Category: For This I Am Grateful

Sitting outside since early this morning watching the day unfold. i haven’t slept much after hurting my back yesterday. Crazy doing the same thing in the same way i have been month after month for almost two years, or the start of the pandemic. I go at this time every month buy my months worth of necessities, things like distilled water for my cpap machine, i try to buy enough that i can really limit my need to go into places, limiting my interaction with people, trying to stay safe. But yesterday doing that same thing, my backed popped, i knew instantly that something in my lower back went and hoping its not a disc. I spent the rest of the day icing and heating and doing gentle stretches, the night saw me up and down, stretching, icing, and trying to find a way to get comfort enough to get some sleep.

It’s a beautiful morning listening to the birds enjoying morning coffee. Sunday mornings the world is quieter so you can really hear each of the individual sounds, its relaxing and soothing. The sky is a mix of blue and dark rain clouds and lighter dreamy type clouds. Truly a morning to just be and enjoy.

I’ve been thinking a lot about the effects of covid after recently being asked about how it has effected me and if i thought the effects would have been different before my diagnosis. Well most certainly they would have been different, my life was different, I was different, my dementia opened my eyes to much in the world, that at times i think i was too busy on the wheel of life to give much thought to a lot of things happening in our world, so caught up in the throws of what we believe is all important in life that we miss a lot of what truly is. Getting off the hamster wheel has for sure been a gift that dementia has given me. Life in so many ways and on so many levels is so much harder, yet in many other ways it is so much easier, so much more peaceful, I no longer overload myself with what i have discovered to be unneeded and unnecessary expectations. i know get to live for today, in this moment of time. The expectations of society, those pressures to measure up, to be more, to have more, more more more, all those chains gone, and yes for a long time I didn’t even know they were there until they were gone.
If my diagnosis had not happened I would still be working on a locked dementia unit, I would have been watching the horrors of what transpired and all that is wrong with long term care come to light first hand. The mental and emotional toll on everyone working in Long term care here in Canada will not be realized for a long while. I still have many colleagues working in the field, I have and continue to watch and see the toll it is taking, warehouses are no place for people and I will stand by my view that that is in fact what has been created. It is what propels me to keep fighting so hard, to use my voice to advocate. I advocated when I was working within the system only to be reminded time and time again of the gag order that prevented me from speaking publicly, all the while having my voice squashed from those who we were told to talk to, to bring things to, on the inside, everyone so busy protecting themselves from any accountability, ensuring they got their promotions and big wages and protected their jobs. Hush we cant let people really know about whats going on or more importantly not going on. I was called to the highest level within, my job on the line, when asked why, when on occasion I took a stand, the CEO asking why I would risk my career, my answer was simple, I didn’t need time to think about it I simply stated “it was the right thing to do“. I would not take a stand if it was going to bring harm, but I would use my voice if it was going to help the person in care and the families. The culture deteriorated, I thought to all time low levels until the pandemic hit only to show how incredibly sad and deplorable we treat our most valuable people. I can say that for the most part its not people doing the care, its the culture of being top heavy, everything based on $$$$, the human piece never comes into play, this has made a culture where many delivering care, gave up trying to make things better, just doing the best the can. sad that we’ve deflated and beaten people to make them feel powerless, silencing them, creating an environment where doing just enough to keep people alive became acceptable, no quality of life, the most basic and elementary of activities so you can say you do them, so the funds keep rolling in. Deplorable, so I use my voice to advocate for changes in long term care, for all living with any form of dementia.

So today I’m thinking about how if we use our voice in the right way, in the right places, and we keep using our voices eventually positive change happens. We don’t have to hurt anyone, we don’t have to do it ways that create harm and discourse, but we do need to do it. Because one by one if we are using our voices to help and lift others up together doing the right thing, for the right reasons we can have a positive influence.

So back to has the pandemic impacted me, yes, its isolating, but it has also given me the opportunity to see how screwed up humans are, how much damage they ,we, continue to do, we are on the path to self destruct, all in our bid to somehow feel superior, like we don’t have to learn to fit into out world that the world has to fit our wants. The damage done in the last 40 or so years is deeply disturbing. Dementia has taken much, but it sure has enlightened me in so many ways. Hope you are all enjoying this ever so lovely fall Sunday.

