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GK62

New member
Joined
Jan 22, 2013
Messages
2
Reason
Loved one DX
Country
CA
State
BC
My Dad passed away four months ago from respiratory failure due to ALS. Dad handled his illness with grace, integrity, and courage. From the moment of his diagnosis, which was 11 months before he passed, he never showed any fear nor helplessness mostly because he didn’t want his family to be stressed as to his impending fate. Up until the end, he showed such selflessness that was truly amazing.

I’m sure all of you who have or have had a family member diagnosed with this terrible disease can relate to the experiences that we all go through. The utter disbelief when the doctor asserts his diagnosis. The helpless feeling that overcomes you when you realize that there is no cure – and the equally nauseating feeling you feel when you realize that the disease is sporadic with no cause. With some terminal illnesses, there is some underlying cause, sometimes remote and sometimes fairly direct as in the case of a lifelong smoker contracting lung cancer. With ALS, there is nothing. As a result, you question your faith, question statistics, question the medical system. But, there’s nothing. No hope, no cure, just nothing. Even some cancer patients have doctors that at least get your hopes up by telling you that chemo or radiation may work – here, there’s nothing. The neurologist starts discussing "end-of-life" steps. You are simply waiting around until the end.

That’s when your mind and thoughts spin out in a frenzy. Google becomes your best friend and worst enemy at the same time. You surf the web in an effort to understand what just happened and what lies ahead. But of course, there’s no solace. You feel guilty everyday because you cannot stop thinking about what life will be like when Dad’s not there. You begin the upsetting task of getting his affairs in order and trying to talk to him about his wishes.

The deterioration is the worst part. Mostly because it’s so nebulous – you don’t notice it on a daily basis. You see it as the weeks and months go by. It’s only after the fact that you begin to notice that Dad stopped driving at this time, stopped talking at this time, and stopped walking at this time. That’s the other horrible thing about ALS is that it robs you of all your memories of that person before the onset of the disease struck. Right before my Dad passed away, I thought to myself that I didn’t remember the way my Dad was before the disease hit. Looking at pictures of him even now, it’s hard to imagine that he was in fact so full of life before because all that gets embedded in your head is the sickness.

Unfortunately for my Dad, his breathing muscles were the first to be affected and of course kept rapidly getting worse. You curse your education because you know after reading all the literature exactly how death occurs. My Dad’s was no different. He developed a minor respiratory infection which we thought antibiotics would help. Two days later, he couldn’t breathe at all without his Bi-Pap machine and so I called the Ambulance right away. Again, you curse your education because I knew what was coming … I knew that this would be the last time he would leave his home.

Two days later in the hospital, my Dad still could not breathe on his own and months earlier made his intentions known that he did not want to live life on a ventilator. He was in a lot of discomfort and the doctor advised us that the Bi-Pap was essentially a form of life support. We knew that this was not what Dad wanted. As such, we made the painful decision to have the doctors remove his mask.

We all held his hands when the morphine was administered and the mask from the machine was removed. Within three minutes, he breathed his last breath and drifted away without ever opening his eyes. The whole process, minute by minute, is etched into my brain - of course, thinking about it wells my eyes with tears every time.

Like many of you on this forum, I struggle everyday with grief and guilt, but at the same time, I am comforted by the fact that my Dad exited this life on his terms and at peace.

My condolences to all of you have lost loved ones from this terrible disease.
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,583
Reason
PALS
Country
US
State
MA
I'm so sorry for the loss of your Dad. Thank you for your eloquent words, your love is shining through.
 

ottawa girl

Very helpful member
Joined
Jun 14, 2012
Messages
1,506
Reason
PALS
Diagnosis
04/2012
Country
CA
State
Ontario
GK,

You are a magnificently gifted writer. Thank you for sharing your story. Guilt is the last thing you should be struggling with; you persevered in ensuring your father died with dignity, as he wanted. You were brave and loving to honour your father's wishes. You are a testament to his achievement of raising a good son.

I hope that memories of his ALS journey will soon be replaced by those of your happy, robust and loving Dad.

