I have had in the last couple days been able to enjoy the better air, as the winds have dispersed the smoke. Our temperatures have gone from mid to high thirties to mid twenties, making the temperature perfect. Covid has brought a lot more restrictions, so I remain mostly isolated, being very careful, so doing things in ways that I can enjoy a little of nature without the worry of trying to navigate and keep space from people. So yesterday was the perfect day to go to our neighbouring community of Armstrong and take in the Bloom Festival. Walking through the fields of Sunflowers, was so uplifting, such happy flowers. You had to get tickets to go at a certain time, so there was only one other family of three enjoying the gardens so no worries of trying to navigate around people. I took my sister in law ( Kay), we enjoyed strolling, the fresh air felt so good, it was nature, which I need and have needed so badly. It is not the way I typically enjoy nature, but all of the areas I would normally be going, but they are all burning up in the fires, so I have to adapt, my outdoor and nature time is so important to my overall well being.

This was up,lifting after the recent months, it was bright and cheerful. We enjoyed ice cream after and then went picking choke cherries along the farmers fields. Today I will make choke cherry jelly. The rain came down a summer sprinkle, while picking the choke cherries but I didn’t mind, it felt good and res fresh ingredients actually.
After I got home I gathered up Pheobe and off we went to have a walk, she is enjoying being reenergized as well by the cleaner air and cooler temperatures. The day before I took her so we could have a walk, and I could take my flip flops off and enjoy walking in the grass, so important for me to get my grounding in. It has been lacking in the last few months. We throughly enjoyed our walk and I am planning more of that each day, as we wind down the season before winter comes. One week from today I will be going on my three day trip, to another area of our province, to enjoy three days on a little rustic cabin on the edge of a lake. It’s not in a fire area, so nature, fresh air and the calming of water…blissful….so looking forward to it.
It’s amazing to me how just a couple days of feeling like you can breathe and enjoying nature in whatever way one can makes one feel like they just might make it through to the other side of all this.
I hope you enjoy some of the pictures I snapped.

This morning it’s raining, something to celebrate, hopefully it will rain for days, we need a week of steady rain, although they are cautioning that if it’s not enough rain and the lighting slated to come with it could actually worsen things…. and you wonder how much worse can they get, yet you know they can always get worse….we are surrounded by out of control fires, the covid 19 is again hitting us hard in this region, more restrictions for us, hospitals are in code orange and struggling to manage, And a Federal Election, its too much for most to manage, its overload on our body systems. People are tired, stressed, scared, and their health is being effected. I think the long term effects are going to be more than people think.
For me I am emotionally drained, while trying to manage the further lockdowns and shut in living, due to the smoke living in darkness most of the time, and now having to say my goodbyes to my sister in law, which fills me with sadness. The steps that had to be taken to be allowed in to see her and say my goodbyes, was more steps and checks due to covid, and it was confusing, not set up to be easy for people that may be older or have any sort of difficulties. Nonetheless I could not imagine not being able to see her. I can’t imagine the difficulties for all over this last 18 months who couldn’t say goodby to loved ones, so I am grateful that I was able to make the trip on Thursday.
It has been a difficult number of months, trying to focus mostly impossible. My advocating work slowed to a crawl, with the added pressure of beating myself up for not doing as much as I normally do or contributing in the ways I normally do. Admitting that we are again having to admit that once we what we were managing to do and maintain we no longer can. It’s just another of the ever changing and challenging aspects of living with Dementia, but at least now even though its difficult to admit to and even though I end up feeling bad, like I’m letting people down, I do realize that I must ensure my own well being, or taking time away to focus on my well being will not be a temporary thing it will become permanent. The rain has already stopped.

I have booked three days in a small cabin on the waters edge in the northern part of the province for three days at the end of this month, sometimes it can’t be about $$$ all the time, sometimes ones will being trumps the money aspects, the well I shouldn’t really spend the money, I can’t really afford to spend the money, sometimes ones well being trumps all so for me to get out of the smoke, to hopefully enjoy some sunshine, I will likely have to up my vitamin D intake this winter as I definitely did not get adequate sunshine this summer. It will be money well spent and so much more affordable than I could have hoped for at $ 80. per night, I think its a steal, and the best part my little Pheobe gets to go with me, she needs a change of scenery too.

