(Links are to extracts.)
|PART ONE: BACKGROUND|
|The medical background to Alzheimer's disease
by Professor Colin Masters
|Stages in the progression of Alzheimer's disease||15|
|PART TWO: THE STORIES|
|Margaret: A cup of tea and a chat||17|
|Anne: Nursing my mum||35|
|Joan: The key word is care||47|
|Barbara: Looking for the cues||70|
|Beth: Alzheimer's - my companion of twenty years||83|
|Bert: My wife, Joyce||98|
|Ern: Faith and love||115|
|Judith: One hundred and one ways to make a bed||125|
|John and Meg: Twenty tinnies before tea||137|
|Pauline and Cathy: A family under pressure||146|
|Les and Vera: A lot of tears under the shower||151|
|Robert: My mum, Mick||169|
|PART THREE: DRAWING THE THREADS TOGETHER|
|Issues for people facing Alzheimer's disease||190|
|The Early Signs||192|
|Looking for help, early information and advice||193|
|Planning for the future||195|
|Practical management of the condition||197|
| DIFFERENT NEEDS
OF PEOPLE WITH DEMENTIA
AND THEIR PRIMARY CARERS
|DEALING WITH THE NEGATIVES||214|
|DIGNITY AND RESPECT||216|
|Where to go for help||226|
|Susannah: Carer support groups||229|
The editors wish to acknowledge the encouragement and support of the Board of Management of the Alzheimer Society of Victoria. All royalties from the sale of this book will go to support the work of the Society.
Our thanks to all those who have contributed to this book. We have appreciated the willingness of the contributors to let us and the readers of this book into the deep intimacies of their lives.
To our respective partners, our special thanks for their patient endurance during the writing and editing of the book.
This book will add to the rich range of experience in Australia on Alzheimer's disease and the other dementias. It is our earnest hope that the book may be of some assistance through the awful journey of Alzheimer's disease.
When I Grow Too Old To Dream by Romberg/Hammerstein © J Albert & Son Pty Ltd, 9 Rangers Road, Neutral Bay, NSW, 2089. Australia. All rights reserved.Back to Contents
This book is about human goodness. It tells the stories of people who have dealt or are dealing with Alzheimer's disease or other forms of progressive dementia. They are diseases which develop subtly, and can affect the individual sufferer for up to fifteen years. They are characterized by a gradual loss of intellectual capacity which slowly strips the person of many life skills and many of the key ingredients of their own personality. The experience is often shattering for both those with the disease and their primary carers.
Given the rate of ageing of the Australian population and the high impact of the dementias, notably Alzheimer's disease, on those over seventy-five, these
diseases are likely to have a profound effect on Australian society, both socially and economically, over the next decade.
The disease involves the gradual dismantling of the physical, social and intellectual capacities of the person affected. The people with dementia are themselves often unable to understand the changes in their personality and their own diminishing functions. Such changes are often put down to change of life or late life menopause for women. For the person with the disease, there is a real struggle to maintain control of their world, to keep hold on the realities they have been able to deal with, automatically, for many years.
Carers have to adjust to living with a very different person from the one with whom they have shared a strong bond. While the physical body of the person is often in fine form, the actual personality and the intellect start to diminish.
Gradually, carers see themselves losing a life companion, perhaps the very one they would normally have relied on to get through times as tough as those they see ahead. The person with dementia begins to become physically and emotionally dependent upon the carer.
Because of this dependency, the progress of this disease often raises life-long relationship issues. Behavioral traits of childhood can emerge as the person is seen to revert to uninhibited habits of behaviour learnt long ago. Much of social conditioning, and conscience, is lost and the person relies increasingly on more primary responses. Awareness of social sanctions is reduced. Personality and marital or family tensions frequently become exacerbated.
There is often enormous anger and frustration either at a shared lifetime curtailed, or lack of financial opportunity and the frustration of a dependent relationship just at a time when a carer was hoping for a more secure and independent lifestyle.
The carer must deal with the slow death of the person they have known. Much of the tension and trauma associated with the care of people with dementia relates to changing roles.
