Category: Stress

Last week was a tough week in many ways and on many levels, so tough i actually tried for three or four days to write and found I was unable to, even though everything was in my head I could not get it onto paper, it was like being frozen, so things kept replaying in my head, it effected my sleep. Very little upsets or bothers me to that degree anymore but this week was different. Things effect me differently than they used to, many things have no real impact but things that do and they are generally something that makes me feel some type of emotion.

I went to the store to pick up a few grocery items, I was standing in line with my few items, an elderly couple ( likely late 80’s were ahead of me, another lady about my age behind me, we were all wearing masks, we were all being respectful, we chatted, suddenly a middle aged man came at as yelling at the elderly couple, running into me, almost knocking me over, which ended up almost causing a fall for the woman behind me, he kept yelling at these people that they shouldn’t be in that line, he did not apologize for running into me, one of the workers saw this and went to open another till, she asked me to come to her line as I next, but the belligerent man was still yelling, so i said very clearly, perhaps you should take this rude man, because apparently he feels he is more important than the rest of us, and moving him along so he can be out of the store will allow the rest of us to finish or shopping without putting up with anymore of his belligerence. The elderly lady was crying her husband upset, the cashier upset, everyone in the line ups upset. I talked to the lady, she was apologizing, I assured her they had done nothing wrong and it was ok. The cashier got the man out, I told the lady behind me to go ahead of me, they all thanked me for speaking up. By the time I went through the tills I was left wondering what was happening to mankind. I know people say its because of covid, I believe that to be an excuse for many people, they somehow use that to give themselves permission to be mean, unkind. It shows peoples true colours, because covid or not you know exactly what you are doing when you behave in those ways. I then came home to read that one of the council members had put forward a motion to get rid of the people parked in town with their Rv’s. People are living this way out of necessity, not for most by choice, these are not people who are snow birds, these are people who cannot afford to live and pay rent so are trying to live the only way they can without ending up homeless. But people don’t want to look at them parked along the street, so let’s make them move, well where are they too move to. So I wrote in to suggest that instead of pushing them further into despair, we might try to find a location, to allow them to park and be safe for the coming time, perhaps then the people with the resources could assist to help lift them up would have an easier time getting to know them their story and what could be done to help them. Again I was deeply disturbed by how willing people are to discard others, as long as they don’t have to see it, like the human at the very core of it has no value. It makes me feel we are walking a very fine line as humans.

This leads me to the most disturbing part of the week and it haunts me. I turned on the news something I rarely do anymore, and there was the the story about how the use of robots in long term care is somehow a good thing. So here are some of my thoughts on this. And let me be clear there is many many great people working in Long Term Care, who given a healthy work environment, a healthy life/work balance could do an even more phenomenal job than what they already do under dire circumstances.

While I am a strong advocate that technology has many important roles in our daily lives, in this instance, I have grave concerns about the impact of these robots not only on the residents but the staff as well.

When I first started out as a Care Aide I chose to work with seniors because I enjoyed the bond created between the residents and myself.  The staffing levels and nature of the job meant I had time to create a connection not only with the residents but their families as well.  I was happy to go to work because I felt I was making a positive impact on the lives of our seniors. 

Slowly, over the years,  this nursing career that so many were proud to be in was undermined by the desire to save money at the expense of the very people we were charged to look after.   The team work that had created a homelike environment became a thing of the past as permanent and full time positions were deemed too costly.  Casual workers meant that connections with family members and consistent care for their loved ones was no longer happening.   This resulted in barriers to family bonding with staff and lack of confidence in the care being given.

Staff were also impacted.  As the job became more task oriented they were unable to fulfill the reason they got into this line of work – to care for their patients.  Let me be clear here. This is not because staff didn’t want to care, it is because they no longer had the time to care.

The direct result of all of this is the staffing shortages we see today. Nursing is not a profession that many people want to go into or have the desire to stay in. Today, staff and families often view Long Term Care as hostile, uncaring and toxic.  The impact of this is felt daily by the residents. 

This brings me to my concerns about advocating for the use of robots to facilitate contact between residents and their family. 

We all know that this pandemic has highlighted the already fragile state of senior’s care in this country.  This on top of staff shortages, task oriented job mandates and lack of consistent care means that residents are already not getting enough human contact.  Using the robot in this way will just take away more of what little human interaction residents now receive; interaction which is well documented to be vital to the well being of those residents.  