I have and will be focusing on getting through the rest of this year, it’s been such a hard one. So hard actually that I was actually mad at my husband for leaving me to have to manage through life and especially these events like the smoke, heat, fires, pandemic alone. I wasn’t angry for long, more sad knowing that having him here would make life so much better. it does at times make me think about how extremely tired I am from trying to do life alone, and the isolation of the pandemic and then the heat, smoke and fires and now more isolation due to the resurgence of the pandemic has brought it into sharp focus. If you have beloved, cherish them, life is stopped short far to often and having to go it alone, might look great from the other side, but its not, all those insignificant things that we fret over, fight and argue over, we would give anything to be able to still do, so hug your loved one, you never know if today is the day your world gets turned upside down.

I was talking to a friend yesterday who called from the USA, and I treasure our friendship, and we talked about how sometimes we think we just want to fade into the background, not be tied to zooms, meetings, to agendas and just start living our life as our doctors encourage us to do. It’s not that we don’t love our advocacy work, working with various groups and organizations, but sometimes it takes so much of our time we forget to live today, in the present. We forget to go out and do the things we truly enjoy. When is it time to do that? Its a hard thing, we truly love what we do, we love all the people we are connected to, but when you are tied to your computer all the time it takes away from living in the moment. However I believe I have always tried hard to maintain that balance, and get out for my walks, and into nature as much as possible however the circumstance here have stopped me from doing any of those things, and thats what has contributed to my being emotionally drained. So I am focusing solely on getting to the end of 2021, alive and as intact as I can, emotionally, mentally, physically.

I don’t know what comes next, or to what degree, I can only get through one day at a time. Life will not go back to what it was two years ago, something different will unfold, I will embrace it and walk it whatever that path may be.

I’m not sure if it is the almost two years of the pandemic and the account the effects of adding the unprecedented heat, then never before seen fires, and smoke, which just created more isolation for me. But somewhere in there I became actually aware that I don’t fit in anywhere. It’s a strange feeling, I tried to explain it to my sister, it’s like everyone has their place, like their community of people, be it family or friends, that circle, that place that feels like home, like you are part of it and the people within and vice versa. I wonder where I am supposed to be where is home for me? I’m searching for that place, I’m searching for that community or my people. Who are they, where is that.Maybe I’m a modern day hobo, who doesn’t have a place, that wherever they are is it, but they drift and never really have that sense of community which is often our friends and family, the greater community we live in. Somehow maybe due to the pandemic, maybe this is one of the effects surfacing from ongoing isolation, I now and for a while now feel like a misfit, like I don’t fit anywhere. Like I can’t or don’t relate or fit in most situations. It is if I’m honest somewhat frightening of a place to be, but as always I’m trying to find the joy in it. Trying to look at the freedom it gives me to go out, one we are thru all that is happening with the pandemic and fires etc, to explore different groups, clubs, organizations, until I find my place, my people. I’m adrift without my people. I used to have a great social network, I don’t have any now. The world seems like a very strange place to me. I’m sure much of what I’m feeling will end up leading me to people who I will fit with, in a place that will be good for me heart and soul, or perhaps I just have to embrace the gypsy in me and just be free.
I am also much more emotional about things and things effect me on a much deeper level, whether it’s things like how the fires are effecting my beloved forests and animals, or the impacts on those I care about, so I feel things on a much deeper level.
I am not sure if it’s the isolation or changes in my dementia or perhaps a combination of the two. I just know that I am in a place I never saw myself in, trying to manage through it all, at times feeling like I’m just tired of trying to manage everything alone, but somehow I do.
At the moment I’m telling myself all I have to do is get through today, that’s what I focus on, I have decided I will not be putting pressure on myself to do or make decisions regarding anything until I get through 2021, whether on a personal level, living arrangements, my advocacy work, I will only be doing what I feel I can manage, when I feel I can.
yesterday was a very productive day for me and it felt good, packing more of the things I want to have ready to go should need be, my essentials I already have in my vehicle, but have some other things ready as well. I may not need them, but we are sitting in the midst of a melting pot at the moment, so a lot of unknowns in a situation that keeps changing moment by moment it seems. I then took all my plants off my deck, they had a rough go with the heat but I had just brought them back to be looking pretty good, but had to remove them from my deck, because if we get evacuated they would become a fire hazard with ash and embers falling, so sadly they are gone, but before I did a had a visit from a butterfly got some lovely photos, they like zinnias, I cried watching it, talked softly to it, and when it was done I carried on dismantling my pretty little deck. Hauled it all too the dump, I have done my part. I spent two hours at the hospital, while they tried to do tests that my specialist wanted on my lungs, but they were not able to complete because the equipment would not calibrate properly, they said the poor air quality in the hospital because of the fires were interfering with the calibration of the equipment. The tests are rescheduled for Sept. Thursday I am going to the coast to say my goodbyes to my sister in law, we have had a lovely and close relationship and Although the trip will be a long day for me, especially since driving will mean detours, alternate highways and possible reroutes due to the fires and as it will be an emotional it will be good to be able to give her one last hug.