Adult children must often take on the parent role with their own parent.
For a couple who have shared a relationship where the male has played a dominant role, the shift when the wife has to take control in the household, to run the family finances, to make key financial, legal and life choices, often requires significant change at an age when change is most difficult.
For children, decisions such as stopping a parent from driving the car or taking control of the family's finances involves a significant shift in role.
These role changes, combined with poor understanding of the disease and its management, often make care and management a difficult and complex function.
The complexities of dealing with a chronic illness are not unique to Alzheimer's disease and the progressive dementias. However, the subtlety of their development, the complexity of the emotional shifts and role changes for both the person affected and their carers is unique. In addition, there is still a degree of stigma associated with the notion of mental disease. This, in part, relates to fear and ignorance of the disease.
Nonetheless, the support, care and management of people with dementia can challenge, threaten and bring out the very best and worst in carers/
The people who have contributed to the book come from diverse backgrounds. Most of the stories in it are the stories of carers; a couple of the contributors themselves suffer from memory loss and dementia. Most of the carers are family members; professional carers reflect on their experience as well. Most care for people with dementia caused by Alzheimer's disease, but there are also stories about people with Korsakoff's psychosis and multiple infarct dementia. We hope that the diversity of contributors will serve to give breadth to the understanding of what it is like to care for a person with dementia.
Both the editors have had direct experience of the disease. Gerry's father developed Alzheimer's disease some ten years ago. For the first few years, there were only small changes: forgetfulness about the date or about events, the need for reminders about certain domestic tasks. His forgetfulness was put down to adjustments to retirement or part of the ageing process. However, it developed and was noticed by his wife because of their shared day-to-day life. Having worked in the field of care for the aged for some time Gerry recognized the symptoms.
Gerry's father died of bowel cancer two years ago. While, professionally, as a social worker, Gerry has a good background knowledge of dementia, the actual experience of supporting his mother and caring for his father is, by his account, the most emotionally devastating experience of his life to date.
Gerry now works with the Alzheimer Society of Victoria as its Executive Director. He oversees part of the support network often referred to by contributors to the book.
Terry worked for many years as a Catholic priest. Many of the older people who were part of his communion round, and those who cared for them, were dealing with dementia day by day. As a trained psychologist, he has counselled carers whose guilt, anxiety and depression added burdens to the practical loads they had taken on. A stint in that part of the Health Department which dealt with nursing homes, hostels and older people's services, where he worked with Gerry, has given him some appreciation of the breadth of human endeavour that goes into the care of people suffering from dementia.
More recently, Terry has had to cope with the impact of Alzheimer's disease close to home. His partner's mother is suffering from dementia. He has experienced the powerlessness of wanting to help, but never quite knowing how best to support. He has been frustrated by the inadequacy of the formal support networks that he thought he knew so well. He knows the strains placed
on his partner by the changing relationship at home, and the way that displaced frustration has in turn strained their relationship.
Both of us were touched and moved by the stories that are the substance of this book because we had laughed and cried at many situations similar to those described.
There are many text and reference books available about Alzheimer's and related diseases. However, there is little material that presents the experience through the eyes of affected persons and their carers. Similarly, much has been written about coping with death and grieving and much has been developed in the provision of more humane approaches to dying through palliative care programs. However, little of this is relevant to the experience of the person or the reaction of the family.
Often, reference materials take the form of the professional telling carers what to do and how to do it.
This book takes a different tack. It is written to lay out both the experience of the disease by the person affected as well as person primarily responsible for his or her care.
It begins with some basic factual information about Alzheimer's disease and some tables which help one to understand its progress. These are provided for context.
The body of the book has been developed around a biographical theme using people's own stories to try and illustrate the distinctive and often devastating nature of this disease. The stories also illustrate the diverse ways in which people cope with the disease.
It presents their lives and their reactions to the disease in their own terms. It offers readers the opportunity to understand the disease through their lives, through their hopes and through their frustrations.
