Thank you to Remax Centre City Reality and the Gathering Tree Restaurant for sponsoring me and this event, so looking foreword to Seeing everyone
Sometimes, no oftentimes, when I am feeling unsteady in my being when my illness is causing me to feel unsure of myself, who am I know? Who will I be? When the demons try to find there way in to fill me with doubt, to shatter what confidence I have been able to regain, Due to the fact that when diagnosed your confidence in yourself and your abilities are shattered, rebuilding it is challenging and difficult. Especially as we endure loss after loss.
But we can rebuild our confidence and our lives, against all odds, against what the world says we should be doing and how we should look if we have dementia.
The world saw Dementia as an old person disease, so people were generally not diagnosed until their late 60’s to mid-’70s and beyond really. Fast forward 20 or 30 years and here we are its till the image people have, except many of us are diagnosed so much younger, in our 30’s and 40’s, 50’s and 60’s, in the prime of our lives really. We are busy trying to work towards that wonderful world of retirement that we hear about. WAIT .. what was that, retirement for many can be lovely but for a great many, it brings about a lot of health challenges and actually sees a lot of people struggle with the whole aging thing, so what then have we spent the prime of our lives working for if that’s what awaits us, I’ve had many recent conversations with people who say we should actually be living in our lives in reverse, traveling, enjoying life until 40 or 45, and then settling into work and contributing more fully to society as we age.
I believe there is some truth to that, but that we should always be trying to contribute to society to the betterment of all, no matter the stage of life we are at.
For those of us diagnosed with Early-onset Dementia, our plans for retirement all those things we were working towards stops, its a sudden slam on the brakes stop. When you’re told to go home get your affairs in order, your world stops, your confidence disappears.
I think I lived in a sort of fog, not the brain fog of my dementia, but a different fog, I likely didn’t start to emerge from that for 6 months to a year at least if no longer. You go through the days, the motions, but suddenly you have no footing, no one tells you how to continue to live, they only tell you to get ready to die, except you know within yourself you still have living to do, you still have life in you, the two things collide, sending you reeling, no idea what or how you are supposed to move on to the next day, let alone the next month or year. Yes, its true those of us living with dementia are living with a terminal illness and we all know all to well that at any given day, the illness can abruptly decide today’s the day it’s going to send us reeling to the end gate. But what do we do until then, no one helps us with that, a great deal of focus in health care needs to be shifted in that direction.
So eventually I learned, through my DAI family, I learned, how to help myself, I slowly regained my confidence. I was encouraged to keep doing things I liked, both old and new, to keep learning. One of the things I really learned was that I could find Joy, laughter again, maybe not in the ways I had before, and maybe not in ways that most could understand, but I definitely could find a lot of joy in my life. I also became aware of my own power, the power to change my days, my moods, my thoughts, my outlook. I became a Dementia Warrior.
So recently I’ve had many things to celebrate, like my book “For this, I am Grateful” being published by Austin Macauley Publishers, For the opportunity it has created to allow me to meet many incredible people and to do what I have always wanted to do since being diagnosed and that was to make a difference for others.
That doesn’t,t mean I still don’t have the down days the sad days, the days when I question everything, the days when I really feel the losses, the loss of friendships, of a planned life that will never be. But I have taught myself to do self-care, which is so important because it will take me back to the joy, to the gratitude. For me heading out into nature, like I did yesterday, totally unplugged, grabbed a friend who if he’s not busy is always willing to head out there, packed my cooler, and my little dog, 110 Kilometers down dirt roads, finding lakes, streams, rivers, peacefulness, stopping for a picnic, stopping to explore and hike, 110 kilometers, through the dirt and the mud, returning refreshed, regrounded. So even though I am struggling more these days, I am remembering to be grateful, to find the joy, not to let the often dark and scary parts of Dementia overtake me.
I had a good laugh late last night as I was thinking about the grand day ( pictured here), thinking at some point I am likely to be one of those people who has everyone’s alerts going off because I’ve gone out of my established area, I can hear them saying ” oh for heaven’s sake where is she going now,” and “she’s likely headed somewhere she can sit with her feet in the water,” and “no she doesn’t think she’s lost shes just out exploring,” “don’t know what we’re going to do with her”. I can see that I will be that problem, and as I’m getting ready to drift off to sleep I think to myself with a smile on my face “oh how grand that will be”.
This is my first official blog about my book, on my new website. Well, it is also my first website! After my recent book was launched, it seemed fitting to set this up! Being diagnosed with dementia has been full of up and downs, and in writing my book, my hope is that the daily realities of living with younger onset dementia is helpful for others.
About my book: I remember going home to an empty house to try to digest my doctor’s news, “You have vascular dementia.” I thought to myself, I’m only 55 and I’m already a widow, the worst thing that could ever happen to me. But during my career working in Dementia Care, my co-workers and I had always felt that getting any type of dementia diagnosis would be the worst news a person could receive. Having witnessed the progression in so many people, I knew being a widow was nothing compared to what I was going to have to face. I soon discovered those past experiences would, in fact, help me forge through the coming losses.