This year has been one that is still unfolding, and seen many changes for me, as for many others, I am hoping that my people, my place is revealed. Until then self care, extra rest. We still have 3.5 months of 2021 to get through, I am making my way through it one day at a time.

Yesterday morning I woke the smoke in the air very visible, even though I was a seven hour drive away. I busied myself getting my things ready for for heading home today. After a. Shower and relaxing, I was planning to go have a coffee with my sister, when outside with Pheobe that piece of me that my mom taught me to pay attention too kicked in. In a matter of moments my plan changed, my gut instincts were telling me I needed to head for home. I couldn’t pinpoint why, but it was coming through clear and strong. Normally if I am travelling I start out early in the morning, it was already 10 am five hours past my normal start time to travel. I loaded my car, stopped at my sisters momentarily and then headed off.

I knew that the situation at home is what they were telling us would be a catastrophic weekend where the fires are concerned, but Friday, they phoned my specialist wants my tests done Monday morning, I have other medical appointments throughout the week.
I have driven this drive a thousand times, I’ve been driving it since I was 16 years old, but yesterday’s drive was unlike any I have taken over these roads. I wasn’t sure if I would go all the way or part way, I was just going to go by how the day was. When I left Fernie, it was smokey, I was surprised driving how thick the smoke was in different areas, none the less Pheobe and I were enjoying the drive, our first stop was at the the the peaceful Little Rock gardens in the woods to place my memory stones in the memory garden, I made one for my husband and my mom while I was at my nieces. My supplies were limited, but nonetheless I am happy I got to place them in the garden, we spend time in the creek the water so clear, cool and beautiful, I even got Pheobe into the water, and soaked her down, she didn’t even mind, so I think it was a welcomed cool down for her from the heat. A nice walk through the forest and a energizing rest, the air was good there, off we went, and we didn’t have to go far to be in thick smoke again, the Kootenay Pass enveloped by smoke. The traffic was almost non existent, it appeared people were finally heading the orders to stay away from our area. Temperature were varying, a pleasant 25 / 26 Celsius, for the first part of the drive.

The areas where fires have been recently very visible and one area that on my way there, had a lighting storm as I drove through apparently a fire started, you could see the retardant dropped by the planes and the scorched trees along the road side, the retardant was now on the road. The difference in a week. It saddened me to see the fire damage. The temperatures took a steep jump to the 30’s , but with lighter traffic we were able to stop and stretch and have cool off periods in the provincial parks that are normally too busy.