Its conceptual or theoretical framework is simple. It is borrowed, in part, from a structure used by Susan Kelly and Prasuna
Reddy in their book about coping with life crises, Outrageous Fortune (Allen & Unwin, Sydney, 1989).
Contributors were asked to describe in their own words their experience in dealing with Alzheimer's disease and other progressive dementias using a set of twelve questions as a guide. They were also asked to consider issues and questions which are not raised in the set of questions provided, but which had been particularly relevant to them in coping with Alzheimer's disease...
... The editors have tried in the final chapter to draw common threads from the stories of the contributors. In some ways, this is less important and less telling than the stories themselves. However, it is offered in the hope that it will help to reinforce and pull together major insights of the people who have been courageous enough to tell their stories for others' gain.
The editors also hope that contributors themselves have gained from writing. It seems they may have. Many commented, both in their articles, and privately to the editors, that the experience of putting pen to paper had been extremely beneficial to them, that it had helped in their coping by giving them the chance to pull their thoughts together. Some even suggested that it could be a worthwhile thing for others to do.
The book concludes with some practical reference material, both for sources of information and of practical support.
It is our hope that the enterprise will ease the load of those whose genuine goodness often goes unsung, and whose needs for assurance that they are not alone is often of major significance as they manage incredibly well against the odds.Back to Contents
To help understand the stories in this book, the tables provided map out a general pattern common to the progressive dementias. They are not meant to describe each individual case in detail, but to give an overview of a general tendency in the way the disease develops.
STAGE 1: FORGETFULNESS (MILD)
- Increasing forgetfulness identified as a problem
- Changes in personality
- Some disorientation of time, place, speech
- Difficulties with complex problems, planning and decision making
- Some insight into condition
- Difficulties in coping with social situations
- Difficulties for sufferer, carer or family in accepting the disease
STAGE 2: CONFUSION (MODERATE)
- Deterioration in skills of daily living
dressing and cooking
Back to Contents
STAGE 3: DEMENTIA (SEVERE)
- Personality changes
- Deterioration in memory and concentration
- Losing things, wandering
- Disturbed sleep
- Disorientation of time and place
- Strong reliance on primary carer - Clinging
- Loss of social limits
- Beginnings of incontinence
- Loss of trust, fear of being afraid
- Home a feeling rather than a place
- Increasing confusion and disorientation
- High levels of agitation and sometimes aggression
- Continual wandering
- Incontinence of urine and/or faeces
- Abnormal body movements
- Finally become immobile, unable to feed oneself; weight loss
- Delusions and hallucinations
- Need to be able to move about and consequent need for security and sometimes restraint
One of the dominant negative emotions experienced by those who suffer from one of the dementias is fear. The fear of losing one's mental capacities is one of the major fears of people old and young. Recent publicity and awareness about the disease has highlighted concerns, particularly amongst older people, that they may be losing their minds.
Similarly, sufferers fear loss of control. Barbara has noted it in many of the people she has cared for: 'None of us enjoys being organised and pushed around faster than we can personally manage and not one of us likes to feel that we do not have control over our own lives.'
Fear needs to be named so that others can respond honestly. So often subjects which raise fears are not broached lest other people are upset or offended. More often, however, people are distressed by not being able to offer a loved one the care and support which makes fears tolerable.
Fear is most often of the unknown or unexpected. John, who saw his control dwindling and expressed some apprehension, takes a very practical approach to handling his fear: 'Another change is that I live more for the present. Before, I used to know what was happening tomorrow. It was mapped out. Now it's vague.'
Caring for someone at home has been described in the literature in terms of the title of the book The 36 Hour Day (Mace, 1983). Particularly in the second and third stages of the dementing diseases, it is a constant and frustrating task.
For the primary carer, the adjustments are many. In a number of ways, as the disease progresses, it is like adjusting to the needs of a demanding child. Carers can feel lots of anger and frustration,
emotions which people learn to deal with differently depending on their life history.
Sometimes, these feelings are released verbally, emotionally or even physically on the person with the dementia.
Others bottle things up more, like Beth: 'I am sure that we were never made to keep our emotions under control to that degree. The pressure generated began to affect my health.' There are sometimes high levels of guilt about their negative attitudes or behaviour towards their loved one.
