Alzheimer’s turns your loved ones into ghosts
ONLY recently I was with one of my best friends when she got the call to say her mother had died. It wasn’t entirely unexpected — she was 97, after all — but for me it brought up a well of emotions as I’d lost my father just a few months prior.
Nothing can prepare you for the passing of a parent but, for us, there was an evil commonality that made death a blessed relief, as hard as it is to admit.
Alzheimer’s disease had stolen our parents’ minds long before death finally took their ravaged bodies. The person we farewelled was barely a ghost of the loved one we once knew so well.
My father, Lawrence Fisher, was the life of the party, always ready to joke and tease … or torment those whose wits couldn’t match his own.
He was funny, sharp as a whip and had an opinion on everything. He could build anything and loved to keep himself busy with one project or another. Then the changes started.
Although he’d been repeating stories for a couple of years, it wasn’t until I saw him with a to-do list that I admitted for the first time that something was going on. My dad simply didn’t make lists.
Then he stopped talking. His doctor thought he was depressed after selling his business. Put simply, though, he’d lost his words. His ability to identify objects would disappear next and before long he couldn’t tell the difference between a cup and a plate, making pouring coffee a nowdangerous task.
It was a slow-moving beast initially — things weren’t right for at least four years — but then changes happened nearly every day.
It’s important to diagnose Alzheimer’s early so plans and systems can be put in place before the onslaught begins. An early diagnosis means everyone can do what they can to prepare mentally. If you’re unprepared, like we were, the impact is traumatic.
Alzheimer’s can also destroy your body. Forgetting how to walk, chew, toilet and feel pain is not uncommon. Dad went downhill fast and was dead within a year of his diagnosis. Some people can languish for years, often in poor health, and I give thanks every day that it didn’t happen to my dad.
The first — and lingering — emo- tion I felt when we got the call was that guilt-inducing relief. Relief for my dad who would have loathed what he’d become. Relief for my stepmother Glenda, who, as his carer, had been living in her own version of hell. Relief for me who couldn’t bear to see the decline. I’d avoid going home so I didn’t have to. Grief only came later.
Dad would have hated being infirm. Unable to walk. Unable to think. He would have been embarrassed and mortified. He would have wanted a pillow over his face.
My dad was a fighter and he never lost his sense of humour, even at the end, but no one wants to forget who they are while confined to a bed and surrounded by “strangers”.
When you care for someone with Alzheimer’s, you watch them wither and die in slow motion. You witness their decline in all its forms and as they disappear so does your relationship with them.
It’s like living with a ghost. A ghost who doesn’t know who you are or why you are important to them.
No one warns you about the psychological effects this insidious disease — which is just one type of dementia — has on carers. No one warns you that month upon month, year upon year, the carers are in a state of high anxiety, never knowing what to expect. Not only are you dealing with incontinence and vomit and obsessions and sleeplessness and wandering and questions, you’re dealing with a persistent sense of loss. Of abandonment. You often wonder when it will end. You want it to end.
After Dad died, a friend and fellow only child who had recently lost one of his two demented parents asked about my health. My health was terrible.
We both compared our symptoms of adrenal fatigue and although his bones didn’t ache like mine — it took months before I would wake up without flu-like symptoms — he trumped me with his stomach ulcer.
We were both exhausted. The stress hormone cortisol is handy sometimes, but when it floods your body for months on end it causes damage.
We decide we should write a book together. All we’ve got so far is the title … Death Before Death. It speaks volumes.
Losing a parent is a profoundly disturbing experience for anyone. Losing a parent while they are still alive leaves a wound so raw that it seems only death can ease the pain. But it doesn’t. You feel relief but that doesn’t last.
The grief, pain and loss, when it comes, is slow-release. After all, you’ve spent years dealing with the anger, sadness, guilt and self-pity.
The finality of death takes time to hit home. When it does, you find yourself sitting next to your friend when her mother dies.
And you realise your tears are for yourself.