I was awake at 4 am, the moon was almost full or full, it was beautiful, the clouds surrounding it seemed to somehow aluminate it even more, it had a very peaceful feeling about it. I watch the sky a lot, it like the ocean is ever changing at times it feels heavy at other times it seems foreboding and then as last night it creates such a peacefulness to it.

I was then outdoors at 6 am with Pheobe, she very settle wants to be out at that time unlike her younger years, where she joined me in my early morning wakings, but this morning she wanted to go out, so we went for a short stroll around the building, chatted with a crow, he’s majestic, and they have been gone all summer, likely because of the heat and smoke and lack of water sources, so I am thrilled they are back, I have a couple of them who chat with me regularly. I find them to be so intelligent, and social.

It is now after 9 am and Pheobe is enjoying her sleep in after her short outing, and I was delighted to open my email to find a lovely letter from my former Boss and Mentor Marliss, what a delight, I am so grateful that she continues to be in my life, the friendship we developed is something I treasure. It will be one of those friendships that will stand the test of time, a true respect for each other. It was the icing on the cake for a beautiful Sunday morning and I can’t wait until I again am able to wander freely and do some catching up with family and friends. There is also something comforting in receiving letters whether by post or email, that remind me of a simpler time, of friendships that stood regardless of the miles in between, and caused great delight, and the joy of seeing each other again in the future. I so enjoy a old fashioned phone call as well, to hear someones voice and catch up, texts are great for quick messages but to actually hear someones voices reminds us of those connections that are so important, to hear someones voice as they fill you in on the exciting things that have happened, or the sadness at the losses they may have endured. Zoom and Face time are also wonderful ways to communicate when distance prevents visiting, or during times like we are faced with due to the Pandemic.

Its now 11 am I took a break to go for an hour long walk with Pheobe, its supposed to storm later so wanting to take advantage of the beautiful morning. It’s really important with the increase in my health challenges ( Vascular Dementia means there are many challenges that are not cognitive, let’s remember that Dementia is about more than memory loss), that I continue to try to walk and exercise as much as possible. Although my abilities have decreased significantly since May, as my condition changes, I have and will continue to do as much as I can, and I am in hopes that with the help of my Physiotherapist and my pilates instructor I will have some relief and some even if slight improvements, my vocal abilities are really impacted as well, more and more my voice disappears, I no longer have enough muscle strength for continued vocals. I try to keep them strong, I even try to sing to pheobe, although it sounds like something very strange. This morning on our drive home I sang her the song “You Are So Beautiful to Me”, she sat looking at me like she somehow understands, so she endures my singing, and crackling, it makes me sad that my voice although it has become softer in recent years is failing me, so perhaps my writing is another gift in the loss of something else. Maybe I will not lose total vocals, but maybe more of a whisper. These are pictures of our walk this morning and the lovely cup of tea I’m now enjoying, yes its time for the Snoopy Cups to be out, fall is here, which means Christmas is not far off.

I am very focused on getting the most out of each day, taking the small wins, being thankful that I can at least still take care of myself, that I can still walk and drive, although everything is at a reduced speed, I have much to be thankful for. I believe that the impact of the pandemic on those of us with Dementia is still likely to be realized I believe it has impacted many of us quite severely. I have learnt through this not to put expectations on myself and instead to look and be grateful for all that is positive and good in my life. I wish you all a pleasant and happy Sunday.