Christina Lake was completely socked in, the lake barely visible, and we were now into the hot temperatures, my air conditioning not working, of course my main concern would be my dogs comfort, my common sense told me I needed to ensure she could stay cool, so I stopped and bought a block of ice, placed it in her car seat with her, it only took her a few minutes to realize this was a welcome addition, so our windows down a hot smokey breeze and a dog cuddled up to a block of ice, we continued on, stopping every hour to stretch. It was such a relaxing drive despite the heat and smoke, it was eerily quiet on our normally extremely busy highways this time of year, so we were able to relax and enjoy. The hours slipped by as did the miles. We stopped in a little town of Beaverdell at a roadside food outlet and enjoyed a piece of pizza each, Pheobe loves pizza, a walk a stretch, water and heading off for the last stretch to home.
The smoke became increasingly thick, as we were headed into the last little stretch the lakes that normally welcome me, we’re not visible, it became so dark, not dark like night but a dark I hadn’t ever seen before, my headlights came on, it was surreal, it felt war torn, Vernon was hidden from view by this thick thick, grey, orange, thick smoke, it was disorientating. I cried as I drove into town seeing my town like this, knowing the next few days could be worse. A silent prayer driving those last few minutes. Getting home everyone in my building was waiting for me, as I drove in I could hear the chants, christine, christine, they were there to welcome me home. They are what makes it hard to change living arrangements. A hot shower, a chat with another friend who lives here who also has younger onset dementia, we talked about how it’s effecting us, and those effects are real, it’s a lot for our brains to try to process, it sends our brain going into high drive. These events, are causing an inability to concentrate, to focus, to control emotions, high anxiety, short fuses, and people without dementia are feeling those things but they are magnified for people with Dementia. We are trying to be supportive of each other through this. I am grateful that she came into my life.
A hot shower and we were off to bed where we slept a good 9 hours, waking up the air is better at the moment, although expected to worsen as the winds pick up today, so the next day or two will be wait and see, embers are falling my car is covered, my tests first thing tomorrow morning, and then wait and see, I am ready to go at a moments notice if I need to, and if my doctor advises that I need to go again I will.
I can’t imagine what all this continuous stress is going to do for people but I am focusing on getting through on day at a time, not apologizing for being emotional and sensitive, but being positive that the other side of this good things will come.
we have the added stress of covid increasing new restrictions, but truthfully that pales in comparison to the stress and uncertainty of the fires. I’m going o repack and add some treasures to my emergency kit, while I’m home.
please stay well, stay safe, be kind, kindness is such a needed gift to provide others.

I left home Sunday morning to a safer place amidst the fires and heat of home, today is Wednesday 2 in the afternoon. The air is clear here the temperatures are much cooler than home although today and the rest of th3 week will be warm for even here. However, a nice breeze, cooler at night ability to sleep with the windows open. On Monday afternoon my body in response to what had been and is still to some degrees with the difference being the smoke and the heat, my body decided to start showing the impact of that stress on my system. Having dinner with my sister I suddenly couldn’t function, complete warning to me from all systems to just stop, so off to bed for almost 12 hours, yesterday was totally low key once again, another twelve hour sleep, a short visit with my sister, a short walk by the river, and then my body says rest, so resting it is. The perfect time to do a catch up with everyone. One doesn’t realize how much strain your system is under during times like this last 5 or 6 weeks. I’m going to share something some shared with us who has been through this it accurately talks to what happens to your body at these times.

“

A beautiful read about these fires, Krystal Clark wrote:
I was raised in Lee Creek, my babies were born in Kamloops, and most recently I got to spend months on the lake healing my body with some really incredible therapies after years of pain.
I can’t even express how much my heart is with you guys, who are facing alerts and evacuations and everything that comes with a natural disaster like this.
I hope this share helps even one person ❤️

As the fires burn back where we are from, my heart has been heavy for everyone who has been experiencing this terrifying feeling of when nature takes over, and we are left helpless in its wake.

As a mother who was a firewife during our own evacuation 2 years ago, as well as a Shuswap resident during the 2003 firestorm, I want you to know a few things that I learned from our experience and surviving the PTSD that came with it.

Pack for longer than you think you’ll be gone. I grossly underestimated the time we would spend out of our home. Pack the sentimentals, the documents, all of the old laptops and memory cards, the sweatpants (yes, in august. You’re gonna need some comfy clothes for the weeks to come), multiple pairs of shoes and whatever else. Craft supplies and toys for the kids are also a really good idea.

Say goodbye to your freezer and fridge items. Empty it first if you can. Take photos of each room and each appliance if possible. If you have the receipts handy, take them. Try to set yourself up for an easier time when processing possible claims.

Trim back the hedges and put the propane tanks away from the house. Put sprinklers on your roof and around the parameter of your home.

Get used to the smoke. Ours lasted until winter. It took a full year to get the fire completely out. This is a long haul.

