The Horror of Alzheimer’s

You can always make a difference to someone.

You can always brighten someone’s day.

You can always make someone feel worthwhile.

You can always make someone feel cherished

…You just can’t always remember that if you have Alzheimer’s..

I truly didn’t know just how awful Alzheimer’s/Dementia is until my mum had it. I didn’t understand how much it took away and the absolute horror of how it ends.

Have you seen Benjamin Button? Godawful film about a guy who’s born old and gradually gets younger and younger until he’s a baby and just disappears.

Alzheimer’s is kind of like that in some ways. The tantrums. The not eating foods they liked yesterday. The not eating foods at all. The diapers. The loss of speech.. that one hurts so much. When you lose communication and you have this awful fear they’re still in there and can’t get out.

I was in hospital a few years ago and they miscalculated the dose of morphine to give me. It was very leary watching them trying to bring my BP up then get it down and deal with me vomiting.

I was inside, watching them, knowing what was going on – but I was stuck behind a big glass wall. I couldn’t work out how to speak, I was terrified because I couldn’t remember how to breathe. I was afraid of drowning in vomit because I couldn’t work out how to throw up. I couldn’t even work out how to scratch my nose which was itching horribly.

It was a terrible, awful nightmare. I will never allow medics to give me morphine again. I make myself extremely clear in that point to the extreme of warning them I will sue if I come around from anaesthesia with a morphine drip stuck in my arm!

That’s exactly how my fear of Alzheimer’s is. That somehow, the person inside is still there. Trapped. Not able to escape.

The end for my mum seemed brutal to me. She’d stopped communicating verbally a couple of years beforehand but she’d still smile at everyone. She still loved her food. Even as she stopped with solids and was on mushy stuff and “milkshakes”. She’d sit there, opening her mouth for the next spoonful like a baby. It was cute but awful. It’s funny when it’s a baby, it’s heartbreaking when it’s the person you always saw as the ultimate authority on everything.

Then in January 2 years ago she stopped smiling. That was the hardest bit for my poor dad. She got sick in February and everyone was preparing to let her go but she rallied. They reintroduced the IV fluids and a feeding tube but she was never “awake“ again. After a couple of days Dad was accepting it was “time” so the feeding tube was removed. Eventually her kidneys failed and they took down the IV fluids but she hung on and on and eventually died on March 11th.

She was a long time without nutrition and it haunts me that she may have died hungry or thirsty. Nurses and doctors have assured me this isn’t so but my morphine experiences have left me with so much doubt about being inside. When it was me, everyone was talking over me as though I wasn’t there. No one spoke to me, no one explained what was going on. I was just a lump on a stretcher. A scared lump. I understand it was an emergency situation but that made it even more terrifying.

It’s a cruel, evil disease. People aren’t “away with the fairies” or a bit doolally. They’re regressing, a little more each day. It’s a horrible degenerative disease. There are meds that help slow the progression of it but my mum wouldn’t go to the doctor. She refused point blank. More than anything I wish she had gone. I think she knew what it was but wouldn’t accept it. Both her parents had Alzheimer’s/dementia and I think she wouldn’t acknowledge she could too.

If you feel you or a parent or partner are losing cognitive abilities PLEASE go to a doctor. There’s so much they can do to delay the progression of the disease. So much time to have quality memories from. I have faith they will find a “cure” sooner rather than later. There’s been so many promising trials lately, it gives me hope we might conquer it so at least let’s encourage everyone, ourselves included to halt the progression and buy time.