The diagnosis itself was not the worst of it, finding no help or resources was. I had to try to figure out ‘what’s next’ on my own. I got my affairs in order, and came to terms with the fact that my career and the life I had known both were gone. I gave up my home, my car, my ability to drive, my hopes, and my dreams.
Yet a stubborn streak remained in me. I decided, ‘I’m not done yet,’ and made it my new motto. Then I set out to find help, to find my new self. My search led me to Dementia Alliance International. At DAI, I found hope and purpose; this was life-changing and life-saving. I stepped onto a path of a whole new understanding of dementia, advocating, speaking engagements, and learning that life can be beautiful, even with dementia.
You can buy a copy of my book here…
Yes it’s true, I’m struggling these days, so although people always see me as super strong, I am human, sometimes it almost feels as though that is forgotten. I am a human who lives with a terminal illness, who lives alone, who has fears and worries, who sometimes because she feels changes happening becomes extremely emotional, worries about her future and what will happen to her.
So right know I’m going through a deeply emotional time, I feel drained, I feel like I’m drowning, can’t catch my breath. That positive energetic piece is missing at the moment, replaced by apprehensiveness, by some impatience towards others and things and it feels like the only time I’m finding peace and the ability to breathe is when I’m out in nature away from everything.
So even the strongest of steel bends, and even the strongest of people crumble. Sometimes we like to hear we are strong other times we want to scream “ I’m tired of having to be strong all the time”, sometimes we would give anything to have someone to share the load with, because it’s a big load, and just because we live with our illness doesn’t make us exempt from all the other challenges life throws at us. Yes these last couple weeks I’ve been struggling, and it’s ok. I allow myself to go through and feel the things I’m feeling, I cry,( there’s that human piece coming through), I feel sad, I think about a lot of things and people.
I won’t stay in that place, I’ll rise strong again, because it’s who I am, mostly because I don’t have a choice, my leaning post ( aka Uwe Thelker, my Deceased husband) Was ripped out from me years ago, yet somedays feels like yesterday, it’s his birthday Tuesday, was always a great day of celebration, oh how I miss that, how I miss him, is that part of my struggling absolutely hits me every year. But it isn’t the only thing, I feel changes, I see and live with the challenges they bring, I’m always working at my new normal, changing how I do things to accommodate the changes as they happen, honestly it’s exhausting, that’s what Dementia is, it’s just bloody exhausting, it’s less scary, it’s more frustrating and it’s mostly exhausting.
Later this morning, I will pack my cooler head to the bush, seek quiet, seek peacefulness, this phase of struggling shall pass too, but sometimes we need to own, admit it, that glamourous, life of dementia being showcased in its very real and unglamorous light. I’m grateful that I’m able to still get out to where I can find that peacefulness, sometimes I wonder what will happen to me when I’m no longer able, and I don’t have my leaning post to provide it.
Sometimes you question whether all the advocating you are doing is helping? Are you actually making a difference? Are we somehow making our illness look easy? This is something many of us have been accused of. Is that why many, even those who know us question our diaganosis and at times actually state that they don’t believe we have it? Is that because we work so hard and fight so hard for every good day? Would it be more benificial if we all gave in and said ok, we will stop then, let the illness ravage us so that the disbelievers, can than stop because they will see us wallowing and sinking into the black hole that so many struggle to find their way out of. It’s something I’ve wrestled with.
But then something happens and makes me remember and realize why fighting and standing up using our voices, even though it takes such a toll on us, something happens and we know without a doubt we are doing exactly what we are meant to be doing.
Explaining this is difficult so first I have to go back a bit, many releationships not just of my own, but for most of us living with dementia have changed or disappeared. Some will tell you why, some will say they can’t bear to see you disappear before them and they want to remember you as you have always been. You see in marriages we stick by our partners through the rough and difficult times, or usually, many with Dementia find they are left to cope on their own.But in other relationships withing family units and within friendships those same rules don’t apply. Sad really when you get down to it. Sometimes I left to feel like maybe having to be on my own has somehow been a blessing in disquise because it has made me have to fight hard to stay standing because know ones coming to rescue me, knows there on a day to day basis to rely on, where otheres expect to rely on those in their immediate circle. Doesn’t mean I like or want to do this walk alone, just makes me fight harder/ Maybe? Or maybe those with others close by fight harder becasue they have a reason to not sure, I feel greatly mixed about that.
Others want you to believe the relationship has not changed when in fact, most of us living with dementia can go back to the time it did change, we may not remember all the pertinet events that lead to the change but remember the feeling and the knowing the moment it did. And others may think we don’t know but we do.
We are then left with the undaunting chore of trying to process the loss, while living with an illness that creates enough loss without adding those losses to it, but invetiably it is in fact what happens.