There is absolutely nothing like going through an evacuation alert or an order. The days leading up to a possible order while on alert will drain you. It will keep you in a state of fight or flight while you wait for the news, adrenaline will come and go, it will feel surreal, and having emotions during this time is completely normal and okay. You will likely remember key moments for years to come. I clearly remember the moment I looked up at the sky while on the phone with a coworker, and knowing in my core that this would be the day we would go south. Fast forward a few short hours, and I can still vividly see my babies in the backseat of my truck, screaming for their dad who stayed behind to fight the fire, and that fire raging in the back window. I knew I was doing the right thing, but it was intense. It was a lot. And what you’re going through is a lot too. Be gentle with yourself for the next while. You are not overreacting, you are experiencing a natural disaster, and you are going because your life depends on it. It is okay to be overwhelmed.

When you get to your destination, allow yourself the time to recoup and rest. Your body has been through a ton of adrenaline and fear, and your nervous system needs to reset. Don’t fight it. There will be time to get out and get the errands done.

You will pack the weirdest things. Ski boots, one golf club, clothing that hasn’t fit your children since 2013, whatever it is. Or, like one of our friends, you may completely forget your underwear. Bond with other evacuees over these things. In a strange way it really helped a lot of us to have a good laugh.

Call your insurance company when you get settled in your temporary location. Chances are good you’ll have to at least replace appliances, power can fail and most likely will. Our town lost power for a full 3 days before it was restored, and there was a lot of waste. It’s good to contact them to check in on what you’re going to need to document.

Don’t isolate yourself from support. Check in on your family and friends, reach out when it’s too much. The communities that have taken in evacuees often have discounts, events and gathering places for those who are displaced. Lean into their generosity and create some good memories in the middle of it. The city of Grande Prairie was absolutely incredible to us, and I will never forget meeting up with some other first responder and evacuated families to paint mugs and ornaments at Clay and Cupcakes, which has since sadly closed. You are not alone in this, so please lean in on those of us who understand ❤️

I know this will feel impossible, but try to limit your social media exposure to the comments sections in the weeks to come. Trust me on this. I know Fort MacMurray residents can attest to this. The sheer volume of comments about karma for the oil sands, political agendas blown out of proportion and the random trolls who want to see the world burn was a lot to take when it’s your home they’re speaking about. Your adrenal glands will be constantly kicking out the cortisol and other stress hormones as it is, so try to intentionally limit your time on your screens, and try to keep it pertinent to information and bonding with others. Download the apps that give you up to date info on the fire from the experts. Stay informed but also removed as much as possible.

When there is structure loss… grieve.
When there is human loss… grieve.
When there is animal loss… grieve.
You don’t have to be strong all of the time through this.

The biggest thing I leave with you is this:
You. Will. Get. Through. This.
You got out.
You’re alive.
You have your loved ones nearby (or so I hope).
The important stuff is with you.
You will get through this.

Our hearts are with you, we understand and you’re not alone.

bcfires #whitelake #fire #firefighters #Vernon #kamloops #kamloopsfire #shuswap

This was beautiful to receive, and it reaffirmed to me that the emotional, physical and mental fatigue I feel is real. The added strain my body endured during the unprecedented heat wave, being ill just prior, it’s been a tough year and I’m feeling the full impact.
so although it would be nice to say I’m on holidays, I am not I am on necessary reprieve to rest and be somewhere where my body can get out of that fight and flight mode. I am monitoring the situation at home, yesterday was very Smokey again, today it is windy, the fire is still out of control, I will reevaluate each day, that in itself is stressful. This is not likely to be over soon. I am appreciated of the private messages and emails. I am grateful to see family members and that they are appreciative of the fact that I am extremely stressed and tired.
im going to do what I can in and around my advocacy work over this next week, but will be mainly focused on breathing getting my lungs filled with good air, resting and trying to find ways to relax.
I’m ending with a few pictures from my last couple days. Be safe everyone

Today started out on a good note, the air had cleared somewhat enough that it prompted Pheobe and I to go for a ten minute walk outside. We then even ventured out enough to do a short drive to have a change of scenery, but by then the heat was too much the smoke was returning and once again we were inside in a blacked out house trying to manage the heat.