This morning while attending one of our Dementia Alliance International Peer to Peer Support Groups, we ended up having a great conversation about the joy that comes once you reach the place in your Dementia Journey to let go. To let go of the old belief systems that make us feel like we have to keep pushing, to keep doing all that we once did, for surely if we don’t its another strike against us in our fight to stay independent and to continue to live fully. That somehow society and those around us will see it as further reasons to take away our rights and freedoms. We put these expectations on ourselves though, and once we realize we no longer have to we enjoy a freedom and sense of joy. When we acknowledge and accept that having a volunteer to help us with the things we struggle with actually enhances our life, allows our energies to be placed on living our best life. To be able to contribute in meaningful ways, that allow us to have a sense of purpose and provides us with a great deal of self worth. It started by me sharing with the group that I know have a wonderful volunteer who has made life so much better for me, she has remote access to my computer, she keeps my calendars, set up, my meetings organized, my work organized. This allows me to do the work I want to do instead of being overwhelmed with administration type work that I can no longer manage. I am so grateful that I quit fighting the feeling that it somehow diminished me if I accepted help, for in fact it has done the opposite because now I feel fresh and meetings, feel like I can and have what I need for things I am working on, I am no longer scrambling. I feel more confident to do and continue doing the work I like. I was overwhelmed trying to manage all the pieces, my volunteer has ensured I can no focus on the meat of the work, instead of the behind the scenes stuff. Others went on to talk about how they have given themselves to use volunteers in various ways, others have decided that they will look into starting to use them. This is the essence of the support groups, to help and share with each other so we can continue to live our best life. Others talked about how giving in and letting go and allowing ourselves to rest, to nap, to remove ourselves from events when they become too much, or we become fatigued, has given them a better quality of life. It allows us to fully engage and participate to the level that is good for us as individuals. Others talked about the freedom found when they decided to accept various aids, so whether it be for walking, hearing, visual, whatever they are allow them to enhance and enrich your life rather than fight them. Enjoy the freedom and joy found in letting go of the old worries and weights that life and society has put on us, and enjoy the new found freedom of letting go. We don’t have to do it all ourselves, we don’t have to push through 8 or 10 hour days, its ok to nap as often as you want and it’s perfectly ok to spend the day and sit and let your self do nothing. If we look at it as time to recharge and be ok with recharging as often as necessary, our journey with dementia will be more joyful, because we are no longer fighting things that are just not worth fighting.

Yesterday the first of the tests I had done earlier in the week came in, immediately followed by phone call from my doctor, booking an appointment for the 22, so that the other tests will all be in.

I should have known, I guess maybe I did, well I knew the tests would not be good, I never expected them to be as bad as they are. Its made me take a step back, I’m reeling, I need to catch my breath, I want to go into Nature to process it all. I feel like so often this year I am catching my breath, but this time its slightly different.

So often it’s not the dementia that causes me the most concern, that sounds crazy right? Yes it sounds crazy but in fact its true, I can live with my dementia, I wish we had the resources given others with illnesses which would really make a difference. But along with my dementia like so many others, depending on the type of dementia you have, it is the complicating factors that are the hard part. For me its a failing vascular system, its the muscles, that can no longer push enough air in or out of my lungs, that causes my lungs to get caught in my ribcage, its excoriating in the pain it delivers, its my voice that cracks and comes and goes because of the issues with my muscles. Its the lack of oxygen because my lungs can’t work properly, along with my heart that has to work too hard to try to pump, its my kidneys and other organs that are struggling all the time all due to my vascular system and its impact. Theres more thats the tip of the iceberg, my lungs are know only managing 21% percent, its why I’m tired all the time, the fatigue is crazy, but wait thats right I have dementia a terminal illness, I’m going into year 8 of my 3 to 8. Dementia is so, so much more than memory loss, and people forgetting, its so much more, yet for some reason people still believe its about mostly memory, NEWS FLASH, its more about all the things and conditions that impact our dementia, my dementia itself I can manage, I can figure out ways to do things I no longer can, I can set reminders, I can have my medications in blister packs, yes I forget things, yes I mix things up, muddle through a lot of things, I am always improvising. But I can manage all that, but as hard as I try I have no control over all the other factors. I can do nutrition, exercise, look after my sleep all those things, but the fact remains I am declining. My system is struggling, struggling to keep me alive. They say that most people living with Dementia die of something other than their dementia, I believe that wholeheartedly, it will be all the complications that take me out, a stroke, a heart attack, the complete collapse of my lungs, the clock is running and it seems its running faster now.

I am not afraid of dying I am afraid of not being allowed to die in the fashion and with the dignity I want. I am afraid of that because of that old adage that still persists today, ” They don’t know, or they won’t understand any ways,” it is such a dehumanizing thought yet alone statement, and I’ve heard it more times than I care to think about. So thats my fear, the fear is that people don’t understand death and dying enough to allow dignity, to honour someones wishes and wants, others somehow think they know better or understand us better. Or they think, yes well I know she wrote that, but how do we know she even understood what she was saying. So again I remind you Dementia is about far more than memory. We need others to listen, to listen before we can’t communicate it to you, to try to understand why we want what we want. It’s our journey, honour it please.

