Live Like You Were Dying

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