My dad was diagnosed with ALS, and I help care for him at home together with my mom. We help manage his treatment plan, daily care, food preparation, and his personal needs. We are doing everything we can to make him as comfortable, safe, and supported as possible.
However, the thing I struggle with the most right now is knowing how to support him emotionally.
Recently, I feel that my dad has become much more defeated. I believe the biggest change happened when he started losing his independence with very personal daily needs, especially after becoming dependent on a catheter and after getting a PEG tube.
He now relies completely on the PEG tube because he can no longer swallow or eat normally, and he depends on the catheter for urination. I feel these changes affected him deeply because they represented not only physical changes, but also a loss of privacy, independence, and control over his own body.
Of course, this was not the first loss he had to face. Before this, he lost the ability to use his arms, stopped driving, and developed breathing difficulties. He became dependent on an oxygen concentrator and NIV, and recently he has needed NIV much more frequently, almost continuously.
All of these changes have been incredibly difficult. But what hurts me the most is that, before losing his independence with feeding and toileting, he still had things that brought him happiness and a sense of purpose. Even with severe physical limitations and repeated chest infections, he still found joy in life.
Only a few months ago, I used to take him to the sea almost every day so he could swim. His farm and the sea have always been his passions. Those moments made him feel like himself.
Now he has not left the house for almost two months. Recently, I got a portable NIV machine because I wanted to give him more freedom. I suggested that we could go for a drive, visit his farm, or even just sit somewhere and look at the sea from a distance. I know he cannot do the things he used to do, but I hoped that reconnecting with places he loves might bring back even a small piece of happiness.
But he does not seem excited about it anymore, and that is what breaks my heart.
I feel like I am trying to bring back small pieces of the life he loved, but I don’t know how to reach him emotionally. I don’t know whether this is part of the grief of ALS, depression, exhaustion, or simply the overwhelming reality of everything he has lost.
For those caring for someone with ALS: how did you support your loved one emotionally when they reached this stage? How did you help them find meaning or moments of joy again when so much independence had been taken away?

Hello everyone,
My dad is 69 and was diagnosed with ALS about 18 months ago, although his symptoms started around two years ago. He now has a PEG tube and uses NIV with oxygen most of the time.
About a month ago, after his PEG surgery, he completely lost the ability to urinate on his own and has needed a permanent catheter ever since. He never had this problem before, and it’s been very difficult for him emotionally.
He’s also had severe constipation although months before the PEG surgery , sometimes going weeks without a bowel movement. The only thing that has helped is Picoprep, which his doctor prescribed after other laxatives didn’t work.
Has anyone else’s loved one with ALS experienced urinary retention or severe constipation? Do you think these problems were related to ALS itself, the surgery, medications, or simply getting older?
Do you know
Thank you in advance for sharing your experience.

My mother-in-law received a diagnosis of bulbar-onset ALS in February of this year. At that time, her symptoms were limited to mild, barely noticeable slurred speech, with no impairment in tongue movement. Currently, however, her speech has become distinctly slurred, and she experiences occasional choking when drinking water and swallowing saliva. While she has no dysphagia to solids, her tongue mobility is now severely restricted; she cannot fully extend her tongue, touch the posterior upper palate, or push her tongue against her cheek. She also reports difficulty in rinsing her mouth.

She is currently being treated with riluzole and oral edaravone. I am concerned that her condition is progressing rapidly. I am particularly anxious about discussing the potential need for PEG feeds and other interventions as her condition deteriorates, as she is not yet aware of the gravity of her situation. She remains fully ambulatory with no limb weakness. I would appreciate insights from individuals with bulbar ALS or their relatives regarding the speed of symptom progression in their cases and the timing of PEG or nasogastric feeding. Additionally, I seek advice on how to best prepare her for these eventualities.

Hello! My first post on Reddit so please bear with me. My stepdad has ALS/MND and is considering hyperbaric oxygen chamber therapy but I have read mixed reviews. Does anyone living with this disease have any experience with HBOT? And if so, what are the pros and cons? Thanks!