After some years have elapsed I take a pile of these fascinating diaries and tear them remorselessly to tiny shreds in case someone should get to read my innermost thoughts, maybe when I’m dead! God forbid. Ah, the trials of the artistic temperament are manifold.
There are Creative Writing courses and Literary Societies that persons of my inherent desires can join, I’m told. But the only drawback there would seem to be that I am too mediocre and certainly have no ideas on subject matter. What’s the use of joining a club if one arrives weekly with a blank, virginal sheet of paper and an unused Biro? But once I get over this temporary writer’s block I’ll really get going. All of us writers suffer from these little setbacks from time to time.
Like my hero, Banjo Patterson, I can only write about what I know. The trouble is I really don’t know anything much about anything at all.
I am the proud possessor of all the proper gear. A stack of books with inviting pages sit on my brand new desk positively crying out, ‘Write on me, or at least put your name inside the cover for starters’. I have manila folders by the dozen, Biros galore, reams of typing paper, a second-hand computer that does all the necessities except make me a cup of tea.
Plus I have a ton of staples to go with my seventeen staplers, a hole punch or two or three and enough white-out to paint the side of a decent sized barn, and the creative urge is upon me.
Some years ago I attended the local University and this catered more than adequately for my scribbling needs. Churning out assignment after assignment necessitates a great deal of devoted pen-pushing. Yes, good times indeed were had in the writing department. I even received an ‘A’ for my Logic and Rhetoric Course, which was astounding considering I am not strong on logic and rhetoric is not my long suit. Verbally I haven’t much to contribute so naturally I could never see the logic in that ‘A’.
Letters would seem to be a workable solution to my pitiful quandary but when I sit down to write the only information that arrives on the paper is, ‘We are all well. Hope you are also. Nothing much happening here at all.’
I would like to write about my childhood and my children’s childhoods. But the problem would appear to be that having spent more than enough time in a Valium- induced Never-Never Land, my memory has rather too many gaps in it.
Lack of memory and lack of inspiration are the only factors holding me back, I might add. Otherwise I would be writing all day every day and drawing word pictures for multitudes of readers.
My erstwhile friend, Ambrose, was also a writer of some magnitude. However, Ambrose stuck to brief notes and detailed lists to express himself, having a bundle of lists for each noteworthy subject. Items cover such diverse subjects as ‘Places of interest to visit in the area’, ‘Fillings for the current year,’ ‘Letters to write to the editor of the newspaper,’ (he never did). And ‘Is there a hose running?’ (The latter was stuck to the cistern of the toilet. Well, I ask you.)
I could read an admire his interminable lists for hours, fascinated by their breadth and scope. I’m sure he had an index of them on hand at all times in case he needed to refer to them. A little Rolodex of Ambrose’s wishes, need sand wisdom recorded for the ages to come.
I have pleasant visions of myself slaving away over a hot computer into the wee, small hours, a glass of some strong liquor reputed to assist the literary flow at my elbow. I even wear one of those green eyeshades to cut down the glare. (What glare? I’ve always wondered about that glare.)
I was published once. It was a par in a magazine, something to do with my husband and a new lounge suite. My pen name, I remember, was ‘Mad Eyes.’ Did the choice of name have to do with the lounge suite, the husband or could it simply have been that I had forgotten to take my Valium that day?
My grandson, Pud, is also heavily into the writing game. Family legend has it that he was born with a sheet of paper in one hand and a pencil in the other and when he arrived into the delivery room he asked the doctor how to spell ‘Hello’. But you know how family legends are and this may be a slight exaggeration aimed at Pud’s need to be forever writing. So far his literary well has not run dry.
Pud has been known to take enormous interest in my scribbling, as I have in his. One day he asked me,
‘Are you an author, Ma?’ Noble thought indeed.
‘No, Pud,’ I informed him sadly. ‘But if ever I get my book published then I will be able to say I’m an author.’
‘Mmmm,’ he commented thoughtfully. ‘And when you do,’ (optimistic sausage that it is), ‘You know that part in the front where it says, To?’
