Letting go of the 'By Line'

The 'By Line' in a newspaper or magazine is the first line under the title where the writer is credited. In life the 'by line' is the internal notation of a gift, an act of kindness, an achievement, anything in life where it is recalled that you or someone else did something. 

A couple of days ago I realised that dementia was asking me to let go one of my own 'by lines'. You may recall from my last post that I had recently hung 2 bird feeders in my friends tree and that a few days later he'd forgotten it was me who did it. It was during bird hour when he mentioned that he loved the plates hanging from the tree and perhaps we should buy the lady who hung them flowers and chocolates to say thank you. I mentioned again it was me but he could see no correlation between the image in his head and me sitting in front of him. It was at that moment that I realised that I had to let go of my 'by line' and let him give credit to the strange woman who entered the yard, hung them and then disappeared. As long as the woman is not perceived as a threat or scary it's ok for him to believe that it was someone else who did it. 

People with Dementia live in a kind of parallel universe where things can be very different to our reality. By challenging their version of events it can be very scary to them, we would feel much the same if our interpretation of reality was challenged and we were being told we had imagined something knowing that it was real. Their reality is as real to them as ours is to us. 

In Patti Davis' book 'Floating in the Deepend' she quotes a from  'A Course in Miracles' : "Do you want to be right or have peace" 

You can be right and deal with the upset it causes when you challenge their reality or you can let go of the need to correct and have peace. After all the peace and happiness of my friend is far more important than my need to have the credit for doing something.

The first time I'd encountered this was 18 months ago after I took control of his diet. It was pre diagnosis and I was watching him go into decline consuming highly processed foods full of additives. At that point we weren't far into the journey and I believed I could reverse whatever it was with diet. I started doing his shopping and ordered healthy meals from a subscription service. We got him a new fridge and a microwave. I'd also spent a little time explaining the change in diet and how processed meats in particular salami were unhealthy for his brain. A couple of days later he was a bit angry and started talking about the woman who'd been coming in to prepare his meals, she'd been doing it for years, she presses buttons and makes the food. He was angry because she'd told him that he couldn't have salami anymore. I tried to tell him it was me getting the food and that salami was a "sometimes" food not never again. A couple of days in I had to let it go and change the subject. And then it passed. The change in diet did help, it reversed and slowed some of the progress of what we now know is alzheimers. 

So the new normal for me now is to listen to his stories and not dispute them, in the books I've been the reading they say to go with the flow and even get a little creative. As long as they are happy and feel safe it's all fine. And if I listen closely enough and ask questions there may be a good book in the making.

I have no doubt that there will be many more "by lines" that I will need to let go of. But I feel like this whole experience is giving me the gift of presence and also teaching me that credit is not always required, an act of kindness does not require notoriety no matter how small the audience. And that my sense of self does not depend on recognition or gratification. Not that it ever outwardly did, I've always been a bit more 'secret squirrel' But we do all at some level have a desire for recognition. I've spoken before how dementia peels back the layers of the person afflicted with it and I'm beginning to feel that it does the same for the carer. It teaches us what is important and discards the things that may have made us felt good but were never the true path to happiness.

Birds and Things

Most afternoons we sit on his back porch watching the birds in the trees along his fence. It's summer here and as the day cools the little birds flock to his trees to catch some bugs and play for a while. It's the same time everyday, generally between 6 and 6.30pm, that they begin to appear. Blue Wrens, Yellow Wing Honey Eaters, Green Honey Eaters, Silver Eyes, Swallows and Willy Wag Tails, all congregate like kids in a multicultural school yard. Occasionally the big kids, the Green Parrots or  Pink and Grey Galahs join them. They sit and joyfully chirp in a leafless Buddlea tree that is slowly coming back to life. We watch them dart around and catch bugs on the wing. Bird hour is an event and he's always lined up waiting for it

The conversation with my friend is always similar, always on repeat over the course of the 45 mins that we spectate the wonders of nature

" wow there are so many birds"

" did you see that one" 

" I think that was a Hawk"

" I'm glad we kept that tree. We can't ever cut it down" 

I wonder what he thinks about on the evenings I'm unable to join him.

Recently there's a new comment.... A week ago I hung 2 bird feeders from the tree, one for water the other for seed. The birds are slowly becoming accustomed to them. But my friend has forgotten who hung them other than it was a young lady who did it. I tell him it was me but his brain is no longer connecting the images. 

I've started taking photos to capture the moments for later when it will be something to talk about, a story to tell him even if he doesn't remember. 

I'm learning to slow down and stop and share the moments with him. They will be gone all too soon. 

The Pivot

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!

photo by Intricate Explorer on Unsplash