I’ve pushed through the last 10 or 12 days, they haven’t been all bad, but there are things impacting my already compromised system, like all the smoke, which then wearing a mask, when my system is already struggling from lack of air, is wreaking havoc with me.
I knew the smoke was going to irritate my system, my lungs in particular which makes my heart have to work harder, it creates stress on my vascular system, which impacts my dementia. The last three days have been the worst and the accumulative effects are here, waking up this morning I realized how much my system is struggling and that I have a lot of inflammation happening and so today made the decision that I must go back to using my oxygen concentrator along with my CPAP, to try to alleviate and minimize damage.
I am so grateful that a few years ago Cindy and Richard and Andy, were gracious and caring enough to provide me with an oxygen concentrator, at a time when it was vital to me. I had considered gifting it on a number of months ago, then I was sick for four months this spring, it has become apparent that their gift will help me for a very long time to come.
I have tried to stay indoors as much as possible or at least out of the smoke as much as possible, apparently, we are supposed to have better air quality in the coming days. Being ok to admit that we are struggling on any particular day is ok, its actually so important to our overall well being. So often we have our game faces on, people with dementia are good at their game face.
Yesterday I had to go to the hospital for some pre blood work prior to having a whole host of scans tomorrow morning, the lovely young woman in the lab, said to me, ” oh my gosh your veins are a mess, they don’t even straight like they should, and they are so small, She said I’m sorry it’s hard to find a vein she eventually found one that she could access. I told her I’m aware its why I always alert them to use the small butterfly needle. I’m used to it, it’s just how it is. But her conversation triggered me to remember that I have to be extremeley careful right know, I definelty don’t want my system to crash.
Overall I’ve been doing well but time is marching on, things are changing, and environmental things can really impact not only myself but all with Dementia, so while the world is stressed, while we deal with fire, smoke, hurricanes, and all the other things happening please remember to ensure you are doing self-care, is hard enough living with dementia, without letting all these things have a negative impact…do all you can to take care of you.
So just this past week, I was in Valemount, a small town in Northern BC, to do a book signing event, and to catch up with friends.
You see Valemount was the town were my husband and I lived, along with the kids, Natasha and Brenden, we loved our life, we loved our community. people came together to support one another, to enjoy watching the kids be it basketball or hockey, we loved our life there.
After my husband passed away, I came here to Vernon to be able to work full time, commuting back and forth, working a set going home for a set, it was difficult but necessary. Eventually, I made the difficult decision to move permanently. It was hard to leave so much and so many behind, but life changes and we have to change with it. But friendships withstand time and distance, I returned as time allows, always happy to reconnect with friends.
When my book, was released a dear friend contacted me about coming to do a book signing. She then set out to make it happen despite the challenges of Covid.
The Gathering Tree Restaurant offered up space, ( this meant closing the restaurant early) and the making of boxes of finger food ( Covid ), Remax ( Shelly Smith Battensby). Infinity Office and Health provided posters, soon everything was well planned. I din’t know the owner of the Gathering Tree or Infinity, Shelly Battensby of Remax is a friend of many years.
I enjoyed the drive, remembering many things, and reflecting on the life I had once had there. It always brings an emotional element returning to places of the past. But its also exciting to see people you don’t get to see often.
The local Television VCTV wanted to do a sit-down interview and arrangements were made for that. I did a lovely 45-minute interview done by Michael Peters, whom I also had never met, he came to Valemount after me. He did a great job and I was hoping to post it here, but it’s not ready yet, so it may have to be posted separately.
Next was an interview with the local paper ” The Goat”, another great interview and I look forward to seeing it.
The Book Signing was a great success, I met new people, including the lovely owner of the Gathering Tree Restaurant, its full of great energy, felt good to just be there, Tanya is full of life, upbeat, and a great addition to Valemount.
Just before the signing began, in came Michele, whom I also had never met ( the owner of the Infinity Office and Health Store), another lovely young woman, and she came early to do a meditation session with me before the launch, so that I could release anything that I was carrying and enjoy the evening.
These young women are bright, are following their dreams, opening businesses, living the type of life that brings them happiness. They welcomed me, they offered up time and space, and most importantly, they were the reminder of what is still good in the world. The kindness of strangers, who extended themselves to me, the warmth of a town that used to be home, the love of friends that always there with a warm hug, and welcoming homes.
By the next day, two businesses, The Infinity Office and Health Store ( Michele) had books to sell in her store and had a display build in her storefront, The Goat Newspaper also took copies to sell from their business.
