real life

"I know you were still there." A letter to my grandpa on Alzheimer's Day.

Dear Grandpa,

It has been 15 years since you left the world. 15 years since your kind, gentle voice told us how much you loved us all, that you appreciated us and treasured us coming to visit you.

“Don’t ever stop coming to see me,” you said.

Each time mum and I would come, usually twice a week, you would say these same things. You said them because you meant them. You said them because you forgot you had only said them days, hours or sometimes, even only minutes before.

You knew something was wrong long before you were given a diagnosis, before they told you, ‘Alzheimer’s’.

We could tell too.

At first, it was the little things. Simple lapses in memory that could affect anyone.

Things like forgetting where your car keys were, or not buying milk when you were at the shops.

There were slight changes in your personality too, initially just enough to put it down to getting older or having a bad day. But because it was you, and you were always gentle and kind, when you began to lose your temper at little things, often at yourself because you could not remember something, it became apparent to us and to you, that it was more than just “getting old.”

And slowly the lapses in memory became more and more frequent and more significant.

After your diagnosis but before we considered your condition too advanced to make drastic changes to the way you lived, you still drove everywhere. Having your independence was integral to who you were, and we wanted you to have that.

"Having your independence was integral to who you were, and we wanted you to have that." Image: Supplied

This all changed one day when mum received a phone call from the police. You were found wandering around the city, lost and disoriented because your memory had failed you again and you could not remember where you had parked your car.

You were embarrassed and frustrated but knew that now things would have to change.

And that is the hardest part of the disease, knowing the everyday way you have to live your life, the way you understand your world will have to change because your memory and your mind is changing against your will and that you are powerless to stop it.

Your car was sold, your licence removed. The milk bar at the corner of your road and the fish and chip shop were now as far as you could venture independently.

Meals on Wheels were organised, carers came to visit you daily, Mum and I, and my aunt and uncle began visiting more regularly.

We were told keeping you in familiar surrounds was important in keeping your memory from being lost even faster; so we decided that letting you stay in your home, with support, was the best option for you.

Your home was your haven in every sense of the word. It is where your memories surrounded you, where the long-term memories that were made within the four walls remained intact and where the shorter-term ones, through photographs or objects would act as a spark to areas of your memory that were nearly completely gone.

But even your home had to change as you did. We had to place labels on your drawers and cupboards, so you knew where items went – cutlery, mugs, plates, cereal. Without them you would forget where they were kept or put things in places you couldn’t recall later.

There were times when this change was too much for you to bear, where seeing these labels stuck on furniture and walls was overwhelmingly humiliating for a man who had always been so proud.

"...seeing these labels stuck on furniture and walls was overwhelmingly humiliating for a man who had always been so proud." Image: Supplied

You would get upset and angry, you would comment: “Why don’t they just shoot me?”

“I should just go and shoot myself.”

These words, as a teenager were hard to hear. For my mum as an adult, but still your child, they were even harder to hear.

There were times that these bursts of anger were intense. Once, in utter frustration, you tried to kick me. The next day you didn’t remember doing this at all.

Some family members and friends chose to stay away, it was too hard for them they said, it wasn’t safe, it is too upsetting. They took these episodes of frustration, of anger personally and couldn’t see that you were still there.

But Grandpa, I want you to know that I know you were still there.

I remember your hugs, your stories about growing up in England, the war and your time on the farm. I remember you always sneaking me offerings of Castlemaine Rock lollies when mum was busy, you were cheeky and kind.

Grandpa, I want you to know that there were always these sparks of the real man that appeared between the clouds of fog that covered your mind and even though the fog got thicker and thicker as the years went by, slowly taking you away from us, it's those sparks that I remember the most, the real you.

Shona Hendley, ‘Mother of Cats, Goats and Humans’ is a freelance writer from Victoria. An ex secondary school teacher, Shona has a strong interest in education.

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