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

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.