I had the opportunity to meet and FaceTime with someone from New York, who is undergoing diagnosis for young onset. It was truly humbling that she reached out to me, to know that in some small ways the purpose of my book is realized. Truly a delightful lady and one who I am looking forward to getting better acquainted with as we continue to meet. Offering support to others is truly a very special privilege to be able to do and in all honesty I think I gain more from each of them than they from me.
The rest of day saw me attempting many things, starting many, leaving one to pursue another things unfinished, what I call my squirrel moments in full force, skittering about from one thing to another as they enter my mind, no focus, it’s more the norm now. So eventually after having to drain the water from the sink three times in an attempt to actually do the dishes before something else took me in a different direction, I decided or actually Pheobe was wanting to go to bed, so in attempting to get ready for bed I took my wrong pills in my blister pack, so ended up taking a double doze of medications, my dementia medication, my blood, pressure medications, my heart medications… yikes, no wonder it’s the middle of the night and it’s like I’m wired, I am thinking that tomorrow may not be very promising for me.
The other thing I was thinking about was how I really don’t cook anymore, or what little I do, it’s most basic at best. It’s more of a struggle. I’m eat more things like yogurt, cottage cheese, fresh fruit and veggies. I can’t imagine what it would be like to make dinner for two or three others at this point. I actually have no idea if I could do it, but know if I did, it would be very challenging. From my love of entertaining in days before dementia to shuttering at the idea now. Oh how things have changed, and maybe some of it comes from so much isolation as well, not sure at this point. I just know that I do things so much differently.
I was supposed to have a new volunteer come tomorrow, that will be put off until next week, tomorrow will be a no go for me, no use trying to pretend otherwise.
Many more evacuations happening tonight, so many being effected, I am still safe, I guess one of the bonuses of living in the centre of town, at least for now, but I worry about all those family and friends who are directly impacted. It’s a stressful time for all in this area, you, we, I am effected in one way or another.This may be why I’m struggling more with other things, it’s how my brain manages things now.
Another day will start soon, I have to try to find a way to rest, my whole system is haywire from the overload of medications, I’ll forgo my meds in the morning and talk to the pharmacist about how to get things levelled out again. Let’s hope I actually do remember not to take them…..ugh

I started to write my blog a number of years ago in an attempt to help not only myself but my doctors and others who may be working through a dementia diagnosis, or their families, so that people would know they were not alone.

Much of my blog has been focused on my dementia, the health complications, the interactions with medical professionals. The lack of resources and help available for those living with dementia. I have also spent a great deal of time talking about the importance of peer to peer support, and the importance of those connections. The importance of finding hope and purpose is also something I talk a great deal about, and being involved, finding things that bring you fulfillment. Working with organizations and research groups are two ways that help one feel valued.

All of these things are equally important steps in staying well, living well with dementia, and more emphasis should be put on helping people find those resources to help them stay engaged. Living with any type of illness is not easy, being willing to share with others somehow helps make the hard days easier, and the good days a lot more fun. Yes we do learn to find the joy and fun in life again after diagnosis.

It can be frustrating down right maddening sometimes when we are constantly fighting against an all to still 30 year old believe in what dementia is and looks like, and breaking down the stigma surrounding dementia at times looks and feels no matter how much we try the stigma remains, but it was years in the making so will be years in the breaking. One must not stop trying, or if it’s time for you to stop then hopefully you will have been able to mentor others to pick up where you leave off. Passing the torch is important it helps ensure progress. Put advocating and working with others can not only help us regain self confidence and self worth it can truly make a difference in the lives of others.

So taking those steps to find those groups and people that will work with you, encourage you, will bring personal benefits as well, with friendships, with creating courage within ourselves, helping us discover things about ourselves we never new were locked away.

Something else I realized lately was that although my blog was started to document my journey with dementia and for the most part it still is, at times I have been told and or questioned why I write about other facets of my life and things happening directly or indirectly in my world that impact me.

It is quite simple really, so often when people are diagnosed they are seen as their dementia or a dementia patient, and on and on the list goes, but the fact is I am still me. I am not who I was pre diagnosis, it would be impossible to be, just like people with other illnesses, it changes elements of who we are, how we see the world, our prospectives shift and change, things that mattered no longer do, other things take on more of an importance. However at the core of all of it I am still me, a kind, caring, very quirky individual. I love, I laugh, I cry. I am human.