The small town, where everyone wants everyone to succeed, there’s walking into a store the next day and hearing a store owner call you by name, that reminds you of why you loved this small town, and why the idea of small-town living still has a lot of pull for me.
I am so grateful to everyone in Valemount, for their support, for their friendships, grateful for the new friendships.
A heartfelt Thank you to everyone for making my Valemount Book signing a huge success. PS, the little green table, last picture below came home with me it says ” In a gentle way you can shake the world”, I believe this to be true, its what we are trying to do in our advocating trying to shake the world, to show all that dementia is, instead of what its thought to be, thanks for helping with shaking the dementia world Valemount.
It’s worrisome and somewhat frightening to see and hear so much discontent and heartbreak from so many advocates. It’s even more heartbreaking to know that after 25 or more years and all the advocating and all the promises of change very little in fact has changed for people living with Dementia.
It was deeply troubling yesterday to chat with and hear some very amazing advocates, both on a more grassroots level and on an international level, talking of the fatigue and being so tired and wondering if its time for people with Dementia to just “give up”, and all stop advocating.
It is not at all surprising to hear this, I have often sat and wondered if my advocating was worth it, if it truly was making a difference. 25 or 30 years of advocating and seeing little to no change in how Dementia is treated, how a diagnosis is handed out, how often we are only given a place in the roster and on the stage at conferences to quiet us and say yes we have a person with the lived experience here, it a carrot and nothing more a lot of the time, and it’s shameful.
What’s even more shameful is that most attending are funded through the various organizations they work for on funds raised under or on our backs, because we have allowed our faces and stories to be shared to help the fundraising campaigns, and then we are expected to do our own fundraising and campaigning to attend.
This of course is a bone of contention for many who advocate, why are others paid to stand on the same stage as us and be paid for their contribution to the event, and we are not. In the words of Kate Swaffer ” Corporate Egos”, must go. If you truly want to help change things for those living with Dementia then absolutely the Corporate Ego’s need to disappear and all need to start working together.
But for me personally, the thing that is most exhausting and tiring and very difficult to swallow is that after 25 or more years, there has been no change in the education of Doctors, Nurses, Clinicians, or any of the varied positions that have people in direct contact with people living with Dementia.
This to me is the biggest shortcoming of all, its actually nothing short of tragic, its imperative that this one piece be changed, because if we change it there, then we have the ability to change how the general public perceives Dementia and those of us living with it, and we are living with it, we are not at home, waiting to die, as most seem to think we should be.
So yes we are tired, yes we need to be brought to the table as full and included participants who are as equally valued as others. But for me no matter how tired I am I cannot and must not quit, for doing so would be doing a disservice to all those who worked tirelessly for so long, before me. Out of respect for them, out of respect for all those who are unable to use their voice, I will continue, and hopefully, I will remember to look for the silver linings, and the wins, no matter how small they may be, for if we make a difference in any small way it is still better than making no difference at all.
I will continue to look to my mentors for guidance along this very challenging road of advocacy, I will not be bought or gifted to conform to any one’s particular script, I will speak my truth, I will speak about the human rights violations, I will speak about the need for change.
The world is facing many challenges and changes in 2020, going forward as things change I can only hope that how we diagnose and treat those living with dementia, catches up to how others with any other type of illness are treated. This should promote and help provide quality of life. I say “Care until Cure” is the way forward.
Our dementia is always with us always there, we not only live with it we advocate about it, we work with many groups and organizations trying to make a difference in the lives of others living with it. Those are extremely important things, they provide us with hope and purpose, sometimes others don’t understand how important that is.
While others have careers, clubs and organizations and hobbies that give them purpose, many have family, children and grandchildren, That play an extremely important part in the day to day lives they lead. They happily bring us up to date on all those things, because they are important in their life.
Yet very often they don’t offer us the same consideration, they spend less time with us or none at all, because they don’t want to hear about dementia, yet they are missing understanding the importance of allowing us to update them, can you imagine the reign over horror that would sweep over someone if we stopped seeing them, or limited it because we were tired of hearing about their jobs, their husbands, kids and grandkids, those oh so important pieces of their worlds, can you imagine, we would be thought of as terrible people yet that is exactly what happens to many with dementia.
