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A good friend has ALS- I'm pretty detroyed- my friend has been somewhat private our whole friendship ( we worked same place when I met her and i went back again) - but i am the closest person in the whole place. Anyway- I am devastated- I can only imagine being in her place.. I have checked in- it's not public knowledge st work but I want to do more.. i'm already hearing suicide when it gets later.. |
I'm sorry, OP. That's a devastating disease and horrible prognosis, as you know. Just be there for her, listen, offer to be available to run errands if she needs it (probably later), or drive her to doctor's appointments, or just do a regular lunch date. When my friends have faced horrible health issues like this, I let them take the lead in conversation. Some days they want normalcy and want to talk about "anything" other than their illness. Some days they just want to rant and rave about what they are facing. Most days, it's a little of both. Stay in touch with her as much as you can. People can become really lonely. And yes, they often want time alone, but it's a wonderful gift you can give...offering them company when they need it and privacy when they don't. If she's married, get to know her spouse (or other family) and stay in touch there, too. Later they might like meals delivered, or more errands run, etc. Again, I'm very sorry. |
OP here- thank you- she's 40s singles.. thank you for all hints- i told my best friend (not just DH) who is not in the area and i trust completely and knows her- he said he'd be afraid of friends distancing themselves - he knew a lot about ALS- and I said that is when I would never let my friend's down.. I plan on being as supportive as I can the entire way- it;s scary- this is quite a death sentence- not a maybe and again a hortible way to die. |
So sorry to hear this, OP. My mother died of ALS eight years ago and it is horrible. She was mid-fifties and in good health at the start, and fought for four years. Please contact the ALS Association in the DC area and ask them how you can help and find out what they do. The best thing my mother's extensive network of friends and family in the area did was to set up a "Share the Care" group - google that phrase for tips. There were a couple good friends who took the lead on this - organizing all the people who said "I'd love to help - what can I do" - driving to doctor's appointments, bringing meals, help with things around the house that will get harder as the disease progresses.
More later, it's really late. Hugs to you and your friend. |
Here's something - let her talk, and talk, and talk about all the fears and worries. Never ever ever ever (did I say ever) utter anything way too cheerful because you don't know how to fill a silence. (We've got some serious potentially terminal illness in my house, and that makes me want to punch people. I need - and don't have - opportunities to talk about my fears and planning strategies.)
Another one is to tell yourself you are in it for the long-haul and then make good on that. I can't tell you how many people fade away once an illness goes beyond 4 months.... let alone the years of ALS. And, if you bring meals, make them healthy. No one ill needs sticky buns and a cake. They need a well-balanced meal. 3:36 has some great ideas. I'm sorry for your friend. |
My mom was diagnosed at 38 and died at 41, when I was 16. It was pretty brutal. Women tend to live less time with the disease than men do, typically just a few years, and while the scientific community has come up with some correlations (and potential causes), this disease is still more of a mystery than some others. It's scary to have absolutely no control over what's happening to you; at least with cancer there is chemo and the chance of remission or operations that can remove the diseased area. ALS isn't like that.
Chances are, your friend will lose her gross motor function gradually, then her fine motor skills, then eventually talking (and then breathing) will become impossible. We're pretty sure my mom starved herself and willed herself to die so that she wouldn't have to live with the pain and frustration (of being a fully-functioning brain trapped in a no-longer-functioning body) anymore; the doctor had given her at least another year to live beyond when she did. I personally think the best thing you can do is just roll with whatever is happening with her at the time. Help her out in small ways, but treat her like she's the same person you've always known. My mom desperately wanted normalcy in her later days, not to be treated like an invalid. Her best days were when her best friend from the neighborhood would come over and they'd drink brandy slushes and giggle like schoolgirls. I'm tearing up right now. Good luck to you and your friend. |
22:43 again. I wanted to add that since she's single, she may need some help with larger problems like housing. My close friend is in the end stages of breast cancer and can't make her mortgage payments. Friends are donating money as much as we can, but I'm not sure if it will be enough. If you are up to it, you might research options to help her stay where she is (don't know if she's renting or buying). You don't have to share with her at this time, but you can have the information at hand if you think it's going to be an issue. |
3:36 back again. The law changed recently making ALS patients eligible for Social Security disability benefits (I think?) almost immediately upon diagnosis - those should help with the financial side of things. Stuff like this is what the ALS Association can fill your friend in on. |
10:52 PP here. The later PP's have good points. The first year or two she may be ok, depending on the progression of the disease. She will eventually need an accessible home with no stairs (1st floor, ramps where necessary) and she'll eventually be in a wheelchair, which insurance should cover. She will eventually no longer be able to drive, though she may be driving after she's stopped walking. (that was the case for my mom.) She will eventually need help with everything, including feeding and going to the bathroom. There are software programs out there that can help her with writing and talking once her speech degenerates. (I suspect they've come a long way in the 22 years since my mom passed.)
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OP here.. I wrote that posting before knowing if all the testing came back though she was told she had it- well all test came back negative - our best hope was a tumor.. it's ASL for sure.. thank you- I am looking up the asl org and social security disability - i'll call the associations since she's still working and intends to work as long as she can- it's a distraction.. it's simply horrible.. |
op here- sorry- i tend to be dyslexic (brother is).. ALS... |