Many carers find it difficult to express these negative feelings to themselves let alone to their family and friends or outsiders.
Fear of loss of dignity, and ultimately of control and personality weigh heavily on the person with dementia. This is often accompanied by frustration at their inability to communicate effectively and to be taken seriously as a person with their own sensitivities and aspirations. Like carers, people with dementia grieve for opportunities denied and experiences curtailed. Beth reflects: 'My husband was too early with his illness'.
While it would be simplistic to assume that concentration on positive aspects of new relationships would solve all problems, some attempt to shift focus would seem helpful. Perhaps even a bit of humour. Anne speaks of it in her attempts to deal with her feelings about her mother: 'We soon began to highlight the humour, the absurd, and often our helpless laughter saved an otherwise unbearable situation'.
It seems important to reiterate what has become almost a truism in modern psychological writing: there is nothing wrong with negative feelings. It's all right to have them and it's all right to express them without doing violence to others. Often, this acknowledgment and expression is a vital part of the process of dealing with them constructively. One of the major advantages of support groups, for example, is that they provide the opportunity to express feelings in an environment in which people will understand and accept.
Negative feelings are part of the information we have available to us when we're making responsible decisions: they don't control what we do. They need to be balanced against more positive feelings which sometimes get lost in moments of stress: joyful memories, commitment, love and affection.Back to Contents
The clearest need for those who suffer from one of the dementias is to be able to maintain their dignity, respect and self-esteem. For John, this meant remaining independent for as long as he could: 'I wanted to be as independent as possible. I had looked after myself since I was thirteen, and I didn't want to start being looked after.' The very nature of the disease whittles away independence. Barbara, after stressing the need to modify tasks to the capabilities of the person with dementia rather than the other way around, observes: 'Constant failure to complete tasks which are no longer possible, then, affects self-esteem, confidence and competence'.
Meg notes one of the consequences of her father's dementia, but reinforces how important it is to encourage people with dementia to achieve what they can: 'He is reluctant to try new things, but actually enjoys them once he can be coaxed into doing it'.
Some of the factors which tend to diminish the dignity and self-esteem of people with dementia come from the social circumstances they encounter. One common reaction to people with dementia is to think they are mad. Beth tells of friends 'standing back from this terrible mysterious mental illness'.
Prejudices about mental illness exist deep in the human psyche and we are becoming more aware of how they operate to the, disadvantage of people with psychiatric illnesses. They directly impinge on people with dementia. Dementia does involve socially awkward and, at times, difficult behaviours. People with the disease have difficulties communicating and they confuse concepts. They are often less inhibited. But they are not mad.
They often have some insight into the nature of their diseases. Barbara has observed this: 'For a long time, many people with Alzheimer's have a great deal of insight into their loss of memory, their muddlement, their making more and more errors, their inability to do adequately things that they have done with ease all their lives'.
Les has experienced the consequences that go with the diagnosis: 'Once you've got Alzheimer's, you're branded. That was terrible. It still is terrible. 1 can't come to grips with that at all. It is so frustrating. Because I've Alzheimer's, what I say is irrelevant: nobody will listen.'
Even the system designed to make their care easier is not free from fault and sometimes mitigates against people with dementia being accorded dignity and respect. Beth mentions the way their environments are made to change too often: 'Does anyone realise how hard it is for a confused person to learn a new environment? When is the system going to look at these patients as people, not pawns that have to be moved from one situation to another.'
People with dementia need support and assistance, but of a kind which respects their human dignity. The community has to adapt its understanding and skills and offer assistance which does this. Fear and stigma will only reinforce their isolation and result in higher levels of institutionalisation. The understanding and adjustments required are essential, and both sufferers and carers should have no hesitation In asserting themselves and their rights in the face of people or organisations who treat them with anything other than respect.
How is this done? Many people have great difficulty being assertive. Assertiveness is often mistaken for aggression. People who behave with aggression find in the long run that it is not really helpful in most situations because it does not accord to the other person the very respect it seeks. Rather, it seeks to express our needs
and wishes at the expense of others. Further, it often escalates aggressive responses.
