Until you lose it.

About 7 years ago I noticed something in conversation with my mother; something slightly off, slightly confusing, something like a short circuit, I wasn’t quite sure what, but I knew it signaled the start of something bad.

An increase in frequency of these episodes prompted a full physical – the diagnosis,,,Dementia. The progression of this disease is, we discovered, quite predictable. Confusion, paranoia, loss of speech, and in the end, complete loss of rational brain function.

Armed with this information my siblings and I prepared for the inevitable. My father, on the other hand, couldn’t accept what was to come and poured through books, articles, medical journals, anything he could get his hands on that would offer hope of her recovery. Over the next several years he cared for her, protected her, and desperately hid her increasingly irrational behaviours, determined to look after her “until death do them part”.

Visits with my mother had to be brief because she tired easily. Her only memory was of her childhood and youth, and while she appeared at ease when we came, it was obvious she was vague as to who we were. Eventually and sadly, the illness progressed such that her behaviour became difficult to manage; angry outbursts, violence, aimless wandering, but my father remained diligent, determined to keep her at home. He rarely slept, for fear of her wandering, and because of her unpredictable outbursts, he could rarely go out with her. The happy home they had once shared was now his prison and while we had come to accept what was happening to her, it was becoming more and more painful to see what was happening to him.

The medical system, while somewhat cumbersome due to volume (and endless red tape), has a very specific routine for victims of Dementia and Alzheimers; providing regular home visits, check ups etc, to monitor the progress and provide assistance as required. My mothers Dementia had catapulted her to another level in recent months. Frequent violent outbursts prompted calls to 911 for assistance and every time my father would wait patiently in emergency for them to calm her, and then this fragile 87 year old man took her home because that’s what you do when you promise to look after someone for life. At this point it was unclear who was the greater concern, and after consulting with medical professionals it was determined that my mother needed to be moved into long term care, if only to save my father.

Moving day came and he took it stoically, acknowledging that this is what had to happen, even though you could see the pain in his eyes. My mother adjusted well. She is happy and well cared for. The need to put her in a secured facility means her world has narrowed but at least she is safe from aimless wandering. She has no idea who we are now, is happy to see my father and equally happy to see him go, and this is what he finds difficult. He keenly feels the void and she, mercifully for her, is oblivious.

Determined to remain in her life he visits every day after lunch. He brings a treat; a cookie or peach, sometimes a magazine, even though he knows she can’t read it. He lives for the childish delight in her eyes when she sees him and his gift, and it is this that keeps him coming back. Then, after too little time, she tires and he leaves her to go back to his empty apartment, and he cries. He cries for her and for him, for everything they once shared, and for all they will never share again. He says it would’ve been easier to lose her to death than this, because in this state she is neither, and he cannot, will not, move on without her.

Fifty years ago people died younger. My grandparents passed in their late sixties and early seventies. In fact most passed at younger ages then. Life spans were shorter and it seems that this shorter life span helped many dodge the bullet of age related illnesses like Dementia. Are we better off living longer? I don’t know. All I see is the agony of what this does to the rest of the living, and as painful as it was to watch a healthy, beautiful mind wither and die, nothing could prepare me for the ache I feel when I hear the gentle sobbing of an old man who cries himself to sleep every night, out of sheer loneliness.

The mind is a terrible thing to lose.

lonely man

3 thoughts on “The mind is a wonderful thing….

  1. Emily, you have captured the very essence of what those of us who have experienced this horrific disease have gone through. The survivors suffer in their own prison and very often die of a broken heart. You were very brave to share your story, I am sure it was difficult to compose. Maggie

    Like

  2. What an eloquent and touching piece. This really gets at how multi-faceted and heart wrenching an impact something like dementia can have.

    Like

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