Using robots to fill the gap from staff shortages does more harm than good.  It exacerbates the long time issue of putting Care back into Long Term Care.

If this robot technology is used in the way it is proposed it will give the policy makers a license to ignore the severe staffing needs and not enhance human interactions with the residents.  It will further encourage isolation and disconnect between the resident, the staff and the families.  

Perhaps a better use of this technology would be to create a system where nursing staff can, by voice, use the robots to do their charting/ paperwork that they are burdened with, instead of doing it manually.  The precious time saved could be better spent creating and maintaining human bonds. 

Human interaction is VITAL to life.

Other than those things it is a new week, I was so shook up by all these events I could not even write. This week, I am taking time out from a lot of things to focus on self care, my vocal abilities are really challenging right now and along with that the added piece of difficulty swallowing. Admittedly it is somewhat frightening wondering if this is going to settle into one of the new platforms from which I will operate for a time before the next step down in this process hits. So I’m mid week in another week and am looking forward with hope.

This weekend it is the Thanksgiving weekend here in Canada, I know in the USA they celebrate Thanksgiving in November, I am not sure about other countries. So Monday is actually Thanksgiving day and a statutory holiday for us, so people enjoy a long weekend, many have their last camping trip, others travel to enjoy time with family and friends. There was a time I too would have made the trip to spend with family, but now I spend it quietly with my dog. I find larger gathers to noisy, to hard to follow conversations, two or three people would be ok beyond that , its exhausting, mentally. Covid has also hindered the ability or want to put myself in harms way., restrictions, not knowing who is vaccinated and who is not means in order to protect myself I spend more time at home, and out walking and exploring with Pheobe.

I have much to be grateful for, many things to give thanks for, I try to live a grateful life each day, being present and aware of the many things and ways I have to give thanks for, thanksgiving is a good time for reflection and check in to remind ourselves of all that is good in our lives. Those who are in my life are indeed my greatest treasures, having the ability to meet and work with others around The globe to advocate for others, to try to help bring change about for many. To have a a safe place to call home, to have the companionship of my little dog. To still be maintaining my independence, to still have the ability to move about freely without aids.

I left this sitting for a couple days, today is Monday, the actual Thanksgiving day, today was a good day for me in comparison to yesterday, yesterday was challenging, fatigue, pain, brain fog, found me spending a lot of the day in bed. Allowing my body to rest as it needs to though definitely allows me to enjoy the good days more. Pheobe also had a better day today, and we did a lovely walk and drive, enjoyed seeing all the Kokanee ( thats a land locked salmon), in the creek that runs through town, in 16 years of living here i have never seen so many fish, a good sign, the benefits of the quieter world, less impact of man, we saw some turtles sunning themselves, and just enjoyed the sunshine, it was cold only 9 degrees Celsius, but i can actually function better in the cooler temperatures as does Pheobe so a really nice day for us today. Although that outing exhausted me, so my new normal is being happy if all i manage is one thing a day. I’m excited for my new rehabilitation program which will begin on Nov. 1st. my physio portion has already started, and I am thankful that I have such a great health care team. I am feeling grateful that I have managed to maintain staying independent and yes I have had to work hard, but because I’ve been willing to do my part my health care team has been willing to work hard on my behalf as well. Overall much to be grateful for this Thanksgiving. I hope where ever you were this weekend, celebrating Thanksgiving in Canada, living in a country that does not celebrate a thanksgiving day, I hope your weekend was pleasant. In closing is pictures of the lovely day today including of course my co pilot pheobe. You’ll see the fish and turtles

I am feeling lost these days, feeling lost because I am finding myself more and more to be living in a world that I no longer fit in. At times I wonder is it that part of my dementia, or is it because it seems my view and understanding is so vastly different than anything else I am hearing or seeing these days. I keep trying to figure it out but I am now finding that i have to not think about it to much, it causes me stress, so best just leave it be, whatever the reason maybe what matters is that i am acutely aware that I am living in is becoming increasingly difficult for me to function. I truly don’t know where I belong at this point

I am always trying to find a place or space away from people, the chaos of society, the noise of society. The constant shrill of police, fire, ambulance, people yelling, vehicles, I sleep with two fans on but still often the noise wakens me. So between the noise and choas, and all the anger and hatred, I have become more and more isolating so that I can function.

