Hesitant

 

Last night we sat and watched the Magpies in my friends backyard. They've gotten to know us and come right up to our feet to feed on the seed we scatter for them. Magpies have good facial recall and long memories, which is a contrast to my friends slowly declining memory. I find it interesting that the magpies presence is increasing during this time.

My friends facial recognition still appears to be ok with people he sees frequently. He's starting to recognise his friends from the day centre when he's with them. If I talk about them he has no clue who they are but as soon as he sees them he knows the face, he may not remember exactly who they are but the face is familiar. 

A week ago we had our quarterly appointment with the Geriatrician. After many questions regarding my friends progress she turned to me and said that I needed to take a break from my carer responsibilities. She told me that the #1 reason that people end up in aged care is carer burnout. She turned to my friend and said that sometime in the near future I needed to have a holiday away from him. He agreed but I don't believe he fully understands what it means.

I'm hesitant to take a break, the thought terrifies me. At this moment in time it's actually impossible, there's no one to step in. Maybe later his family will be able to help. But always in the back of my mind is the thought that if I'm not present everyday he may forget me. It's probably irrational, we've been a constant in each others lives for 29 years, but the fear is still there. 

There's also another side to this, I don't want to miss a second of all the happy moments. We have a lot of laughs together, his dry sense of humour matches mine. I want to stay present because I know all to well one day I'll be left with only my memories. The last few years I spent with my Dad and Charlie taught me that I have to savour the moments. 

I understand what she is saying about carer burnout, I've been at the brink a few times in the last 6 months, but with no other options I call on my inner resilience and keep putting one foot in front of the other. I have no choice but to be a superwoman and I want to be superwoman, I don't want to miss a day. 

I'll think about what she said, but for now I remain hesitant. 

Lib x

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

Wiping the Slate

 Originally this post was the introduction to 'Apron Strings" on Feb 1st. But I've since realised it is very much a separate post and requires it's own space.

Inevitably at some point dementia wipes the slate clean, sometimes for a few minutes other times longer.  All of this is the precursor to the dreaded day that memory is  gone for good.

I'd experienced it once before a few months ago when I called in at lunchtime to tell my friend the cleaner was coming. He was terse with me, like I stood before him accused of a wrong doing that neither of us knew was about. I asked him what I'd done wrong and he said he couldn't say anything until the lawyers got there! I replied that I was just there to tell him about the cleaner and left. I left in a flood of tears that he never saw, I was worried that he'd forgotten our friendship and was now seeing me as the  devil! It was a shock and a heartbreak combined. The grief of losing my Dad and my dog had left me less resilient. 

But I'd forgotten that it passes, I just had to wait for the switch to flip and all would be ok. And it was, I found that out quickly when the cleaner couldn’t work out how to get in and he wasn't answering her. She made me go back there, because she was from a care agency legally, she couldn’t  leave until she knew he was safe. I gingerly opened the back door and called out a few times, and he appeared and spoke to me like there was never an issue. I left and cried in relief. 

Today I had a phone call where it was clear that the slate hadn't just been wiped, it was momentarily obliterated. I'd been there earlier in the day, I'd taken him a coffee and we'd sat outside talking for a while. A few hours later I get a call all very formal announcing his full name and that he'd been in the house, which he's told is his, for months and no one had been near him. He has no money and he's not even receiving any bills. I said I'd been with him earlier, he replied "well I didn't see you". I said I brought you a cup of coffee. He moved on to say he's not having a go at me. I was in the next town, so I tell him I'm heading home soon and I'll come past and see him and we'll talk. He's happy with that.

Less than 2 minutes later the phone rings again and we have the same conversation. Except this time new information has been added to the situation he's experiencing. I tell him that I'll be there soon and will look into all of it for him. Then we chat about the birds chirping in the back ground. 

By the time I got to his house all was well again. I stayed for a while and got him dinner. He was as cheery as he was when I left him in earlier in the day. 

Moments like these are stressful, particularly when I'm a distance away. My immediate reaction is to fix it. But often with dementia you have to allow time for these moments to fix themselves.