Wouldn’t it be nice if instead of shunning and not wanting to hear we were given the time and space to update about our dementia that then allows us time to enjoy life’s moments with our friends or family, camping, walking, enjoying nature, going for a drive, finding joy together in being together, having coffee, having laughter, even having tears at times.
Those are our dementia free times, the updates are done we get to enjoy the moments. Those are the very things we need the most and yet so many end up spending too much time alone, being isolated, not being included because people don’t want to hear or talk about something. You wonder if they are even aware or think about it in the very realistic manner of what they are doing.
I live for my dementia free ( not free), times, I wonder if it is perhaps partly because a lot of people live at a superficial level, without even knowing it. In fact it is how most people have come to survive and cope, but once diagnosed people living with dementia live their lives looking through a different lens than others, things come into sharp focus. We somehow gain a different perspective and gain a different outlook.
It saddens me greatly in the many discussions around why people become so isolated, and to hear over and over that it’s ok, they’ve become used to it, and yet you can hear the sadness and to me, it most certainly is not ok, and I doubt I will ever truly get used to it, learn to live with it yes, get used to it no.
it is true that people with Dementia become very good at being adaptable at adjusting their lives to manage all the changes they go through, this is one of those pieces that they should not have to and when we start educating everyone and teaching people to look at how and why they are treating someone with dementia in that manner, perhaps it can be one thing that has been an unnecessary hardship to adapt to disappear,
It’s yet another piece where we desperately need to help educate people, not only about dementia but about how perhaps their response to it contributes and does further damage to those already trying to find positive ways to live with a life-altering diagnosis.
I should clarify that in my earlier post I don’t mean they should stop looking for a cure, of course we all want that in the end, but that we need more of a emphasis on living with, instead of just go home and getting ready to die, so maybe the right frame of context is and I quote “ care until cure” Maybe that frames it better.
Earlier this week I was interviewed by someone working on a research project, the conversation was lively. She told me they had researched me before asking if I would agree to be interviewed. I’m not sure where or how they researched on me, but I hope it was an interesting search.
We talked about many of the issues and challenges faced by those of us with Dementia and trying to advocate and work to help bring much-needed change. We talked about how many organizations want the people living with to help them campaign, by being the chosen poster person, or by sharing their stories, for which most are happy to do, however, at the same time none of those funds become accessible to the people speaking at conferences, etc. the money instead is used for funding their paid employees to attend, and to pay for offices and business expenditures and wages, she was and said they were aware that this common practice happens. We spoke about the differences different organizations do and mostly do well, but that the one they don’t do is work together on the things that matter and could help those of us actually living with the illness.
We talked about the different things they could do, like sit collectively at the table with people living with dementia, look at the strength and weaknesses of each organization, help each other focus on the strong points, and working collaboratively it would and could then have a positive effect on those of us living with, instead of it being made to look like they are making a difference that in reality, they are not.
As the conversation proceeded and I was asked many more questions by the end she asked me if they were to focus on one thing that would be my number one thing, because we had covered a tremendous list of things and work that needs to be done. I think my list shocked her.
After taking a few minutes to think about it, my response was that if having to choose one for them to work on it would be to change the focus from cure to care, stop trying to find drugs to cure, we know that is likely not possible given all the complex bits of dementia, focus on creating drugs that can help alleviate symptoms, allowing for a better quality of life, start by helping change how a diagnosis is handed out, that medical should cover a complete team of care professionals, Occupational Therapists, ( most jobs to duty to accommodate for any other illness except Dementia), Rehabilitation Therapists, Physiotherapists, Nutrionalists, Life Coaches. Give us the tools and the team to continue to live and work, to have our best life while living with a terminal illness, Stop sending people home feeling hopeless, lost, and alone, in all my advocating, speaking and talking with people living with Dementia, not once have I heard a story of where they were given anything more than being told to go home and get ready to die, so lets change that, let’s start there.
Is it time that we start making our list of priorities visible, we so often feel we are through our advocating and speaking, but maybe we need to a top ten list, and podcast it so far and wide, it can’t be overlooked.
Today I want to write about an incredible lady that I met just over a year ago ( maybe it’s two, I have no sense of time anymore), but I was blessed to be introduced to her, and that set about a new friendship, for which I am grateful.
We were connected because I was in need of finding a photographer to do photos for my publishers. Nicole Renney Kenney stepped forward, she planned and set aside a whole day, she came to my house we packed up changes of clothes, jewelry and off we went, coffees in hand for what became a joyful, magical day.
