URGENT!!!! Can anyone help Rainbow?

It has been seventy years since Lou Gehrig's sudden decline made people aware of a disease no one could pronounce. His fellow players on the Yankees first noticed the problem on a golf course when several realized his legs seemed to be dragging. Soon it was apparent to everyone that something was badly wrong. Today, seven decades later, no cures, no answers, have been found.

Helen,
due to distances, lagtime in mail, etc., may I suggest a group telegram with a message from all of us listing our names. I will contribute whatever is needed.

You're all great!

It's had a strange affect on me as I question what was the purpose of Rainbow coming into my life and now leaving it so tragically. When I meet someone with such intensity and make friends so quickly, I feel that there's a reason. Usually it's someone who needs my help and can offer me their help. I've been confused at the reason why we've become fast friends when we're so different yet both a little off the wall. Well, I'm a little off the wall and he's a lot more off the wall!

He's promoted Curt's and my book on all of his websites, and I've helped him edit his latest book and have read all that he's put out on his websites. His life is literally an open book. I feel like I've known him for years, yet it has been just barely a year since we started communicating.

Maybe I'm supposed to write his legacy. I'm thinking of running that past him today. He's written about every phase of his life and put it out there for everyone to see, and maybe my purpose is to write the final chapter for him. I've written my fiance' Curt's story in Innocence Betrayed, and I've worked with another clergy abuse victim to write her story. Maybe I can be Rainbow's voice to tell his two children and many friends just what is going on inside him right now.

I'll check and see if he'll be going to a hospice facility. His friend Bill said that he's going very fast. Great idea, Abe, about the telegram. I'll check into that. I can also just read him anyone's comments that they want to say to him. I have been doing that from time to time, and he really appreciates all the good thoughts and prayers.

He was really caught off guard by this news although Bill had already informed me the day before that he was now looking like a skeleton, with his face sunken in and no muscles in his arms and legs.

I'm hoping to continue communicating with him regularly and hope he's receptive to my plan. I'll keep everyone informed.

Helen,
he's fortunate to have a friend like you. I think you will do a great job with the legacy.

Thanks, Abe. I just talked with him and read everyone's responses to him. He was very touched. And Carol, he was very concerned about your cancer returning.

He's still in shock about it. I ran my idea by him, and asked him how he'd like to be remembered. Right now, he says it hard to think about because he's trying not to think. But he feels like he's been given a death sentence, but he's committed no crime. He wishes he had dementia. The hardest part of this is having his mind intact and unable to do anything for himself. He's frustrated and angry, but he has no outlet for his feelings. He can't even get comfortable in any position. He relies on others for everything.

He says that his two books are his legacy. He wants me to write about him from what I know. But I want to get more from him. Maybe not today. But if he thinks about it, maybe there's more he wants to say.

Protective services will try and get him into a nursing home. His son was just told today and will try and come out as soon as he can.

Extraordinary for him to think about others (Carol) when he is in such a condition himself. It says much about his character.

Helen,

Be sure and thank him for thinking of me. That was very kind. I am thinking of him as well.

Carol

I'm sorry to hear the news. I'm thinking of him and hope he remains comfortable and has his family around him.

Due to being away I just read this thread on Rainbow and it breaks my heart. I look forward to his posts and pictures. Though I am late with this, please let him know, Helen, that my thoughts, prayers, and positive energy is with him. Thank you, Helen, for all you are doing for him and us.

Abe, let me know about the telegram.

I can't write anymore. Too many tears.

Sue, you brought tears to my eyes again. I just called him, and I read him your words. He was very touched. I read him all the posts when I talk with him.

It's getting harder for him to even keep the phone to his ear. The social worker is going to get in touch with the Adult Protection Agency on Monday to see about getting him into a nursing home. They don't take very good care of him in the hospital, and hopefully the agency can help him. I offered to talk with the social worker and the agency to see if I can get them to take better care of his needs. He relies on someone for everything. He brightened up at my offer. He's so helpless and there's no one to speak up for him.

If any of you want to send him a telegram, he's going to be there for sure over the weekend. I would think that it could just be sent to the hospital room. The address is listed above.

