Life this year has taken a few twists and turns... and the outcome of it is that I am now a dementia carer for a very dear elderly friend. I am witnessing, first hand, age and dementia gradually stripping the layers of him away. My mum keeps telling me you lose them twice with dementia, the first as the layers are stripped away and then again when they earn their wings. And I now understand why they call it the long goodbye.
Wind back 28 years and you'll find me walking home from the supermarket in a city on the other side of the country from where I was born. Enter a handsome older man with 2 dogs who calls out to say hello from a driveway across from where I was living. The dogs crossed the road to say hello and the rest is history. We dated for a brief while, he was the older man in my life, and then we worked out that we'd missed the mark we'd been put together to be friends.
All these years later we're still best friends we've supported and counselled each other thru broken relationships and challenges, shared houses and looked after each others dogs. But now I find myself watching dementia gradually change the man I once knew. He was once my protector and now he is the protected.
At first it was just his short term memory that failed and then 18 months ago he started getting lost and strange stories started entering our conversations. I call them 'the strange man in the attic stories' . That was a phrase I used to describe my grandmothers dementia. She would often tell us there was a strange man in the attic but she and pop lived in a single level dwelling that didn't have an attic. At the start of 2022 I realised his ability to 'join the dots' was declining.
And he started getting lost, the first time in January 2022 he drove to a town over an hour away and fuelled his car at the petrol station only to find he couldn't pay as he'd picked up an old empty wallet on his way out the door. He called me and I was able to arrange to pay the next day but I then had to navigate him home as he was also lost on a road he's travelled many times before. Fortunately we had each other on 'find my friends' on our iPhones so I could see where he was and after an anxious hour I watched him get near to his home only to take a wrong turn and get lost a couple of kilometres away. I navigated him again and at 2 am I drove to him to guide him the last 20m to his driveway, he was on his street but had no idea which house he lived in. There have been several other occasions since. On Christmas Eve 2022 after getting lost again he gave me his car keys. He hasn't driven since. Now he just gets lost on foot!
We received the official diagnosis in April this year, dementia with significant cognitive decline. This last week I was appointed as his guardian and power of attorney.
Watching someone you love descend into dementia is a strange journey. He has good days and bad days and on the bad days I miss the friend who I could talk to about anything. He was my rock and in moments I know my rock has gone. Even on good days I'm unsure as to how much he'll remember when he sees me next. On the flip side of that if he's having a bad day or struggling with a delusion I know it's only a matter of hours before that passes and we're back into balance. But I'm grieving the loss of an old and dear friend while he's still here and part of my life. It's a weird situation
And the hardest part is I know how this will end if it plays full out.
But for now I just have to keep him healthy, happy and safe. My life where he is concerned is a continual pivot, my sister described it tonight as it being like walking on ice in the wrong shoes. I can control some of the factors but not all of them. And there's always the well meaning old friend, who doesn't know or hasn't worked it out, who could unknowingly put my friend in danger. Today I caught one old friend offering to charge the battery on one of my friends cars for him. He still has the keys for that particular car and I hadn't worried about it because I knew the battery was dead and I don't want to take all is keys... not yet... too much has already been taken from him.
Little by little all the pieces of him will be stripped away, we need to try to hold onto as much as we can for as long as we can.
It's all been a bit of a learning curve working out what to say and what not to say. Not to challenge thoughts as they come up. It always passes, some reoccur and you get more creative with each time. It's never no, rather I'll look into it or we'll have to work that out. I learn as I go and hopefully no longterm damage is done.
I'm in the process of organising help, we've been approved for home care. It's just a matter of getting the right services in place. So for now I'll continue to pivot and hopefully at some point I'll feel like I'm wearing the right shoes for the ice!
