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May 31, 2008
Loved one DX
Hello all!

The past few weeks have been incredibly hard, and as a result my mother suggested that I seek support from others who understand this terrible disease. My father was diagnosed in October of 2005. He had just turned 50 and began getting arthritis symptoms in his hands. In January 2006 I moved from New York (where he and my mother still live), to live in Colorado.

Since that time I have been able to get back to see my father every 2-3 months, but each time his decline is more noticeable. He served in the United State Marine Corp, and is as tough as they come - 6'2" and 250 pounds, with the heart of a lion.

Currently, he has no movement aside from the blinking of his eyelids. He has opted not to have a feeding tube and drools uncontrollably. I can see the emotion in his eyes - he can sometimes groan to express approval or discontent.

Recently he spent a week in a hospice care facility while my mother took reprieve from caring for him constantly, and she came to visit me in Colorado. When she returned to New York my father had been neglected in the facility and had multiple infections and bed sores that are still healing.

Since that time I believe my repressed feelings on the entire situation have come to rear their ugly head. My ability to be strong for my family has ceased to exist, and depression has hit very hard.

I am 23 years old.

My boyfriend of almost five years has been with me through this entire ordeal from diagnosis until now - the moment at which I knew he was the man for me was when I saw him taking care of my father as if it were his own.

My relationship with my father was never perfect and since his diagnosis I made a point to make amends with him, but now that he is near the end of this horrible disease I find myself wrought with anger. I've had more than one screaming match with God (the arguments are always on-sided), and I think more and more about the days when I would want my father most - my wedding day, when I have his first grandchild, etc.

I'm sure there are others losing their parents. How do you reconcile this grief?

Welcome to the forum. you are among friends here who are experiencing many of the same feelings. I too am a victim of ALS. I was diagnosed May 11, 2006, and since that time have lost the use of my legs and my arms are going fast. I can identify with your Dad. He is blessed to have a wonderful daughter like you who loves and cares for him as you do.

How do you reconcile this grief? I do not think you ever get over it. You can learn to deal with it over time. I understand your anger with God. I also think that He understands it more than you will ever know. I'm not trying to get preachy on you, just saying I have VENTED myself at God over quite a few things in my over 61 years of life. The only comfort I get is from reading His word and trying to understand from it what the meaning of life is all about. I think of the Bible as the manufactures handbook for me. It tells me all I will ever need to know about why, how, when, regarding life, and most of all, death. We all have to die of something, sometime.

I know it sounds weird, but I am glad I am dying of ALS. WHY? I have time. If I died of a heart attack, car wreck, etc. I would not have the time to make things right in my life. Just as you said, " My relationship with my father was never perfect and since his diagnosis I made a point to make amends with him".

I thank God that you had this time, and still have time to love him and let him know it. Even though he cannot speak, he will love to have you sit and talk with him about your life and fun things you did together in the past. His mind still is working, it is just trapped inside a body that no longer works. Please, when you spend moments with him, share with him the memories of the good times.

Many people do not know what to say when someone reaches this stage with ALS. Hey, we are so hungry for company, say anything. Just please do not ignore him. He needs the comfort of family and friends now more than ever. I know. I am in the same position just not as far along yet. It hurts when people ignore you.

I pray that somehow you can find a place of peace in the midst of these trying times.
When I visit with my father I know that he cannot speak so I try my best to tell him stories of how my life is changing - his greatest pride in life is my brother and I. He loves to hear about my new ventures with my job, and going back to school for a graduate degree.

I find that many people are uncomfortable around him because it's very hard to adapt to a one-sided conversation style. I've learned to ask him yes and no questions... at times, I see visitors sit beside him and try to converse with him back and forth and they get nowhere.

At times my mother and I have discussed how it would be different if he died instantly of something, as you mentioned. The tradeoff is time to say goodbye, but the downside is the time to watch him fall apart.

My mom is 59 and seems to be at the same stage as your father. I had been living in Jersey City, and them moved back to Minnesota to take care of my mom full time (my parents are divorced, so unfortunately, no full time live in spouse). My mom does have siblings near by, as in blocks away, but I don't see them very often. They'd been so close their entire lives and now I'm lucky to see them every week or so.

My brother lives in Breckenridge, CO and comes home every four months or so to visit. I'm sure he has the same experience that you do. You see what's happened over the course of months, whereas your mom sees the slow decline day to day.

