A Real Trooper

[Kory]

He was he was ... My Dad fought until the bitter end, by passed some of the atrocities this ALS disease has to offer and called it a day at 77 on Friday December 11 09. I am sure he would have "high fived" me if it had only been possible. Less than a year ago, I could say that my Dad was in way better physical shape than most 40 yr olds. Anyway and again for the second time in 2009, I was blessed, fortunate and whatever ever word may rightfully describe the honor of being right there, with them until the very last breath. Mom gave her piece of mind to diabetes and called it done in March 2009, a month or so prior to Dad's diagnosis.

Neither were "done" with life, and in the deepest corners in my heart I know this is what is best, no one should suffer so rudely or as such. At 48 I know with certainty how we are still children, little and needy of our parents presence. Though Mom to 4 terrific young teens of my own, have a blast of a time with them, I lost my two best friends and only family. Surreal as surreal gets.

I will be browsing here on and off and wish you all the very best, strength, courage. You are very special heros in my book.

Kory

 

[pepsiman]

Thank you Kory for that uplifting post. I lost my wife in November to this disease and I as well believe it was for the best that she went when she did. I miss her and will always love her but she, myself and our four kids were spared much of the indignity that this illness can bring to everyone involved. It's hard, every day, but I know deep down that things could be so much worse.....

Dick

 

[indigosd]

Kory, what a loving tribute to your Dad and what courage, honesty and love resides in your heart! I know that your Mom and Dad are soul proud of you. hugs, Kay Marie

 

[Al]

So sorry for your loss Kory. To lose both parents in so short of time is especially tough. My thoughts are with you.

AL.

 

[Just J]

Kory, I'm so sorry you had to experience the loss of your parents in such a short period of time. We lost my Dad suddenly in Oct 08 and as you said "he was not done with life" and we are still children, little and needy of our parents presence". I miss him every day and still wish so many times to share moments of my days with him. Forever grateful for the time that we had. Take care.

 

[brooksea]

Very beautifully written. I'm sorry for your loss.

I hate this disease!

 

[Valerie]

Kory;

I am so sorry to hear of your loss. After having lost my mom in December also, my heart goes out to you in losing both parents so close together. Your words touched me deeply and spoke to my heart. We will always be our parents children.
May you feel the love of your dad and Mom daily and find comfort in the memories you hold.

My most sincere sympathies,
Valerie

 

[Kory]

A huge sincere thank you to all for your kind words. The very same back to you that have experience this huge loss. I would benefit I am sure of elaborating more, however I'm not finding the words to express in a coherent way the total chaos of feelings going on. Disbelief doesn't come close nor does the "I don't get the point" of ALS. I am usually a good sport but right now I may be too bitter about this monster of a disease. I was stunned at the fact how few people understand this disease, its God awful impact let alone those who haven't even heard of it. I am recalling bits and pieces of the long but unusually short 8 months of hell my Dad experienced, things I had to explain to him, ask of him, and repeat as he was refusing (I'm guessing) to acknowledge (understandably) what was going on, how things would evolve and how likely he would not make it to Xmas (I still can't believe those words came from my mouth with little emotion, as if I were doing business). Our Doctor was nothing less than amazing however his french was a little hard to understand and so I had to repeat/translate to my Dad the process. We could not communicate or rather he tried but his facial muscles/mouth would not cooperate. All I saw was the fear of God in his eyes, the confusion and the unspeakable pain (emotional and physical). After Mom died he came to live with me. Within a couple months his legs functioned whenever they pleased (not often), his swallowing became near impossible then impossible, I had taken total care of this man who always had taken total care of me and to make things "ok" I always found some stupid joke, a silly gesture, and hope that humor would save the moment. I took him to the Doc's for a visit and just knew that he wouldn't come back home. I hate it when I'm right, I had to leave him but spent the next 10 days or so at his side, reading the paper, chatting, and watched him evaporate. As I said, I don't get it, don't get the point nor purpose. As for Mom, I haven't even yet acknowledge her passing, other than the disease she had, the last few months were identical to that of Dad's, though I took care of her for the last 10 yrs (diabetes is quite the monster too) we could not communicate in her last weeks (part of her brain had been taken by complications due to an uncontrolable bone infection). The kids are definitely my support, my focus point. They keep me grounded, laughing and hopping 26 hrs a day. They've adjusted very well as I presented this whole mess as a gift, a blessing and they should be proud at how well their Grandma & Grandpa breezed thru or aced the test. Quite the story teller I am, now if only I could find one that would work for me. However, having said all this, my venture seems very little, very insignificant when I think about those who are fighting this disease as I write this. No words and I do mean none (as in, not a single one), come to mind to justify or express the level of respect and compassion for those affected. As I said in my what I thought may be my last post, you are heros ....

