Inside the mind of Alzheimer’s

Over the past few weeks podcasts have become my new obsession. I’ll admit it started because I was looking for something to listen to in-between Serial episodes (If you don’t know what I’m talking about stop reading and start binge listening to it immediately!).

One of the podcasts I stumble upon is Strangers. Though it’s not my favourite, I quite enjoy it and the latest episode (called Mind Shaft) blew me away. The host, Lea Thau, interviews Greg O’Brien, an investigative reporter diagnosed with early-onset Alzheimer’s.

Greg shares what’s it like to experience this horrible disease from the inside. He describes Alzheimer’s as dark and scary – ‘a mind that’s 5 miles deep’.

OnPlutoHe tells his story because ‘if I’m not pushing forward … I’m falling backwards’. He’s eloquent and charming and tells a fascinating story. But it’s also incredibly sad, because he knows how it ends.

Greg has also written a book about his experience called On Pluto: Inside the Mind of Alzheimer’s. I’ve just bought it and will post more about it when I’ve read it.

Listen to the podcast here. Buy Greg’s book here.

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Do not resuscitate

It’s one of those things you see in TV shows all the time. I’ve lost counts of the number of times a story on Grey’s Anatomy has revolved around a DNR (do not resuscitate) signed by patient, then disputed by a loved one. How about when Issy was unconscious after surgery on her brain. Alex, her new husband pleads for the doctors to do something. Insert suspenseful 2 minutes before the chief exclaims “screw the DNR” and they save her life.

It makes for exciting TV and until this morning meant little more than that to me personally. But this morning my mum signed a DNR order for my Grandma. Strangely since then all I can think about is every TV show I’ve seen when a doctor ignores a DNR and the patient miraculously survives.

This is a little different though. Firstly you may wonder why my mum signed it and not my Grandma herself. Grandma lives in the dementia ward of a nursing home. She has Alzheimer’s disease. Mum has power of attorney so this is just one among many tough decisions she has to make for her mum.

I think she’s doing the right thing. If something happens and Grandma is in a situation that requires resuscitating, even if doctors successfully revive her, she’s still going to have Alzheimer’s. She still won’t know who any of us are. She still won’t remember how to talk. She’ll still need someone to feed her. And bath her. They can revive her a hundred times over but she’s not Grandma anymore and she won’t ever be again. She won’t ever have it good again in this life. But I know where she’s going when she dies and she will have it great then!

I love her and I miss her so much. There’s never a day I don’t pray for her. Everyday the same prayer. Jesus, please make today the day you take her home.

Want to know where you’re going when you die? Find out here.

My Grandma’s 9 lives

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I swear I have the most resilient Grandmother who ever lived.

She is well into her 80’s and quite unwell these days.

When she was 55 she had triple by-pass surgery. About 10 years after that it became evident that her memory loss was more than old age. Alzheimer’s. Now is lives in the dementia ward at a nursing home in Penrith. She is a wanderer and this is a safe place for her to be. Her last nursing home was not as safe. I remember getting a phone call from Mum one day when I was at work saying that Grandma was missing. She had wandered right out the front door and to who knows where. It was hours before she found, bruised and looking very worse for wear, 8kms away from the nursing home.

In the last 10 years, as well as Alzheimer’s she has had falls, illness, been missing, lost her husband of 50 years, and each and every time we think its all going to over she bounces back with incredible strength. And the last week has been no exception.

She has been in hospital with pneumonia and a staph infection. And yet a mere 4 days after going into hospital, she is back out and home at the nursing home. She isn’t walking particularly well, but after 4 days in bed its possible that her brain has forgotten how. On the other hand, based on past experience she’ll be fine again in a few days.

If I was to be completely honest with you I would tell you that I often wonder if the resilience of her body is a good thing or not. Her mind is failing her. She has only 4 grandchildren – me and my 3 sisters. We used to spend every school holidays with her and my grandfather. They were a massive part of our lives. And now she doesn’t know who we are. She floats in and out of recognising my mum (her daughter) and spends most days surrounded by nurses and other patients she doesn’t remember from day to day.

My grandparents served God their whole lives. I don’t know if she is aware of who Jesus is anymore – but I trust that he still keeps her and that when she dies she will go home – to be with her saviour with a mind that won’t fail her anymore.

And so I wonder if its a good thing….. and if its ok for me to wonder…