googie.cat
Member
- Joined
- Dec 13, 2012
- Messages
- 14
- Reason
- CALS
- Country
- US
- State
- District of Columbia
- City
- Washington
Hi, I'm hoping for some input from caregivers of people who have had bulbar ALS but chose not to have a feeding tube.
Our situation is a bit different in that my 72-year-old mother's journey began with frontotemporal dementia about 2 years ago, and then bulbar ALS symptoms arrived about a year later. She no longer speaks (more because she doesn't have the cognitive ability to as much as any physical issues) and is cognitively impaired so much that you can't say simple things like "tuck your chin when swallowing," because she can't follow directions. (She also has extremely impaired impulse control)
The decision has been made that there will be no feeding tube, which the family and her dementia doctor are all comfortable with.
A recent swallowing study showed what we already knew, which is that at this point she should only be on thickened liquids and maybe some very small bites of well pureed foods. Her throat muscles are "extremely" weak, and she silently aspirates any thin liquids. Her pharynx is all but paralyzed.
She is losing about a pound a week, but no drastic drops (she's 5'5" and now weighs about 120, down from around 140). She as yet as no problems with her legs, and maybe just very slight weakness in her hands. She walks about 1 1/2 miles a day. This is probably keeping pneumonia at bay, because she is still so healthy physically.
What I'm looking for are experiences of how the decline continues to go for bulbar ALS sufferers with no PEG. Will she one day just be unable to swallow? Will there be a period of where we just get smaller and smaller amounts in her?
She doesn't really seem to have any respiratory problems yet.
It's possible that the dementia could get to a point where she forgets *how* to swallow, but the ALS really seems to be well ahead of the FTD at this point.
I know this may be a painful discussion, but it's hard to find much information on this, so I'd be grateful for anyone who might take the time to talk about their similar journey.
Our situation is a bit different in that my 72-year-old mother's journey began with frontotemporal dementia about 2 years ago, and then bulbar ALS symptoms arrived about a year later. She no longer speaks (more because she doesn't have the cognitive ability to as much as any physical issues) and is cognitively impaired so much that you can't say simple things like "tuck your chin when swallowing," because she can't follow directions. (She also has extremely impaired impulse control)
The decision has been made that there will be no feeding tube, which the family and her dementia doctor are all comfortable with.
A recent swallowing study showed what we already knew, which is that at this point she should only be on thickened liquids and maybe some very small bites of well pureed foods. Her throat muscles are "extremely" weak, and she silently aspirates any thin liquids. Her pharynx is all but paralyzed.
She is losing about a pound a week, but no drastic drops (she's 5'5" and now weighs about 120, down from around 140). She as yet as no problems with her legs, and maybe just very slight weakness in her hands. She walks about 1 1/2 miles a day. This is probably keeping pneumonia at bay, because she is still so healthy physically.
What I'm looking for are experiences of how the decline continues to go for bulbar ALS sufferers with no PEG. Will she one day just be unable to swallow? Will there be a period of where we just get smaller and smaller amounts in her?
She doesn't really seem to have any respiratory problems yet.
It's possible that the dementia could get to a point where she forgets *how* to swallow, but the ALS really seems to be well ahead of the FTD at this point.
I know this may be a painful discussion, but it's hard to find much information on this, so I'd be grateful for anyone who might take the time to talk about their similar journey.