RCF falsely progressed my mom's dementia and I feel so guilty

WednesdayG · October 2023

Hello- my mom has dementia and was not adjusting well to a new RCF (first few days). So they gave her risperidone. I asked them to stop it and they told me they did, but they really didn't. Several times, at the beginning, hospice kept assuring me that the RCF had stopped the meds. But they kept giving it to her unbeknownst to me or to hospice. She was doped for 7 weeks at a fairly high dose. She became bedfast even though she wasn't before (she could transfer herself in/out of wheelchair, have small conversations, do word search puzzles which she loved to do etc)

She became a zombie and eventually immobile...she slept night and day and I kept asking what was wrong with her. Hospice kept telling me that she's dying (I kept askign "are you sure she's not on this medication" and they said "no" because the RCF was giving it without them knowing) and they told me that she was "active" meaning they thought she would pass within a very short period of time. I took a leave of absence from work to be by her side to give her food/water when she would wake up to keep her from being dehydrated.

Lo and behold, I found out she wasn't actively dying and was actually drugged! Weeks I sat there while they gave her medicine and I never asked them what was in their meds for her. I trusted that they'd stopped. When I did find out, I had her officially removed from the meds. It was awful. Removing the meds made her more alert and not sleep so much. But the result is that she lost so much mental ground, she lost muscle strength, became contracted and immobile, and is now permanently on a catheter (read: UTIs galore)

When she came off of the meds, she clearly came out of this "much further progressed" in her dementia than she had been 7 weeks prior. She can't even hold stuff let alone do a word search puzzle. Now, her eyes are a lot more alert, but she just looks around and says the word "Ok" or "Ok-oh" repeatedly, in a cadence, allllll daaayyyy looonnnggggg. Ok (two seconds) Ok-oh (two second break), Ok-oh (two second break) You get the point. I'm so sad. Even when she was drugged, during those little times of her being awake, I could show her photos, read, and talk to her. Now she can't hear me read to her because she doesn't say this word softly. She's lost any little bit of quality of life she had.

Yes, I moved her to a wonderful new place last week from this RCF (old one was awful- didn't put her oxygen on her even though she's 24/7...dropped her once while moving her into bed and didn't tell me until trusted staff member who has been a reliable informant let me know.) but she won't stop this ok, ok-oh, ok, ok. All day long. What is that? I'm so sad. She just lays in bed and I have such a hard time with her sped up progression of her mental decline. I feel so guilty and sad. I know she would have declined but this rapid progression right under my watch just made it so much faster. I hate it. Thanks for listening.

mommyandme (m&m) · October 2023

I’m so sorry that this happened to your mom and you! I hope in time, as she transitions from the med and to her new residence, she gets closer and closer to her baseline. You tried diligently to make sure she wasn’t on the resperidone, you did your best. You must have been furious finding out their mistake and untruths! I’m so sorry for the unnecessary drama added to your journey and the loss of valuable time with your mom. I’m glad you have more time with her now, although I know it’s still very difficult. She’s lucky to have you in her corner.

Anonymousjpl123 · October 2023

It’s so hard to experience institutional fail - when people are incompetent and not taking your knowledge of your mom and her needs seriously! I am so sorry you went through that. It sounds awful. What I will say I have learned is that this disease progresses no matter what. I’m sure the medication was very damaging to your mom, but there’s no perfect care and no perfect answers. You are doing your best to do right by her and that - truly - is what matters and I’m sure she knows.