The same mistake leads other people to withdraw. They think being assertive is nothing other than being aggressive, and because they feel bad about being aggressive, they are passive, that is, they take no steps to ensure their feelings and thoughts are respected.
An example will illustrate the last point about content. Many of the contributors reported not being taken seriously when they first approached a professional about their problem. Nonetheless, they knew that there was a problem, and often felt frustrated and angry with the response they received. An assertive response to this set of circumstances would go something like this:
|'Doctor, thank you for your time. I do appreciate that you are concerned not to cause us undue worry.||An acknowledgment of the genuine care and concern of the other person.|
|However, I am very frustrated because I know that there is something wrong even if I am having difficulty in explaining what it is to you.||A clear statement of what you feel, how strongly you feel it and why. Not blaming another person for your feelings, but owning them.|
|I would like a clear diagnosis of what the problem is, and further referral if you feel that you have done all you can.'||A clear statement of your needs which recognises the concerns and needs of the other person.|
Most carers who contributed to this book report being hit by guilt at one stage or another of the decision-making process associated with the disease. Anne experienced it when she took her mother to full-time residential care: 'Under a grateful facade, I guiltily suppressed the sick knot in my stomach and the tears I longed to let go. "Oh Mum! How could we leave you here?"' As did her father: 'He grieved bitterly, isolating himself, unable to let go of his guilt at his perceived failure as a caring husband.'
Judith experienced guilt because her decision, like most major decisions, was not cut and dried: 'I really didn't feel guilty with the decision to place Mum in a nursing home, rather, perhaps there was the guilt of feeling so relieved that the burden had been taken from us.'
Joan remembers her feelings about Henk going to a nursing home: 'But I do remember sobbing for most of the night - and accusing myself over and over.'
At the same time, none of the carers who reports feelings of guilt suggests practical strategies for dealing with it when it occurs. Some rely on the fact that time itself often heals feelings of guilt. Anne tells us her story: 'Only gradually has he [her father] come to a point, during the last year, when he could take up his own life and live beyond the hospital, participating again in his old activities and pleasures without feeling that he is abandoning Mum.'
And for others, a decision that has only one aspect when it is made acquires others as new patterns come to light. Judith's story shows that even situations which seem to have an overwhelming downside can change as time throws light on them: 'I began to feel so good in myself. I made up my mind to go back to work part-time and get my life back together again. I felt that the last two years were a phase that cannot be forgotten but also a time for me to dwell on. I felt again so much love for Mum. I didn't have that constant concern I felt near the end of the time she was with us, that my love was turning to resentment.'
But there are strategies for dealing with guilt. None of them can guarantee to take the feeling away but they do help to relieve the intensity of guilt feelings, and to allow us to proceed with good decision making.
How do you handle guilt feelings? First, attack guilt intellectually. The argument runs something like this:
Whatever its advantages in stopping children doing dangerous things while their mothers and fathers are not supervising them, guilt is not a helpful emotion for adults trying to make decisions. It gets in the way of making good decisions for three reasons:
Secondly, acknowledge your feelings of guilt. Share them with others if it helps. There is nothing wrong with feeling guilty. There is a problem when guilt paralyses us and becomes a hidden agenda impeding responsible choices. Joan felt she had made a wrong decision in consenting too easily to her husband's surgery which had marked the beginning of his severe dementia: 'The shock of four years ago had caused a kaleidoscope of emotions, the worst of which was guilt.'
Thirdly, proceed to make your decisions anyway. Seek good information; often knowledge is enough to relieve guilt on its own. This is what happened to Joan: 'His [the doctor's] advice, that multiple infarct dementia had been identified as a disease only in 1974, had finally extinguished my feelings of guilt.'
Make your decisions in a systematic way. Give yourself as much time as you can: best decisions are made when a time of immediate crisis has passed. After getting accurate information, look at the whole network of relationships of which you are part. Consider the long-term impact of your decision on yourself, and on all the people who are important to you. Jot down the gains and losses if it helps. Consult people who are part of your network if you are not sure about the impact. Swap ideas with people who are a little more detached from the situation.
