Well this day which started out on such a positive and uplifting start, turned rather quickly this afternoon. I was just finished on a zoom meeting at 2 pm when I headed out to go to Dr. Peter Henley Office, to deliver a book to him. He has been a great support and wanted a copy of the book. I was not even a full block from home sitting at the stop sign waiting for traffic to clear when out of no where one of our well known bicycle people in town, no helmet, they are running in and out of traffic constantly, ran into the rear passenger side of my car sending her careening to the drivers side of my car onto the pavement, I threw my car into park, she laid there dazed and confused, I called 911, suddenly out of no where a guy appeared had her at the side of the walkway, she wanted to leave I said no, you could tell her arm and leg were injured I was worried about head injury, she didn’t want police involved, she didn’t want paramedics, fire arrived first ambulance next, then police, she kept refusing help, the fellow had suddenly became her husband, then well no someone she was seeing, she still refused help, kept telling police, she knew she was 100% at fault, told fire and ambulance same thing, kept saying I’ll pay for damages, finally they got her name and phone number ( very likely false), said she had no ID, still refusing help, hanging onto her pack back for dear life. Police took pictures of damage to my car, the fellow and his wife who were driving by at the time, came back around gave their names for witnesses, I couldn’t pull out at the time because they were coming into the intersection, so they saw it all, this all took a very long time, police were very kind asking and making sure I was alright, they wrote the police file number and all information for me, I then spent 1/2 on the phone with ICBC, I will have to pay my own deductible because they likely won’t be able to get money from the bicycle person, my appointment to have them look at my car is next Friday the 11th, I eventually feeling 100% frazzled get the book to Dr. Henley, back home, I’m sitting trying to deal with the immense headache this has caused, an email comes saying my amazon package has been delivered except, I don’t have it, on the phone with the delivery company, oh he delivered it to the wrong place, they will try to retrieve it, if not amazon will replace it,, my head is pounding. I want to go back to the early part of the day, where I did a great zoom with Emma and Diana allowing them to interview me for a research project and then a lovely visit from my physiotherapist, a great coffee and catch up. And then the day went off the rails. It’s very upsetting, you never want to see anyone hurt, police were very reassuring, but it still unnerves you. I’m totally u settled at the moment. Hoping this doesn’t trigger an event and effect me and m6 dementia partner, we’ve been humming along so nicely for a few weeks. Today I feel like crying.
This is a recording of my keynote speech made at the ADI Conference held in Chicago in 2018. I’m definitely not done yet!
My full speech notes are on the Dementia Alliannce International website, available here…
I haven’t had a haircut since late January or early February. I’m scheduled to have a haircut this morning. I’m amazed at the anxiety this one seemingly small event has caused me the last few days. I don’t normally deal with anxiety but this has definitely created it. Along.
With lightening bolts blasting through my brain again for the last several days, and today it’s impacted my vision again, Anxiety and Stress create difficulties for people with dementia.
I’m hoping it will all settle out again after I get this darn haircut done. I’m wondering if it’s really worth what I’ve been going through though. My hair is just getting long enough to wear pulled up and back. I have been very careful since the covid 19 pandemic started, I’m not sure why the hairdresser is one thing that creates so much anxiety and other than that the pandemic has actually created some things that have made life easier for me, like special early morning shopping hour, it’s quiet, there isn’t a lot of other stimuli coming at me, the streets were quieter, less traffic, although the summer months have been extremely busy, and because by nature of the illness of dementia I live a more isolated life, I haven’t found it as difficult to manage through it as some others who are used to living on the fast turning wheel of life, since that changed with my diagnosis I live a more peaceful calm and serene life.
So covid for me has been manageable, I do all I can to protect myself, I find ways to do things I want to do in a safe manner, and sometimes we have to think outside the box to do it. I’ve spend an enormous amount of time in nature, where I thrive. And yet anxiety over load thinking about a haircut. Even that, I’ve picked a small shop where I can be first in, still anxiety prevails, I’m doing what I can to protect myself, I’ll wear my N95 mask.
Oh I’ll be glad to have this over with, I better go get ready.
So this is my second first blog for my new website, so spent the last few days wondering what I should write about. Lots of different things have been roaming through my brain. Yesterday I was driving across the province I live in through old communities, back roads and byways instead of the busy main thoroughfares of today. It made me think about a lot of things, like how I feel like I’m somehow shrinking, becoming smaller and smaller in this world, I thought about how we all end up one day just a pile of ashes in a little cardboard box that’s handed off to anyone ( if there is anyone) who wants to claim us as theirs. Just a cardboard box and ashes, that to me means all the more reason to put such effort into today, being present, finding joy, despite my diagnosis, to live today, for tomorrow may be my turn to be the box of ashes.
