October 8, 2021 at 6:31 am #20683ScottyParticipant
I am not the primary caregiver for S, who is my sister’s husband. My sister is his caregiver but I am very close to them and their four kids and sometimes I feel so helpless. The other day, my BIL expressed through text (he no longer can talk) how alone he feels in this experience. I don’t know how therapy would work because he can’t communicate very quickly as he’s basically typing everything out and I wondered if it would be more beneficial to actually communicate with someone going through the same experience. I haven’t asked him yet if this is even something he’d want but the other day when he expressed feeling alone, my heart shattered. They have a busy house but everyone is coming and going and currently he’s chair bound because recently he fell and fractured his leg. I want to sit with him when my sister has to go to work but then, what kind of company does he really want? I wonder if proposing communication with someone online who is experiencing some of the same fears of death and the feeling of being ‘locked in’ might help him.
What do you think?
October 8, 2021 at 5:26 pm #20696Dagmar MunnKeymaster
Scotty, your brother-in-law is lucky to have you. Your kindness and compassion for him shine through.
You didn’t mention how long he has had ALS, but I suspect by your comments, not very long – – in that he has not yet made any connections within the ALS community.
All of us pALS here in the forum experience the same fears of our future (and death) and we are in various stages of immobility. So, I believe the best thing for him is not to see a therapist, but have the kind of therapy had from meeting and communicating with people who, like him, have ALS.
Certainly spend time sitting with him. And use that time to help him join this forum. Then together, check out these Facebook groups: “Bulbar ALS Support Group” (2.9K members) and for lively conversations try: “ALS – Patient and Caregiver tips for every day living” (18.6K members). … there are tons more groups, but this is a start.
How about pointing him to my ALS and Wellness Blog…. start with my ALS Humor posts…. https://alsandwellness.blogspot.com/2017/09/als-and-wellness-blog-archives.html
Connecting to others virtually is a way to come out of isolation. I’m sure our other members will come up with more suggestions. In the meantime, try a few of mine 🙂
October 10, 2021 at 8:32 am #20704Kathy stitzParticipant
It’s admirable that you care so much about your brother-in-law and want to help him as much as possible. ALS can indeed be a very isolating experience. Does your brother-in-law have any family members or friends that text him or come to visit him? I agree with Dagmar that you could encourage him to join this forum in order to communicate with other ALS patients. Here he will find other pALS who understand what he is going through and can offer support and encouragement. These are people who still want to help others, even though they are suffering greatly themselves.
All of us pALS fear what our lives will be like in the future and fear death. There’s no cure for ALS and it has a poor prognosis. Many pALS only live for a few years after being diagnosed. I hope your brother-in-law will reach out for support because it’s so important to do so and I wish him all the best!
October 19, 2021 at 12:53 pm #20792ScottyParticipant
Thanks so much for your responses. My BIL certainly has a lot of visitors and love surrounding him. I just know that because so much has been taken from him so quickly (he was diagnosed in April and no longer can talk and losing mobility) he feels alone in this awful experience. He’s not really into therapy at the moment because of communicating so slowly through text but I thought if he could read other people’s experience maybe it would help. Thank you so much and I will check out the blog mentioned here and forums.
October 19, 2021 at 3:11 pm #20793VickiParticipant
I agree that your BIL is very lucky to have you. I was diagnosed in May and have am stuck in a power chair because my legs gave out, my arms are very painful (I suspect they’ll be gone soon) and my voice is almost gone. Before I was diagnosed, my caregiver husband and I found this newsletter. By the time I went for my final emg test, we had no doubt what the outcome would be. I have the app on my cell phone but haven’t tried working with it yet. There are so many helpful people here, all going through the same thing. I urge you and your sister to also read this newsletter daily. There are lots of caregivers that need to hear they’re not alone too. Oh, and by the way, we’re all afraid. I just try and think positive, one day at a time. Best wishes to each of you.
October 19, 2021 at 3:18 pm #20794BillParticipant
Scotty, I’ve learned more about the personal lives and daily challenges of pALS on the patientslikeme site. There are many people active on site daily. You get to know people. It is sad your bil appears to be fast progression. There are all progressions on the site, I’ve been disappointed on the big facebook sites myself.
January 25, 2022 at 8:24 pm #21351Jennifer O’BrienParticipant
Is your BiL getting guidance on assisted technologies for communication that might help him if he loses his ability to type? I’m thinking re: eye gaze technology. I don’t have experience with it; just aware of it, so don’t know if it would be effective for him or not.
Best wishes to you, your BiL and your family.
- You must be logged in to reply to this topic.