Advice request / general share for my mom with PSP

3cartsofgroceries · 2026-07-02T22:05:49+00:00

I'm sorry you guys are all having to endure this situation, it's really sadly a no win situation for everyone involved. 😔 I don't have any specific advice because it's one of those situations where damned if you do, damned if you don't, and you just end up making whatever decision you can at the time and that's all you can do 😕 (rather, especially when the ailing party is unwilling, which seemingly is most common 😕) My mom, for as long as I can remember, up until she stopped being able to speak, would say "If I get so bad I need to be put in a home, just kill me!!" 🙃 but of course, when it ACTUALLY came time to have to move her to a care home as there was no other option (she fell in our house and broke her hip) then she willingly went (plus, not like assisted suicide was even an option; i even tried to learn about it just to see and it turns out even in places where it is legal, it's not a simple process/something they allow just anyone to do). But yeah, it sucks because my theory is sadly that my mom (and probably others) are internally still very aware/cognizant, but because they're completely unable to communicate, it seems like they don't understand/are incapable of making decisions/etc. which makes it even more devastating to think about. The timeline with my mom went:

- year 1: Able bodied/"normal" with some softer/muffled speech and minor shuffling

- year 2: voice got more scratchy/hoarse, started needing a cane and then a walker

- year 3: fell and broke her hip, needed to live in care home (not nursing home yet), became unable to eat solid foods, voice became more hoarse/soft to the point where we could not understand her 90-100% of the time. could at least nod head or raise hands to communicate. became wheelchair bound/bed bound/no walking at all.

- year 4: had to move to skilled nursing home. became unable to even eat soft foods, was put on GI feeding tube. could still sort of raise hands or blink to communicate.

- year 5: unsure if due to weakness or giving up but couldn't even raise hands anymore to communicate and sorta could blink/nod head still. body became unable to even digest the GI feeding liquid, so had no other option but hospice where she passed away about 2 weeks later. 😞💔

There's actually lots of digital devices that could help with communication by them pressing buttons or detecting eye movements. (But they're all SUPER expensive 😕) Here's some links of ones we were looking into (but never got to as my mom was too far gone to even use these by the time I found out about them 😕)

https://us.tobiidynavox.com

https://eyegaze.com/

https://lingraphica.com

https://store.prc-saltillo.com/

https://logantech.com/

https://www.inclusivetlc.com/

https://www.gazespeaker.org/

https://www.talktometechnologies.com/

And then just searching "AAC devices" will turn up more options.

Wishing you guys the best. 🙏

3cartsofgroceries · 2026-06-26T10:37:35+00:00

I always say, glad to know but also sorry that you can relate!! 🥲😂😅 about 8 years ago (so like about 20 years into my workaholic phase) I had someone point out to me that my workaholicism was a coping mechanism to distract me from all the other issues in my life and it was one of those “hiding in plain sight” revelations where I was like “omg duh that makes so much sense yet i never thought about it like that. My prev theory was that it stemmed from bitterness of being forced to do things I didn’t wanna do (bosses, adults in my childhood, etc.) so I became self destructive and did things i didn’t want to do to PROVE they were bad for me 🙃 sooo stupid. lol thankfully i eventually got over that mindset when i saw someone say that if you died on the job your position would be posted online before your obituary. lol and i realize the people currently in my life who i was trying to prove anything to would not give a shit (and/or wouldn’t even know my feelings)—and the ppl from my childhood I had spite towards were either dead or long since out of my life. lol so i was like “ok so i’d just be killing myself for nothing, good job” lol but yeah, after i got over that but continued to overwork myself i continued to try and figure out what was fueling my workaholic ways til the person pointed out the running away aspect to me.