For me with the new news from my tests and doctors and I’m sure I’ll be hit with more when the remainder come in, it makes me do as I did today, I went up towards the community where our ski resort Silver Star is and I walked in Nature, I know I have to, as hard as it is, but I have to be careful as well, I can’t walk with my arms down, my hands go white, I have to stop and rest like never before, a slower pace, less inclines, less pushing, and knowing when to stop, no more pushing through. Then I came home and still needed to be in tune with nature, so I repotted all my house plants, my hands in the dirt, music playing, talking to my plants, good for my soul. All the while thinking about how I need to ( and know I have ) reorganize my bucket list, I’m running out of time, at least time where I will be well enough to manage some of the things on my bucket list. I will be talking with my doctors about some of them, so that they can help me be able to see some of them through, because I will need their help. So after my appointment, as winter settles in I will use it to map out some of my plans to complete things on the bucket list.

I’m not giving up, I’m just realistic, I’m not sad, I’m more focused on how to stay living as I want to so that I can complete the things I want to.

I’m leaving you with a link to the song and the lyrics.

Tim McGraw – Live Like You Were Dying (Official Music Video)

https://www.youtube.com › watch

These are the words to the song, it resonates with me, I have listened to it so often over the last number of years.

Lyrics

He said
“I was in my early forties
With a lot of life before me
When a moment came that stopped me on a dime
I spent most of the next days
Looking at the x-rays
And talkin’ ’bout the options
And talkin’ ’bout sweet time”
I asked him
“When it sank in
That this might really be the real end
How’s it hit you
When you get that kind of news?
Man, what’d you do?”And he said
“I went skydiving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named Fumanchu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I’d been denying”
And he said
“Someday I hope you get the chance
To live like you were dying”He said
“I was finally the husband
That most of the time I wasn’t
And I became a friend a friend would like to have
And all of a sudden going fishin’
Wasn’t such an imposition
And I went three times that year I lost my dad
Well I, I finally read the Good Book, and I
Took a good, long, hard look
At what I’d do if I could do it all again
And thenI went skydiving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named Fumanchu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I’d been denying”
And he said
“Someday I hope you get the chance
To live like you were dying
Like tomorrow was a gift
And you’ve got eternity
To think about
What you’d do with it
What could you do with it
What did I do with it?
What would I do with it?Skydiving
I went Rocky mountain climbing
I went 2.7 seconds on a bull named Fumanchu
Man, I loved deeper
And I spoke sweeter
And I watched an eagle as it was flying”
And he said
“Someday I hope you get the chance
To live like you were dying
To live like you were dying
To live like you were dying
To live like you were dying
To live like you were dying”
Woo

So there I was two days ago, thinking I was having a pretty good day, enjoying the cooler temperatures, being able to have the windows open because the smoke for the most part has cleared, enjoying the sunshine. I was washing all my floors again, trying to do some deep cleaning because the fine particulates from all the smoke and ash are attached to everything and seemingly even though you clean you need to re-clean to ensure to get rid of it, its not good to have it in your house and breath it.

Thats when it hit me, there I was washing my floors, when suddenly out of now where …. I stopped in my tracks, stood there for a few minutes, then had to actually go and sit down. What was it, well it hit me that I am heading into year 8 of a 3 to 8 year time frame for my life expectancy given when I was diagnosed with my vascular Dementia. Holy Crap… sitting down, sort of stunned that it had just hit me so suddenly. I have always maintained that I intended to blow that time frame out of the water, that I would do my best to get twenty years in, but then I remembered and I’m not exactly sure what year but I think before the pandemic hit, having a conversation with my doctor because hospital stays for me where becoming more frequent, telling him I’d like him to help me have another good year he said, I think we will try for a few more than that.

But know here we are, I’ve been at the hospital all morning having tests, seems its never ending, my vascular system appears to be struggling more all the time and then it creates other complications in my body. It’s a tough cycle, on the outside I look good, on the inside a whole other story is being told. This year has been extremely difficult health wise and I’m more fatigued and can do less all the time because of it.

