Author: WWW.Chrissy's Journey.com

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.