To write only about my dementia is not a true or real view of someone living with dementia. For in living with my dementia I like all other people still live, I have heartaches and breaks, sadness and happiness, worries and troubles, fears and dreams. Life at times throws more at me than I think I can handle, other times it showers me with such joy and happiness I think I’ll explode. The things effecting my world, the world, my community, my family, still effect and impact me. All of these things have a great impact on my dementia, and managing it takes a lot of work and energy. So not to write about those things would not be a fair or accurate look at the life of someone living with Dementia. So although some may not see that, for me, it’s all an important part of staying true to who I am, to being real, the good the bad and the ugly and allowing people to have a glimpse into a life that is complicated by a dementia diagnosis. And I truly hope this blog will help people have a different or better understanding that people with dementia are people who live with a terminal and often invisible illness, but they are individuals who all aspects of life are still very much a part of, and impacted by. I am so much more than my diagnosis.

We have arrived in August, what a spring/ summer this is. More people in our area evacuated last night as the fire has become a monster. I woke last night, startled, jumping up, the smell of fire so strong. Even though we had a sprinkling of rain fall, not enough to even dampen the ground under the trees, it brought the ash and smoke even lower, then the word that people on the west side road area where being evacuated, a lot of those people, friends, one of them messaged me that it was raining white ash as he drove it.

Yesterday was a strange day when around 9 am the daylight went from this smokey yellow grey we have been in too dark, needing lights on during the day. This morning will require the same it is dark. It feels like you are in this sort of mist, except the mist is not mist it is smoke and particles in the air from the fires. It has been effecting everyone, emotional, physical, mentally.

In many ways this has been harder for me than the covid, it has restricted me more, during covid ( yes I know it is still here, yes I know it’s getting worse again), but during covid although isolated, I could go for a walk alone, I could ride my bike, I could go for a drive, I could go out into the beautiful forests that are know burning, yes a lot of restrictive living, but not anything that felt so bad that I couldn’t find ways to manage it.

The heat dome that started in June, forced me indoors, my system can’t manage the heat., my house blacked out, but able to enjoy the very early morning sunlight. Then the fires started, the smoke rolled in along with heat, as of today more than half a million acres have burned in BC.

The impacts for me have been many, social isolation is becoming the norm, not sure how I will manage to reemerge into the world. And yes that is a real thing. My headaches caused from all the inflammation created from the heat and smoke are becoming unbearable, the pain pills also are not good for me, one thing compounding the other, concentration mostly gone, tired, not the fatigue I normally am challenged with but tired, its the lack of light and sun and oxygen getting into my lungs and breathing all the really bad air. I wonder what all this prolonged breathing of smoke particles are going to do and surface as going forward for people living here. They said this morning our area here in Vernon has the worst air quality in the country.

So as we move into August, and the province I love so much burns, on this BC Day a holiday here in BC, I am saddened by the what I see or more accurately don’t see, I wonder what the remainder of this year holds. I have to hold out hope that things will improve, that as 2021 heads to the ends stretch, that a new found hope and light emerges for the coming years.

I was just talking to my landlord, she is worried, so in trying to do something positive, we earlier had put out water bowls for the animals, we are now planning to find places to place seed/food for the birds as well, normally its not good to feed them, but the food sources they normally have, are all but gone, we have to try to help get them through this season. It may not be much but if feels good to try to do something. Working to stay positive and focused on the future, grateful that everyone I know who is evacuated is safe, praying they will all have homes to return too. Grateful for all the hard work of those fighting these fires in tremendously difficult terrain and conditions. Hoping people can maintain being kind and generous during these stressful days.

Last night and for most of the morning, I have been lost in thought about how very rich I am. Those riches may not come in the ways most people measure wealth, financial, status Etc. Nonetheless my life is rich beyond what I would have ever imagined. Yes, even living with Dementia my life is rich. Oh its not that I have not had my share of trauma and tragedy, goodness knows I have. But had it not been for all those things I may not be in this place where I can look at and recognize how rich my life is and on and in so many ways. From adventures that have seen me in Europe, many areas of the US, Mexico, Alaska, most of Canada, and I say most because there is still many highways and byways that I want to travel and explore. I don’t want to be done yet, and most of my excursions have seen me explore areas that are off the beaten track, where I could mingle with the locals, explore their neighbourhoods, eat in the places they eat, instead of following the tourist trail. It has created in me a richness, for people, for culture, for the natural beauty to be found in each of those places, each different, each unique, all very special.