I believe the pandemic has likely been partly to blame, with being in more isolation, less able to be and do the activities I enjoy like walking and riding my bike etc. It’s taken a toll, and although I have done what I could, dance routines in my house getting out for a walk whenever circumstances permitted. Regardless of any of it though my vascular system is sustaining more damage, that is out of my control, and the fact remains that I am heading into the 8th year.

So what does that mean, pedal to the metal in case this is my last year, throw caution to the wind? Maybe not be so focused on doing all the right things to stay as well as I can for as long as I can? Is it just time to run the clock? I never thought those numbers would or did mean much to me, and yet here we are and here they are and suddenly they do mean something.

I know many people who proudly announce 2 years cancer free or 5 years cancer free, people with MS who say I’ve been symptom free for x number of years or someone with Leukemia who has been in remission for x number of years. It’s wonderful to hear those things, it always fills you with warmth to know that in some things and some areas people are winning. For those of with dementia, we never get to enjoy remission, of symptom free days, we will never be Dementia Free, at best we have good and bad days, good weeks, maybe even a good year, but we never have a day where it is not and does not impact our lives. I’m not saying that to imply that those other illnesses along with many others are not any less than what they are.

What I am saying is that maybe we need to be able to celebrate like others our wins, like if I get to my 9th year. Yet somehow we don’t and often times we don’t even talk about that side of things. I am not really sure why that is. I know we are always advocating for the way diagnosis is delivered be different than you’ve got 3/8 years go home get your affairs in order and get ready to die, to something with a little more hope. perhaps instead of the theres nothing we can do, it could be more of the if you strive to do these things you may be able to increase your longevity and quality of life. May be it should be that you are told that your particular type of dementia has this type of prognosis but if we do x,y,z then we could hopefully look more to this. Then maybe we would discuss it more, maybe people would have less fear of being diagnosed.

I am not fearful of dying, I’m not fearful of the end, my hope is it is quick and not drawn out. Thats a whole other discussion. But what do I do with these thoughts that are swirling around about this being that pivotal 8th year. I am asking myself questions, like does it even matter if I get more time, and if so to who, no one but me really. Yes it matters to me, because I haven’t got to Ireland or Scotland or Portugal. I have advocating I still want to do, I haven’t finished my second book yet. So yes it matters to me, it matters to me because I don’t want to leave this world before my little dog Pheobe, although she has others she loves to hang out with now and then, I’m the one who knows what all the looks and sighs mean.

So when we think the numbers they toss out at us don’t mean anything, they actually do, maybe at first they terrify us, then we settle into just living and not thinking about them, but then somewhere in there in our subconscious those dates sit until one day, you set down your mop, you sit in disbelieve and overwhelmed, and for two days you try to process what it means to you and then if you’re like me, you just decided to just sit with it, let it be, let it unfold as it needs or wants too.

Maybe I’ll liken it to baseball, I’m in the top of the 8th, do I strike out or get a home run….

For truly I am grateful that I’ve made it far enough to say I’m heading into the 8th.

Last night I woke in the middle of the night, feeling angry and upset by the rallies going on at places like Kelowna General Hospital yesterday, as well as other various locations in BC. I laid in bed thinking about how I was feeling towards those that took part, in part I felt bad for them, bad for them because they have become so wrapped up in the hype and often misleading information out there. Bad for them and wondering if it was because they just are so desperate to feel they are part of something. Or are they grandstanding? I wonder how many of those people wear one coat when out doing these things and a different one at home. I wonder if any of those people would actually forgo treatment if they become ill. Are they willing to go that far for what they seemingly believe?

You see I don’t care if you have a a different opinion, that is not a problem for me, as long as it doesn’t have a negative impact on me or the people I care about. Because we are all entitled to our opinions, but none of us are entitled to create harm to others because of it.

So I have this to say to you the anti maskers: You’re behaviour and disrespect towards a medical system that is doing its best and health care workers who have been working in unimaginable stress for about 18 or 20 months know is disgusting. Your total disregard for them and what they do.

My thoughts are this: Everyone who refuses to get vaccinated has the right to do so, but then they should be willing to live in such a way that their choice does not impact the greater society. So others who are desperately waiting for surgeries that have to keep getting postponed; because too many covid patients in the hospitals, well perhaps people should be triaged differently, perhaps its time that the person waiting for surgery or treatments gets triaged first, if you end up with Covid and haven’t had your vaccine you only get treatment if no one else is in que waiting for that bed, for surgeries or treatments. It is absolutely your right to refuse, but myself and others have rights too and you are abusing others. You are causing harm to others.

