This is neither mundane nor pointless. I wanted to share.
A long-time friend of mine (he’s about 50) just told me his wife has ALS. Her doc predicts she’ll expire in about a year.
Thankfully they remain strong in their Christian faith, so they rest in God’s reassurances and this provides some comfort during this difficult time.
This is TERRIBLE.
I don’t know what else to say.
Don’t believe the predictions too much, a year is the average survival time for someone at whatever stage she’s now in, but that’s how much my brother’s father in law was given and he lasted three.
It’s going to be one bitch of a ride 
It’s going to be one bitch of a ride
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Sad but true. Lost my wife to ALS 10 years ago. It took about six years from first symptoms to death. My prayers are with your friend and his wife. The only advice I’d offer is to start preparing for the worst now. That means figuring out how to deal with homecare, which I’d have to think she will need at some point, and health insurance generally doesn’t cover it. If there are family members or friends who can pitch in, that may be a help, but being a caregiver is utterly exhausting and the stress of it can shred a relationship, as it certainly did mine. We were fortunate enough to eventually be able to hire people and pay them out of pocket once things got to be more than we as a family could handle ourselves. I have heard of people actually getting divorced so that the ill spouse qualifies for medicaid to get the homecare covered, but my information may not be current.
I wish them the best, so sorry!
My father currently is suffering from ALS. He was diagnosed last February. My well-wishes go to you and yours.
Thanks for the prayers, mo50, and I’m sorry for your loss. I’m praying hard, too. My friend lives 600 miles away, so I don’t see him often. We’ve been friends since we were in sixth grade, so we go back many years and, while we aren’t very very close, there’s a closeness I know is there over the years and miles. Given that, I don’t know if I’m comfortable asking him if he’s preparing for the home care logistics. He’s a bright and practical guy, so I’m pretty sure he’s at least thinking about it. It’s still early, being less than one month since diagnosis.
ArrMatey!, I’m sorry to learn about your father, and my prayers are with you too.
Oy, I’m so sorry. It’s a cruel disease.
I’m so sorry for your friend. I had a friend and coworker go throught 7 years of pure hell. He finally passed away last year. He kept working for the first five years for the insurance and to vest in the retirement benefits but it became to much when he started to lose mobility. Have your friend check out local support groups. They were a big help to him and his family.
We lost my mother’s sister a few years ago to ALS. She thought she was having back problems and weakness. She went a lot quicker than we thought after the diagnosis. Pneumonia. It was probably better for her to go quick. I hate that disease.
Thank you for your kind thoughts. I think you are of course correct to not want to confront these poor folks with issues that they may not be able to process right now. I know that my wife and I basically went through the Kubler- Ross stages of dying: denial, anger, deal making, acceptance, and so forth, and if someone had confronted us with issues we weren’t able to process, however correct they may have been, it wouldn’t have been helpful. We might’ve felt that you weren’t being positive or hopeful some such, and we might’ve have shut you out.
So I guess there really is some finesse that has to be part of it. Please just know that these folks are facing an enormously stressful challenge, and your friendship will be deeply appreciated, if not this second, then as the process plays out, or after it is completed. I had a number of friends who approached me after my wife passed, who said they wished they’d been more involved, but didn’t know what to do, so they withdrew completely. Part of me felt resentment toward them, but more of myself realized I probalby would have done the exact same thing. No easy answers, but God bless them both.
They have my sympathies. I took care of my mom when she was dying from it a few years back. Simply put it sucks, it sucks more than you think it would, horrible way to watch somebody you love go but that’s what happened to my mom. (She only lasted a couple of months mostly because she didn’t want either tube. I still don’t know if it’s a good or a bad thing she went fast, it’s one of those philosophical arguments that really has no answer.)
This sixty million times. My father and mother have gotten -so- much help from the local support group, both in morale / emotional ways, and in just plain advice / references. My dad figured out how to get his wheelchair and get a modified van for said chair through them. They also have a psych professional that checks up on my folks every other week. Both mom and dad admit they’d not have made it this long without them.
I am so sorry for your loss. ALS is such a filthy disease.
My grandfather died of it, in his mid 50s I think (this was long before I was born). Mom described helping to care for him; toward the end she even had to help him smoke his cigarettes (whatever my feelings about tobacco, at that point I’d have done the same - let the man enjoy whatever pleasures he can!).
It is not a common disease. According to this,
and
Finesse.
mo50, thank you. From all the responders, and I re-read the entire thread now, I took this from you as I drafted my email. Finesse, and love.