The phone number of the hospital is 956-523-2377 and his room is 323. If anyone wants to call, you just have to tell them that someone has to answer his phone for him when they transfer the call.

Dear Helen,
I never know what to say to comfort. What is there that can be said?

Please tell Richard that if it were in my power to do the healing, he would walk away. Alas, I have no power, not even in the magic wand that I have for my baby grands.
When I was a child I read the biography books that were written for children of 12. I read all about Babe Ruth, Lou Gerigh and Abe Lincoln. They were heros books written for children in the 30's or 40's, a time that heros were first invented.

I have read some of Rainbow's work. He is the real deal. I think I told him so. If not tell him I said it again.

God bless you Helen for your love. You are one of a kind.

Love,
Betty

Hi Everybody,

It looks like the forum is back up again, and so the loss of the above comments in this partcular thread is very unfortunate. Actually, the fact that the site has had trouble and the comments are gone just serves to remind me what a tentative grasp we have the on things in our lives, and just how quickly it can all be gone.

ALS is a scourge as far as diseases go, and has had a big impact on my own family. Although not considered a hereditary disease, my two cousins and their father all had it. Rainbow, I can only imagine how you are feeling and just want you to know that my thoughts and prayers are with you, for comfort and peace to surround you.

I had posted here a couple of days ago and it was one of the ones lost. Meant to be I guess because I probably wouldn't have posted here again, at least for a while.

I called Rainbow yesterday (Sunday). The nurse had to hold the phone for him because he couldn't. So the phone call was very short. But... it was very sweet. The energy I felt from Rainbow was one of love and warmth. Inspite of what he is going through he is still thoughtful and courteous of others.

Just wanted to let you know.

I have just placed an order for a copy of the anthology to be sent to Rainbow at the address Helen posted.

Sue, When I called Rainbow last night he told me that you and Abe called him. It meant so much to him--it was the first thing he told me.

It's too bad the last posts were lost because I wasn't able to read him the last couple because the nurse left the phone, but she didn't prop it and we couldn't talk for long. Just in case the phone number to call him was lost, it's 956-523-2377 Room 323 and you have to tell them that he needs the phone taken in and held for him.

I know Abe had said that he had tried calling a few times, and he finally got through.

Pam, Your comments about the tentative grasp we have on things and how quickly they can be gone rings so true. My fiance' and I always thought that we'd someday meet Rainbow face to face. We're all the same age and figured we'll be able to some day make it happen. It's so hard to believe that our chance will soon be gone. What a devastation to your family to have lost 3 members to this horrible illness with no cure.

I contacted the social worker at the hospital today and have given her my contact number. She got permission to give me Rick's son's email, and I've written to him. I also contacted the Adult Protection Services case worker and left a message for her to call me after leaving her a lengthy message of what's going on. It's appalling that the hospital workers, especially on the weekends, are so inconsiderate of his needs. He said that he was turned over with his face in a pillow and then left. He called out for help, but no one came.

I'm hoping the APS will be able to get him into a nursing home where he may have a better chance at more attentive care. The social worker said that Laredo doesn't have in care hospice, but that she was calling to see about getting him into a nursing home and appreciated the extra help. She said that the nursing home will usually pick up a couple months before aid kicks in. So now that they have his diagnosis, there's a chance that they'll take him with the time he has left.

Yesterday I went back and read the posts from the beginning when this started. Rainbow has so many loving and caring friends on this site, and it was so touching to read again. I sent the link to his son.

Shelagh,

That's great news!! He'll love it!

Helen,
The first two times I called, they just transferred the call and let it ring for a long time until I hung up. The third time, I told them I was calling from Germany and that Richard needs some help to answer the phone. They put me on hold. Finally someone came back on line and I asked why it was taking so long. "We're busy and you have to be patient." I said, "I'm calling from Germany, I'm busy too. You have a patient in your care but I'm getting the impression that you don't care if he gets care."
"Just a moment sir, I'll see what I can do."
And then I heard Richard's voice. It took me by surprise since I had forgotten his being British, and I happen to love the British accent." Richard's voice said more than words. I could feel how pleased he was to get my call. We didn't talk long. I just told him how much we all care about him. I asked if there was anything I could do but of course he said no.

