bulbar ALS

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SusieQ

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Newbie here. My 89 yr old mother was diagnosed with Bulbar ALS about 3 weeks ago. We have no history of this disease in our family. Her symptoms made themselves known quite abruptly, and progressed from barely noticeable to significant in a very short time. She has difficulty talking and swallowing, and suffers from severe shortness of breath. Her neurologist gave her a "few months" to live. Mom has always made it clear to me that she never wanted to be hooked to machines if there was no chance of a meaningful recovery. She also has an advanced medical directive that says the same thing. I guess my question would be what sort of non-invasive measures are available to keep her comfortable when the end is near? I can't stand the thought of her going through prolonged suffering.
 

lgelb

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Very sorry to hear about your mom, Susie. Ask anything, any time.

BiPAP would help ease her shortness of breath. It is not being "hooked to machines" since a caregiver can take it off or put it on. Was this discussed?

The second question would be as regards a feeding tube placement to maintain her nutrition. Presuming that's not on the table, you will want to adjust her diet to thick liquids, ultimately -- blended food, smoothies and such. Including protein like nut butters, eggs, even ice cream if she tolerates dairy, is important.

Ultimately, most PALS resort to morphine in their last days to reduce the need for air. It promotes shallower breathing. By doing so, it also shortens life. Drugs such as benzodiazepines, codeine, and sedating antidepressants have some of the same effects and some PALS use them throughout. They can also be sedating, of course. You and your mom should discuss her preferences around comfort vs. cognition on an ongoing basis.

It sounds like your mom is eligible for hospice. I would interview whatever local agencies are in her insurance network and see if you like one. You don't have to bring them in, but if they're good, it could help you both.

Best,
Laurie
 

SusieQ

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Thank you so much for the information. The few times I've try to discuss such things with my mom she shuts me down, so I don't think she's ready to talk about it. She's clinging to her independence with both hands right now. In the end, it's her decision, and I've made it abundantly clear that everything is about her during all this...everything. We will continue to take things day by day, and hopefully we can make this as easy for her as possible.
 

nona

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I'm still clinging to my independence, much to the frustration of my parents.
 

SusieQ

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Joined
Nov 21, 2020
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Loved one DX
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11/2020
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My mother passed away on January 11th. Thank you for the information and your kindness. Wishing all here the best.
 
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