Dementia Moves In

In July 2014 my partner, Coverley, of 15 years was diagnosed with mixed Vascular and Alzheimer's dementia. He was 68 years old.  

In hindsight there were earlier signs, but being 10 years younger, I never gave it too much thought.  I just thought he was getting a little forgetful with age.  The notion that he had a form of dementia never once crossed my mind.

He had always been a very active, lively and motivated man.  He had a childish eagerness for life and lived it to the fullest.  His energy was to be envied.  A party didn't start until he arrived.  He was the party.  He was the joker. 

His generosity knew no bounds.  Dementia didn't happen to people with his vibrancy.  But it did. 

Dementia is more than a brain disease  

I had been ignorant of this dreadful insidious thief that was literally sucking the life out of Cov.  The impact of his diagnosis was devastating to the both of us.

Somehow, in a short time, I got a grip on the situation by going into denial and convinced myself that things weren't that bad.  Hey, so he got forgetful.  I can help him with that!  

But after a few years the disease became more than forgetting information and people's names.  Tasks that involved several steps became frustrating and difficult. 

It was more than a physical or brain disease.  It was a debilitating social disease.  For such a sociable person, this was the cruelest symptom of all. It led to social isolation and caused much anxiety.

Losing Myself

After about 4 years I came to realise that this disease was sucking the life out of me too. I felt that I had lost myself.

I could no longer go to work. Outside of work and family, my identity was in travelling and camping around Australia, writing and photography.

After various attempts and mishaps it became apparent that we could no longer travel and camp.

Cov needed his routine and familiar surroundings otherwise he became confused and fearful. This then led to restless nights followed by long, tiring days.

I was feeling eroded and empty due to being overwhelmed by my own mixed feelings of helplessness, sadness, anger and resentment.

I felt I was imprisoned against my will for a crime I didn't commit. I was secretly resentful.

The person I was didn't exist anymore. So who was I? Life as we knew it had changed dramatically. Alzheimer's was taking both of our identities. We became more and more isolated from social activities. Everyday tasks became more of an effort and took more time.

A part of me felt so selfish because even though it was Cov who had the disease I was doing most of the complaining, even if it was in the way of self-talk. I feared that I was straddling some huge abyss with one foot in his imploding world and one foot in what I could salvage of my world.

This man that I loved still looked the same but his dementia was causing him to become introverted. Despite his changing personality, I loved him more than ever. I was very protective of him.
It was sad not being able to make life easier for him. The pain of watching someone struggle with everyday activities that we take for granted is gut wrenching.

To see someone trying their utmost to do more than they are capable of because they love you is very humbling. It is actually as pitiful as it is courageous.

I have never been so proud of him. He got up everyday and tried to make the most of it.

I have never felt more loved or appreciated. A day never passed that he didn't say he loved me or tell me how thankful he was to have me.

So maybe I had lost part of myself, but in hindsight that part that was lost was replenished ten-fold by the privilege to love, care and support someone who trusts you completely for their safety and well-being.

“But I know, somehow, that only when it is dark enough can you see the stars.”

― Martin Luther King, Jr.