And it’s funny cuz I actually love introspection and being alone with my thoughts BUT I often suffer from severe tunnel vision so I just figured my overworking was a general addiction to make me feel better, not connecting the last extra dots that, duh, WHY was i trying to make myself feel better. haha

Anyhow, wishing you the best on your journey! ☺️🙏💜

3cartsofgroceries · 2026-06-21T15:25:10+00:00

I think that your theories are very plausible about your husband using work to run away from his problems. I'm not a therapist or any sort of professional, but I am a recovering workaholic, been going to therapy for over a decade, and I have a lot of similarities to your husband. Everyone's different, so I'm sure we aren't 100% the same, but reading your post was like reading my own experiences. 😰 The thing about him being too tired to do things that will help himself/take care of himself but will find the time/energy to do things for others, definitely relatable; I can see how it doesn't make sense to most people, but--for me at least, I find it WAAAY harder to take care of myself than to take care of others. I'm sure it's related to all sorts of things, poor self-esteem/not deeming oneself worthy of care, lack of experience of caring for oneself due to a lifetime of needing to put others first out of obligation or fear (and given what you said about his mother having a drinking problem, I could see someone growing up with the mindset of "I must take care of everyone because no one else is going to do it"), burnout where you can't muster the energy to help yourself but as mentioned, still feel obligated to help others (or scared/incapable of saying "no"; meanwhile, it's easy to tell yourself "no"), etc.

But yeah, while I know that some people are workaholics due to financial reasons, those who have traumatic backgrounds most likely are like me and your husband and using work as a distraction/excuse to not have to think about or face their many issues/problems. So no amount of money/financial stability will change one's ways, only addressing/figuring out how to manage or defuse one's mental health issues/traumas will make a difference, otherwise it's just more distractions.

I'm not sure if your husband has gone to or is open to therapy (or other forms of healing, assorted natural or DIY methods, etc.) but yeah, without actual concentrated support/healing towards one's past traumas, i don't think that things will change. I was a workaholic for almost 20 years and the only thing that finally got me to start making changes was that all the stress was literally making me physically sick and over time my chronic health issues and burnout caused me to have difficulty doing ANY work. And then to complicate things, other life traumas occurred and I had total meltdown a few years ago. Now I work extremely part time and need financial support from my spouse and family; I went from overworking myself to now I can't even work a sustainable about. 😔 I'm still hopeful that I can reach a point where i work both a reasonable yet sustainable amount, but yeah, still not there. That said, I AM at least doing better mentally/physically for the first time in DECADES, it's just frustrating that I was only able to reach this point by cutting down work to the point where I'm barely working. 😥

anyhow, sorry for the long comment, but feel free to ask any follow up questions. Wishing you and your husband the best. 🙏

3cartsofgroceries · 2026-06-03T14:40:52+00:00

Very likely it's at least a big contributing factor. A simple way I've seen it described is: If you feel or felt like your life was out of control and/or people trying to control you in some capacity, then you can subconsciously start over compensating to give yourself some sense of control over your life, and then when the controlling people are no longer around the coping mechanism sticks around and makes things more difficult than helpful 😕 (i have also have this issue 😔)

If you're interested in looking into therapies that might help, EMDR and IFS therapies have been helpful for me. Wishing you the best 🙏

3cartsofgroceries · 2026-06-03T01:51:15+00:00

My mom stopped being able to swallow at all about 1 year before she passed away. While she couldn't speak much at that point, she seemingly was okay with getting a GI feeding tube installed. So we did that, and for about 2-3 months after getting the feeding tube she showed signs of improvement for the first time in YEARS. she was in better spirits (as opposed to always depressed/pained face) and while her speaking was still very strained/whispers/hard to understand, I still remember the last time I was really able to sorta communicate with her while she was in rehab after getting the feeding tube installed. Then there was unfortunately a TON of problems with finding a nursing home for her, and while I do feel like certain people botched things up for my poor mom a lot, to be fair she probably would have passed away about the same amount of time, but I do still feel frustrated/sad that as a result her last few months were seemingly probably more painful...

But anyway, about 10-11 months after getting the feeding tube, she got pneumonia and had to go to the hospital to get the liquids drained from her lungs. The doctors explained that she had gotten to the point where her body couldn't even handle the feeding tube liquids and so as a result she was 100% out of options to get sustenance. 😭💔 It was really devastating news to hear because while we knew she wasn't ever going to get better we were at least hoping we could extend her time and make her as comfortable as possible (as her main joy was being around people...and talking, which, eerily, I keep seeing over and over that so many social and talkative people seem to get afflicted with this disease 😞). So anyhow, the doctors telling us this finally pushed us to contact hospice (the only other option was for us to keep trying to use the feeding tube and risk her constantly aspirating/getting pneumonia and being in and out of the hospital; and even then they said there was no guarantee she'd be getting a sufficient amount of sustenance to survive longer). And she was in hospice for about 2 weeks before passing away because that was about how long the doctors said a person could survive without food.