Brave

 

Tonight, Charlie has been in my thoughts, she is most of the time. But some moments the grief hits harder and I'm transported back to the days around her passing. 

A couple of days after we gave Charlie her wings I had to go back to work. One of my colleagues walked in, gave me a hug and said that I did a brave thing...

I've thought about this a few times and tonight I'm pondering the thought that although letting go was brave, opening myself up to love in the first place was also brave. 

Which leads me to think that we often don't realise how brave we all truly are. So many things we do in life are brave. It's the moment that you step outside of your comfort zone and do something that has some level of risk attached. When the heart is involved, grief is always the risk or the inevitable end point. The two are inextricably linked. 

There is no measure of brave as much as there is no real measure of a lot of things that are unique to an individual based on their own life experience. Which leads me back to my earlier thought that we often don't realise how brave we are. And if we could recognise our own bravery, we could be brave again. 

A couple of years ago I had to make some tough decisions that had the potential to significantly affect my life as I knew it. At the end when I looked back, I realised that I could actually do hard things. It's easy to forget that sometimes but it appears that Charlie is giving me a gentle reminder of that tonight.

Charlie taught me a lot in her 16 years, and it appears she still is.

Lib x

Apron Strings

Tonight I feel like a nervous mum on the night before her child’s first day of school. I haven’t had children so I can only imagine that this is what it feels like. Tomorrow my friend goes for his first day at a Day Centre. It’s a day centre for Seniors organised by the care agency that provides his home support.

His daughter and I took him there for a visit last week and he melted into it. He was again amongst his peers chatting and drinking coffee. This week he’ll be there for 4hrs; he’ll be picked up and dropped off by their bus. I’m nervous about the drop off at the end, I won’t be around, my fears are probably unfounded so I will just need to have a little faith.

I will be there to wave goodbye and send him on his way. And I’ll get to spend some quality time with his doggie. I could leave her on her own, but I quite enjoy the idea of taking her for a walk or bringing her to my house for a bit. At some point she’ll need to start getting used to it being me and her. When the time comes for him to be in full time care, she’ll live with me.

I feel like I'm cutting the apron strings, giving him back a little of much needed independence. It's important to facilitate that while we can. I'm responsible for him and it's a weight that is at times heavy. I need to let go a little sometimes and let others carry it for a short while. That's what the day centre is there for, it's a little respite for me for a few hours.

I'm beginning to understand carer stress and why when we went to the geriatrician and when we met with the care agency nurse that I was handed a survey about my stress levels on both occasions. I dare say that after the last few weeks my score would be a little higher than before.

I'm not sure that I'm meant to be carrying so much responsibility, but I am and it's because this particular human being is so damn important to me. And we step up for our friends when they need us.

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. 

Walking Thru The Tunnel

 She's gone.... Charlie, my girl who I often described as 'natures little wonder on 4 legs' has earned her wings. Outside in the sunshine on my parents back lawn we said goodbye. She turned 16 in August and a little over 2 weeks ago on the 18th October I let her go. My dear sweet girl had begun to struggle, her arthritis left her unable to get up on her own and there was an issue with her bladder. She was everything to me and I didn't want her to suffer.

Just 8 weeks before this my dear Dad passed away and I imagined him there waiting for her. They had a special relationship, she was always in awe of him. When ever she saw him her tail and bottom would wag and she'd wimper with glee. 

I recently heard someone say 'grief is a tunnel' and I find myself ever so slowly moving thru it. I've known grief before and tangled up with it there's always been the loss of hopes and dreams. I find myself in an unusual space which defies the many conversations on grief that I've come across that include the loss of hopes and dreams. Both my Dad and my Charlie girl had very long lives, my Dad had just turned 96. They both run the full marathon there were no hopes and dreams for the future, we'd been in bonus days with both of them for quiet a while. I'm at peace with their passing.

My grief is quite simply the loss of them no longer being here. I miss them, that's all. I just miss them, I miss what they each brought to my life on a daily basis. I miss the smiles, the hugs, the cuddles, Charlie snoring, dad's dry sense of humour.......I miss their earthly energy and the space that they filled up.