For me, the fear has always been about what's next. My mom has refused a feeding tube and over the last couple of months has slowed her eating down to a crawl. I'm lucky if I get her to have one third of a yogurt and some V8 juice each day. I understand what you're saying when you see in their eyes that they're uncomfortable, or upset. For my mom, it's always about having to move her every couple of minutes, lest her tail bone push through.

I've found great comfort in reading what people write about their experiences here, even if we never actually hear EXACTLY what our own experience is. I guess that's the crap deal with ALS. We want to know what to expect, but it's never exactly what has happened to someone else. Good news is you're not alone. We're all in some sense winging it. Our hearts break. We think everyone else is doing it better than we are. But we all do the best we can.

You're in my thoughts!

Your mom also opted out of the feeding tube, eh? In some respects I can understand why my father chose that route. From the moment he was diagnosed he said he didn't want any machines to be hooked up to him (he has a catheter now, but that's it), because it would just prolong things.

I always try and figure out what's next by calling my mom. I ask her "do you think it will be this week"? The reason I've been so emotional lately was because I got a call about a month ago and my mom said, "You had better get out here in the next 2 weeks. I think it's time". My dad has his good days and bad but he had so many bad ones in a row that my mother wasn't sure he'd make it through the night.

I think he's waiting for some sort of confirmation that we'll all be okay without him, which is why when we visited I made a point to reassure him that I would care for my brother and mother when he's gone. I just feel like he's holding on, continually suffering, but not for his own sake. We've discussed the fact that we're ready to let him go, but I suppose there's no good way to tell someone, 'Alright, you can die now'.
Hi Al, although your post is not directed to me, I hope you do not mind my replying to it. That is such a good post, so well meant! Everything that you stated makes sense. I read the part where you said you are glad you are dying of Als, (ooops! I am so sorry, but is it wrong for me to phrase it like this?) I am not trying to say there is no hope, but with faith in God, anything is possible! He moves mountains! HE CONTROLS EVERYTHING! My son once told me that people that die from an incurable disease get a chance to spend time withtheir loved ones, and say their good-byes. He would always tell me, "Bad is when you die of a massive heart attack, or a tragic accident! Bad is when you are up in the air on a plane, and it crashes. Bad is when MAN walks up to you, robs you, and kills you instantly." He would always tell me that he felt that His Father was taking him on His terms, and he was happy with that. He never showed any anger or fear. By the way Al, yesterday we had a special Mass given in his memory, and it turned out beautifully. Tomorrow marks the day when he passed, and that day means the world to me. God bless you all, and God bless you Al!

For those of us who don't have such strong religious beliefs I think that explaining this and understanding the reasoning for it is much harder. Knowing that there are bad people out there who are living long lives is mind-blowing. I'm not saying that those who have ALS are martyrs - my father certainly isn't perfect.

What truly boggles my mind is the fact that the research that will help to CURE als is often times not accepted by many large religious entities. I suppose that's not a topic to discuss here, but I've been struggling for a long time now to find faith because until I do I don't know that I can really accept the fact that this disease is so random and so merciless.
Irma, thanks so much for your comments. I have no problem with how you phrase anything. This process of living with ALS, has been quite an experience. It has given me time to reflect not only on my relationships with others, but my relationship with God, or my lack thereof. My faith has been tested and I am definitely no saint.

They use to say in the Military that you find no atheists in foxholes. I guess that would kind of apply to someone who knows they are dying and about to face the unknown. Each person has to work this out for themselves. I can only share what I have experienced.

I have been close to death many times. I have had my heart stop due to a drug reaction after surgery, morphine. I have had a heart condition known as WPW that causes the heart to go into fibrillation. I had surgery for this and during that time had a heart attack. Many times I have been near death. I feel prayer and my faith have brought me through all these experiences. Why? Only God knows. Part of believing in God to me is resting in the thought that He has a plan for my life and is in control.

I cannot in a paragraph, or single post express what it has taken 36 years as a Christian to learn from the bible and from my many experiences. I wish I could put it all in a pill, I could give away for free to all those who need help to get through everything they are facing. To somehow increase their faith and trust in God. However, there is no magic pill.

I could quote some of the scriptures that have helped me have faith in any situation, but these spoke to me. Only God knows what will speak to you. Maybe, just maybe if you find some quite time and tell Him how you feel from your heart, He will help you get the answer you need.

Please understand I am not talking down to you, but just sharing as a fellow traveler what is in my heart and how it has helped me get through this turmoil.

I pray for all those on the forum who need an answer, who need their faith lifted, that somehow God will answer and meet you right where you are at this time.

Peace to you in the midst of the storm.


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