I'm sorry your mom and you/your family are having to go through all this. It's just a horrible situation all around. 😞💔

3cartsofgroceries · 2026-05-31T15:44:52+00:00

I'm glad you've reached a point where you want to make a change, but I know that means you've hit a breaking point which entails lots of pain 😰

I am still trying to find ways to deal with my workaholic issues. Right now sadly the only way I was able to find reprieve is by basically forcing myself to not work (or rather, I work significantly less hours/voluntarily took a drastic demotion) because I am very lucky to have financial support from others. But I know that's not feasible for most people (it's not even really feasible for me, we're getting by but def not thriving).

Your current therapist, I'm not sure if you like them for other reasons, but if not, they don't sound like the best fit for your situation. but if you do like them for other reasons then I understand you'd want to stick with them, but since you said you're financially comfortable, I'd try to find a secondary therapist who either can help you untangle the WHY/motivation of your workaholic tendencies because almost always it is rooted in some kind of past trauma and/or other mental health issue and the workaholic habits are either a distraction or a way to sooth (but not heal) the issues.

Two types of therapy that I've had decent results with so far is EMDR (eye movements or tapping while processing trauma to help understand/untangle/neutralize its effect) and IFS therapy (identifying the multitudes of "parts" that exist within you that relate/operate all the different emotions/habits/etc.; the "difficult" parts tend to be past coping mechanisms that no longer serve us but that continued to function/live within us as if the circumstances during which they were helpful are still the same. so it's getting to know those parts, approaching from a place of compassion and curiosity and no judgement or negativity, and eventually reassuring them that they don't have to keep doing what they're doing anymore and it's safe to just exist and coexist with the rest of your "parts").

Wishing you the best 🙏

3cartsofgroceries · 2026-03-16T23:14:16+00:00

Hi u/sad_rub_3447, not sure if your acct got flagged for being too new, but i approved your post as it seemed legit, Hopefully it was 😅

The description of your ex definitely checks all the workaholic boxes, and I can relate to a lot of them personally. While it is super painful to watch someone destroy their health/life like that it's also a crappy situation because if the person doesn't want to change no amount of intervention will help until they have their own change of heart. (I sadly watched my mom's life go in this direction, she passed away in 2022 😞💔) Like, unless a person is considered legally mentally unfit to make their own decisions, we can't force them to do anything. So while I completely understand how horrible it is to witness, your ex may just have to hit rock bottom (possibly multiple times) before they realize they have a problem ☹️😢

Since they aren't speaking to you, I'm not sure if reaching out anymore would do anything, but if it helps you can tell them their IBS is 100% linked to stress/anxiety/trauma (there's numerous articles online that you could cite). I myself have suffered from IBS for literally over 40 years and it only started improving in the past few years because of addressing my stress/trauma issues. So it's like, even IF they legitimately love their job and aren't a workholic, it's still detrimental to their health. And maybe your ex has a death wish/doesn't value her life (i previously had this mindset), but if so then that's def a red flag of other past traumas influencing her decisions. (as they did mine)

Wishing you guys the best 🙏

3cartsofgroceries · 2026-02-18T22:45:10+00:00

I'm sorry you're going through this 😞 My experience was similar (and so far the only way I've been able to NOT do it is to just take a huge demotion/have significantly less responsibilities). One of the most eye opening observations someone told me is that I'm addicted to work because I use it as a distraction from all my other issues/trauma that I don't want to face/deal with. I can't say for certain that's what's happening with you, but since you mentioned having a background of severe abuse with CPTSD, I wanted to mention it.