I have a compromised system, I have been extremely careful, I live alone that has meant extreme isolation over this last 18 or 19 months. But I have done, for two reasons, one because it is my responsibility to do my part, and too ensure I am still standing at the end of this, and that I don’t put unnecessary burden on the medical system.

But just when I thought perhaps things were improving and I might finally be able to get out a little more, numbers go up, the hospitals fill up, and these are hospitals that I worked at. I have many friends working in these environments, the disrespect you show them is unforgivable and I wonder, would you still expect that these people should or would care to look after you if you got sick? You wear seatbelts in your car to stay safe, you drive at a speed limit to stay safe, every single day we do things to stay safe and to keep others safe, but somehow taking a vaccine that can protect you and your greater community and keep them safe has become reason to show disrespect to try to create discordances within people, and families. I wonder if at the end of it, it will have been worth it? Perhaps all those who don’t want to should have to create their own health system so that if they get sick they can look after each other without putting the strain on the system, those those waiting for surgeries and treatments for things like Cancer can actually receive their treatments. Because they and we have rights too, not just you, perhaps we should all get together and have rallies that are in complete contradiction to yours, perhaps we should make you feel the way you are making others feel. Perhaps instead of allowing you to be so thoughtless and reckless with your rights we need Rostand up and make our rights heard and understood.

I don’t care if you get vaccinated, but then stay out of the public areas, where you cause grave concern to others, because if you care little for others rights and its all about your rights then you need to go live somewhere where you can live with your rights without disrespecting the rights of others. And you absolutely should not be allowed to have your rights upheld while others are not. So you should not seek help or expect help if you become sick. Others rights should be upheld.

I am deeply saddened to see those in the health care field feeling so battered and bruised, working unimaginable numbers of hours in a day, days in a row, to be disrespected in the ways that transpired.

Perhaps you should have all traveled to the legislature and held your rally there, perhaps you should think a little more about who you are impacting to have your voices heard, and by the way most of us just shut you in disgust. I am a firm believer in using our voices for the greater good, I do not believe in using our voices to create discourse, upset where it can do no good.

For those few who work in the field who attended, I wonder are you expecting to one day return to work and have any kind of working relationship with the people you just took part in disrespecting?

As I said I don’t care yes you have the right to decide if you want a vaccine or not, but you do not have the right to step on my rights or anyone else’s. I am so disheartened, I hope and pray that the world will become a better place but the actions and behaviours I see lately have me wondering if thats possible. So I shall continue to live in isolation, I will do everything in my power to protect myself from you.

Over this past week in conversations with a number of different people I realized there was an interesting thing happening. During those conversations the question was asked, “ are we going to be O.k., or “we’ll be o.k. Right? Like a question and statement all at once. These statements or questions if that’s what they actually were came by people who were telling me that they feel flat, despondent, uninspired. Interestingly enough these are not people living with dementia. So in my chats I discovered many people are feeling this way after 18 months of either being locked down due to covid, and if not in full lock down still having to live with many restrictions around how they navigate everyday life. Unable to do many of the things I. The same way as before the pandemic, if at all. Here of course we have had the added stress of extreme fires and smoke and unprecedented heat, further keeping people living in ways they have not been accustomed to, being restricted in ways they couldn’t have imagined.

Listening to them I realized people are and have been losing, hope, not being able to see beyond all that they have lost, much of which may be temporary. But the impact is a sense of despair of giving up, lack of motivation. So I talked to them about how we all need a sense of purpose, a sense of hope. This is something we talk about of in our dementia circles.

In thinking about it I realized that there are so many people who are discouraged lack direction. People are needing to adapt and change, something those of us living with dementia have learnt how to do out of necessity to manage and to allow and give ourselves the chance to live our best lives. So while we have become good at it, this is something foreign to much of the population, and now they are foundering, lost, feeling like there world is unstable, unsure of the tomorrow’s. Many of them are stuck, stuck in that “I just want to do what I used to do”, phase, that “ I just want my life back phase.

