busy

Sorry, it's been a while since I last wrote. It's been kind of busy here..... The days are all rolling into each other. My friends condition is slowly progressing and all my time and effort is directed into keeping him healthy, happy and safe. We made it through spring but it was nearly the end of my sanity, the layer of protection of inclement weather keeping him home was lifted and he became very mobile. When the sun is out he likes to walk. 

Walking is fine when his favourite cafe on the main street of our town is open. It's fine when the town is not over run with tourists during school holidays and there's not an event in that area. But when summer hit we we're barrelling towards moments where I would want to hold my breath.

But it was all ok, initially there was a lot of walking but as the days got warmer he began to stick closer to home. His confusion increased and I'm left wondering if this is what kept him home or if he unconsciously realised it was too hot to walk his precious canine companion. So instead of being the month that I dreaded January actually offered some respite and it continued all the way through to mid April. Now we're back to milder days and he has found his feet again and I find myself praying for rain. 

For a while now I've noted  that there is a time limit to the amount of time he can tolerate being out in the world. It's about 2 hours after that as his brain tires, he gets cranky and confused. He doesn't process the world as he used to and remembering faces and how he knows people as well as making sense of the world around him is tiring. I liken it to starting a new job with so many new things to learn it's tiring even if you are in the same field as before. Remembering names, places procedures can leave you brain tired and ready for bed as soon as your dinner plate hits the sink. 

With the increase in care required it's left little time for me. I've taken a back seat in my own life. I long for a day to myself, a day where I don't have to leave the house. But on the flip side of that it will mean that I've put someone else in the drivers seat and that will be a shift to residential care for my friend. 

The wheels are already in motion for this move, we're slowly edging to the point where staying at home will no longer be safe for my friend.....

Photo by Jeremy Thomas on Unsplash

The Era of Walking and Shifting Time

 My friend has gotten a lot more active of late. We live in a regional town and his house is about 20 mins walk from the main street and his favourite cafe. We now have a GPS watch which is my back up for when his phone goes flat or he forgets to put his phone in his pocket. 

His favourite Cafe is owned by an Italian family and in the evenings it is an Italian Restaurant. They love him and are so kind to him when he's there which is why he keeps going back, sometimes 3 times in one day. His short-term memory is poor and he'll often forget that he was there an hour earlier. But the beauty of a small town is that he is for the most part in a protective bubble and 5 days a week I'm never too far away. 

There's also another attraction to this business, one of his current stories is that I own the cafe and he's coming to see me. In reality I work at a resort 1 kilometre from the cafe but no amount of reminding him where I work has stuck.

Being active and walking is fabulous for his brain and his mental health. But I will admit when the increased activity first started a couple of months ago it stressed me out. I'm learning to loosen the reigns and let things flow. I'm never far away if he gets a bit lost and I keep an eye on where he is via his phone and the watch. I know the trigger points of where he starts to get lost, and I phone him as soon as I realise he's at that point. 

One day when the era of walking kicked off, I was half an hour away and noticed he'd walked into town, I called him and he'd said he was going home. I checked in a few times and after noticing he'd taken a wrong turn out of the dog park, on the way home, I proceeded to spend 20 mins on the phone with him, talking him home. 

We're working on keeping him independent for as long as we can and as long as he doesn't go looking for me in the middle of the night, we're ok.

Which leads me to time, he has no concept of it. This evening after I left work, I picked him up from one of his walks. I had some jobs to do at his house and decided to stay until it got dark as there was less chance of him going for his 3rd walk of the day if the sun was down. 

I looked out the window and commented that the sun was going down, his response was " it’s a bit unnatural, isn’t it?" I questioned what he meant, and he asked me what the time was "it's evening 5.30pm. His response " oh I thought it was mid-morning" 

20 mins later he said "I might go for a walk" I replied "no it's getting late" he responded " it's only morning isn't it? " I responded to him and said he was shifting time!

Needless to say I held my breath as I left and I've been checking that he's phone and watch are both saying he's home ever since.

Winter is finally descending on us, and his wings will be clipped for a while. But that then creates the challenge of how to keep his brain active and stop him going stir crazy through the winter months. I have some plans in place and we'll pivot as we need to.

Lib x

Photo by Jérémie Crausaz on Unsplash

Catharsis

There’s been so much happening in the last year writing has become my therapy, a catharsis of sorts. I write through my grief, and anxiety, and it helps. It feels like someone out there is listening as the words are no longer stuck within me. As I write I sometimes find some magic or a little meaning in what I’m experiencing. Those pearls of wisdom that life sometimes embeds in a challenge. I need an anchor to get through and the words I write are my tether.

 

Maybe putting my experiences out into the world will help someone else on a similar path feel less alone. I’m not ready to write too much about my Dad or my Charlie girl yet. That’s too raw for now, I can skim the details but I’m not sure that I can fully express my grief of their loss. But with my friend it’s the slow burn of loss and anticipatory grief. I feel like I have so many different layers of grief happening all at the one time. Sometimes they’re smooshed into one at other times it feels defined. The night I drove home after disposing of the bird it was very defined and I literally felt like I couldn’t breathe.

 

I can easily type those words but to say them out loud, I would feel like a fraud, like I was making a mountain out of a mole hill and that no one would understand that in that moment I felt the gravity of what was already lost.

 

Even reading back what I've written above I feel like a fraud, but I know this will pass. When I told my mum the stories of recent events she asked if I was writing it down. I said I was and then she said I could write a book. Well I’ve thought of that and I maybe my ramblings of my experiences as my friends dementia progresses will help someone else. Maybe someone will read my blog and relate the same way I felt seen when I read Patti Davis’ book. I said to mum that I was writing through my stress. But what I’m actually doing is writing through my grief. At some point all I will have are these stories, that are both funny and tragic at the same time.

I tend to write on the fly, if I pour over what I write too much hours will pass. I put perfectionism on the back burner in favour of getting things out of my head and onto the page. What you read here is raw, when I have time I work on what I've written here to refine my thoughts to something that maybe one day will be pieced together into a book. My journey with my friend although not unique is also not very common when you start reading dementia books. They seem to be written either from the perspective of a family member or of a professional care giver, I'm neither. I'm simply the best friend who stepped in to make sure her best mate was ok.

There's a lot that I've written in recent weeks that is yet to see the light of day. May be it will all appear in my book one day, or maybe it will end up being just for me. Where ever it lands it will have helped me purge my thoughts and get me ready for the next day in this journey.

Photo by Nick Morrison on Unsplash

Looking for inspiration

I haven't had a lot to say lately so I thought would take the time to introduce you to the new blog of my dear friend Trudy. She has an amazing insights into inner peace and joy. You can find her wisdom at Wisteria Wellbeing.

Photo by Oliver Berghold via Unsplash

  (I found this photo on Unsplash a website that offers free high resolution stock photos.)


Libby :)