Marriage... Yet another loss due to ALS

• By Chuck1106
• Posted March 31, 2009 at 12:19 pm
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Eddie, My heart goes out to you. ALS is a miserable disease, but I was lucky and have a wonderful wife to help me. I can imagine how hard the situation is.

Let me know how you are doing, keep in contact.

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• By fec139
• Posted April 1, 2009 at 9:16 am
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Eddie,
Do you have help in the home? Is your wife your sole caregiver? If so, no wonder there is tension! No spouse should have that responsibility; it's too much! I would suggest you speak to a social worker at your ALS clinic about how to arrange things so that you can get home care, and then your wife can be a wife. This is a tough disease, and even tougher to bear all alone. Good luck!

Fern
http://xr.com/fern

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• By swhite-geo
• Posted April 1, 2009 at 9:16 am
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Hey Eddie, my heart goes out to you as well. I was diagnosed in July of 2002, and it was like my wife was mourning my death from day one. She later said she couldn't hndle seeing me whither away, So she put her career first, to the point where she didn't have to lift a finger for me. Our divorce is supposed to be final in a couple weeks. Anyway, you can email me at swhite.geo@yahoo.com. God bless!

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• By poppop
• Posted April 1, 2009 at 2:01 pm
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Eddie-

I am so sorry that you have to go through all of this alone. I just lost my dad back in January of this year from ALS and i was his caregiver. This disease takes so much out of everyone involved i cannot imagine you having to go through this alone. I cannot compare my emotional roller coaster to the one suffering from the disease but i will tell you that as a caregiver watching someone that you love with all your heart suffer from ALS will exhaust you, anger you and give you emotions you never knew you even had. For many people the easiest thing to do is find something else to do so they dont have to watch that loved one suffer. You have enough on your plate that you should not have to deal with someone not being there for you but please make sure that your caregiver truly doesnt want to be there or is she just unable to handle all of this. She may need help and support of her own in order to help you the best she can.
I hope that you have other people around you to help and i wish you much peace ! I am sure that you are a wonderful man and deserve the best care that someone can give to you right now.

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• By wifeofPals
• Posted June 10, 2009 at 10:36 pm
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Eddie and any other PALs;
I am the wife of a PALS. we were high school sweethearts. We've been married 26 years. I am an executive for a major DoD contractor, he is operations manager for a Navy contractor. Let me see if I can help. First - divorce is the last thing you need right now. and the last thing she needs. You just don't know it right now. Second - what SHE needs is her husband, HUSBAND. She has her patient. So for at least one hour a day you have to PROMISE to give her back her husband. If you can still talk freely, then sweet husband comments - loving sweet comments. HARD - yep - it is. You hurt all the time, you are tired, you are dying and you feel like crap. Yes, she knows. If she is like me, she cries inside all the time. But then I smile, cause when I lean down to pick him up out of his wheelchair - he snuggles my neck, tells me I am his girl. On sundays we wheel out onto the porch and talk about when he met me, when we had the kids. Give her conversation. Give her a joke or two. Its what she needs. For the guy whose wife works - I work hard - at work nobody is sick, nobody is dying. I can pretend like life is back to normal. She doesn't mean to run away - So everymorning I get up at 5. I rub down his feet, his legs, stretch his back, rotate his arms, hands, etc. lift him, shower him, shave him, feed him. He gives me BLUE blue eyes, a phenomenal kiss, a joke or two and humor. it's a fair deal.

Don't get me wrong, sometimes he barks at me. i swallow the need to yell back. I am powerful woman at work. I LET him yet at home to give him back some semblance of strength. BUT sometimes I have to remind him to ease up. WE are a normal talking couple.

Divorces are expensive. ALS is expensive. You can only change you. Don't yell anymore. Not worth it. Tell her she is important, she is great. And get her some help. She's dying inside, every day. I know. I am too. I am loosing my best friend. My nine year old daughter is loosing her dad. My 17 year old son is too. this isn't just happening to you. it's happening to all of us. together.

give her my e-mail post. I will try to help her cope.
OH, and God is my best friend (then comes Jeff - my big guy). He helps me.

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• By RochesterBarb
• Posted June 11, 2009 at 8:00 am
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Dear Eddie,
If your wife is your sole caregiver, I'm surprised you guys made it this long. I helped my sister (who was divorced years ago) stay at home til the end, but not without a team of dozens of other people, including her ex-husband and her son and his wife and many friends. As someone said above, you need a social worker or church or support group to help you and your wife organize the immense and overwhelming number of details and huge amount of work that caring for people with this horrid disease require, and a counselor, too. Do you have an ALS clinic and support group near you? I did NOT do most of the hands-on care (we had 8 aides who rotated and who were paid for a variety of ways) with 24 hour care, and even then it was THE most difficult 4 years of my life, bar none, even much worse than a car accident and resulting stillbirth I had years ago. Also, during the course of the disease, as my sister got sadder, more frightened, and angrier over what the disease was doing to her, she sometimes would take it out on anyone around her, which made it difficult to keep aides. The disease cost us our sister relationship for a while, until we could get a system in place that worked, which took Herculean effort! Rather than get mad at each other, if there is a way you can get mad at the disease together, it helps. Also, I wouldn't be being honest with you unless I told you that without the moment-by-moment help of God, I wouldn't have survived. It got to the point that, like in AA where they say "one day at a time" or more so "moment by moment" I had to continually turn problems over to Him. I would do the work and ask Him to open the doors (whether it be to get a service paid for, or find an aide for 6 AM when the one scheduled called off at 5:45). On the few days when I did HALF an 8 hour shift my body hurt so bad from lifting her legs and arms every few minutes it took me days to recover. I pray you and your wife can find help to save your relationship before it's too late. Or perhaps the reason you two are going your separate ways is that it hurts so much to be close to someone you see drifting away....
I pray God's best for you both, and no less.
Love
Barb in Rochester, NY

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• By fanny7
• Posted July 13, 2009 at 12:36 am
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Dear Eddie Spaghetti,
She loves you, thats what your seeing, her heart & deep commitment for you both. She is with you every step of the way. And without doubt mourning what once was and is to come. Your courage sounds endless, just going the wrong direction. Reach deep and pull it up & out of the pity pot and just let her have you back again. Shes just as scared as you are, give her permission to lay her head against your shoulder again and both of you begin, well, yes, begin on the road ahead, together. 26 years? And your bailing now? I wish my old company was still in"chicagoland", the late great Arthur Andersen, if it was I'd personally have to take you on as a client-results guaranteed! Now look at what you did-I'm all upset I can't! How I miss my expense account. All I can offer acrost the miles is my prayers tonite for you & your beloved, a much better guarantee. And please if you have any pull in the prayers area, pray that Chicago stops sending your weather to NJ. My first winter in a rollator, & right as the relentlees rain all Spring & to now, had mountains of snow, ice, bitter cold. I took it as a learning experience & provided entertainment for the neighbors. Be good. Love fanny.

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