I can still however dissolve into tears at any moment. The thought that I wont see them again in their earthly forms shatters me. The space they each left is huge. I've developed a coping strategy for this, which I learnt from my doggie loves and it's the reason why they are so forgiving. Dogs lack the part of the brain that allows them to attach a story to an event. So when I apply this I can think or say they've passed away and as long as I don't attach the story that makes me sad I can get through. Having said that when I'm home alone or in the car I allow myself to attach the story so that I can allow my grief.

My house is so quiet without Charlie, I keep catching myself waiting to hear her make a noise. The last few months she'd been spending a lot of time in my bedroom, she'd always slept in there and when she could still jump would wait on the bed for me most of the day. But as her arthritis progressed and she could no longer jump I made her a bed out of stacked doonas beside my bed and from there she would summon me if she wanted food or wanted help to get up and go outside. It was from there I would hear her bark as I came in the door from work. Now there's only silence. 

On my parents back lawn as I spent my last sweet moments with her I looked at the sky. On the tail end of a long cloud there was a shape that resembled a dog frolicking in the sky, a few moments later Charlies vet walked out the back door and it was time to start saying my final goodbye. My girl went quickly she was ready and ... she snored....it was like she was saying "I'm just going to sleep mum" 

Her doonas are folded up under the window, one of her blankets, her pillow and her favourite toys are on top. There's also the envelope that holds a card from her vet and some paw prints and a lock of her hair. And in the back corner is the bag from the crematorium that inside has the wooden box containing her ashes. I'm not ready to put her bed completely away. It will stay there until I can work it all out..... I'm only at the start of the tunnel.

edit

I woke up this morning after writing this post late last night and realised there was one thing still to say..... 

I have so much gratitude theirs,  were 2 lives well lived and well loved. I'm grateful they were both here as long as they were. For the last year I often used to thank Charlie for choosing to be with me another day. It was a joy to be with them for as long as I was, so many years of love ❤️ 

I haven’t spoken much about Dad here or on my social media, he was a very private person. I feel like I need to honour that for now xxx

My Beautiful World

I titled this post “My Beautiful World” not because my world is perfect, in fact it’s far from it. My life is as full of as many disappointments and cracks in the pavement as the next person and there are many missing pieces. But lately I’ve been focusing on the things that make me joyful and realizing that the odd little bubble I live in isn’t so bad after all.

My world like yours is a work in progress, it’s me trying to find all the pieces that fit and letting go of the ones that choose not to fit. I could be sad about the ones that don't fit, and I have been sad, but I’ve come to realize that their absence creates space for other things that I love to expand.

I'm working on filling my world with the things that make me happy. My 'happiest places' are my doggie Miss Charlie, being creative and my obsession with organic gardening and healthy eating.

I’ve learnt that this life is about surrounding yourself with the people who let you shine the brightest and allow you to be the best person you can be and letting go of the people who dampen your flame and squash your spirit.

Everyday I’m learning to be grateful and to be joyful for the life that I have. So much of our lives is a choice and sometimes you just have to step up to the plate and go for it. I'm learning to step up, taking small steps each day to get to the place where I want to be. I'm working towards being bold enough to take the giant steps, to celebrate life by being the loudest drum and dancing with hands in the air!
  
I'm forever creating my beautiful world

in my garden

I've been spending a lot of time in my little vegie/herb patch lately. It's kind of my respite from the world, when I'm out there it's just me and the greenery. 

A few weeks back I sowed some lettuce mix seeds into a take away container. 

Yesterday it was time to plant them out into pots and see which ones would survive.

It was also time to transfer the Mizuna that I had been growing soiless on my window sill into some soil. 

With a bit of love soon I'll have lots more tasty treats for my salad bowl.

Gardens are a lot like people and relationships, with a bit of love and some nuture they flourish. It's not a new thought or concept but it's good to be reminded.....

pinterest finds

I'm a bit addicted to Pinterest at the moment! There's so much good stuff to be found on there. This is one of my favourite finds from the last week.