So we must decide to either crumble or we decide to let that decison be the person making it be theirs alone. Its called accepting and not having an expectation, when in fact if you were living with any other type of terminal illness you would be expected to have expectations of others. So we try our best to focus on what I call “the Wins”, focus on doing what we can to help others and have a positive impact on those living with the illness.
Sometimes you worry that people think you are arrogant or full of yourself because of the work you do so this of course causes us to sometimes question it all, and yet all you have ever really wanted is to make a difference for others so people don’t have to feel the way you felt when you were diagnosed. And then that thing happens that thing that says, to those who want to disbelief its ok, to those who need to walk away or have a reduced relationship its ok, we make it ok for others instead of them making it ok for us, but then that thing happens yup time to tell you what that is.
Then you are talking with someone who reminds you of whats really important so I am going to quote from my conversation last night when discussing how it feels at times ” Those who feel you are arrogant are not seeing clearly. You are anything but Arrogant so don’t listen because I would suggest those individuals are feeling some jealousy verses loads of joy for you. give your energy only to the positive people and the negative ones will step aside.”
I so appreciated and needed those words, which then carried me into today to meet with a lady who herself has been diagnosed, we sat at the park, she told me reading my book and meeting me saved her life and changed everything for her. We talked for hours I gave her literature on DAI, so she could get more support, it was uplifting for me and again that reminder why I must continue to fight to stay well living with my dementia, regardless of what others think, or somehow believe I should be. I have definetly changed, I am no longer who I was, I struggle for more than most see, but thats because they only see the parts that make it look easy they don’t see the hours and days, it takes and the exhaustion after, holding yourself upright for hours to manage part of a day. Coming back home I messaged this lady to let her know I enjoyed our visit today. The response I got again verifies to all who question if they should keep doing the advocating and speaking out for others, how truly important it is. ” Thank you so much, I’m so excited to know there are things I can do—People I can talk to__ you have opened up a whole new world to me and I am so grateful. Plus you are kind of a cool lady!
These are those things that happen, somehow when we need it most.. to be reminded, that we should be proud of the work we do and we should ‘nt let the nay sayers stop us from reaching out and helping others and making a difference in the way we can. We may not be able to do alot of things we once did, we may not do things the way we once did, but we do and should continue in ways that are meaningful to us and contributes to us having meaning and purpose in our lives again, and we should never ever apologize for it.
This is a blog I wrote back in February 2020, which is relevant today, and which I have published on my Facebook page, Chrissy’s Journey. Thank you Kate Swaffer for reminding me of it!
The not so glorified side of Advocating
Often when we talk about our advocating we hear “ must be nice to go to so many places”.
There is a misconception about advocating, at least for all the advocates I know. So let me de-glorify it for you.
It takes months and months of prep work, usually your looking one to two years down the road, never actually knowing if your health is going to hold up that long, long days and nights preparing submissions, writing speeches, writing and making statements. It is more than full time work, the exception is we do not get paid, there is no staff being paid to help us, if we are lucky we have someone who believes in the work we do enough to volunteer and help with proof reading editing etc.
But often we don’t…. and did I mention we have dementia, and while doing all this we must still try to manage in our day to day affairs which in and of itself is often so overwhelming much is not done….you see we have dementia so that means our brain energy only lasts so long, it doesn’t recharge as well or quickly as others, so we have to decide where we spend that cognitive juice, those of us that advocate, out of a want and need to help bring positive change, to help others, for most of us, we do it selflessly with little regard to the enormous price on our own well being, because ultimately if we don’t, how can change happen in the best interest of those living with Dementia….it has to come from those living with Dementia, from those who are willing to open up be vulnerable, expose some of the most difficult and personal parts of themselves.
Those advocates make sacrifices, they spent many more hours fundraising, because very little is funded, ( that’s a whole other column about what’s wrong with that). All the hours preparing, the challenges faced when travelling, fighting the constant fatigue that plaques people living with dementia. Then there’s navigating in strange places, meeting dead lines, getting ready for the next, if you’re lucky, you will have enough energy left to have some dinner, then go to your room to work on the next days needs, in a three or four day span, if you’re lucky you will squeeze in one dinner with others at whatever venue you are attending, and maybe just maybe if all goes smoothly you might get three or four hours to jump on a big. Red bus and take in whatever you can in that time frame.
It is not a holiday, it is exhausting work, it is as in the pictures shown here, sleeping on a luggage cart in JFK Airport in New York, because there isn’t extra funds to give you the luxury of a rest day, which should be in fact a few for people living with dementia. Advocating gives us purpose, it gives us hope, it provides us with the ability to help direct the change, it enriches our lives because it keeps our brains firing. What it is not, is glorified or feeding egos, I’ve been told we are egomaniacs, in fact I have never met a group people who are so selfless, the word ego doesn’t. Even fit in the same room.
None of us wanted this diagnosis we are trying to live with it with as much grace and dignity as we can, the last thing we need is to be beat up and criticized for trying to make things better for all those living with Dementia.
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.