My dear dad....

[Enrique]

Hello to everyone,

I've been reading these forums for more than 3 years now, but I wasn't brave enough to post... and I don't know why I feel that today is the day to do so...

My father was diagnosed with ALS in 2009, and he passed away on June 25th 2011, more than a year ago. This last year I decided to keep my mind away from anything related to ALS, I wanted to move on, to go back to my normal life. But the thing is that I've realized that ALS is part of who I am, and as much as I hate it, it will always be the reason why my father is no longer here with me.

Me, my brother and my mother took care of him from day one until the very last. All I can say is that my father accepted this disease and never got angry at God, or life, or us for that matter... he worked until the last day he could work, he spoke until the last day he could, and he ate until the last day he could swallow. It still breaks my heart to remember how he went from being the most energetic and active person to a man that had to spend the entire day in his bed watching T.V.

I can only say that he is and he will always be my hero, and so are all of you who are bravely fighting this monster. You are all in my prayers and I know that my father somewhere is also looking down on you....as I type these words I still can't believe that he is gone, at 51 so young... and he leaves me at 22 alone in this world...I guess I just want to say thank you to all of you, coming here and reading you was a blessing, and knowing that we were not alone in this fight was a gift from god...

My heart goes out to you, thanks for reading this
Enrique

 

[ottawa girl]

Enrique, your post brought stifled tears to the surface. You have a great family, and yes, I am quite certain that your Dad is not only standing beside you, he watches you with pride and love.

While he did pass away at young age, his legacy is a great one: you and your brother. A testament to him. His ALS journey has armed you with the most valuable lessons and essential tools for living a meaningful life: love, patience, respect and tenacity.

Thank you for sharing your remarkable Dad with us.

 

[momap53]

Enrique, I'm so sorry for the loss of your father and hero. How wonderful that your family was able to stand together beside him on his journey with ALS.

 

[joni51]

Sounds like your dad was a wonderful man and so blessed to have you..

 

[Miss]

My husband died on August 22, 2011 at just 50 years old. He left behind a 17 year old son and a 19 year old daughter. More importantly, he left this world with incredible faith and outstanding courage. He was the bravest man I have ever known. You are not alone. You have your mother and brother. You also have the memory of your father and the example of true strength of character. That is a legacy you can carry forward in your own life. Remember, the forum has a thread for Past Caregivers. You always have a place to share your thoughts there. Best wishes to you and your family.

 

[Ms. Pie]

Dear Enrique,
Your love and respect of your Father and pain at his passing is heartbreaking and beautiful. May God comfot you in his love. God's bless you and all who love him.

 

[Amy Perdomo]

Enrique - your story made me cry, i am going through the same thing with my mom, she was diagnosed 9/2011 and today she is unable to talk, eat has FTD , and also is loosing alot of her legs and arms, my mom was so energetic and like your dad all she can do is sit all day and watch tv...its devastating to me, and i wish i had someone telling me how the end will be, is it far, is it near.....i hate this disease....
god bless you and your family !
Amy

 

[pscheffel]

Enrique, My heart aches for you. You are young and your Father was young, I am so sorry. This is a monster of a disease. Good of you to join this forum and grieve with all of us. You are in my thoughts and prayers. I will also lose my Mom to this disease all to soon, she is 54 right now and dwindling daily. Take care.

 

[Enrique]

Thank you Ottawa girl, momap53, joni51, miss and Ms. Pie for your kind words, it really means the world to me to have your support...

To Amy Perdomo, the only thing that I can tell you is that me and my father talked about how neither of us wanted the disease to completely stop him from moving and still doing some stuff on his own... And I have to tell you that God listened to us, one night he said he was finding it hard to breathe so we took him to the hospital, a few hours later they told us we could go home... we got home at 1:00 am, and I remember going to sleep crying asking God one simple thing, I told him that if my father was going to see the day that the cure of this disease would come out, then he should remain with us, but if he was to be here getting worse and worse just to end up dying I rather have him in heaven....2 hours later my mother woke me up saying that my father was passing away, and that's how it happened, he went away in peace, no signs of suffering in his face at all...

To Pscheffel I can only tell you to carry on, I know it's hard, but it is really important for you to be there, trying to put on a fake smile even though all you want to do is cry... tell your Mom how much you love her everyday, I sure did and it is something that always puts a smile on my face when I think about it...

