Old 01-10-2017, 07:48 PM #1 (permalink)
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Default My brother has been diagnosed. I can't cope.

My brother, who I adore and love very much has just been diagnosed last month with ALS. Though I had strong suspicions, it was still crushing to hear it as official. I am simply devisated. Devistated for him, devistated for his wife and kids, devisated for our parents, and least of my concerns, devistated for me. I bounce back and forth between hurt and anger over this.

My husband gets mad at me for saying this, but it seems as though it would be less of a tragedy if it were happening to me. My brother is such a good man. I can't ever recall him ever saying or doing anything mean to another human being. He is a hard worker, loyal husband, wonderful father, as well as the best son and brother one could hope to have. I feel blessed to have him in my life.

I am having trouble getting a handle on this. It seems as though it's progressing so quickly. In May he was fine....Then gradually there were signs something was amiss. As of today, he can barely walk, has very little use of one arm/hand, and the other is following suit. I can't imagine never seeing his contagious smile, and or hearing his voice. I just want to make the most of the time he has. I feel like I can literally hear his clock ticking, and the sound of it is killing me.

Of course, when I am with him, I am as upbeat as I can be. Last thing I want to do is give him cause to worry about me. I obsess over what I/we can do to make life more manageable for him. I'm constantly researching on all things ALS....Which I suppose is normal. I just feel helpless and it's as if I think I'm going to find the cure on Google....Which I realize it futile. At least with cancer, your are handed a pair of boxing gloves in hopes of winning the fight. But this.....There is no hope. Just surrender.

It's so painful to watch, and I can only attempt to imagine what it must be like for him. Just wish I could do something!!!

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Old 01-10-2017, 08:33 PM #2 (permalink)
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Default Re: My brother has been diagnosed. I can't cope.

I am so sorry you have to be here. My thoughts go out to you and your family. Everything you are feeling is perfectly natural. Its such a huge shock when they are diagnosed Give yourself some time to grieve and researching seemed to help me. I wanted Steve to have everything he needed for quality of life. You are a great sis and I am very sure you will do a great job.

I also wished this disease would have happened to me instead of my husband. But that isn't the plan so I just do my very best to take care of him. You cant cure him but there is a lot you can do. Being there for him will mean more than anything you can do. Letting his wife, children and your parents know that you will be there if they need you. Most importantly take care of yourself.

Warm hugs go out to you!
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Old 01-10-2017, 10:32 PM #3 (permalink)
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Default Re: My brother has been diagnosed. I can't cope.

Thank you so much. It helps just putting my thoughts out there, knowing it's read by people who "get it," although I wish you weren't in a situation where you "get it." Hope that makes sense. Sorry you and your husband have to go through this as well. Life can sure throw a mean curve ball. Hang in there!
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Old 01-10-2017, 11:48 PM #4 (permalink)
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Default Re: My brother has been diagnosed. I can't cope.

Oklahoma, your bro sounds like the kind of guy who'll live whatever time there is to the fullest, and I know you, his wife and kids and the rest of the clan will be by his side the whole time.

Give yourself time to grieve, be angry, and wonder why. That never completely goes away, but you can walk past it to the joys you will still find with him in the days ahead.

Best,
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Old 01-11-2017, 05:43 AM #5 (permalink)
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Default Re: My brother has been diagnosed. I can't cope.

I am so sorry to welcome you here. Your brother sounds like so very many of our PALS. Our RT told me she calls this the nice person's disease, because it seems to attack the very best among us. I also wish that I could change places with my husband. I take very good care of him, but I have no doubt that he would do even better by me. He is, by far, the better person. I don't say this to diminish myself, because I am a good person, but he is truely exceptional.

You are doing as I did, and after three years often continue to do. You will find a lot of misinformation, so I encourage you to come here often and ask questions. The folks here have a vast amount of knowledge and will help you seperate the truth from hype.

BIg hugs.
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Old 01-11-2017, 06:23 AM #6 (permalink)
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Default Re: My brother has been diagnosed. I can't cope.

let me start by saying how sorry I am that your having to go through this but you have come to the right place. This is a good place to vent and the information and advice you get here is priceless. My story sounds so much like yours. My brother has ALS (although he's not married) and sounds to be physically similar to your brother. He's even from Oklahoma and the Sooners are the light in his life when their playing. When I look back over this past year I notice their are stages. It gets easier in some ways but you will still have some bad days especially if your brother does. That's been my experience. You will be in my thoughts. Chin up.
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Old 01-11-2017, 06:55 AM #7 (permalink)
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Default Re: My brother has been diagnosed. I can't cope.

Elephantmom3, I am so sorry to hear about your brother. It is a devastating blow. Take one day at a time and put one foot in front of the other. Spend and enjoy as much time as you can with your brother. Make as many memories as possible. He is lucky to have such a loving sister.

You aren't too far from us. We live NW of Tulsa.

Jlynn, where in Oklahoma does your brother live?
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Old 01-14-2017, 06:59 AM #8 (permalink)
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Default Re: My brother has been diagnosed. I can't cope.

Hi Soonerwife, Mike grew up in Tulsa and moved here to NH about 13 years ago. My mom, sister and a lot of relatives all live in Tulsa, Broken Arrow or Edmond.
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Old 01-14-2017, 08:14 AM #9 (permalink)
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Default Re: My brother has been diagnosed. I can't cope.

I am very sorry to hear about your brother. Welcoming people here is a sad welcome, but the good thing is you will find a lot of support and understanding here. In my darkest moments, my thoughts have turned to how I would have rather died suddenly than lived to see my husband diagnosed, but that's not what happened and every day is a gift regardless.

You will cope with this, and your brother is obviously lucky to have a sister like you. As has been said here, one foot in front of the other is the key and you can handle this.
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Old 01-22-2017, 06:04 AM #10 (permalink)
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Default Re: My brother has been diagnosed. I can't cope.

Thank you everyone, for all your kind words and compassion. While I cry less often now, I still struggle with how rapidly this disease is consuming my brother's body. It's agonizing to watch. But I do enjoy his company, and I make the most of the time we spend together. ❤
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Old 01-24-2017, 03:52 PM #11 (permalink)
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Default Re: My brother has been diagnosed. I can't cope.

Today is my first use of this forum as I was diagnosed with ALS two days ago. So, I empathize with you in newly confronting this horrendous disease. I too hope that a miracle breakthrough occurs in the treatment of ALS, but that of course is not likely in the near future.
One recommendation a number of folks on this forum often discuss is making valuable time (either as a patient or loved one) that is entertaining, social and uplifting. I'm certain this must have a postive impact on the person with ALS as well as his/her family
Personally I'm not there yet and it appears you are not either. However, we may at some point unexpectedly embrace a new more productive and enjoyable outlook that will make whatever time your brother and I have left more valuable. In lieu of a cure, let us have that.
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