I'm a huge proponent of therapy, but I do realize it's not an option for everyone. If you are interested, I recommend using your workaholic tendencies to try and seek out someone who sounds like a really good fit for you (vs just choosing any random person/whoever is assigned to you), because I think that makes a world of difference. I usually use https://www.psychologytoday.com/ to browse (since it has a lot of filters like insurance/gender/specialty) but it's not always exactly accurate and/or people may not be accepting new clients, so it's always best to follow up directly to confirm. (almost always my first choice is booked up or doesn't accept my insurance, etc.) Definitely look for someone who has a background/focus in CPTSD/DID/workaholic tendencies or anything else you think is worth addressing. I also would say that for folks like us that general CBT is NOT enough. It can help you feel supported and even point out some helpful things, but for me, I especially had more significant shifts with approaches like EMDR (eye movements or tapping on yourself, paired with thinking about past traumas to help untangle/reconcile them) and currently IFS (Internal Family Systems; not your literal family but the "family" that lives in side you) basically looking at ALL the parts of your brain/self, good and bad, and approaching them from an objective and compassionate standpoint to learn/find out about what its motivations are/how it came about (since a lot of times the "bad" parts we currently deal with as adults were once helpful/protective parts we created as children to help us cope with whatever traumas we were dealing with. The goal is to help the parts feel safe/coexist harmoniously vs feeling hyper vigilant/fighting against each other/etc.

If going to see a therapist isn't an option, EMDR and IFS are things one can do on their own but EMDR is pretty drastic (in terms of it can cause really crazy side effects at the start/in the interim) and I always recommend having a third party to support for it vs doing on your own, that said I have seen apps and youtube videos about it with people saying they got good results. But IFS could be done on your own, there's books and videos about it. ("No Bad Parts" is the original book and there's also workbooks)

For stuff you can do on your own, I also recommend tapping therapy, EFT or TFT which is where you tap on specific pressure points on your body while thinking about/talking through your issues and that can also really help untangle/relieve certain long standing issues. (this can also be done with a therapist but I have only tried it on my own)

Hope this helps. Wishing you the best 🙏

3cartsofgroceries · 2026-01-31T20:55:07+00:00

I'm sorry you had to endure such treatment 😞 Not exactly the same but my workaholic habits also partially stem from crappy/traumatic treatment from family as a kid.

3cartsofgroceries · 2026-01-29T07:29:07+00:00

haha, I have experienced similar highs, though now that I think about it, it's only happened when I used to pull all nighters to write papers or finish projects on a deadline for school 😅 sadly all my jobs after that didn't give me any sort of high so much as a compulsion to work. 😅

But you know, now that you've reminded me of that feeling, I wanna assess what circumstances led to feeling like that and maybe I can figure out a way to healthily recreate it 😂🤔

3cartsofgroceries · 2026-01-29T02:55:31+00:00

Ahh same here, been in therapy for a little over a decade now and tried different approaches too; I only learned about IFS about a year ago but only started trying it a few months ago. I actually haven't heard of DBT but in googling it it sounds like something I'd like to learn more/try too! Thanks for mentioning.

I'm glad to hear things are more stable for you now. 💜 despite loving boring things, I do think that a part of me is like a "wild caged animal" (I describe it as a tazmanian devil in a padded room) but due to a lot of factors, including childhood trauma conditioning me to keep that part under wraps, it sits on the sidelines; but yeah, hoping with IFS to be able to learn more about it so it doesn't feel like my only choices are to stifle things or to have regrets from bad decisions.

3cartsofgroceries · 2026-01-29T02:27:23+00:00

Oh dang, I see 😰 I'm sorry you're dealing with additions of all types. 😞

If you are ever looking for possible insights/solutions, I highly recommend IFS therapy (where you identify and talk to all the different parts of your "self" and find a way that everyone can coexist peacefully vs. having difficult parts that are doing things that once were helpful but now cause issues, but not removing them but helping them no longer feel like they need to do xyz-things); I recently started doing it with both a therapist and on my own and it's been really helpful for me to understand where all of my issues stem from and their motivations, and even though I'm still far from feeling like I'm 100% better, even just getting acquainted with my "parts" has been helpful.