‘Yes, Pud,’ I acknowledged gravely.
‘Well, who will it be To?’
‘I suppose that it will have to be To Pud, seeing as you’re the only one who has put the word on me,’ I told him in my sincere way.
‘Mmmm,’ said Pud. ‘That will be nice, Ma.’ We exchange meaningful glances, our hopes high to see our names in print.
Gratefully accepting a redundancy package from the government department that had been good-natured enough to employ me for some nine years, hopefully meant that I would have more time to put pen to paper, so to speak.
At a local dance one night just before my retirement, a ‘gentleman’ of very brief acquaintance inquired how I intended to fill my time in my redundancy days. I told him I intended to write. He asked me what caused me to think I had anything worth writing about, to which I replied that I had much to say when I finally worked out how I wanted to say it.
He looked at me in astonishment and murmured almost inaudibly,
‘Egotistical bitch.’
Dumbfounded, not to mention stupefied, I requested a repetition of his taciturn remark, which needless to say I didn’t receive. Our friendship failed to flourish further. All things being equal, (I like that phrase. It sounds so balanced and purposeful), what does ego or lack of it have to do with the desire to express life’s experiences and lessons?
Maybe after all Pud or another grandchild with an equal predisposition for writing will turn out to be the literary genius of the family and I can say,
‘Yes, taking after their grandmother.’
That will be the next best satisfaction. I can bask in all that reflected glory when the talents of the forthcoming generation reach fruition, knowing all the while who the authors in the family are, my good self being the firstborn, of course.
Meanwhile, I’ll write and out of the wilderness may come some form of inspiration on what to write about. Maybe I’ll ask Pud.
My one-time friend, Ambrose, the soul of tact and courtesy, on reading a draft of this masterpiece, asked,
‘Have you ever thought of taking up painting?’
I rest my case.
10. A Little About Love and Alzheimer’s Disease
27 June, 2015
Watching this dreaded disease consume my beloved mother almost destroyed me. By the time she died I was gutted. Through all the years of attending to my mother’s welfare, my own health had deteriorated to the extent that I had to have several major operations after she had passed away. During all that time I had leaned on my children for support. Luckily, they were there for me at that time. Meanwhile, towards my mother’s final days, my oldest grandson was undergoing treatment for aggressive leukemia from which he is now in remission but battles the effects of Graft Vs Host.
I could not reconcile the sadness my mother had suffered throughout her life with the brutality of her final illness.
The following is a condensed account of how she came to fall victim to this pernicious illness, the signs and symptoms and the consequences we who loved her suffered as we watched on.
5 April, 1998
Part of the lessons we are here to learn in this life and some of the essential contributions we must make to the lives of others traveling the journey with us is to try to contribute in a way that will ease the burdens of those we love and who matter to us.
We must encourage them, strengthen them and foster warmth and comfort i
n their hearts. If we can succeed in this endeavor, growing in strength and understanding as we journey on, then we have not come here in vain but have achieved some measure of the lessons we are bound to learn.
I had hoped to write a journal covering some of the aspects of my mother’s battle with Alzheimer’s Disease. It was, of course, my battle too, as I was her full time carer, her only daughter and her devoted friend. I hope this brief account of our experiences will be of interest and value to those of you who are passing down the same unknowable pathways we find ourselves upon.
Four and a half years ago I had the choice of taking an early retirement package through my Public Service employment or of transferring to another department. I knew all was far from well with my mother. But blindly, I thought if I ceased working outside the home and devoted myself to seeing to her welfare I could help her overcome the decline I could detect so plainly.
Small signs had been there for a long time. Looking back, I remember her saying to me at about 70, that she had lost the ability to cry. No matter how much she had been hurt or how sad she was, no tears came. I guess this was the beginning of her incapacity to experience emotions. Her life had already been full of tragedy and I thought that any lessening of that strong emotional upheaval could only be a good thing for her. Little did I know at the time that this is one of the early markers for Alzheimers. The loss of emotional feelings.
