New here and need advice

[Veedeeone]

My father in law was diagnosed with ALS about 6 months ago. Since then he has received no treatment and doesn't want any. He has lost all of his ability to speak, he can't eat or drink anything without choking, and he has lost close to 200 pounds! I was hoping to get some advice on how to make him see he needs help??

 

[affected]

Sorry to welcome you here.

ALS is terminal, so we have supportive therapies to help along the path, but no treatments.

It's very hard watching someone go through this, but maybe your FIL wants to do this on his own terms. Quite a number of PALS refuse interventions/therapies because they do not want to prolong their life to experience more and more decline.

It may serve better if you can sit down with him and ask him openly and honestly how he wants to do all this, and would he like to get palliative care involved to help him move through this disease with as much comfort and dignity as possible. Palliative care will work with him on his terms, they will not try to suggest or force any interventions that will prolong his life.

If you try to convince him that he should be accepting things he doesn't want, you may be seen as trying to take from him the only control he has - which is the right to refuse. At the end of the day it is his body and his disease. It is heart wrenching to watch this happen to someone we love, but it's unimaginable what he is going through!

It may also help you to start seeing a counsellor to discuss how you are dealing internally with watching this disease. I saw a counsellor regularly and it really helped me as a CALS.

 

[GregK]

Is the local ALS Association involved?
Is he a veteran?

 

[Veedeeone]

Sorry to welcome you here.

ALS is terminal, so we have supportive therapies to help along the path, but no treatments.

It's very hard watching someone go through this, but maybe your FIL wants to do this on his own terms. Quite a number of PALS refuse interventions/therapies because they do not want to prolong their life to experience more and more decline.

It may serve better if you can sit down with him and ask him openly and honestly how he wants to do all this, and would he like to get palliative care involved to help him move through this disease with as much comfort and dignity as possible. Palliative care will work with him on his terms, they will not try to suggest or force any interventions that will prolong his life.

If you try to convince him that he should be accepting things he doesn't want, you may be seen as trying to take from him the only control he has - which is the right to refuse. At the end of the day it is his body and his disease. It is heart wrenching to watch this happen to someone we love, but it's unimaginable what he is going through!

It may also help you to start seeing a counsellor to discuss how you are dealing internally with watching this disease. I saw a counsellor regularly and it really helped me as a CALS.

Thank you for your great advice..... I think that we were thinking too much about what we want.... It really is his choice....we got caught up in our own feelings thank you so much for reminding me!

 

[Veedeeone]

Thank you so much for your advice! It made me realize how caught up in our own feelings we have been. It really is totally up to him and that's the way it should be no matter how much we want him to stay...... Thank you again!!

 

[affected]

You are welcome

It's a very hard call but I have no regrets about how I let my husband make what I felt were poor decisions. You will find lots of resources and support here.

 

[Veedeeone]

That is really true, what seems like a poor decision to me may be just perfect for him. Just knowing that it's OK to just let it him do a wishes helps. And having you confirm it worked for you is a relief. Thanks again!!!