All I can say to you all right now, is that a year and a half ago my only wish was for a miracle to cure my father, today my only wish is to wake up to hear the news of someone finding a cure for this disease, and I believe that that day is not far at all... I keep you all in my prayers and if you have any question don't hesitate to ask me....
Enrique

 

[corbster98]

Enrique,

Thank you for sharing your story. It brings tears to my eyes, as my Dad is also my hero and has been diagnosed with this horrific disease. Like you, I don't post too often on the forum, but rather read the posts daily for wisdom, encouragement, strength or just to feel 'not alone' on this journey that so few can understand.

My Dad no longer has use of his arms/hands and his breathing has been very compromised to the point of having not only a bi-pap but also recently underwent surgery for a diaphragm pacer. He is still able to use his legs, though he has no energy and gets out of breath just walking to the restroom, which is right next to his recliner. He also sits and listens to music or just watches tv most of the day. It is definetely heartbreaking as he, too, was so energetic and a man that loved to tinker and fix up anything around the house/garage/etc... I miss his hugs more than anything in the world I can still put his arms around my neck, but it just isn't the same. His voice is starting to go and it is just so hard

Thinking of you and the amazing young man you are.

Allison

 

[mysticunicorn66]

Sorry for the loss of your Dad. I lost my sister to this beast almost a year ago. I know that ALS changes people. I pray for you that the lessons learned on this journey and the love your Dad had for you (and you for him) leave a positive effect on you, in that you take the love, patience, and caring with you and share with others who are in the midst of the storm and give them cyber-encouragement to face each day because we know how incredibly hard it is to face this and then feel alone in the journey. ((HUGS)).

 

[Chase_Corin]

Enrique,

ALS is a part of us all.... it's like living through the disease ourselves except though a mirror. My father was diagnosed in 2010 but had been ill before that for a few years. I can only imagine how you feel because each of our experiances is different. My father just passed on October 31st, exactly 1 week ago today. He was burried on his Birthday (Nove 3rd).
My mother and I were his caregivers and now it is practically unbearable, there is nothing that needs doing. Dad was the center of all of our activity so its a feeling of wondering around without a purpose.
The morning he passed we had gotten him up, the nurse helped bathe him and the lady from the lab had come to take a bloodtest. I was about to head into town for a doctors appointment when mom called me into the living room where dad had been sitting in his chair. He was already gone.
I am fortunate that he was never compleetly bedridden, he was tired but he could still walk a little (shuffle is more accurate) but the day before he had said that he was ready go give up. We told him that we loved him but if he felt that it was time that we understood. Knowing my dad I thought he would have taken more time to decide but when he had a thought in his head he was determined.
My dad would have been 67 on his birthday so I am also relatively young.
I understand how you feel that you can't escape the umbrella of ALS, I have decided that I am going to try to help others with this disease and to participate in education and fundraising events.
I try not to remember my dad sick, I want to remember him as the man that put me in my swimsuit and let me 'help' wash the car as a 3 year old. Or when he was dressed in his forest fireman guear. This sickness takes so much from us and them that we owe them our good memories.

 

[wandabrittle]

So sorry for you lost. xoxo

 

[Toto's Dorothy]

Enrique,

What a wonderful son and caregiver you were for your father. You, your mother and brother are now angels among us. As I have always said, you cals have it more difficult. we move on and you are left behind. Please remember, your father is now whole again and you will see him again.

Sending prayers to your family,

Kimberly

 

[TeamDom]

I'm so sorry to you all for your losses. My thoughts are with you. You're not alone.
Enrique, You're so strong, mature, and selfless at such a young age to offer your word of support to those suffering from an awful disease that took your father from you at such a young age. You're father must be so proud.
I wish my brother who is nearly 22 had your strength. He went to college about 2 hours away this semester and he hasn't been back to visit my dad since. My dad calls and texts him and he doesn't answer him. He tells my mom (parents are divorced) that he won't visit my dad because he is scared. My father is heart broken as he is his only son. My sister and I are in our mid-thirties and we spend as much quality time with our dad as possible. My father told us he had a bad dream that he was searching for my brother but couldn't find him. Then he broke down crying. I've only seen my dad cry once in my life when he was healthy. I just want to shake my brother and say, "Be strong for your father, this isn't all about you!" He doesn't speak with my sister and me either because he knows we'll just tell him to visit or call. I told my mother to tell him that it won't be easy but he'll never regret it. In the end, my brother may suffer the most. I wonder if my brother will ever have a change of heart.
Hugs