Kory

 

[Kory]

Good thing I didn't elaborate ! Yikes ! Sorry for the long winded vent .....
Kory

 

[Valerie]

I wouldn't expect you have had a chance to process your Mom's passing as you have focused your energy on your Dad. I have found in the ALS journey, that keeping busy is easier but not always best.

It has been over two months since my mom found peace. I too keep myself occupied with my children, their activities and work. I am wondering when it will come... or is it when I allow it to come.

It is a process and I have found it easier to busy myself in the daily tasks and in being caregiver. I visit this site only occasionally as I end up in tears within minutes. Am I processing at all or just empathizing with others? ...

I was comforted by Mom's passing as she had grown so tired and lived so gracefully. Now, I'm not so comforted, now I see the "healthy Mom" in my minds eye. This is who I am grieving for now. This is who my children will most likely forget in the years to come, the most special grandma. It saddens me to no end, knowing how deeply she enjoyed them...
Of course I will continue to talk of her and all the wonderful things she did for them and with them.

Oh dear, this is not quite the response I had in mind. I apologize for my shift in tone...
I guess as we all know, there is a time when we do have to slow down and feel. I tend to be a very positive person and I held on to all the "blessings" of Mom's passing and in some strange way the blessings that the ALS progression gave our family - obviously through the courage and the grace of Mom's acceptance. ...

... I guess the bottom line is that this forum helps us tap into and share our experiences and obviously our feelings as well. Although my intention was to support you in your loss and have you know I can relate to some of your experiences, I have found myself in a moment to think and feel. Although painful... necessary.

I too thought I had posted my last post... It seems now though, I am visiting the site more often than I had been and finding comfort in the familiarity and the understanding of this special group of people. Perhaps you will also Kory.

Warm thoughts;
Valerie

 

[GlenBrittle]

Hey Kory,

Alright a neighbor. Welcome to the site.

The fact that you lost both parents last year, and still are going says a lot to your strength and character. I offer my condolences (belated) from my family to yours. Please dont apologize for venting here, as we like to encourage it, knowing it helps to get it out.

OMG , you have triplet girls ? How much fun is that?

By remembering the good memories, and discarding the the bad ones, your parents will live on in your heart, giving you cause to smile once in a while.

Glen

Smile, someone will think you are up to something.

 

[Kory]

Thank you Valerie. All you've said reflects a lot of what I feel and question. I too wait for the "when will it hit me", will it hit me, what's wrong with me .... Diabetes took Mom away but not before making her suffer in unbelievable pain even when she was in a coma. As I said I was so happy and felt like a queen to have been able to be at the right place, at the right time and at their last breath, alone, for both my parents. It would have been a total insult otherwise. However, when I think of them, how they were (Mom's brilliance and humor was unequalled and Dad, the quiet peaceful strong and generous man) and how they were taken away sickens me. As if someone flexed their muscles or bullied them into a corner.... my God they didn't stand a chance and I (superman wanna be) could not help. Yet, as you said our busy lives with kids, the life and laughter and fun and chaos and all that it brings is a true lifesaver however like your Mom, my parents were major players in my life and live thru daily conversations. Laughter and joie de vivre was Mom's motto and boy oh boy did she banged that into my head. Until the very end there was always ways to laugh at something, things that would make many most likely question my sanity. Heck, I qustion it at times. The bitterness I am feeling is at times is overwhelming and quite foreign actually. Wow, seems like I'll have some major bones to pick with the man above ! Hope he's patient .... and enjoys the occasional dram of scotch ! One of us is going to need it ! In all seriousness, I sure appreciate your compassion, understanding and offer you same ... thank you so much.

