Eloquent Silence (24 page)

As a nurse who had worked with geriatric patients for twenty years, my mother had lived long enough to see her worst fear for her old age fulfilled. Dementia.

There would seem to be a pattern or a sequence to the events which envelop us, drawing our concentration and bidding us to become deeply involved. At the outset it is not necessary for us to understand the total pattern within which we have found inextricably woven. All we need to do is trust that there is a blueprint that we can live with, finding comfort that all will be revealed in time.

It was very much a case of ‘when the student is ready the teacher appears.’ I knew little of the disease except that society regards it with alarm.

Piece by piece I gathered information, searching always beneath the surface of the printed word for the hope that my mother could be cured. My mistake was in assuming that she had a future other then the slippery slope on which she had already embarked.

Unfortunately, I found no such information that could halt her slide into dementia. Had the occasion arisen at this stage of my life, I would have known the truth. No-one has, to date, recovered from Alzheimer’s Disease but I had been naive enough to believe I could be the first to help my mother resume her normal life.

At the time of which I write, I found the knowledge that the disease was incurable devastating in the extreme. So my story of love and sorrow poured out of me onto the pages with mingled regret and relief and I began to come to terms with tomorrow.

At the Dementia Specific Day Center my mother attends, I found a small support group that meets once a month. Once there, we carers can feel free to give vent to our sadness, frustration or bewilderment—whatever we happen to be suffering at that particular time. Often, offering emotional support to another caught up in fear and sadness on a particular day also helps us to come to terms with our own feelings.

The center caters for our loved ones for up to three days a week, giving us a chance to do whatever else it is we need to do without worrying about our loved ones. It’s a lifesaver for the carers who would either have to take their loved one with them while they saw to the chores, or worry constantly about them if they were left at home.

The St.Vincent de Paul Home Nursing Service is also a blessing for carers who need a break or need to do a particular activity on a certain day, I found in the course of time.

Unlike some carer’s families, my children and their partners all live in the vicinity and were prepared to help Mum and me through our rough patches. I tried not to call on them often as they all work and have children of their own. The knowledge that they are there and love us and will do their utmost to fulfill any favor asked of them was an enormous comfort  and source of strength to me as a carer.

A network of understanding, tolerant friends is also vital even if contact is often occasional and only by phone. Their understanding and acceptance of the situation which often causes last minute changes or cancelation of plans is appreciated, as the carer is often times not in complete control of the day’s events.

Many friends and relatives don’t last the distance. A person who is housebound caring for a loved one is not a stimulating social asset to have. We carers are not exactly the life of the party, nor are we really amusing even on our best days.

Nor is a dementing friend or relative of much interest for long, except to a special few. Most visitors are certain that, because a person cannot recall a name, they do not remember who the guest is or recognize them. Conversation is usually as good as non-existent. The situation soon becomes too hard and unrewarding no matter how highly the person was regarded in the past.

Time and again I realized that my mother remembered certain people even though she did not know their names, but the way her face lit up at the appearance of those who cared to call, confirmed my belief that she had not forgotten these people.

Perhaps we are better off in the long run without these ‘friends’ who sidelined us. When push comes to shove they may possibly have deserted us under other circumstances.

I won’t try to pretend this way of life is always easy but it certainly has its compensations. And I know for sure and certain that there were times when Mum didn’t find caring for me as a child too easy, either.

I’ve heard it said that one never gets over being a child as long as there’s a mother to turn to. The child I was lives on in me just as the mother who loved and took care of me in my childhood survived in Mum. We two have been extremely close as there was just the two of us for many years, my mother being a single woman who was, as I said, raped by a family friend and she gave birth to me out of wedlock. We have always been the best of friends so her suffering is extra cruel for me to have to witness.

If today I fail to live up to my own expectations I must not allow myself to indulge in self-flagellation but must try to do better tomorrow. Since we cannot change, or for moment do not choose to change our circumstances, then we are wise if we accept them instead of spinning our wheels in unproductive anger or turning the anger against ourselves and our vulnerable companions.

Worse yet, in thinking our loved one does not realize we feel put upon and disgruntled and consequently cause them discomfort. Even though we may consider they don’t know or care what’s happening around them, they are acutely aware of emotional changes or turmoil in those close to them and may react badly or withdraw even further into themselves. Alzheimer’s sufferers are acutely aware of feedback we give them even if they have no way of expressing their distress except to act out or to mutely pace up and down.

Unfortunately there is still a tremendous amount of misapprehension out there in the community. There are people who think a person suffering from memory loss somehow managed to bring this on themselves simply by neglecting their own wellbeing in some way  usually through lack of mental stimulation.

There are certain habits that can help exacerbate the condition such as alcohol or perhaps even smoking and/or blood pressure issues, for instance.

With education we hope to bring awareness of the true situation, that Alzheimer’s Disease and other dementias are usually not due to neglect, nor are they normally self-inflicted. This is a disease that manifests due to several different causes, even as cancer is a disease with differing symptoms and so far, no cure.

As I said, my mother worked for twenty years with geriatric/psychiatric patients. The first day I visited her at her place of employment, venturing into the long wards filled with catatonic, rocking or mumbling old ladies, chewing the insides of their mouths or dribbling down their chins, I burst into tears and ran away. At that time I was unable to face the sight of what human beings can be brought to in their old age.

Mum’s most dreaded outcome for her life’s ending was that she would be in the same category as these poor women. Yet when the time came, she cried when the doctor gave his diagnosis, along with me and by the next day had completely forgotten what he said—a benefit I had never hoped for in my wildest dreams. For once this insidious illness was a blessing in disguise. When I thought it wise to remind her what the doctor said so that she would be under no misapprehension, she said, “Oh, I didn’t think I was that bad,” and promptly forgot his diagnosis again.

