Newly Diagnosed with Bulbar

[Caring for Jean]

a woman I have been caring for was recently diagnosed with bulbar ALS.... she is in the advanced stages... she has lost sooo much weight and has a lot of difficulty swallowing and talking at this point. Can anyone please give me any tips on caring for her. pls any tips at all would be so greatly appreciated!!! anything at all that you can tell me would be so helpful.

TYIA!!!!

 

[soonerwife]

So sorry to hear about Jean's dx.

Does she have a feeding tube? If not, are there plans to get one?

 

[Caring for Jean]

No feeding tube and I think her children have decided against it

 

[Nikki J]

What are your current challenges? Are you responsible for choosing / planning her food? Is she choking? Is communication a problem?

If you tell us more about what you need help with and her current condition we might be able to help more.

You can find threads with suggestion for calorie rich easier to swallow foods such as smoothies

 

[Caring for Jean]

Oh thank u!!
I cook for her ... I try to get as many calories as possible in a meal
But she really has a tough time w food
She doesn't seem to drink a lot bc when she takes a drink it all pours out of her mouth all liquid is honey consistency

I can understand her a majority of the time but no one else can really understand her it's heartbreaking to watch
She doesn't have an iPad
She's a young 75 she also has PBA
She is absolutely lovely

Maybe so good ideas and communication ideas
She also drools a ton and she doesn't like that
I just want to take the best care of her I can
TYIA!!