 

[Kory]

My Gosh ! Hey Glen !

Ahmmmmm, thanks for the condolences ... can never get enough of those. As for strength or character, it is one of those things you do what you have to do, even when it's the last thing you want to do ... one of many many lessons from Mom ... and kids, well they reinforce the whole darn thing ... can't be stomping my feet for ever ...

Yep, I am a neighbour, I immigrated 6 yrs ago from "la belle province", they didn't want me there, not with the first name I have ! hahahha

Triplets, yep, reason why I ran for the hills (country) ... they were getting way way to cute, thought I could hide them for a while (fat chance!) What is it like? It develops your ability to not require sleep, curse like a trucker (only when alone), laugh hysterically for no reason, talk to yourself constantly, pick up unbelievable bad habits, will not even mention the "right off the wall" humour you learn, bust every button off your shirt out of pride (I wear t-shirts now),etc .. I happen to have one awesome horseshoe up my because I would not last a day with them all. They are fantastic, easy, fun and wish for a school snow day from September thru May. And then there's Mark, my 16 yr old, my other button busting off my shirt pride and joy. He's a renaissance man, lives in his music world, plays the Jimi vinyls while his lava lamp glows, strums his classical guitar to 16th-17th century classical tunes, has the 8 track of Cat Stevens playing in one corner of his room and the SRV cd on his laptop and often has the country station on low. A 60's dude without the drugs! Laid back, and possesses that dry as a popcorn flatulence humour. He teaches and takes lessons still. Blows me away. Taylor is my horse girl, up to 3 horses now, they are her "guitars", trains, breaks them, rides, them and has wall papered her room with prized ribbons. Meg sings from the moment she awakes, is now starting in local competitions and learning piano and yep more singing lessons ... my Margaret Thatcher ... controlled, focused and you'd just better listen (I feel sorry for the patients where Megan volunteers!, kidding of course) Amy, ahhh Amy wears her heart on her sleeve and dances (has her first competition at the end of the month). My fashion queen. All honour roll "geeks" to boot, gotta love that!

So there, that's life on the funny farm, reminds me how my parents would so often drive home with laughter belly cramps ....

... as for the "Smile, someone will think you are up to something" doesn't take much to get'm talking in this town eh ! hehehehehe love it !

 

[thelma313]

Kory what a loving tribute to your entire family. My heart goes out to you as I am still watching my own dad suffer at the hands of this monster disease. Your post caught my eye because I have always referred to my father as a trooper in the 18 months since his diagnosis. I am deeply sorry for your loss and offer you my sincerest sympathies. I have total faith that your obviously formidable strength and your 4 amazing kids will see you through. Thank you so much for sharing your story... so eloquently I must say! Are you a writer?

As for La Belle Province not wanting you here, I feel that way too sometimes but I can assure there are ways to work around that especially here in Montreal Please come back and visit anytime. The fresh bagels and piping hot smoked meat await your return!

All the best to you and your wonderful family.
Rosella

 

[Kory]

Thanks Rosella, I wish I did not have the foggiest idea of what you are going thru let alone your Dad. No one should have to go thru this, no one. I wish you the all the best and to your Dad also. It is the ultimate test ... ALS may think or claim it as it's victory, but it only takes the physical part of the human body, our souls, heart, and existance are untouchable. Hang in there, hold on tight ... God how I wish I could snap my fingers and make this all good ...

As for "La Belle Province", I kid a lot, it is a wonderful province, it holds many of my dearest friends, my favorite places, food and though I refuse to admit to enjoying shopping ... ahmmmm well, it is the greatest ! You forgot the pizza's ... and wine ... and desserts, and entertainment .....

Funny you mention my writing .... something I would love to be .... one day, some day ....