Finally, take decisions which expand rather than constrict your options. This involves a willingness to revise options and to admit mistakes. If a mistake is made, the process can begin again.
Do anyhting else you like, but adamantly refuse to feel guilty. Particularly, do not let guilt stand in the way of taking a stand which is in the long-term best interests of yourself and with your relationships with the broad range of people you are close to.Back to Contents
Stress is not necessarily a bad thing; it is part of the natural way our bodies gear up to face a challenge. But too much stress can detract from our general ability to cope, and there is no doubt that dementia puts firstly both sufferer and carer, and ultimately mainly the carer, under an inordinate degree of stress.
Margaret noted its impact consistently in her professional work: 'I was always acutely aware of the high levels of stress experienced by carers in trying to come to terms with the disease, and as the result of their caring role.'
Robert reports experiencing some of the symptoms of undue stress: 'The combined pressure of work and Mick's behaviour put great stress on me. This resulted in a disturbed sleep pattern which eventually built up to a sleep deficit. One needs good sleep to clean up the mind's filing cabinet.'
Pauline also found that the level of stress affected her physically: 'I wasn't eating, and was coping with my household with great difficulty. I was so exhausted and frustrated.'
Stress has many tell-tale signs, and can have its influence on just about all our normal physical, emotional and mental functions.
However some of the clearer signs of stress are:
- fatigue that sleep or rest does not fix
- social withdrawal
- flatness in mood: you feel like a "washed out dish rag"
- muscle tension: tightness in your chest, twitching, teeth clenching, restless hands
- panic attacks: you have trouble breathing or you have chest pains
- obsessive behaviour: you eat or drink too much, smoke too much, crave certain foods
- sleep problems
- nausea and forms of digestive problems
- inability to concentrate
- rumination, recurrent bad dreams.
Some of these things can have medical causes, and a doctor should be consulted in the first instance.
If the cause is not physical, there are tactics that can be used to relieve undue stress. These include:
- Removing the stressors: while a carer is not often at liberty to remove stressors entirely, many of the practical strategies described above can take some of the sting out of the situation. The aim is to reduce the causes of stress to the unavoidable ones.
- Taking a break from the causes of stress: the old adage was that one should not run away from one's problems, but should face up to them. That may be true, but it is sometimes a matter of timing. It might be important to run away today in order to regroup and return tomorrow with a regained sense of control. This is one of the clear advantages of respite care.
- Looking after your body: check that your diet is balanced, Give yourself opportunities for exercise, rest periods. Cut out or cut down on alcohol, smoking, caffeine.
- Giving yourself a regular break for relaxation: relaxation techniques do not have to be highly sophisticated. A hot bath, a quite, brisk walk in a favorite spot, a nap in front of the TV, a massage, reading a book in a park, dinner with company you enjoy, seeing a good movie, are all examples of relaxation techniques. Some people find more structured activity a better course to follow. They learn meditation, they visit a church to pray or they take up yoga. Still others prefer a sporting outlet: a swim, a game of golf or tennis or bowls. Professional counsellors can teach relaxation techniques to those who are having difficulty.
- Sharing your concerns with others: talk to a friend or family member. Perhaps you will find it easier with a
minister or priest, your doctor or another professional person.Back to Contents
Seeking professional help with stress: consulting a trained counsellor or psychologist.
We end where we began: this is, indeed, a book about human goodness.
The people who have told their stories here are not saints or martyrs. They are ordinary people who have shown the whole gamut of human responses as they have grappled with very difficult changes in their lives. They have made mistakes and got up again. They have given in and raised themselves to extraordinary efforts.
The stories in this book are monuments to the resilience of the human spirit in the face of adversity. They speak hardly at all of doom and gloom, but mainly of the love and support found in unexpected and expected places.
We can but say thank you to the men and women who have shared their deeper feelings so that others might know that they are not alone, and that dementia does not ultimately destroy the things they value most.Back to Contents