Many of those trips were further enriched by the person or persons who traveled with me. They helped create memories that will stay with me throughout my life, despite my dementia, I will look at photos, it will take me back to how I felt in that place with that person, in that moment, those feelings can never be erased. They all bring a richness to my life that I will always be grateful for. From the tops of mountains to the ocean shores, the rain forests, the deserts and grasslands. I was fortunate enough to have my beautiful little car, which I sold when I was not allowed to drive, I could not bear to look at it sit there, to being grateful when I was again allowed to drive and learning to love the little car I know drive my little Mazda 3. My Mini Cooper was a special edition, iced chocolate with teal flecks in the paint, it was a lot of fun, I had a lot of great adventures with it, richness, because I had it, richness because again I can drive and have a little car in which to do it.

My dementia has also brought many riches to my life, from the experiences I had, to the people it has brought to my life, people who I would not have likely been to meet, to form friendships with, to share parts of each others journey, those are gifts, those provide a richness money can’t buy. So although dementia takes much, it provides gifts that enrich our lives in ways we never could have expected. Beyond the devastation and gloom of being diagnosed life becomes good, in some ways better, maybe I had my career taken away, maybe I have had to endure many losses and changes and challenges. but it has also brought new perspective on life and living, on being grateful.

It brought wealth beyond what I could have thought, wealth in those experiences, from speaking at the United Nations in New York and at the Alzheimers Disease International Conference, to finding the courage to write my blogs, and to write a book, with a second on the way.

My life is lived in large part in isolation, partly because of the changes since my dementia diagnosis, some just by nature of life. But in that isolation there is also richness and things to be grateful for. Within the isolation I have learnt more about myself, because without the business of life, the noise of life, I have learnt to listen to my thoughts, to be in touch with my emotions and my feelings. I have learnt to like wait no love who I am today.

I like that I am no longer afraid to speak my truth, that I am no longer afraid to hide the things that I am passionate about. I like that I have room in my life to try to help others, to be kind and compassionate, to try to make a lasting impact on things that matter, or at least matter to me. I no longer feel less than anyone else, I have learnt we are all walking through this life, some of us are forced out of and off of the hamster wheel, I am grateful I was one of them.

Life is lived more in the moment, with more presence, with a greater sense of feeling and gratitude. And I am not saying that others don’t, I am just saying that for me it comes from a deeper place within, I stutter, I stumble, I make mistakes, I don’t try to be perfect or do perfect, I am the most real I have ever been. That came from having life, a life my life, stripped away without any say, from one day to the next forever altered. Maybe I won’t like and don’t want the end stage of my illness, but living with it, letting it be part and parcel of me, it doesn’t control me, I don’t control it, we just walk together, forever one, but we have formed a sort of friendship and respect for each other, it kicks my butt, I kick back, then we both settle into whatever it is for know. Right know it’s kicking my butt, but in all fairness, its triggered by the smoke and heat from all the fires, it’s creating a lot of inflammation and inflammation is the bad monster in my dementia world.

2021 has challenged me in ways that have been much harder than the year prior, even though 2020 was a year full of changes and adjustments because of covid 19, this year the year 2021 has been much harder. With Covid 19 still running rampant, with fires, heat domes, smoke, the effects are staggering, but again knowing that it too will end and change my focus is getting to other end of it all. The heat will end, the fires will end, the smoke will disappear, covid 19 will eventually settle into a part of our lives that is not quite so disruptive, I cannot control any of them, I can only try to manage the ways in which they impact me and do my part to ensure what I do does not impact others in a negative way.

I may not know what the full richness this year has bestowed on me until it is long past, but I do that that the richness I have already felt from in, from those near and far doing what they can to be supportive, to check, to share laughter and tears, to all of those people they make me rich, rich in the friendships, rich in the kindness shown and deeply grateful to them all for being part of my life.

Right know I can honestly say I am in survival mode, trying to get through the smoke and heat and fires with as little ( although the impact on me and my dementia are increasing daily), damage as possible. Feeling like another level of richness comes from the team of doctors who keep a close eye on me, who know the situation we all find ourselves can quickly put me into a full crisis, so they monitor and I do what I can.

Happy that I am able to see and recognize all this richness that embodies my life.