I know as most living with dementia now, this is not an easy or fun place to be. Finding your way through that, difficult, scary, and it doesn’t feel good. That is mostly because we humans are creatures of comfort and staying with what we know, so change of us is scary, it’s something we don’t want, and often we fight. However, if we are able to, as those of us living with Dementia can testify to, we are examples of how when you strip someone of all they new, all they thought was their life, you can once you learn to let go of the what was, and what you used to do and stop looking at what you can’t do and start looking to “ what could I do”, you will find new avenues of hope, new ways to having purpose. You will have to be willing to be thrust out of your comfort zones. It is not likely that life will ever go back to how it was pre pandemic of covid 19, but that doesn’t mean we are forever thrust into a world of no hope and purpose.
The shift comes in changing your thought process, it takes looking at ok, these are the restrictions I have to live in today, so what can today look like, what can I still do, what will bring me joy. Being willing to try something different

It takes courage, it takes willpower, it takes being willing to sit back and cry when you feel like it, but then getting up and getting busy. A desire to do something different to feel something different, because living with the feeling of hopelessness and despair, living without purpose just isn’t giving you what you want, it isn’t feeling the way you want to feel. People with dementia are handed a diagnosis, told to go home get there affairs in order, and ready themselves to die, when in stead they should be given the resources and help and shown that there is still hope, they still can have purpose, they can still lead a life where they feel valued. People with Dementia are not given any of those things, they have had to find their way through a complete unraveling of the life they had, they have had to figure out how to reinvent themselves, their lives, all the while living with a terminal, progressive illness. They are a shining example to the world at this time, about how to live and find purpose.
So in my chats I was talking about the possibility of finding purpose in different ways, if your purpose used to be this, then maybe your purpose will be this. It’s about finding things you like, and likely they will be things you didn’t even realize you liked, maybe it’s in something you always wanted to try but never have, maybe it’s baking artisan breads, maybe it’s gardening, maybe it’s painting, or like for me writing. Discovering I like to write lead to my blog, lead to my book “ For This I Am Grateful” being published. It gave me the ability to find a new way to try to make a difference to others. It’s also about learning to live more in the present. I look simply at today, let life unfold, instead of trying to control it all, make changes that allow you to have less stress. Most people don’t know how to unwind and exhale, most people even their holidays are are rushed super busy, jam packed with things to do, because most people don’t know how to just be. To just sit, breathing in and out, listening to the sound of your own heartbeat, listening to the sound of the wind rustling through the leaves, the sounds of the birds, or the splash of a fish jumping in the water, or even the sounds of things in your neighbourhood. We busy ourselves, and it buries pieces and parts of us that given the chance to let those emerge, we discover and rediscover a whole lot about ourselves. It’s like the old “ Humpty Dumpty Fell Off The Wall”.

People have to learn to get back up and put themselves back together again. Just like Humpty Dumpty, all the kings horses and all the Kings men, aren’t going to be able to put us back together. We won’t be able to go back to what was and how things were. Just like people living with Dementia discover while living with dementia, their diagnosis changed them, we are not who we were, yes some of who we were remains but it changes much of who we were. We grow, we adapt and most of us become someone who we really like.
We cannot expect life to resume, so in order to have and find hope and purpose we must first be willing to venture into some unknown territories. I sincerely hope that coming out of this year, 2021, which I feel has been so much more difficult and challenging for us on many fronts, that we have learnt to become kinder, more compassionate, less materialistic, that we have learnt that money should not and must not be allowed to trump all. I hope that we have learnt that if we don’t all take a more active role in looking after our world, our animals, plants, the earth, that we walk, then we will be to blame for the demise of the human race. I hope we have all learnt that we were programmed, brainwashed into believing we had to have more, do more, bigger, better, until bigger better has almost cost us everything, and for many it has cost our emotional and mental well-being, it has cost us our very health. I hope when we come out the other side of this life will be different, I hope just like those of us living with dementia have had to learn to adapt daily to our live with our illness, the world and all of you can enjoy a simple relationship with each other with the world around us. I hope we all learn to find more hope and purpose in things that are meaningful on a deeper level. Yes I am full of hope, yes I have purpose, it is a gift of my dementia. So yes I think we will be Ok, I think we will all be a little different, but we will be hopefully better than Ok.

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.