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Mar 1, 2006
I wish my mother had this site when my dad was diagnosed with ALS. She did so much on her own. It is good to share and communicate regarding this disease. My father was diagnosed in 2002 although he had signs in 2000. He passed away on 2/5/06 I am hoping to find someone who knows what I am experiencing right now. It is still so hard. I will say this, my father received more love in the last couple of years of his life than most people get in a lifetime. As a family we grew individually and towards each other. I am not saying that this disease was a blessing but I do believe a lot of good did come out. Right now I am struggeling to sort out the grief, sadness and anger. If anyone would like to share please email me at [email protected]. I don't want to discourage anyone. I do feel a lot of attention is on this "orphan" disease and that a cure or treatment is SO CLOSE. I will continue to volunteer with my ALS assocation and do what ever I can.
Dee, I wish I knew the right words to say to you. I am so sorry for your loss. My husband has this disease. Every moment in the day I feel the grief of seeing my husband be so ill. I cannot imagine what you must feel like. I came to this site to give and recieve support and have found the people so wonderful, so kind, so caring. This helps me so much. Please know that you are not alone and all of us here do care. Reach out and let others help you through this painful time.

Hi Dee,
We almost lost my dad on 2/7/06. It was the scarriest night of my life. I had to tell my dad "goodbye" on that night, and it was the hardest thing I have ever had to do. I feel so lucky that he pulled through. He is now on a ventilator and a trach, and I just hope he will be happy with the quality of life he has left. I am so sorry that you lost your dad. I know what it was like to feel like I was going to lose my dad. I felt empty, sick to my stomache, and wished I had done or said more. Your feelings of anger and saddness are probably more than I can comprehend right now. I pray that it will get easier for you. I dread the day that I have to say goodbye to my dad again. It sounds like your family really pulled together and I bet your dad was thrilled about that. There is nothing more important than being around your loved ones. That is what life is and close friends. My family was already very close, but over the last few weeks, we have bonded more and relied on each other. Stay strong, and continue to get support on this forum. If you feel the need to cry, vent, or ask questions, this is the place to do it. God bless you and your family.
Hi Dee. I am sorry for your loss. It is unfortunate that Carol Deboer has just left for a well deserved vacation. She lost her husband of many years last year and while I know it is not the same she has many words of encouragement for those uf us that have suffered a loss.
I hope as the days go by you will not hurt as much as you do now. It is not easy but you sound like a courageous fighter and you have family to depend on. Take care.
Thank you everyone for your kind words and encouragement. I know times will heal my broken heart. I am just happy to have found this site. They are not easy to find. I feel such a close connection to people who are touched by ALS. I know that those with the disease and those who care for them are such special and beautiful people. Finding other ALS sufferers helps me to realized that this did not only happen to my family and that I am not alone. It just get hard because my dad was the heartbeat of my family. I miss him terribly every day. Some times I feel okay and the next I am weeping. I hear this is normal with grief.

Dana: I am sorry to hear of almost losing you dad. It is a scary thing. It happened a couple of times before my dad finally gave up the fight. I guess all we can do is love love love and them some more! I loved my dad so much and was able to tell him that all the time. I loved to lay down next to him and read to him or hold his hand. Even though I know the quality of his life wasn't too great, he was still with me. Letting go is so hard.

Thanks again everyone for your support. I know this site will help me get through the grief.
Hi Dee:
I lost my wife to ALS almost 6 years ago and for 4 of them had difficulty getting all my ducks in order. A few years ago I came across this site with guys like Fisher, Carol and Downtown Johnnie who got me back in touch with the nutbar caregiver that my wife came to depend on for 4 years of her brief life. It has helped immensley to balance my life even though Carol has joined the ranks of the caregiver survivors, Fisher ran off and got married and sits now on his deck enjoying what he likes ... and Downtown joined my wife over a year ago.
Stay tuned... this is a good place and most of the people are a well meaning, spirited bunch.
Hi Guys,

Tommorrow, March 14, 2006, will be the one year anniversary of my dear Henry's death.

Has this been an easy year? Well, let me walk you through a short glimpse of what it has been like.

The morning Henry died was one of the most mixed up emotional days I have ever experienced in my life. My first thought was anger. I was mad that he died on me. He had been sick for so long that I thought that he would be here forever. And the, I felt enormous relief. Not for me, but for him. He fought a long hard battle and I was so proud of him. He finally was getting his final reward and rest. Glory to God.Of course, going through the funeral and the next few weeks were a fog. So much to do, and not a clear mind. It was confusing, scary, I was alone, and I did not chose to be. Everyone was so kind and helpful and caring, however, I could not think straight, sleep, eat or even talk right. I was a big puddle of grief. I was not Henry and Carol anymore, I was just Carol. I had lost half of my identity. I had lost my husband of 25 years. I did zero in on taking care of my kids. They gave me peace and purpose.

I went back to work 3 weeks after Henry died, maybe too soon, but I felt myself slipping into a depression that was scary, and I felt that I needed the safe place of work and to take my mind off of things. Of course, your mind is always thinking and reliving the past years. I relved the day he died and the funeral over and over. I willed myself to think of other things, but, I guess it was part and parcel of what I went through over the years.

On May 30, I celebrated our 25'th Wedding Anniversary all by myself. I know that Henry tried to hang on for it. I sat on the deck, drank a glass of wine and thanked God for giving me a wonderful, loving man. He loved me so much and worshiped the ground I walked on. He was funny, kind, giving, hardworking and did not deserve this fate. But, again I am so grateful for having this wonderful kind of love.