Wish you peace.
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,640
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
Well put!
So sorry for the loss of your father.
 

cervus

Senior member
Joined
Mar 18, 2011
Messages
923
Reason
Lost a loved one
Diagnosis
11/2010
Country
CA
State
AB
You were very articulate in expressing your love, feelings and care for your father and about what you're going through now. I do think the best way to get through this awful disease is to educate yourself as much as possible. You did that. Thoughts of your father in his sick times will slowly be taken over by your dad before ALS. And they may switch back and forth. And remember he will live on in your heart, always. You are a part of each other. I wish you thoughts of peace and calm. Yasmin.
 

DeansWife

Distinguished member
Joined
Oct 18, 2011
Messages
196
Diagnosis
08/2011
Country
US
State
AL
Thank you for sharing with us. You have expressed in your words what I could not say. Being a caregiver is a difficult task and I now try to reflect back to the time when my darling husband was not affected by this terrible disease. Sometimes it's easy, other times it's hard. I hope you can find your before memories and cherish them. Love and peace of heart to you.
 

cubcake

Distinguished member
Joined
Jul 18, 2011
Messages
270
Reason
Lost a loved one
Diagnosis
10/2011
Country
US
State
Ca
I'm so sorry for your loss. I can see, even before my husband's passing, how right your words are. I wish you peace and comfort.
 

dldred

Senior member
Joined
Mar 31, 2009
Messages
529
Reason
Lost a loved one
Diagnosis
03/2009
Country
US
State
NY
I am so sorry for your loss and can relate 100 percent to what you wrote.

Dana
 

sallyb

Active member
Joined
Jul 19, 2011
Messages
58
Reason
Loved one DX
Country
Ire
State
Ire
Very sorry for your loss. You have articulated the internal struggle everyone here has gone/is going through. It is so true re thinking of the 'before' - any time i come across old photos it feels like different people in a different lifetime. Wishing you and your family strength & peace.
 

Compass Rose

Distinguished member
Joined
Jun 20, 2012
Messages
133
Reason
Loved one DX
Country
US
State
WA
GK, I am very sorry for your loss. Honoring your father's wishes was an incredibly brave, selfless act. Please do not feel guilty. You did the most important thing you could have to help your father.

You so poignantly put into words much of what I've been feeling since my brother's diagnosis. You are so right that Google becomes your best friend and worst enemy.

I hope that in time, your recollection of your father during his illness is softened by your happy memories of him.
 

GK62

New member
Joined
Jan 22, 2013
Messages
2
Reason
Loved one DX
Country
CA
State
BC
Thank you to everyone for their kind words, well wishes, and condolences. My post helped me deal with some grief I have been experiencing over the past couple of days. I hope others find some solace in it as well. I wish everybody all the best.
 

lynster

Distinguished member
Joined
Jun 12, 2008
Messages
128
Country
US
State
OR
Your words are true and heartfelt. I understand all of what you went through. My prayers and thoughts are with you. May you find peace.
Lynn
 

mj95

Active member
Joined
Jun 9, 2012
Messages
34
Reason
Lost a loved one
Diagnosis
06/2012
Country
US
State
NY
Sorry about your dad passing. ALS is terrible. My dad passed two weeks after being diagnosed w/Bulbar ALS. My dad also stated he didn't want to live on a vent. My dad passed the same way your's did. I'm glad my dad had a choice with how it would/could end. The disease stole everything from him so quickly. No longer able to sing in the chorus, couldn't drive anymore, no more going out to eat. Everything that kept him going was gone. My dad was so strong, he seemed so accepting of his fate. He went peacefully w/ my mom by his side. We all got to say goodbye. He now no longer suffers. There is no positive outcome from ALS but if you (PALS) could have some control of the end, I think it is a blessing.

I hope you are able to find peace. I knew it's hard. It has only been 6 months since my dad passed. Somedays it hurts like hell but I remind myself that he is not suffering. You will get through this.
 

mimi0264

New member
Joined
Jan 29, 2013
Messages
5
Reason
Loved one DX
Country
UK
State
Wales
Thank you for sharing this with us...like my father too he recently passed away. I don't think there is anything worse than this illness, many doctors have said that this is the worst and cruelest it can get. I believe your father is in a better place now, he is not suffering anymore he is at peace and a big thank you to you who stood by him and took care of him. I wish the best to you.
 

pscheffel

Distinguished member
Joined
Apr 13, 2012
Messages
145
Reason
Lost a loved one
Diagnosis
12/2011
Country
US
State
Tx
GK, your post was very similar to the way my Mom's final days were. I know your pain. I am very sorry.
 
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