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Markbreton

Distinguished member
Joined
Apr 17, 2006
Messages
102
Reason
Loved one DX
Diagnosis
02/2006
Country
CA
State
Ontario
City
Smiths Falls
I'm lying in bed listening to the hum of Tammy's bipap thinking "We need to wake up" this has got to be a nightmare. How could this be happening to my beautiful, loving wife. What has she done to deserve this hellish disease. I had to get up and write my thoughts! Please God take me, leave her alone! I've served overseas ond I've seen things many people would only dream of, yet this is affecting me/us more that all I've witnessed. I HATE THIS DAMN DISEASE! The love in my heart for this woman is beyond anything imaginabel. I cry thinking the life will be taken from her, I cry thinking my children will be without their mom, I cry thinking of all that she wanted to see and won't. I cry for all the people and families who have loved ones with this awfull disease and what they will go through. I thought I was strong! Damn I've been reduced to a weaping weak individual. My wife, the pillar of strength in my life, has more strength than I.
Tammy I love you! Lets wake up, let us all wake up from this hell and continue our life of love.
Sorry everyone, I was lying in bed with Tammy listening to her feeding machine and bipap and I could not sleep....thinking, thinking, thinking and realizing just how much I will miss her!
Mark
 

Marjorie R. Wilcox

Senior member
Joined
Nov 21, 2007
Messages
660
Diagnosis
10/2007
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US
State
New York
City
Richmondville
True Love will never die

Nope, she doesn't deserve it and neither do you. But you are fortunate to have a loving beautiful wife.... and children. Many people can't say that. You must and you will continue your life of love... whether or not she can stay with you. Your love will live on forever. And you will find the strength to be what you have to be and do what you have to do. Snuggle up to the Bipap and feeding apparatus and be glad they are doing their job. Show her your loving ways to the end. Tell her how you adore her and thank God for her. Let her know she isn't a burden. You are her angel of mercy. Your hands and heart will sustain her and your children. Hold her up to God and know you will see her in eternity without pain or suffering. Know that we here on the forum care about you and want you to share with us no matter how bad the reports. You have already done that from what I've just read. You are not alone in your pain. For me it is a privilege to care for my Rick. He not only has ALS but is fighting to keep his leg from an explosion this summer. Even with these problems, he is the finest man you could ever meet.... (and I must say, a great lover). He doesn't waste time feeling sorry for himself and just says that if he dies, the angels will sing, the bells will ring, and he'll go to a better place. We are about 60 years old and have been married only a year and a half, although we have known each other for 55 years. We grew up in the same town. This first year of our marriage has been tough, but we know and can prove that you can keep your heads held high. You have ALS but it doesn't have you. Let's hope!
 

trustinggod

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Joined
Oct 21, 2006
Messages
154
Reason
Lost a loved one
Country
US
State
CA
City
Lake Forest
Mark,

Reading your post sent waves of compassion breaking on my heart. You're a good man
and I can tell by the words you've written that you are also a strong man. Strong in the most important ways. Your wife is blessed to have you by her side. Your willingness to
be with her in her suffering is a rare and precious gift.

My friend had ALS for more than four years. She and her husband had been married for more than 20 years when she was diagnosed. He was a good man too and tried his best to be there for her throughout her struggle with ALS. I helped her while he was at work and sometimes when he needed to "get away". Towards the end (the last year or so) when things got tough and she got the feeding tube, needed help with toileting,
showering and all personal care he began to get very short tempered. Not at her he would say - at the disease. She wanted him to lay next to her and "just talk" or watch a movie or just be together. She wanted to talk to him about "later" and tell him things before she totally lost her voice. He couldn't do it. He said it was just too sad for him.
She knew he loved her and that he had done so much for her but it broke her heart that she had to keep so much inside.

He was not the right kind of strong. He let his fear keep him from being with her in her suffering. Don't get me wrong. I am not saying he's done anything wrong or that he wasn't a good husband. He honored her wishes to stay at home, built a great chair lift
to get her upstairs, changed all the toilets in the house to help with her growing disabilities and completely remodeled the bathroom. Physically he was able, emotionally he was not.