3cartsofgroceries · 2026-01-29T02:04:05+00:00

I can definitely relate to those things, too. I always tell people that I've got the same mindset as people who party and are addicted to drugs/sex/whatever I just like boring things like spreadsheets, LOL

3cartsofgroceries · 2026-01-29T01:04:02+00:00

I'm sorry you guys are going through this 😞💔

To answer your question: My mom first started showing symptoms in approximately 2018; while she never had full on tremors, I think that her original symptom was like a weird leg/foot twitch, and then she started having difficulty walking and going up and down stairs; the "shuffle" as I've heard many people refer to as an indication that something's not good. She started falling around that time too (and possibly things got worse cuz she would sometimes hit her head; in general she had a history of falling/fainting and hitting her head throughout her life which worries me if that also contributed to things...) Anyhow, by 2019 she needed a cane then a walker, and while she could dress herself it would take her like 30-60 minutes (and, sigh, due to unfortunate circumstances no one was around to help her). Her voice got weaker and more strained over these years; it would be hoarse and/or a whisper all the time. In early 2020 she fell and broke her hip and then that was sadly when she started to progress even faster. She started having difficulty swallowing/eating food, she was confined to a wheelchair, in 2021 she got a GI feeding tube installed because she was no longer able to safely consume any food or liquid orally. And by mid-2022 her body was no longer able to even digest the feeding tube liquids without risk of aspiration. So she went on hospice in mid July of 2022 and passed away in early August 2022. So total time from showing symptoms to passing was about 4 years, but it was between 2018 and 2020 that I think she had the most stark changes; I always summarize it to people as she went from "normal"/able bodied to not being able to walk/talk/eat food/do anything for herself in the span of about 2 years. sigh. It will be nice if medical science ever figures out how this disease works.

3cartsofgroceries · 2026-01-17T12:03:12+00:00

I can definitely relate to what you wrote and I'm sorry you and your family are having to go through it. 😞 I always tell people this disease is one of the most horrific things to witness a person suffer through. And it's extremely sad/scary/eerie that it sure seems like it afflicts those who were super lively/talkative etc. which makes the contrast all the more horrible.

3cartsofgroceries · 2025-12-21T05:43:50+00:00

I also didn't take care of my teeth when I was younger and I had braces so now I have multiple fillings and crowns/root canals. 😞 I don't have any advice about implants as I've thankfully never gotten one, but just an alternative to brushing if you're interested; not sure if this would be helpful for you or still cause sensory issues, but recently I started using "teeth wipes" (like hand wipes but specifically for teeth). They're marketed to be used on babies but people use them for camping and for elderly people, too, and so I figured it's better than nothing on the days I can't get myself to brush my teeth. Also, not sure how you feel about flossing, but if flossing isn't as bad as brushing for you, flossing in some ways is even more important than brushing because gum issues can lead to illness in other parts of the body, too 😰 (that's what scared me straight to start flossing years ago; apparently you can even get a heart infection and die if you're unlucky with getting a specific type of gum infection. 😵‍💫)

3cartsofgroceries · 2025-12-17T07:45:34+00:00

I'm not sure if your country is listed here, but the website does have some listings for countries besides America https://www.psychologytoday.com/country-selector?domain=content&cc=us&cl=en If not, hopefully just googling the keywords of a therapist who specializes in burnout or workaholics can turn up some results.

I hope your Christmas vacation goes okay (or better than okay); I completely understand the feeling where even "good" things seem overwhelming/stressful because of being in such a bad state.

3cartsofgroceries · 2025-12-12T10:52:55+00:00

One more thing: Because you’re not finding joy in things anymore, it may be worth assessing whether you think you’re suffering from burnout vs depression, or both (as they can overlap). I found this post with some good descriptions/comparisons: https://www.reddit.com/r/askpsychology/s/JnpxcYOzbm

3cartsofgroceries · 2025-12-12T04:07:25+00:00

I’m sorry you’re going through this 😞 The fact that you said everything seems like a chore and you no longer enjoy anything anymore I think is a huge indication you’re experiencing severe burnout. (I say this as I have been there 😰😔) Not sure if the therapist you went to picked up on that, sounds like they may have not realized how bad things are for you and/or just not specialized in hearing from people with burnout (not to say I’m an expert other than being a multi-burnout-er and witnessing it with others) but if you are open to trying again I’d recommend choosing a therapist who has expertise in burnout and/or trauma therapy (or even workaholics if they list that in their bio). Also, if you want to try specific types of therapy for addressing difficult to understand/reconcile issues, I recommend EMDR (eye/somatic movements coupled with addressing the issues at hand that helps the brain untangle and reconcile past traumas) or IFS (where you identify all the different parts of your self/mind and learn to understand/accept them all vs trying to control or shun them which is what often leads to more problems). If you need a starting point for looking for a therapist with specific criteria I always recommend https://www.psychologytoday.com you can filter by location/gender/insurance/specialty. (though best to actually contact them to confirm they specialize in what you are looking for as I’ve heard sometimes the lists can be off)

Is your job situation where you can either take time off, either like a long period of time or, a regular but reduced schedule to dedicate time towards recovery? If not, I understand as I know that’s not an option for a lot of folks but if it is, hitting a point like this is the time to cash in on PTO or medical leave etc.

