New CALS...next steps?

[Emilyj]

My sister was recently diagnosed. She has either had ALS longer than we thought or is rapidly declining. She is 65. She already cannot walk, talking is an extreme effort, she chokes on food/drink, and is trying to adjust to the BiPAP machine. Feeling behind and overwhelmed. Have her connected to palliative care and going to be assessed for hospice. Given all this, what are some good next steps?

 

[Nikki J]

I am very sorry. Of course you are all overwhelmed

Does she have a power chair or is one on the way? Does she want a feeding tube? If she is choking and respiratory compromised if she wants one the time is now. ASAP. If she is waffling delay could make it too late.

These things need to happen before hospice because of payment issue. The pwc should be in your possession not just ordered.

Are you her primary CALS? What supports do you both have?

I lost my sister to this 3 years ago. It is very hard

 

[Emilyj]

I am very sorry. Of course you are all overwhelmed

Does she have a power chair or is one on the way? Does she want a feeding tube? If she is choking and respiratory compromised if she wants one the time is now. ASAP. If she is waffling delay could make it too late.

These things need to happen before hospice because of payment issue. The pwc should be in your possession not just ordered.

Are you her primary CALS? What supports do you both have?

I lost my sister to this 3 years ago. It is very hard

She does not want a feeding tube. What is pwc? She has support systems - church, neighbors, good friends. I am not her primary caregiver, I live 4 hours away. Husband, 70 years old, is her primary.

 

[Nikki J]

Power wheel chair. If you have not already look at this section Resources

Too much to read at once but you can pick and choose and take it slowly

 

[ReginaS]

So sorry to hear that.
If she and her husband are interested, you could consider researching the options to get a speech device. Maybe the ALS society in her area has one in the 'closet' as when they apply for it through the normal channels it will take a while to get it. The Gleason Foundation is also a good source for these kind of things.

It will be a tremendous help for her and the caregivers when they still can communicate at least to some degree after speech is too hard to understand. She will need a bit of time to practice so that it is not too hard to learn as she gets weaker.

My partner lived for about 16 months after diagnosis. His progression was on the faster side. He did not want a feeding tube and after a few clinic visits we chose palliative care. They were very helpful to us. We did exactly what others have recommended here: we stayed on palliative care until we had the equipment we needed. We could always contact a social worker from the ALS society who helped when we needed it. Maybe they have one too and would welcome you to get in touch with that person?

Not having a feeding tube shortened the time with ALS as it progresses faster if a pALS cannot take in enough calories.

 

[affected]

I'm very sorry for your sisters diagnosis Emily.
I would suggest you see if you can get her husband to join here so we can help him work through things on a day-to-day basis.
And maybe your sister would like to join as well. She may find it really helpful to talk with other PALS.

My husband was rapid progression, gone 11 months after diagnosis. It's not uncommon I'm afraid and everyone involved needs support.