It's been 15 months since she died and he is doing okay but he's told me more than once "if only I had one more day I'd spend it lying next to her talking and listening and saying I Love You. How I wish I'd done that while I had the chance".

Trust God to give you His strength to endure this sad time and take advantage of the opportunity to say all things you'll wish you had.

I'll be praying for you.
Jeanne
 

ccox

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Joined
May 30, 2007
Messages
71
Country
US
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TX
City
austin
Oh Mark, I'm so sorry. I don't have any words of wisdom, just prayers for you both. I wish you could wake up from your nightmare too.
 

rick/Wpg

Distinguished member
Joined
Jan 4, 2008
Messages
149
Reason
Lost a loved one
Diagnosis
02/2008
Country
CA
State
Manitoba
City
Winnipeg
Our hearts and prayers go out to both of you! That is exactly what my husband and I have said to each other this morning when we woke up! "Oh God, let us wake up from this bad dream!, this can't be happening to us!" My husband Rick was just diagnosed last Friday. We are in shock and are noticing all kinds of body changes within days...and it is happening so very fast!

My husband is 55 yrs old, and we will be married for 10 years this August. This is our second marriage and can't believe how happy we are together! We are a very snuggly, lovey, dovey kind of couple. We start every morning snuggling in bed and having a cup of coffee together, laughing and talking about the day ahead. We do everything together.

When you wrote of listening to the machines doing their job as you lay beside your wife. It just tore in my heart! I too will be laying by my husband Rick someday soon in the same way and listening to the hum of his machines and I am horrified at the thought of seeing him that way also. I can't even imagine the pain and heartache and what you are going through right now watching the love of your life in this way.

We know that it will not be by our own strength that we will be able to walk through this horrible thing!

We are praying for you!
Rick and Joan
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Mark, may God bless you, and your dear wife. I am so sorry to hear of what you and your wife are going through. I know the feeling. It makes you feel as if you are having a bad dream. I, too, felt the same way about my son as you are feeling about your dear wife. The thoughts that ran through my mind were unbelievable. I used to tease my son all the time about him being so close to 40 years old, well, he never made it. Mine would be a very long and sad story too, but I am not getting into that, because I have past posts that says most of it. I would become so depressed, and would ask myself, "Why is this happening to my son?", every time a new machine would be brought in to assist my son with his survival. It was so hard to watch him fade away. I no longer see him walk through the door, I miss his phone calls so much, there are a lot of things I miss about my son, but knowing the fact that he is no longer suffering comforts me. I hate this damn disease myself. Living your life to the fullest, and telling your loved one how much you love him/her, take trips (if possible), take pictures of your loved one, create an album, start you a journal, all of these would bring you so much comfort later on. I will be praying for you and your wife. This forum is a blessing! God bless!

Irma
 

ilovemymom

Member
Joined
Jan 2, 2007
Messages
14
Reason
Loved one DX
Diagnosis
10/2006
Country
US
State
Happiest Place on Earth
City
Big City
A Testament to True Love

Hi Mark-
As a daughter watching my mother's disease progress and seeing the pain in my father's face I read your words and am so moved by the love you have for your wife and children. I see my parents as not just my parents anymore but two people who love each other unconditionally. Through all of this pain, I am forever a better person having witnessed what real love between two people looks like.
 

allison926

New member
Joined
Jan 30, 2008
Messages
2
Reason
Loved one DX
Country
US
State
MO
City
Washington
I am sobbing reading all of the posts on this thread. I spent the day with my Mom today and was very upset by the progression but I guess at this point I should be greatful we have not progressed to machines. I can not imagine what the future holds and I do not not know how much we can all handle. I want to believe that God never gives you more than you can handle but I feel so helpless. I am having a hard time with balance between spending every moment I can with Mom and continuing on with my life. It does feel like a dream. Sometimes it is hard for me to understand why the world has not stopped.
 

Barbie4

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Joined
Mar 26, 2006
Messages
139
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CA
State
Ontario
City
Everett
wondering.