We spent time getting to know one another, we laughed a lot, she made me totally at ease. I felt very cared about as a person, I felt she not only had a keen interest in my dementia and my journey, she saw me a person beyond my dementia.
By the end of that day, I had a great deal of respect for Nicole, I marveled at her talent as a Photographer. I love to take pictures, but I am not a photographer, Nicole is a photographer and her eye for capturing moments for capturing the true sense of a person is beyond amazing. After that day, we had another day of photo shots at her home, where again I marveled at her abilities.
What truly stood out was Nicole’s heart, a big heart, full of compassion and kindness, she works in long term care, I wish I would have had the opportunity to work with her, I’m so happy to think about all the kindness and love she doles out to those she helps. Nicole donated all this time and effort to bring my photos to life and has since then stood as a friend, as someone who continually steps up to help, and has been a voice in supporting my efforts to get the word out to try to help others living with Dementia, so when my book was being released, I didn’t have to as, Nicole again stepped up to say she would be my book launch to do photos, some of which are displayed here. We stay connected, I’m happy and honored to promote her photography work, Passionate Eye Imagery. I’m looking forward to our next coffee date, and I am very grateful that we were brought together, and I’ve gotten to know this incredibly talented and beautiful lady.
Sometimes we get buried trying to stay afloat when our brains are fighting the constant fatigue and the brain fog sets in, sometimes we have to not fight it and go to bed, its self-care, its frustrating, but we learn that if we keep pushing we may end up doing more harm to ourselves and then recovery is even longer.
These days, I think about so many who are struggling on many different levels. The world is a different place right now, for all of us whether we have dementia or not. As we go through unprecedented times with Covid 19 and all that it entails, as we see very abnormal weather patterns affecting the world, as we see our local and global economies changing, its at times hard to look for and find the silver linings. Especially given the fact that life doesn’t stop, people still get sick, get diagnosed, wait for surgeries and procedures. People still have to put food on the tables. Yes life is still happening, but the silver linings are still there, we just have to focus more on them than the hard stuff. We will manage the hard stuff, it won’t be easy, we at times will feel like giving in and giving up, but we in the end will come through the other side.
What we can hope for is that as our new world emerges, its a little softer, a little kinder, that we see those silver linings and grasp onto them. The simple things, like being able to hug your children, to go for a walk or hike in the woods, go for a bike ride, enjoy the sound of children’s laughter, enjoy each other’s company. Take more time to help each other, help the neighbors, check-in on those you may not have seen or talked to in a while.
Our world has been turned upside down, everyone lives with a level of fear of the unknown, so acknowledge that we are all a little more on edge, give each other a little more grace and forgiveness, patience, and understanding. Something as simple as a warm hello can make the difference in someone’s day, its true that kindness matters. I talk to many and most if not all are feeling just a little off, some can’t identify why, others feel like they are on such unsteady ground, they don’t know how to maneuver through it.
Staying connected is harder with social distancing, but we should still be reaching out, have a social distance coffee in the park, don’t be afraid to open up and share the fears worries, and concerns.
For those of us with Dementia, who by nature of the illness ( although I don’t believe that, I believe it is by nature of people choosing to make it ok, to walk away, to not work to include then to accept and understand the person living with dementia) (but that’s for another blog), end up being more isolated than many of us would choose. Our support groups become increasingly where we feel connected, and understood, where we don’t have to work so hard to be, it was said at one of our meetings today by someone that they don’t want talk to other people anymore because they except me to be the way I was before and I’m not, so I’d rather just be here where everyone excepts me how I am today. That’s a big statement it speaks volumes to how people with dementia feel. it’s sad, however at the same time but not at all surprising. Those of us that do a lot of advocating are often heard to say ” I have Dementia, but I am not Stupid”. So our get-togethers with our friends and colleagues whether they are on zoom, video calls, messenger calls, video calls, are extremely important. We need the connection. The loss of our ability to go to conferences and to work with the various Research groups we work, which provided us stimulation, purpose, and social interaction all ceased, so our actual social interaction ( face to face) for many of us is very very limited.
We must keep striving to stay connected during these coming months, even though things are challenging us. If there’s one thing that those of us living with dementia are good at its adapting. And Adapting to an ever-changing world at the moment doesn’t have to mean bleak and despair, we can and should look to the silver linings, things like our DAI online support groups, and webinars and most are learning zoom, we have been using it for many things for a long time. It’s one instance where we don’t have to adapt we are already there. Silver linings just look they are there.
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”.