I haven’t talked to my friend (whom I’ll call “LRP” here) in a couple of weeks. I wanted to give him some time and space, but not too much so as to not withdraw. It would be easy for me to “let life get busy”, and then the next thing you know, in a few months or a quick year I’m getting the - dare I say this? - the funeral announcement in the mail. (sigh)
It has been one month since the diagnosis, and two weeks since he told me.
I took many things from all responders here, but tried to govern my reply with finesse. Only time will tell, when LRP replies and in the coming months, if I’m being the supportive friend I want to be instead of withdrawing from him or shoving my nose unwantedly in his business. It will take some finesse.
Thanks for your wise guidance about dealing with this terrible disease.
Thanks again, y’all. You Dopers rock.
Woodie Guthrie had ALS too. The movie Alice’s Restaurant opens with a scene showing him in bed, and Arlo (or someone) holding a cigarette for him to smoke.
How does ALS compare with other diseases (or injuries) that leave a person severely paralyzed? Is the patient in pain? Is palliative care needed, and if so, is it available? Does the patient eventually become fully locked-in, not even able to communicate by blinking his eyes? Do patients and their families discuss whether to “pull the plug” and how soon? Do some (or many) patients wish for that, and perhaps sooner rather than later? If so, are such wishes respected?
Actually Huntington’s. I’d guess that ALS is worse for the patient, since it’s the motor neurons that are deteriorating. You’re fully awake and aware until you can’t breathe anymore. I think with Huntington’s your brain is deteriorating, too, so at some point, you probably no longer know how bad off you are.
I am so very, very sorry.
My best friend’s husband was diagnosed with ALS just after Christmas of 2010. He was actually one of my best friends as well, we have all known each other since Cindy and Don were 13 and I was 14. And loved each other deeply ever since. Don died almost a year later, just before Christmas.
I don’t want to be a downer, but the fact is? I have watched both my mother and my brother die from Pancreatic Cancer…and I have to say that this was worse. Much, much worse. It was like watching my beloved Don die a day at a time. It was horrible. At least with mom and my brother, there was some hope. Not much, but some. With ALS there is nothing that can be done.
The good thing was, Don was THERE, right until the very end. I had “Fridays with Don” until the Saturday before he died…and I cherish all of those months of Fridays more than you will ever know. I spent every Friday with him from the time that he couldn’t get out without help anymore.
The night before he died, I was going home and went to tell him goodnight, that I would see him tomorrow. I said “I love you, is there anything I can do before I go?” and he puckered up his lips like he wanted to kiss me. I laughed and kissed his sweet lips. I said “I love you” and he puckered up his lips again. So I kissed him again. I guess he knew he was at the end, but I didn’t realize it at the time. I got a call at 2AM that he was gone. I am so glad he knew I loved him.
This is going to be a long and painful journey for your friend. I know that you will be there for him, and that he will appreciate it more than you will ever know. It sounds like you don’t live near your friends, but if possible? Take a day here and there to stay with her so he can get out of the house. To do errands, or just to meet with friends or whatever he wants to do. It meant the world to my friend’s wife…and also to me. To spend that time with Don was priceless.
I’m so glad that they have strong Christian faith that they know where she is going. It means the world when you lose someone to know that you will see them again someday.
If there is anything I can do, please email me. I would so like to help if I can.
My Love,
Cheri
Well, those of you who have been through this probably knew this was coming. This one went way too quickly. My friend, whom I’m referring to as “LRP”, has shared that his wife “CB” has passed on.
CB was a beautiful, classy lady. She was a gift to us all, especially to LRP. We men are so undeserving of the angels who love us, the angels who put up with our crap. CB was one such angel. CB started feeling ill in April. In April and May she got progressively worse, then in June she underwent several tests. On June 29th LRP & CB got the devastating diagnosis: ALS.
On Monday September 10, CB passed away. They had two short months together since the diagnosis. I guess, in retrospect, it may have been a blessing that it went quickly.
Thank you, Dopers, for your help, encouragement, and sharing. Thanks for letting me share. Thank you for helping me to have some finesse, so I was able to reach out from time to time and let LRP know I was there for him. As the saying goes, “A joy shared is twice the joy. A sorrow shared is half the sorrow.”
I cannot even begin to imagine the depths of LRP’s sorrow, grief, agony, and loss. His strong faith sustains him, and CB’s strong faith also sustained her during these past months.
I had to go back and check the dates on the OP a couple of times. Wow, that sure happened fast
My condolences for your loss
Yes, it was very fast. Thank you.