Old 12-27-2008, 08:14 PM #31 (permalink)
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Default horace lost his battle with als dec. 3, 2oo8

hello all.

i guess by now most of you know that my beloved husband, horace, lost his battle
with als on dec. 3rd. i was by his side, holding his hand when he drew his last
breath. i had never seen anyone die before, and i cannot get that last 30 minutes
out of my mind now. i am hoping that at some point i will be able to only remember
the healthy husband and our good times together, and get the image of what
he looked like at the end out of my head.

als is the worst disease known to man. every other disease has some type
of treatment, some type of hope. not als. it is a death sentence. no one should
have to be alert in mind, and watch their bodies deteriorate.

what he suffered and what i suffered should not happen to anyone. i thank
all my friends here in the forum for helping me through this. i came here for
most of my information, and all of my support and encouragement.

God bless you all.

jackiemax
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Old 12-27-2008, 08:38 PM #32 (permalink)
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Jackiemax ... I am so sorry for your loss. You were a rock of strength to your husband during his ordeal. Blessings to you.
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Old 12-28-2008, 10:39 AM #33 (permalink)
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Jackiemax,

I'm sorry for your loss. It is really hard to let go of the images from the last weeks, hours and minutes. One of the things that helped me was to dig out pictures of my Dad and we created collages for to place in front of his casket at the funeral. We took the collages to the memorial and let people take what they wanted (they were copies I made at kinko's of originals) and then I took what was left and made on collage from them for my wall at home. Also a family member had an old video from when we were kids and we all watched it together. Hearing my father talk after years of no speech was hard! It isn't easy to replace the last memories with ones from "before ALS" but being around people who weren't around during the illness helped. Then again, for me I found it also important not to forget the man that was ill. Those were hard times they brought us closer than I could have ever imagined. The illness was horror... and while I'm usually a huge fan of horror movies and books, horror in reality is another story. ALS is evil and what it does is hard to imagine, until you've been through it with someone you love. Those memories probably won't fully fade and they may come back at the worst times to hurt us...but knowing that we did everything we could all the way up until the end will help us to heal. Imagine the guilt others will feel who abandoned or avoided our PALS! I see it firsthand in some of my family... and am glad that I don't have that on top of the feelings of loss.

Take care,

Sandy
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Old 12-28-2008, 10:44 AM #34 (permalink)
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Sandy and Jackie - about the only htink I can wish you right now is peace. I think of both of you often and wonder how it is going. Hugs, Cindy
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Old 01-05-2009, 05:10 PM #35 (permalink)
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In my case, it took over 6 months after my wife passed away to get back to "normal" physically, and much longer to do that emotionally. Allow yourself time to heal. You will eventually be able to remember the good times without being reminded of ALS. My wife was concerned that her grandchildren would only remember her as she was in the final stages, but that is far overshadowed by their other memories.
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Old 01-06-2009, 11:14 AM #36 (permalink)
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Jackiemax, I am so sorry to hear about your loss. This is a cruel disease, but I hope that you know what an inspiration you have been for me...and obviously to others as well.
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Old 01-09-2009, 11:54 AM #37 (permalink)
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Hi Jackiemax,
I'm so sorry for the loss of your husband. I lost my husband to this awful disease July 2 - our 25th wedding anniversary. I too can't get out of my mind his final days and hours - it was so painful. It is getting better though - when it first happens, you're in shock and you're sooo tired! It's been six months, and I'm still exhausted, but feel that I can't slow down - that's when all the memories and sadness hits. I miss so much the good times - before he got this stupid disease. I think that's what hurting the most now. All of the "firsts" are so hard too - first Christmas and birthday in 28 years without him - I wish I could have just cancelled Christmas, but we soldier on for our kids and our families. It's funny - I read through the posts now, and I see how much some of the caregivers are suffering and I know I felt all of the same feelings, and went through so much that they are too, and you know what? I miss it cuz at least he was still here.

Hang in there - take it one day at a time, and when you want to be sad, be sad. In time, the bad stuff will fade (won't ever forget it!), and the good memories will take over. I hope you have some good support - I've been so lucky that way. I have some wonderful friends who let me talk about my husband - as a matter of fact they encourage it with the "remember whens", and my kids love to talk about their Dad.

Try to remember that you're not alone - everyone here is so caring! It's helped me when I've felt so lonely.
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Old 01-13-2009, 12:45 AM #38 (permalink)
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Quote:
Originally Posted by strikeout View Post
Just wanted to confirm that the Joan Dancy support meeting for CALS held at Brick Hospital is very good. I hope to attend again this Tuesday, if DH has no objections (a long story). Maybe I will meet a couple of you. I do not live far from Freehold (my hometown) and am even closer to Manasquan.
I am going to the well spouse meeting at the Empire Diner on route 9 in Freehold.Hope to meet you in person! (Tues,7pm)
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Old 01-14-2009, 10:50 PM #39 (permalink)
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Shrimpbox,
Wed. night and I just read your post. Would love to attend a Well Spouse meeting, but will probably wait until the nights stay lighter a little longer. Would love to meet both you and Linray. Maybe we can make a plan to get together. Also, Joan Dancy Support Group at Brick Hospital meets Tues. the 20th. Plan to go again as long as DH is okay with it. If you'd like I can give you my e-mail.
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Old 01-24-2009, 08:57 PM #40 (permalink)
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Hi Leigh Ann,

I think you should commend yourself for taking care of your husband and your children as well as you are and coping as well as you are. It is no small task and I totally admire you. It has to be really hard to deal with his anger even though his feelings are totally understandable as are yours. I totally respect you.

I am always on the verge of tears and struggle to go to work every day and leave my husband who is still pretty functional except for speech and swallowing and weakness and..........

The forum has been a Godsend to me.

Take care of yourself.

God bless you.

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Old 01-24-2009, 09:01 PM #41 (permalink)
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Jackiemax,

My heart goes out to you. I m very sorry for your loss.

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Old 02-04-2009, 11:31 AM #42 (permalink)
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Dear Leigh Ann
The information from the Edgar Cayce Readings helped me deal with MS which has some similarities in its treatement options with ALS.

In my experience it has worked for me. If it it is too late to start treatement the I highly suggest some bible readings for ALS suggested by Edgar Cayce particulary Deuteronomy 30 in the King James version.
Peace-

Last edited by David : 02-28-2009 at 11:27 PM Reason: Links for unproven tharapies not allowed
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