u/Frequent_Number6155

Hey guys , I am a 24 yr old full time care taker of my father who is fully paralyzed and on a ventilator. A lot of the stuff I’ve seen over the past few years and just watching my dad decline has really messed me up . I started having extreme panic attacks all the time , air hunger , losing weight , sick all the time . So i figured along with medication of course i would start therapy . Well I’ve been with this therapist for the past two months , I’ve shared pretty horrific things with him , even told him i started self harming again during the last appointment, and towards the end of the appointment he said “ so i know a lot of this is circumstantial and you might just need to vent but is this benefiting you ?” And i froze and i said well yes i look forward to my appointments and i feel relief after them , and then our time was up he said he just wanted to make sure and we were done . Ever since then i can’t stop thinking about how either I bore him .. he feels like I’m wasting his time .. idek but my brain wont let it go lol . Thinking about canceling my next appointment, would anyone else feel a certain way about this ?

Hi guys hope everyone is doing okay . My dad has had als for many years , he is on a ventilator now with a trach . All of this was done last month , since then he is in so much pain . Not the trach or his lungs , it’s his whole body now . All day we massage and stretch his legs, arms , wrist , head , his elbows are hurting , we adjust him so often bc no matter how many pillows we put under him it doesn’t help . Before our trip to the hospital he wasn’t in pain , he very seldomly took pain medicaton. Now he has hydrocodone and Dilaudid , which doesn’t seem to be helping that much . So i can’t wrap my head around what happened in the past month. He is also having panic attacks several times a day even on his Lorazepam. He’s vitals are good but I’m worried this is the beginning of the end :( . Has anyone had this experience?

Hi Guys ! I am 24F full time taking care of my father who has End stage ALS along with my 57F stepmom. My dad has been sick for a long time but recently he was put on a ventilator and got a trach . Which meant caring for him completely changed . He now needs 24/7 care with at least two people in the building at all times just in case we need to reposition him or he needs to use the bathroom. Over the past two months I’ve been watching the way she cares for him , and i simply don’t agree with most of it. She doesn’t understand much about American medicine (she’s not from here) and she’s somehow his power of attorney. I’ve watched her yell at him for having an accident twice , I’ve seen her blow dry his pants bc he had an accident and it was too much work to change him , a few weeks back he got pneumonia and was septic . Before this i told her i knew he was sick , he was showing all of the symptoms . I said he’s got blood in his urine , covered in sweat definitely has a fever (she told me she didn’t have a thermometer!?) so i had to go buy one , and hospice had to convince her that something was wrong for him to get treatment bc she would not listen to me . She’s quite nasty to me , she’ll throw his hoyer lift swing at me when she wants help lifting him , she shoves stuff in my face and tells me to do it like I’m her child . I’m staying in their home and she doesn’t feed me or let me leave ( I AM 24) . We have received a little relief from caregivers 4 hours a day but those hours she leaves me to stay with him . I’m 20 , I’m in debt , i don’t have enough money to pay my bills , I’m doing everything i can. She will never thank me for it or be kind to me that’s for sure . Everyday i debate on saying I’m not coming back do this yourself but i don’t want to abandon my dad . When we fight he has panic attacks so I’ve been holding my tongue but i feel like im going to freak out sooner rather than later.
SORRY LONG RANT ANY ADVICE WELCOMED

Hello !
My dad just got home on a home ventilator and we are having some trouble getting used to everything . His home ventilator is pretty heavy (it’s small just heavy) and it didn’t come with a case or anything . Since he’s gotten home I’ve been staying with my stepmom helping, everytime we move him to his chair , the toilet , the bed , etc. it takes the both of us bc I have to hold the ventilator while my stepmom moves him . My worry is that she will always need another person to transfer him , we have no in home nursing or caretakers due to him being on a vent and trach it’s been super hard to find anyone . Any advice ? I’m not sure if there is a case we can hook to the lift maybe . Either way I know he will need more care , we just haven’t figured that out yet.

Hello , my Dad just got a trach and vent on Monday . Today he has been gurgling loudly and panicking. we can’t seem to suction any of it out , which i think is scaring him more . Has anyone experienced this ? Does it get better ? How can i make him more comfortable? We are in the hospital still and the nurses haven’t been the best at being there to help us and talk to us . We are exhausted, overwhelmed, and frankly terrified of the future :/

Hello , my father has had ALS for 7 years now . He’s in the hospital and most likely will be sent home on a trach eventually. My worry is we have been looking for nursing care for years. YEARS . Multiple agencies, only paying around $10 , can’t get in touch with anyone . What can we do to find him a nurse bc i know he will need one . He is on CCW insurance , which is what we were told he had to be on due to his ALS but we hear nothing . My stepmom is reaching her breaking point , me and my sister both work full time with bills. I don’t think she can handle this alone , and i am honestly lost . Seeking any advice !! Thanks !