Today I went farther afield because its getting harder to find that solitude close to home as it seems more and more people are wanting to be out in nature. pictures of todays outing below, one area I was in had such a serene and peaceful energy, I spent and could have spent much mote time there.

I am trying to manage through the winter at which time I will make some new plans for my next chapter, i need a place and space that will give me a small area to dig in the dirt, where i can plant and move things about, a small space but i need outdoor space, my place i am in i am grateful to have, but because I am living so isolated my space is very important for my well being. In some ways this place ticks a lot of boxes, in the downtown core, I have the ability to walk to the store, the doctors etc, but those things are becoming less import than finding a place that is quiet and peaceful.

This could likely be one of my last outings as winter and the cold temperatures arrive. i will be keeping an eye over the winter how not having nature to escape to impacts my well being. i will also be continue to looking at whether it is in fact my dementia or the environment around me making me feel like i don’t belong or more than not belonging just don’t fit in.

Today begins Canadas Long weekend to celebrate Thanksgiving. I hope where ever you are you have a lovely weekend and its also remember to spread love, joy and kindness. I am leaving you with the beautiful sun setting last night.

I am always somehow surprised and yet know that I shouldn’t be but again yesterday I was asked “Why did you leave DAI”? People leave and change jobs, change homes, change communities all the time yet some somehow they are and seem surprised by my decision to step down from the DAI board. Its been months since I stepped down (June2021), so although I have talked about it when asked and I though I wrote about it earlier, I am once again deciding to write about it. So for the record “I did not leave DAI”, I made the decision to step down from my position on the board, for personal reasons, mostly medical. I worked with Kate Swaffer for months mentoring and talking with new candidates we were eager to see join the board, and given my personal circumstances I decided it was a good time for me to step aside and give the incoming the chairs, yes I could have stayed for one more year, but I am and always have been a firm believer that sometimes the greatest and hardest thing to do is knowing when its time to step aside. It has been and always will be a great honour to have served on the board and work along some incredible people. But to the disappointment of some who always like to think there must be a falling out, or infighting or some such thing, I am a total disappointment to them, again I will say I did not leave DAI, I gave up my seat, I know sit in a different chair. I have explained it this way on numerous occasions, I just changed chairs. If you liken the board room to chairs around the table those chairs are filled with board members, around the outer part of the room are chairs, this is where members and others working with and for DAI sit, I moved to the outer chairs. I did not abandon DAI, I made room for others to take their place at the table, I still work actively now from the chair I now sit in. Sometimes decisions are hard, sometimes even though you would have liked to stay till the bitter end of your term, you have to look at what you are contributing and if it is the best interest of the organization and yourself. For many months I was not able to contribute, this created extra stress for me, feeling like I was’t fulfilling my role the way I should. My decision was done based on what was best for all. I believe we all need to be kinder to ourselves give ourselves permission to do the things we much do for our wellbeing, society has created a beast in the sense that we are left to feel bad, to feel somehow that we have not done our best or our part if we change the chair, yet sometimes the view from the other chair brings a whole new prospective. I have had time to work on my health conditions, which as we all know are ever changing with dementia, but I am once again contributing to DAI and other organizations in a way that allows me to continue to contribute in meaningful ways, and maintain my well being. It is not anyone else that pushes us to push ourselves, it is hard to let go of the pressure we put on ourselves. It’s a lesson I am continually learning and growing in. I am always happy to talk about DAI and the other groups and organizations I work with, always happy to mentor and share, so I hope by sharing today, those of you who have wanted to ask but didn’t think they could, I hope this helps you understand, that decisions like the one I made are no different than any life decision you may have to make a times in life. For those who asked, thank you, for your courage to want to know directly instead of speculating, I applaud and appreciate you. If you are or know someone living with Dementia please have them join us here at http://www.joindai.org .

Know to end this mornings blog off I decided to share some of my morning with you, laundry on the go, and its shower time for some of my family of houseplants. I love my houseplants and am getting quite a collection, I really miss my outdoor space and being able to dig in the dirt and create peaceful areas full of plants, shrubs and colour bursting everywhere. But my houseplants create a lovely indoor area that is peaceful and they do keep our air clean, they are all thriving, I sing to them, with my voice that is barley a whisper these days, that cracks and growls, but I put my music on every morning and sing and dance around the dancing is a good form of exercise and I think they actually enjoy it, and it sure helps get my day started on a good note. HAHA! I hope you enjoy meeting these members of my family.

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.