Status
Not open for further replies.

Diane123

New member
Joined
Feb 28, 2018
Messages
3
Reason
Friend was DX
Diagnosis
02/2018
Country
CA
State
Ontario
City
Toronto
In another thread I explained that I didn’t think I’d be able to be enough support for my boyfriend who lives with his mom and sister.
He and I have been together for 5 years but have been becoming a bit distant since my daughter died 7 months ago. I’ve been needing time to myself . But then he was diagnosed with ALS.
I told him I couldn’t be his only support and encouraged him to tell his sister.
Now we both regret it. The first thing she did is tell him to go on a cleansing diet of only fruits and vegetables. It angered me because he knows how to eat, he doesn’t need cleansing and he has diabetes, so he can’t just mess around with his diet.

He doesn’t need someone other than doctors telling him what to do, he just needs some support. He was crying for days so I went with him to the doctor and he got some sleeping pills and some anti-anxiety meds.
Just now she woke him up. She actually went into his room and woke him up. He hasn’t been sleeping well as you can imagine.
She wanted him to tell their parents. He got very stressed out again and couldn’t go back to sleep. He did tell her that he doesn’t need the extra stress right now, he just needs to get through to the end of the month. But he regrets telling her and I regret encouraging him to do so.

He has no one else but me that will just be supportive. His family is both religious and from cultures of superstitions. Him and I are atheists and lovers of reason and science.
How do you deal with family members that want to take over or control you? It’s such a scary thing when you realize you are losing control over your own body.

I can’t take care of him full time, I have my surviving daughter and our future to think of. I will be there as much as I can for him but he’s stuck in that house with women who believe a cleansing is going to fix this, or that some milk and honey or an amulet will work.

Does anyone have experience with this kind of non-support? How do you take control in this situation? The person with ALS I mean?
 
I’m so sorry you and your boyfriend find yourselves in this difficult situation. First of all, I think it was the right thing for him to tell his family, even though their reaction is wholly unsupportive. ALS is not something one can hide for very long. No need for either of you to feel guilt here. It’s not your fault his family is not helpful.

It’s possible his mom and sister may come around at some point, but it’s probably not realistic that will happen anytime soon. Meanwhile they are being destructive. And you are clearly very supportive, which is of great comfort to your boyfriend, even though you are probably not comfortable (or willing) at this point to have him move in with you. It sounds like you have great boundaries and insight with what you are emotionally willing and able to take on at this point. That’s a good thing.

That said, he probably needs to get away from his toxic home environment. Does he have the financial resources to go at it alone and hire help? My advice would be for both of you to meet with the ALS clinic social worker ASAP to discuss the situation. Best of luck to you both.
 
I'm sorry the disclosure turned out badly, Diane, but to find a silver lining, better to know now rather than later so as Karen says you can try to help him find a better place. I agree, staying where he is will likely only harm his health. A social worker is a good thought, as well as pulling together any other family, friends, colleagues who can be part of his "village."
 
I have a suggestion and it's a long shot. I'm a strong Christian but not very "religious."

I'm uploading a PDF file on ALS awareness. It explains the disease and gives testimonies from PALS and CALS. This document has helped some of my friends understand the disease. Give it to his sister, first. Read it yourself.

If they have any questions, you can send me a private message with their phone number and I will call them and talk to them. I'm pretty good in dealing with different beliefs, superstitions, and how they relate to treatment.

If they hear it from someone who was diagnosed with ALS, it might sink in. I can also suggest some diet and supplementation that would be ok for diabetics.

If it will help this family come to terms and understand the disease, I'm happy to help.

Please read the document in its entirety before you give it to his sister.
 

Attachments

  • The ALS Project.pdf
    760.6 KB · Views: 455
Hi.
Have you been in contact with ALSCanada? They were super helpful to me.

Angie
 
Get in touch with ALS Canada. They will set you up with a Regional Manager who will be your resource to navigate the Ontario healthcare system. They are also a great source of equipment as you need it. Sorry to meet you here, but if you are here we are a great place to be for information, support, rants..... A lot of what you read with insurance issues and the like are from our American cousins. ALS is an expensive disease, but socialized healthcare looks after most costs. the # is 1-800-267-4257.
Vincent
 
Status
Not open for further replies.
Back
Top