Eloquent Silence

by Weise, Margaret

  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.

  When the newspaper was delivered each day she would sit for hours reading it from front to back, over and over. Yet later in the day she would have no idea of the content. Nor would she be able to perform the simplest of tasks such as push the record button for the video player. I had to switch the television on for her before I left for work each day so that she could watch her ‘soapies’ in the afternoon.

  Quite early in the piece she lost the idea of numbers. She could no longer tell the time or if she was giving me money to buy some things for her, she had not the faintest idea of the value of the notes and coins. I knew this latter was a very bad sign and was very annoyed when a cousin laughed at her and told her she would have the money if Aunty didn’t know what it was worth.

  ‘If you don’t want it, I’ll have it, Aunty,’ laughed this cousin who was always very conscious of the sounds of coins clashing. I was annoyed with her for being so crass, as I knew it was an outward and visible sign of an inward and invisible problem that would have to be addressed in all its seriousness before too long—the hopeless disintegration of my mother’s mind. It was not merely a simple matter of not knowing the value of money, but a significant sign that all numbers were losing their meaning for my mother.

  Various people would drop in and she was excellent at covering her condition up. She may not remember their names, so she called them, ‘Love’ or ‘Dear.’ No one objected to that. She knew their faces if not their names.

  What hurt me more than anything was that as time went by, people stopped visiting her, especially when she had gone into care, saying, ‘She does not know me.’

  I was inclined to want to answer, ’But you know her.’ However, I felt this would be wasting precious breath that could be better spent doing other things. That my precious mother had committed the unpardonable sin of losing her thought processes was to me the saddest of all conditions and I would have done anything humanly possible to bring her back from the brink of the ever-encroaching disease. She still had the beautiful smile that would transform her face from blankness into awareness of loving the person at whom she was gazing.

  She developed little obsessions. Mum was always a superstitious person, (throwing salt over her shoulder if she’d spilt any while cooking, having to say ‘Rabbits’ last thing on the last night of the month e.g.).

  Gradually she grew obsessive about two people never walking on the opposite side of a pole, as that would split a friendship.

  And the Numero Uno, kissing someone twice was Bad Luck. Very Bad Luck indeed would follow this action unless a third kiss was given.

  At that time, around 1992 I was still living in a Fool’s Paradise, believing that all these symptoms were just a normal part of the aging process and that I could ‘cure’ her when I was at home with her all the time.

  I began to go to work part time, finishing at 3pm so that she would not think she had to cook dinner, switching on the stove and burning herself at around 4:30.

  When I left work to take care of her in 1993, we went for a holiday to the Gold Coast. Out of her home environment, she began hallucinating in earnest. She was certain our GP, a man of a similar age to myself, and I were conducting an affair. Each morning she would tell me she heard him come and go through the night. No amount of persuasion could convince her she was wrong.

  Our doctor, despite her conviction to the contrary, did not conduct his surgery all day then do a round trip of four hundred miles in order to fall into my arms every night. Finally, convinced no amount of arguing or laughter would dissuade her from this belief, I simply gave up and let her tell me over breakfast every morning how she had heard our GP come and go through the night.

  As well, she began to forget some birthdays, as dates were a problem to her. I can recall being very sad when she forgot my birthday one year but remembered that of my son-in-law a few days later. Sad, but accepting of the fact that she could not help the symptoms of this insidious disease.

  She was beyond the stage where she had desperately wanted to belong at family gatherings, gazing from one face to another to try to following the conversations but unable to contribute at all. The occasional visitors that we had began to speak too loudly for the small space we lived in, no doubt thinking, as some do with deaf people, that volume will make things clearer.

  The time came when I found it very difficult to get her to leave her bed and get dressed. For a time I elicited the aid of the Blue Nurses. She would get out of bed for them every second day for her shower. But eventually we had to resume the battle on our own as the nurses decided we would be able to cope and no doubt had enough on their plates already without having to shower my mother who seemed mobile. But could be very stubborn for me, refusing to budge from the bed in her gentle voice, telling me in her fragmentary phrases that she would get up later. That promise would not eventuate into going for a shower. Even if I caught her going to or from the toilet she would find a way to convince me that she was not ready to shower.

  At these times I would suffer very badly from depression, taking her meals to her on a tray and sitting on the floor in her room with my own meal on a tray. The only talking was done by me and, being cooped up in the house both day and night, I did not have much news to report.

  She did not want me to read the newspaper or a book to her, preferring to lie quietly with her eyes closed. Later investigations into this horrid disease lead me to believe that unusual noises often go on the heads of these sufferers and perhaps she could not reconcile what I was reading with the pandemonium that was going on in her mind.

  This was when the Day Care Center came in very handy as she seemed to enjoy going there a couple of days a week on the minibus. I has given me a much needed break and a chance to run errands and catch up on chores I needed to do.

  So we worked our way through loss of memory, then loss of intellectual skills. She had
been a very competent knitter but the time came when I would have to pull out all she had knitted during the day while I was at work so that she could begin again the next day. Only to return home the next evening and find a similar knitting fiasco that had to be pulled out.

  She developed difficulty with social and personal interaction, becoming insulted when no insult had been intended. Table manners began to slip away, talking with her mouth full for instance, something she would never have done previously.

  Later she would withdraw even further, unable to make an entry into a circle of conversation, yet most of the time wearing her own brand of loving smile.

  I surrendered her to a nursing home in September, 1998, just before she turned 80. This was by far the hardest thing I have ever done in my whole life and caused me the most grief and guilt.

  There were huge renovations going on at the home and the accompanying noise was horrendous. I found that was a perfect excuse to bring her home on Mondays and take her back on Fridays for some months. Eventually the nursing home informed me that I would still have to pay the 85% of her pension in order for them to keep her bed.

  The renovations which had taken months and had enabled me to use the excuse of too much noise so that I could take her home for the week, were complete. I had to surrender her full time. I was heartsick and spent the next few months curled in a fetal position on the couch in front of the television, unable to forgive myself for the traitorous bitch I believed myself to be.

  Incontinence plays a huge part in the final decision as a rule. There is no need to enlarge upon this.

  My mother was a beautiful-natured person full of love and patience. The only person she ever lost her temper with was me, and this was always short-lived. We forgave and forgot as rapidly as whatever our difference of opinion had been. I could never say she was emotionally out of reach until the final couple of days while she was unconscious and in the process of dying, and perhaps not even then. A nephew she had loved and adored when he was a child and who had been estranged from our family for some eighteen years came to visit her within the last 48 hours. He stood beside her and gently held her hand, communed with her silently for a long while.