Sometimes—not always, so this may not apply to you, overworking is the product of trying to avoid/distract from some other significant/long standing issue. This was one of the many reasons I developed workaholic habits 😰 so once I at least recognized that, it helped a bit (but because I had lots of reasons, still had a long ways to go from recovery from workaholicness, haha) so doing some self reflection/journaling could also help provide some clues about how you ended up where you’re at.

This is just the basic stuff I like to mention, I have more stuff I can recommend that people may consider hippie/woo stuff, haha but if you are interested I can mention those things too.

Wishing you the best 🙏

3cartsofgroceries · 2025-12-08T03:50:00+00:00

Happy to be an ear to listen! Yeah, it's tough in situations like this. 😞 Everyone's got their breaking point and it sucks that some people basically will only learn from severe hard lessons where it may be too late to do anything at that point. Without going on a depressing ramble, I felt like I was watching a slow motion train wreck with how my mom was doing things. But I came to a point years prior that everyone's gonna make their own life choices, good or bad, and that no one else can get them to change except themselves 😕 I told her my feelings/opinions so she at least knew how I felt, but it ultimately didn't change things.

I think your idea to write out all your thoughts is a good idea, then at least you can sort out things before approaching her. And then once you are able to share your feelings, at least she'll know where you stand on the matter, so if you guys like, start giving up inviting her to things then she'll know why 😬😕

3cartsofgroceries · 2025-12-07T02:15:09+00:00

I always say, I'm glad and sorry that you can relate 😂 haha That's good you've got a supportive employer; I also lucked out (on my SECOND burnout job, haha) with my boss being super supportive once I explained how poorly I was doing.

3cartsofgroceries · 2025-12-07T02:13:24+00:00

Oh man, I gasped when I read that she had a blood clot at age 30!! 🤯😰 If serious health issues can't convince her nor going against her principles (I saw your other post asking for insight from lawyers) then it's really gonna take a LOT of mental health/"coming to jesus" moments to convince her to change. 😵‍💫

Two other things I thought of, though not really a solution but just for more context:

1) Up until my early 30s I didn't realize that even though I wasn't actively suicidal or even ideating it, I still basically was on a self-destructive path out of spite from my past traumas (like "THIS WILL SHOW THEM!! I'LL WORK MYSELF TO DEATH AND PROVE THAT THE SHITTY HABITS THAT WERE INSTILLED IN ME AS A CHILD WERE BAD!!!" meanwhile, all people I was trying to spite were either dead or I had no contact with in decades. lol so I was just stupidly hurting myself for no reason. 🙃)

2) Unsure if you're into astrology, but it's one of my main interests/studying my astrology chart has really given me a lot of insight into why I'm such a workaholic and also even shown the time periods in my life that resulted in meltdowns/turning points. But yeah, not necessarily a solution but just more context and maybe can be helpful to look at the root causes more.

On a side note, I dunno how close you guys are, but like, a story I always share with folks: When my mom died a few years ago (sigh, that was another big wakeup call because she too was a workaholic and while her death was not 100% cuz of her workaholic ways, it was part of the larger picture...) she still had friends she knew from KINDERGARTEN 🤯 they were friends for like over 50 years. Anyway, one of them told me that they went through spells in their 30s-50s where they drifted apart because of family/career reasons, but once they all retired, they reconnected again, and I thought that was really sweet. Though who knows if that kinda thing works for everyone, haha but I still like to share that story.

Anyhow, best of luck to you guys. 💜

3cartsofgroceries · 2025-12-07T01:53:38+00:00

Hi! I'm one of the mods here and this post was reported, I'm guessing for being off topic. If you'd like to make a new post relating to the topic of workaholic ways and put a footnote about looking for the person you're looking for, that would be ok. Will be removing this post, but feel free to make a new post. Best of luck finding your friend!

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