I just read your posts and felt I needed to respond. It was just last Friday night when I sat beside Gail and watched her as she slept. She fell asleep as we were watching TV together and I watched her every breath go in and out and in and out, thinking to myself, how precious it was to see her breathing. Sounds weird, but I also felt to myself, why her, is this a dream? How much longer do we have? How lucky I am to be here.

Jeanne gives us a glimpse into what could be the future as she is 15 months into the grief of her loss. Will I have regrets? Will I have made the wrong decisions when I have struggled to balance my life, my family's life and my dedication to Gail and her family? No, so far I am sure No. Every day is a struggle. Every day brings new challenges.

Every day we find the strength from wherever we can, to do the best we can for our loved ones and for ourselves.

Barbie
 

Markbreton

Distinguished member
Joined
Apr 17, 2006
Messages
102
Reason
Loved one DX
Diagnosis
02/2006
Country
CA
State
Ontario
City
Smiths Falls
Thank you all for your kind words. I never thought that I could HATE as much as I do. I hate this disease and everything it brings with it.
I also constantly struggle wondering if I'll make all the correct decisions regarding care. What's right, what's wrong. There is only so much I can give and I feel it's not nearly enought. I've been married to Tammy 2 years this April and I've known her 5 years. Had I met her 30 years ago we wolud have had so much more time together. How can I love someone so much and have her for such a short period of time. I keep hearing that God will not give us more than we can handle. Maybe he erred in my case because I'm finding this all extremely difficult. Everytime I look at Tammy I keep seeing a beautiful woman who has been given a death sentence.
All the silly problems we had in the past now seen so darn trivial......
Mark
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
I also constantly struggle wondering if I'll make all the correct decisions regarding care. What's right, what's wrong. There is only so much I can give and I feel it's not nearly enought.

You are right that this disease is bigger than all of us. But I am sure there is no "right" or "wrong" way to cope. Your love shows through all you do and I am sure your wife and family feel it. Hugs, Cindy
 

hearts_and_thoughts

Active member
Joined
Feb 6, 2008
Messages
56
Reason
CALS
Country
US
State
OH
City
Burton
Mark, You remind me of how my sis had her wonderful husband to help her through. It was very comforting to know that my sis had been very happy for 20 years with that man and they travelled the world together. Your shared love is a legacy you will leave your children, family and friends to forever remember. There are many people that will never experience that kind of love. I can't come close to saying anything as appropriate as already has been said to you in this thread.

Peace be with you,
Mary Jo
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
allison, I am so sorry for what you are going through. Believe me, God will help you through this. There will be times when you are going to hurt bad, and cry a river, but you will feel His arms around you. What I mean by "You will feel his arms around you," you will find a time to cry, a time to pray to God to give you strength, at times you will feel so lonely. At the blink of an eye you will feel comforted some, enough to where you will start accepting your loved one's fate, because deep down you know that there is NOTHING that can be done. Try to prepare yourself, it will be hard to do so, but it must be done. When my son was still alive, I used to lay in bed, and I would picture myself at his funeral. There were times when I would actually cry as I was thinking about it. If you do this it will take you a long way when the time comes. It is like rehearsing a play. I may sound nuts, but it's true. We talked quite a bit about how he wanted his funeral. We let him know that there was going to be music, to remember him by, pictures of him on display at the funeral home, eulogies from friends and family. He liked or ideas, and sometimes he would suggest something else, and it was done. God is with you, and your loved one. He will take such good care of you. He knows how much you can take. When the mortician came to oue house to collect my son's body. They closed the door to my son's bedroom behind them to load him up on the gurney. One of them came out, and said to me, "Are you sure you want to watch this, because it's going to be painful?" I said, "I'm sure." He went back inside, the door came open, and my son's body, covered, was being carried out of my house. I got up, and followed behind. I followed it all the way to the hearse. I leaned over, and kissed his body, and cried of course, and said to my son, "May God bless you. I love you son." Off they went. A half hour later, it was raining cats and dogs. I have never heard such thundering. It was thundering hard. That is how my baby left. Our Father has really given me a lot of peace and comfort. I will be praying for you, and your sweet mom. Sorry for the long post! God bless you all!

Irma
 
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