The summer came and went. I do not really remember much of it. I went to the trailer lots, and sat by the fire and wished my Henry was sitting beside me. He loved it there. He loved a campfire and a cold beer. We always had the biggest fire in the campground because of Henry.

Around the end of October first of November I came out of shock and had to face reality. It was a big shock, for the first time I really knew that he was not coming back to me. Of course, he is with me every day, but the loneliness really started to kick in then. I dreaded Christmas, Henry loved the holidays. He loved entertaining around the holidays and loved surpising me and the kids with wonderful presents that we would never have expected. The look on his face on Christmas mornings was something that I will always remember.

We decided to have a New Years Party to celebrate the new beginnings in our lives. We had all of our close friends and family over and we had a great time. It was time to let the healing take over for us and stop trying to heal. This was going to be my year. This year is the year that I will focus on myself. It has been so long that I have indulged myself little luxuries. Henry wanted me to "get on with it" and so, I am trying. Am I doing alright? Sometimes. When I have a bad day, I think that he is doing much better than I am. He helps me, you will find that your loved ones are always with you. I feel him when I need him most.

And so, I looked forward to my trip with my sons. It was a long overdue holiday and we had a blast. It was so good to laugh freely, feel the warm sun, and relax. I know that he would have been so happy that we did this, and he requested that I take the boys and go someplace tropical. And that we did. We had a safe trip, with our angel looking over us.

You never get over it. You never stop hurting. You never get over losing the one you love. But, it does get easier. Little things still trigger tears. But they are the wonderful reminders of our love. A love that will never be replaced or repeated. Now after a year of my being alone, I am a stronger woman, more educated, and more at peace. I know that I still have a long road ahead of myself, but I see more clearly now and know that I have no regrets and hopefully will be able to help others going through the same things. There is no rules to grieving. It is a powerful emotion, and you just have to live through it.

I look forward to spring, my flower gardens, my trailer, the sun, and Henry will be with me every step of the way, everyday.

I have wonderful friends and family and they have been with me every step of this journey. Without them, I would have been lost.

Once again, I am so thankful for all the things I have, and for all the things I had.Taking each day at a time is really the key. Healing can take so long. I am on the road to recovery and know that I will be okay, but, I will never be the same.

As always .... Stay Strong

My love goes out to you all.

Hey Carol,
What you wrote nearly brought me to tears. I just forsee my mom going through the same thing you have been over the past year, I just don't know when my mom will have to go through it. It sounds like you and Henry had the kind of relationship that my mom and dad have. Not very many people have that kind of bond. My parents will be married for 30 years in August. Dad is 52 and mom will be 50 this summer. I always pictured them growing old together, and I know that this is something that will not happen. It breaks my heart. It is so good to hear your strength though. My mom is an unbelievably strong woman, and my dad is her rock. Through this process, she has had to learn to be his rock and I think it has shown her that she is stronger than she even knows. She is nowhere near ready to let him go though. I worry about her. I don't worry so much about dad because I know exactly where he will be going when he passes...with the Lord, and you can't ask for a better place to be than in heaven. I hope that my mom can be as strong and positive as you have been when the time comes for my dad to be with the Lord. Thanks for sharing your heart with us. It helps us more than you probably know.
Dear Carol,
Thank you for being a blessing to so many of us. Your kindness and caring shine through. I am glad that you are beginning to heal and can be thankful for the wonderful years with your dear Henry.
My husband and I have been married 43 years, and I will have to be the one to leave. He is strong and a wonderful caregiver, but I know how hard it is on him. But, we enjoy everyday as much as we can, one day at a time! (Lessons learned on this fourm.)

To Al, sorry you are having a down time, but you are allowed to. I hope you realize that you are a big part of the glue that holds this band of merry men together, and have contributed so much to keeping this forum going. Who else would spend days studying for a ALS predictor test!
Hi all-

I'm new to this site. I logged on for the first time last night. I lost my Dad to ALS 4/2/05. The year anniversary is coming.

I have been greiving for about 6 mths. The first 6 mths I was still in shock. We lost my Dad so quickly. He was diagnosed 10/05.

Carol- thanks so much for sharing your story. It really helps me. My parents 30th anniversary was last Aug. It has been so hard for my Mom to try to rebuild her life when she feels half of it is gone.

I have really been avoiding anything to do with ALS. I was trying to block it out. When I stubbled upon this site I can't believe how supportive and loving this forum is. I feel embraced. Some of the entries do make me upset. I feel like I'm reliving the horrors of the past 2 years. But for the most part I feel support. I can't belive how so many of you share my story. It feels good to know we're not alone.

I still feel in a fog and greif is hard. Some days are better than others, but I feel like I am slowly living again.

Strength and hope to all
My dad passed away 2/5/06 and I recently began going to an ALS support group. I never thought I would because I never wanted to hear thos words again. I also thought it would be a big boo hoo depressing group of people but it was wonderful and I truely think it will help me through the grief and pain. Being around other ALS patients and those effected by it has been very helpful.


Thank you so much for your experience. I see my mom going through a lot of the things you described. She and my dad were married for 43 years and knew each other sinec they were 16. I don't know Marie without Larry and Marie. It is like a new person to me. I see her struggle but tries very hard to act like she is doing better than she is. She can't sleep at night because it is very quiety now and she isn't used to being in the house alone. We had so many people coming and going, friends, medical personnel and a live in caretaker but now it is quiet. I know time heals all wounds but I do worry about her. Thanks for sharing your hopeful sorry. It help me feel that everything will be okay.
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