I'm glad I got to hear his voice. Now I want his book and it will have much more meaning to me.

I know what you mean, Abe. We had been emailing, and he got my phone number at work from my store's website and called one day. Emailing doesn't compare to actually hearing a voice. And his voice is very pleasant.

I want to get his book too! Going to go back into the posts and find the link.

I had a better experience than Abe. They put me through right away. Like an emergency. His British accent threw me also. I just love that accent! *grin*

He sounded more frustrated than tired. I think because he wanted to talk and whoever was holding the phone didn't want to cooperate. I wish I (we) could do more.

Thank you, Helen!

Thank you, Shelagh! That is great idea! Let me know how much my share of his book is.

LOL! Sue, The idea of me holding the purse strings so to speak is to allow me to do things like this. There's so much to pay for, free promotional books for newspapers, a website (which I've paid for and set up) review copies ... the list goes on. If this is going to be successful, we all have to pull together and not be worrying all the time about who is paying for what. After all, isn't that what friends are for ... ever.

Shelagh, I didn't mean it that way. *smile* I just meant that I would like to help. That was all.

Well, every day brings something new. I called the social worker at the hospital, Sylvia. I let her know that Rick has a lot of friends who care what happens to him and he needs better care. She and I both tried getting through to the Adult Protection Agency, but just left a message and no return call. She appreciated my help. I mentioned hospice care instead of nursing home. When I talked to Rainbow, he said she mentioned a hospice facility in another city. I hope he can get to a place that will take better care of him. He got off the phone in tears when I talked to him about how much we all care about him.

Shelagh, he was excited about getting the copy of the new book. I'll call and let the social worker know it's coming so she can make sure he gets it.

When I read him your comments, Abe and Sue, about buying his book, he said, "Which one?" I told him that I didn't know. But he's left behind so much. I watched his "Mother Trucker" video today. If you go to his website, he's there.

He's so appreciative of everyone for all their wonderful comments. If anyone else wants to call him, feel free. I'm hoping he won't lose his speech any time soon so anyone who'd like to call him and just say hi and that you're thinking of him, I know it means the world to him. He is still wondering why this is happening to him. But he's still in there. I know it means so much to him that we all care. He was crying by the time we got off the phone. I didn't mean it. But it's good that he knows this. It's well worth taking a couple minutes (well maybe 5 minutes by the time you get through the connections) to just have a little bit of time with him.

As I read your post, Helen, it came to me that through his pain and suffering, through his life and passing, he is facilitating something in all of us. I believe we have all learned that life is short, can be taken at any time and that we need to grasp it while we can. I am sure there are other reasons as well. I know for me there have been.

Are you sure it is okay to call as I don't want to cause any problems or wear him out?

Sue,

You've said it beautifully. Going on this journey with him and trying to connect him with his author friends has been such an awesome experience for me. We take things and people for granted at times, thinking that there's always tomorrow. That's one of the reasons I call him every day. There are not many more tomorrows. His capabilities of talking on the phone are dwindling day by day.

If they get him into hospice, I'm hoping that someone there will be more willing to hold the phone for him as long as he's able to listen and hopefully talk. But that may not be the case. I think we need to grasp the little time left to let him know that although many in his life have abandoned him, there are still those of us who will be there to the end.

He's still wondering why this has happened to him. He's getting to the point of feeling like he just wants to take off the oxygen and end it. I can't blame him for feeling that way, but I try to encourage him to hang on to see his son again. His son is in Arabia and with all the Arab stamps on his passport, he has to get another one to fly out here.

If you call him and he can't talk, he'll let you know. When I first called him yesterday, he had a respiratory mask on. The woman who answered the phone told him who was on the phone and he said he couldn't talk just then but for me to call back, which I did. The phone calls at least break up his day. The only ones who I think have a problem with anyone calling is the one who has to go in and prop the phone for him, but I'm not concerned about them.

Knowing you are going to die, counting the days without any hope of a cure, has got to be the worst situation one can imagine. At the same time, I can imagine that every hour, and every day is something cherished. Knowing that one has friends who care must be comforting.