when I get too panicky about this I tell myself that it’s something I just started doing because I had too much time on my hands, that it is a skill-development thing, and that any success or otherwise is not the main issue.

Paid work must come first. I want more of it, and I must get myself out there to get it. More panic.

This scramble is partly because the drugs are kicking in and I’m able to do more. But my energies feel all over the place, I’m having trouble prioritising. In fact, I even wrote a new poem while sitting in front of the tele the other day, and have just sent it and a few others off to a poetry journal. Submitting work to a literary journal is so much less effort than it used to be in the days before email. If I’m knocked back, which is likely, I’ll be disappointed but not devastated.

Equally frustrating is of course that my hang-ups are still holding me back – that in fact there is still an angry fifteen-year-old inside waiting to get out, not to mention an attention-hungry five-year-old, and both will do anything in order to get attention. And I’m still very isolated, apart from the self-help group I attend and seeing the odd friend. The group is still a huge challenge for me – I will blog about it soon.

I bet anyone reading this blog from a mental health perspective is quietly shaking their heads and mouthing the word ‘manic’. (I’m not bipolar as far I know, but my SSRI does make me a bit high during the day, with a downer at night.) But when you come up for air after a long period you want to snatch at life while the mood lasts. You don’t know how long it will be before you get pulled down again. Oh those big gulps of air! I’ll breathe them in while I can.

* I said ‘too much’ – there’ll be a bit of skiting but I’ll keep it under control.