r/multiplesystematrophy

I (22M) have a parent (58F) who has probable MSA-C and ataxia. She refuses a lot of help and I don't know what to do. My dad works full time and can't always be there to help care for my mom. I am so fucking angry but I don't know at whom or what. She refuses to use a catheter despite being completely incontinent. Just fills her depends all day. She has a UTI. She thinks I hate her. She thinks I make fun of her speech if I just say a word funny or reference a joke where someone said a funny word or phrase. It makes it hard to be around her. She also has had undiagnosed anxiety and depression long before her prognosis or symptoms. When I returned home from college, I found she had not gone to PT or OT for SIX MONTHS. She uses her walker incorrectly and refuses to learn how. I got into a doctorate program for physical therapy and I start at the end of August. I feel so guilty going off to college. My mom doesn't want to be alive anymore. I get that she wants nothing invasive, but I wish she would care about her dignity. I don't want to see my mom wet her pants anymore. I want my mom to shower herself regularly. I feel so alone. I have aunts that help me, but we can't want it for my parents. My dad controls the finances and is not the most capable caregiver. I am so scared. I want to see my mom well-groomed, I can't believe I am saying it but I hate being close to her. I feel like I am a bad son and a weak man.

This is my first post here and on reddit in general so apologies if anything is wrong and for this being so long. Im mostly looking to see if anyone has dealt with what we have for some moral support or any possible advice. TLDR at the end ~

My dad was diagnosed with Parkinsons back in about 2021. From what i understand at first they didnt even want to diagnose him with it? But they eventually did and it started this hell of a journey.

Some background: He's always dealt with being physically unstable and a lot of the gastrointestinal issues, only really had tremors when anxious or had bigger emotions. Over time he's gotten worse with balance, speech, and being able to walk on his own. Fast forward to about November/December 2025, at this point his diagnosis had been changed to PSP ( Progressive Supranuclear Palsy ) and his body started taking a HUGE downward spiral. I'm talking 3-5 falls a day with a few causing trips to the ER, eating is fairly difficult, he drools almost constantly, speech is slurred and very mumbly due to his face being twitchy and his mouth not wanting to cooperate, but he's very obviously there mentally. Now he's VERY stubborn and getting him to exercise and help himself has been extremely difficult, but he has been doing physical therapy at least once a week ( insurance wont agree to more ) and we all know that has not helped at all but my mother has been trying her hardest to get him to do things. Some of his other issues have been extreme obsessive behaviors, paranoia, and addictive tendencies. He also has started to occasionally break down emotionally and cry for very short bursts or tell me how hes proud of me and loves me and will tell my husband and me how thankful he is for helping out.

Now with his medication, he's been on Carbidopa-Levodopa pretty well since the beginning on different stages of doses, he also takes CL Extended Release. The first dosage I was made aware of was 3CL every 3 hours even throughout the night. But I believe that started a year or so ago. Back in April this year I managed to get him into a really good doctor for Parkinsons and movement disorders and she gave us so much hope and information that it actually felt like a move in the right direction. She's actually the one who diagnosed him with MSA based on his MRI and how his brain stem looked. This also started a new dosage of, i believe, 2 CL every 3 hours, but not overnight, after a very lengthy tapering down. He's currently on 3CL every 4 hours with 1 1/2 CL-ER 3 times a day with a few other medications for anxiety, spasms, and blood pressure. All of which has actually helped with his falls, just not so much anything else, which we are starting to think might be due to him abusing the CL.

His abusing of the medication started probably 3ish years in, that I know of, and it was him taking an extra one or taking them more often than he was supposed to, which often resulted in him basically overdosing himself. As of January or so, my mother has had to put his medication where he shouldn't be able to reach it and putting his specific doses in a pill case by hour, but he is still taking it early or begging/guilting us for more because he's 'crashing' and thinks it takes half an hour to kick in. We've recently started noticing that he is actually hoarding both his CL and ER pills and hiding it from us. It almost feels like we're dealing with a toddler that is addicted to pills and its absolutely terrifying. He believes he 'knows his body' and that he should be able to take it whenever he feels like he needs to but it is clearly just hurting him more and more. So we've hit this wall and we're at a complete loss of what to do and how to help him.

Im so sorry for the super long post, and if you read it all thank you. If you're also dealing with any of this I feel for you and I hope things get better.

TLDR: Since about 2021ish my father has gone through being diagnosed with Parkinsons to PSP to MSA and has been abusing his Carbidopa-Levodopa. He deals with falls, obsessions, and paranoia. Now he's at the point that hes hoarding pills and hiding it from us and we have no idea what to do to help him at this point.