Aware that she was losing the essential comprehension of the world, legal documents had to be rapidly put in place. An Enduring Power of Attorney as well as other matters had to be seen to while she was still of the ability to understand the importance of such matters. We were able to do this by explaining step by step why it was necessary for her to hand over her legal obligations to me, while at the same time, reluctant to tell her what the expected outcome of her changes might be. I was still fighting blind, still thinking I was master of my mother’s fate and I could cure her of this cruel disease.
She had developed an inability to know the functions of certain objects, substituting various items for one that was similar; for example, such as a side plate for a saucer, a mop for a broom. Using items inappropriately such as a roll-on deodorant for make-up foundation. Being unable to hang clothes on a hanger. Chaotic disorder reigned in her bedroom which had always been tidy until then.
Repetition, confusion, short-term memory loss were all patently obvious. Early on we had loss of category, function and placement. All this was happening for some time while I was still working but I did my level best to cope with it or to ignore it if it was not of any danger to her.
When I finished work it took twelve months to accept the fact that I couldn’t cure her of what I feared was wrong with her. I would have to find a way to face up to that unnerving fact. Finally, even though deep down I knew that she was slipping away, giving in to have my worst fears confirmed by our doctor brought on a prolonged bout of grieving for the family—myself, my children and their partners.
Anger, guilt—the whole gamut of emotions visited me. My mind was tortured during endless, sleepless nights. As well as Mum being changed to a certain extent, there was no doubt I was in emotional difficulty, feeling lost, confused, sometimes tense and certainly unsure of myself and where we were going. All the signs and symptoms of dementia were present in my mother. What could I do? I experienced an overwhelming sense of powerlessness as if we were completely at the mercy of Fate.
Consequently, I gnawed away at the edges of my soul until I finally realized that I had a certain amount of choice available to me. I could either accept the fact of Mum’s illness resignedly while possibly resenting the fact that I had to care for her or I could approach our journey with an informed and positive outlook and make the experience a little easier on us.
At this stage Mum still had a clear comprehension of the past. It was the present she could not hold onto. In short, fair long term memory and little short term. She spoke repeatedly about the main issues of years gone by, especially her rape by a family friend some thirty years her senior and her subsequent treatment by the establishment—the Catholic Church hierarchy and the legal fraternity of the town where the rape occurred. The shocking neglect and abhorrence of the Roman Catholic Matron of the hospital where I was born was also of great and ongoing distress to her. She lived in the most torturous and vivid recall with all these matters and talked about them repeatedly.
Perhaps we are all haunted by fears to some measure. In facing up to those fears and the pain that comes with them, we learn to grow beyond this stage. We can appreciate in retrospect that the reality is not as terrifying as we expected it to be, realizing we cannot remake the world simply by willing it so. We have to roll with the punches or be trammeled underfoot. Difficult as it may be, we have to go with the warp and weft of the situation or perish.
With the awareness that our worst trepidation had foundations in truth came the knowledge that I had at some deep level, been preparing myself all along to take care of my mother as far as possible through her final illness. Somewhere inside me I had subconsciously known the time was at hand when she would revert to childhood and I would become the parent. Eventually I realized, however warily, that I had come to a tentative acceptance. And so I learned to knuckle down and make the best of a situation I could not heal.
But how hard it was to face the certainty that my mother’s journey through the tangles and labyrinths of this disease was a definite conclusion that couldn’t be avoided. My choice was either to bite the bullet, follow and be part of making her travail as pain free as possible or to place her into care and to resume paid employment. Some days I could find acceptance of the task. Other days I railed against Fate in what I soon found to be useless resentment.
The initial peace of mind I gained was by making the subconscious but irrevocable decision to care for her at home for as long as I possibly could. Early calm was arrived at with the experience of contacting the Alzheimer’s Association at a Day Center where Mum was taken two or three days a week. Thus I was able to have a little time to myself to control my grief, run errands and to try to come to terms with the future parceled out to us.
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.
Eloquent Silence Page 18