Recently Mum was very ill. She suffers from a number of ailments including recurrent hypertension, upper respiratory tract infections, gastritis and nausea. About a month ago she was dehydrated after having been ill since we returned from South Australia in November.

I had finally fulfilled her lifelong desire to visit the place of her father’s birth and youth, Gladstone and Port Augusta in South Australia. She probably won’t remember for long but I am gratified to have been able to grant her wish.

This was the next stage of my grief as during the trip she called me her sister.

‘You’re a good sister to me.’

I was gobsmacked. Never in my worst nightmare could I have conceived the suggestion that she would not know I was her beloved only child.

‘I’m Margaret, Mum. I’m your daughter.’

‘Oh. I thought you were my sister Merle.’

Horror of horrors. She did not know who I was. Yet many times over the ensuing years she called me her sister and it no longer mattered to me as long as she looked at me with love. As long as she held my hand in her own lovely, soft, plump hand and listened to the stories I continued to tell her about the family. There were worse things than being called her sister. Much worse and they would come soon enough.

After we got home from that trip she was so ill I thought we would lose her. Both the specialist and the GP advised me not to bring her home from hospital but to leave her in care, but it wasn’t possible to do so on such short notice. Vacancies didn’t exist so easily and anyway, I wasn’t ready to relinquish her. I wasn’t ready to part with her as I had no mind picture of her leaving me for the last time and was totally unprepared for such drastic measures.

This weekend she has been to stay with my daughter and her family. She has been hallucinating, something she has not done for quite some time. Whereas before these imaginings have been drug or anesthetic-related, at this time she is taking little medication and I can’t think what would be causing her to hallucinate.

Since she came home from hospital her ability to communicate has become more and more impaired and much that she says are no more than ramblings that are going nowhere. Or sometimes she tries really hard to tell me something but can’t get it out, which results in her becoming increasingly agitated.

I try to lead her through a statement, asking, ‘Are you feeling anxious?’ ‘Uncomfortable?’ or whatever the case seems to me to be.

She replies, ‘Yes,’ or whatever is appropriate, so she is still able to identify her feelings.

And I tell her, ‘You need never feel anxious or lonely or afraid or whatever it is you may happen to be feeling. I will never abandon you.’

She replies, ‘Good. And the dog?’

I reassure her, ‘The dog won’t abandon you either,’ and she is at peace for a while.

This agitation is increasing and my daughter said Mum woke them several times last night seeking reassurance, just needing to know that she was not alone or abandoned.

We are fortunate in having a compassionate GP who is alert to our needs and takes time to have a chat. A supportive doctor is essential for carers as he/she can often tell what we need before we are aware of it ourselves.

Eighteen months ago we sold our unit in a noisy neighborhood where the next door neighbor used loud, ear-splitting tools in his garage all day, and bought a house in a quiet cul-de-sac. Once Mum settled into the environment it made a great (although temporary) change to her and thereby to her wellbeing as well. We have a garden which is all our own and pets for the first time in years. This was also beneficial for a time.

In August, thanks to the generosity of the Alzheimer’s Association I was fortunate enough to attend the Alzheimer’s Association Conference in Adelaide. Listening to the speakers read their papers, reflecting on their words meant my overcoming the final hurdle in coming to terms with our situation.

Making the journey gave me the confidence to take up the Qantas offer of half price flights for disabled persons and their carers. This was when we went to South Australia to see the places where the paternal side of her family settled in the first half of the 19th century. Never before self-assured enough to drive her around an unknown city, even so late in the day I would not have fulfilled her lifelong dream, modest as it may be, without the confidence given to me by the first trip to Adelaide sponsored by the Alzheimer’s Association.

We are all, I believe, here to learn certain lessons, and currently the rule I must reflect upon is that my control is limited to my own attitudes and my own behavior. I can make this journey relatively pleasant or I can make it tough for both of us. Mostly, the atmosphere that surrounds us, our home and our living, depends on me.

There is no more vulnerable person in society than the frail, helpless aged with their deadened expressions, their muffled voices and their stifled ability to communicate.

No doubt it takes strength to step into each new day with enthusiasm and take care of this beloved person who is some days much worse than others.

Other days it certainly takes a more hearty push to begin the day with vigor, but it’s comforting to realize that if today is well lived, all the tomorrows will hopefully take care of themselves to a certain extent.

So we journey forth with courage one day, more tentatively the next, while I extend to my mother the unconditional love she taught me as a child. 

What began as a simple thing with mild forgetfulness eventually became virtual oblivion. This is not the general outcome of aging and should not be expected to be the inevitable consequence of growing old. People can grow old with hardly more than a slight dimming of their wits. Nor does a person need to be really old to suffer from this hideous disease. Dementia can strike people in their forties, especially if it is the hereditary kind. This form of dementia is normally very fast moving and will rapidly cause complete deterioration and death.

From early days of using items in an inappropriate manner—deodorant for make-up foundation—my mother progressed (or rather, regressed) to the stage where she did not recognize everyday objects. For instance, if I said to her, ‘Put the butter away in the fridge, please, Mum’, she would not know where the fridge was, or if looking right at it, would not be able to put a name to it or know what its function was.

At this stage I was still working and in the mornings she would make us a cup of tea. One day I emerged from the bedroom ready to have breakfast and leave for work, to find her with her finger in my cup of tea. Then she popped her finger in her mouth and tasted it.

I asked, ‘Why on earth are you doing that, Mum?’

She replied, ‘That’s how I check to see if I’ve put sugar in it.’  That was the end of that and I no longer relied on her to make the tea. Besides, I was afraid she would scald herself.