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

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.

Taxidermy

 My friend called me at 7pm, distraught, a pigeon had been hit by a car and killed. He was wondering if we could send it to a person who brings them kind of back to life. A taxidermist? Yes that's the word.

I didn't have my creative brain on as it was the very last conversation I was ever expecting to have. I said we didn’t know a taxidermist and I suggested that he leave it beside the road for the shire to collect in the morning. He was worrying a cat would get it. 

I asked him where it was and he said in the kitchen and then said he'd talk to me later and hung up. 

I kicked myself a little for once again being a virgo and trying to logic the situation when creativity was required. 

It was one of those moments where I was confronted with the fact that I can't avoid the situation that I really don't want to be dealing with. But there's no one else, I have to step up and be the grown up. I also have to lie, I need to invent a local taxidermist, maybe one who lives by my work. It's in these moments that I wished his family was nearer and the I wasn't the one who would have to deal with it. But I can't sit with that frustration, I have to move beyond it, it's not serving anyone or anything.

I'm also hit with grief because before dementia he would have been the one that I had called on to deal with these sorts of things. The person that I used to rely on in tough moments, but that layer of who he was is gone.  

I'll call him in a little while.... maybe the 'switch may have flipped' and he has  put it in the bin, buried it. If not before I go to bed I'll be jumping in the car to fetch the bird and dispose of it all whilst maintaining the story of the taxidermist. 

Wish me luck

Update:

I called him, he was about to go to bed. I asked him about the bird, he was having trouble remembering it. I said I'd found a taxidermist who lives near my work, would he like me to pick the bird up and drop it to the taxidermist in the morning. He agreed. 

The deceased pigeon was wrapped up in a bathmat on the kitchen sink. I'm glad I went, lord knows where the rolled up bathmat would have landed in the morning and he'd never be able to tell me where the bird went. We wouldn't have found it until there was a terrible smell. The cleaner due tomorrow will never know how much she should thank me!

We unwrapped the bird and put it in a paper bag. The bath mat is in the wash as I type and I've disposed of the bird. My friend won't remember in the morning, if he does the memory will be gone by the following day. I'll never have to produce a taxidermy bird. 

I cried all the way home, I cried because I lied, I cried because of where alzheimers finds us and I cried because he was so sad about the bird and what had happened to it. 

Grief is hitting hard tonight and I wish it wasn't so late because there's no one to talk to

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. 

I don't normally wear sunglasses.

“I don’t normally wear sunglasses, occasionally I do on a bright sunny day when I need to see the road. Although today is sunny I can see the road without them. But today is a bit different… today is the day that we moved the furniture out of my parents’ house. After mum went into care with dad it triggered the need to pay aged care deposits and to do so we had to sell the house. In Australia when your an aged pensioner and you own your home there's no way around it. What I wasn’t counting on was dad passing away so soon after mum went in.  And there I was thinking we’d have a glorious time packing up the house with dad to tell us what was what, and it wouldn’t be so painful because they were both still with us. But now dads not here and it adds a whole new dimension to the experience.

 

Up until now it’s been not too bad, we sold the house really quickly; it didn’t even make it to market properly because it sold the same day the agent took photos for the listing. So that part was easy, we had to pack up a little for that but now the rest has to be packed and moved. And then this week we’ve been thru the garage and popped all dad’s tools to one side because we needed to clear so that the removalists could move some of the furniture in the garage. And then last night after we finished in the garage, we went inside to empty out some furniture and I started packing up dads desk, and I know others would experience this losing family suddenly, but it’s like he just got up and left the room. He’d left the house in an ambulance in late April and he never got to come back, we'd talked about it but it never happened. There were bits and pieces there that I know if he’d had the time to do it himself it would have all been neatly packed away. He would have sorted through things. But there I am just putting it all into boxes carefully separating the contents from each drawer, trying to preserve a memory of him and how he left it. He’d had that desk for as long as I can remember. I was feeling anxious and like I was going to throw up because what I really wanted to do was cry.

 

And then today the movers put everything in the truck and started driving towards our houses ½ an hour away and I’d just started following the truck down the road and it hit me. It really is the beginning of the close of a chapter. It’s the final pages where the story is rounding out. My house is now full of my parents’ furniture, it replaces the hodge podge I had before. And as I drive it's eleven weeks since dad passed and 3 weeks since Charlie passed and I’m not hanging onto the loss of hopes and dreams, it’s like the end of series of books there’s nothing else to write the story is done.  They’ve both ran the entire marathon. But I keep thinking that Charlie would have loved mum and dads furniture in our house she would have loved their familiar smells… Grief sucks, it’s so tough. The tears are flowing while I drive.

 

So I’ve got my sunnies on and I’m headed back to the house. In a couple of weeks, we’ll close the door for the last time.

I don’t normally wear sunnies but today I’m hiding my grief.”

 

 

I recorded those words on a voice message on my phone on the 8th November. 2 ½ weeks have passed. We finished packing up and cleaned the house ready for the new owners. We handed the keys over a week ago. Between when I recorded my thoughts until now there have been many tears.

 

It’s strange having no more house to worry about. Dad’s goldfish from his pond are in a pond in my back yard. I was never able to get a water lily out of his pond. There are some things we had to say goodbye to because they couldn’t be moved.

 

And now I have some time back, since April all my spare time had been consumed by my parents, Charlie and my best friend with dementia. Now there’s just mum and my best friend. Now there’s time to notice what’s not, who’s not there. I have more time for my grief…..I’m fine when I’m at work, I’m fully distracted but when I’m home on my own, now I have more time at home, I’m missing Charlie. It’s hitting much harder now. On the days when I get to come home straight after work anxiety sets in at about 4.30. I’m doing my best to sit with my feelings to allow them to be. It can’t be avoided; I’ll have to deal with them sooner or later so it may as well be now.

 

Today I took mum to the optometrist and while I was waiting for her I stepped into a bookshop and in there I found 2 great books on grief. But I had to put them down, even the thought of reading them made me aware of the fact that my brain felt full, overwhelmed like I couldn’t process what was inside the cover of each book. And then I realised that I feel like this a lot, completely overwhelmed and unable to absorb much more. Most days I’m walking around feeling distraught on the inside and I have no idea when and if this will pass.

 

I keep trying to put a description to the year, I can’t say it’s been a terrible or even tragic year because everything that has happened has just been a part of life and aging. I could say it’s been a difficult year, at times overwhelming. But the best description is that it’s been a year of grief.

 

The loss of my dad, and my pet, of my life as i knew it, and the slow loss of my friend to dementia. Everything has changed and I’m not sure that I’m on board with all of this adulting that I’ve had to do lately.

 

I crave a day where I have absolutely nothing to do and I can just sit with how I’m feeling, no distractions. But knowing my self all too well I know that even if the opportunity did arise, I’d find something that needed doing. So I also crave a day with the perfect set of circumstances to sit with my feelings that also comes with it the awareness that I need to stop and seize the moment. Will it help who knows, but I guess it’s just my brain needing silence from the overwhelm.

Lib x

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