Wow that’s quite the path of thought while driving, maybe all the historic towns and buildings made me think about who were the people from then. But I have been thinking about the life cycle a lot.
Other things on my mind, is the crisis in Long term Care, no Covid, did not create it it’s been there for a long time, everyone just always felt justified in reasoning that it’s not that bad, wonder if people would feel that way if they were sent to live like that for a month? And why do me need more meetings, more reviews, we need to start rebuilding our care homes, make them small housing units within communities, staff would end up with more job satisfaction, less stress and bullying, they would feel like they are making a valuable difference to someone’s life, instead of feeling like “ it’s the best we can do”, buried under mountains of paperwork which have created zero improvement in the quality of life for those living within the confines of the walls, small 6/8 bed units, that enable instead of disable that encourage involvement, that has adequate outdoor space that is secure but encourages people to enjoy fresh air, gardening, all those things a vital to quality of life. Turn the long term care homes into rehabilitation units for drug/alcohol, turn them into day care, turn them into housing for the homeless, and those who have mental health issues who were recklessly tossed onto the streets years ago. Let’s not fix the disaster has it is let’s not waste millions looking at what we need to do, let’s get back to putting some good old fashioned common sense and values into it. Let’s start providing as part of our medical planning, more Occupational therapy, physio, rehabilitation programs, in the home, let’s help people enable themselves, instead of putting them into facilities where they immediately are no longer able to even make themselves a cup, let’s encourage them to help one another, have staff working with them, to better their lives not shorten them. From food to programs that are designed as if the elderly and people with dementia are stupid, and do and provide meaningful engagement. Let’s also throw out the old image and understanding of Dementia and Alzheimer’s, let’s start showing how much people with Dementia are still capable of, let’s give them the resources to thrive, let’s stop making it something people fear, and hide, this promotes the rapid decline in those living with rather than having them remain valued members of our communities, that still have much to contribute. Let’s start by working with people living with dementia to help design impactful and practical training for all those in the various medical fields, let’s make it mandatory for anyone working directly with dementia clients to have specific dementia training that is relevant. Let’s just start over and let’s do it right. Let’s stop trying to fix something that is so badly broken and start doing the right thing. It’s long past time. The last four days my voice is going wonky again, never know if it will return, it scares me, trying to use my voice while it still allows.
This is my new website, and I’m thrilled! Admittedly I’m also in awe of Kate Swaffer, and her unending support and willingness to help, as without her I would have still been sitting in a frustrated heap, angry at myself for no longer been able to put these things together. So a huge shout and heart felt thank you Kate, a dear friend and colleague, and fellow activist and advocate, for making my vision a reality, and for knowing me so well.
My book was released on June 30th of this year, and my first official book launch and signing was held on August 12. It was a great success and even though having to be very creative due to COVID-19, and ensuring we were in compliance with all the health Ministers’ rule, I’m grateful to all those who attended.
It was surreal and for the weeks after my book was released until this last few days, I have been on an emotional wave that was unexpected. But then it was explained to me, we all can and do many things in life, but most often we only allow ourselves to be vulnerable to a certain point, but when we truly open up and make ourselves completely vulnerable it takes on a whole new level of being and the emotions that go with it are something only those who have been willing to go there can understand.
People think you should just be happy, excited, proud, but instead you’re scared, apprehensive, nervous, sad, and yet somehow excited and proud too. It has, as all things do, taught me more about myself, that we are ever evolving, ever growing, and ever changing.
We question ourselves; we question who we are today.
I have had to learn to trust myself, to love myself, even the hard parts, and that’s a journey unto itself. In publishing a book, you become fully exposed, whereas most of the time we as people expose parts of ourselves we are ok with sharing, the rest, simmers within, unwilling to become vulnerable, we like the safety of the canons we create for ourselves to live in, being vulnerable you open yourself, to ridicule, to jealousy, to people unwilling and unable to maintain relationships, because they are not willing to stand in your vulnerability for fear they may have to become vulnerable, it uncomfortable. I didn’t know or expect any or all of this, when I released my book which was done with nothing more than a desire to help others, to bring light on a topic most fear.
It wasn’t about recognition, glory, or receiving accolades, it was simply to make a difference. I have spent the last few weeks working through this immense amount of emotional toll going on within myself.
Yesterday when driving down a windy country road, I suddenly felt myself smile. I thought to myself, you’re going to be ok, you’ve got this, this has changed me, made me even more aware at how much of a difference we can make if we are willing to use our voice literally or in the written sense, if we are willing to be that vulnerable.
It IS, and I am!
And it is who I will always be for as long as I am able. I hope you enjoy my new website, as I endeavour to showcase how even after a diagnosis of dementia, I am trying to live my best life.