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The story continues…

The weeks drag on as we wait for the physician’s appointment. I see more and more sticky notes appearing, whilst Bill becomes more and more withdrawn. I notice how hard he concentrates on simple tasks like packing away the dishes from the dishwasher. He spends hours alone in his study, I decide not to try and cajole him out of his den. We speak about the usual topics, avoiding the elephant in the room.

Neither of us sleep well the night before the appointment. We are at the surgery an hour before the time – mostly because of Bill’s anxiety that we might be late. We wait in silence, seeing people come and go. When it is our turn, Bill takes my hand in a firm, sweaty grip. I feel the tension of his body in the way he holds on to me. I feel as if I am being lead to the gallows. I know something is very wrong, but up until this point I have been to scared to speculate, even though a thousand monsters took up residence in my head.

A thousand questions are zred in rapid succession, I begin to feel dizzy as a picture of dread unfolds within my head. I forget almost everything about the 90 minute appointment, except for the last sentence that hits my brain like an ax: “I think we can safely say that Mr. Brent has dementia. For us to know the exact kind of cognitive impairment, we will have to do a brain scan.” By this point Bill is silent, almost deadly silent. We cannot move. I know the session is over, but I cannot get my legs to walk me to the door. The kind, sympathetic physician offers me his arm. Bill follows, his entire body language screaming ‘defeat’, as if he has just lost a battle between life and death.

When we get into the car I break, hollering a cry so primal that I the sounds I make scare me. Bill holds my hand, not showing any emotion. I don’t know how long this went on, but by the time I compose myself it is almost dark. I drive us home where Bill pours us each a triple gin and tonic. The pragmatic Virgo in me starts making plans and znding solutions. The gentle Bill asks me if we can spend one last evening together as if today had not happened. Just watching tv, having a drink, going to bed. I agree. We will tackle this tomorrow, enough for one day.

And so our journey with dementia started. Millions of questions race through our heads: do we tell our children now? Do we tell friends? Do we sell our house and move to a retirement complex – a thought we both reject passionately. Do we go and travel while Bill is still able to do so? How long will it take before Bill needs more care? Who will provide this care – I am not by nature a caregiver. How do we navigate this road that seems like a rollercoaster that will ultimately end in disaster? Where do we go to get realistic advice on what to expect? I znd myself sliding down a very deep dark hole at devastating speed. Bill withdraws more and more each day. I can see how depressed he is, hardly interested in eating or doing any of the chores he was so good at. My heart breaks for him, as much as I go through moments of thinking it would have been easier if he had dropped dead from a heart attack. I hate myself the selzsh thoughts that run riot through my mind: I should have known this when I married an older man, I should have insisted on a healthier lifestyle, I should have known this was inevitable looking at his family history, why did I not insist that he stopped smoking years ago.

My mind does not not follow the usual pattern of denial, depression, acceptance. Instead it races through despair via depression to denial and complete anxiety back to hating him and loathing myself for being such an emotional mess. At night I can hardly bear to be in the dark with my own thoughts. When I do have some time alone at home during the day I scream so loud that the cat and dogs run for shelter. I swear and curse like a woman possessed. Maybe I am possessed.

As the days drag on towards the scan, our lives become more quiet and depressed. We keep our secret as if it is a murder we committed, riddled with guilt and shame. What are we ashamed of – somehow I cannot get myself to mention the word ‘dementia’ to anyone, not even in my conversations with Bill, as if it is something we have been found guilty of, and know that we are indeed guilty. We zght with medical aids and the pathologists who have to perform the scan – why do we have to wait three weeks? This is cruel, inhumane, horrizc to wait so long. I regress into moments of homicidal rage when I walk through a shop and see happy smiling couples holding hands. I want to scream at them, at everyone walking past me: “DO YOU HAVE ANY IDEA WHAT I AM GOING THROUGH? HOW DARE YOU BE SO HAPPY AND CAREFREE? I HATE YOU AND YOUR HAPPINESS!”

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