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goodchild Asked January 2020

Should I be upset or is this normal? Medication change made at ALF memory care w/o notice.

Mom is 77, diagnosed with Dementia and Delusional disorder, and has been in a Memory Care unit at an ALF for 2.5 years. She was prescribed Risperidone before she entered the facility, to control her delusions and aggressive, agitated, and very unsafe behavior. Dad is her main family caregiver, and visits her at the facility 6 days a week. 5 months ago, her Doctor who manages her care at the ALF stopped the Risperidone. They subbed in a topical cream with Haldol, ABH, which the family thought was supposed to supplement, not replace the original med. We did not figure out that she was no longer taking Rispiradone until a family meeting with the facility to address a rise in aggressive behavior, including kicking a staff member. After bringing it to their attention, the Dr has re-prescribed the Rispiradone, but gave no explanation for why she was taken off it completely. Before I make a big deal out of this, my question is, is this normal? Am I expecting too much to think Dad should have been consulted before a major change in meds? Or is it up to the Doctor and facility??


Part 2: within 2 days of this meeting, mom fell and broke her hip. She has had surgery, and will go to rehab. The ALF has not provided any sort of official incident report, or done anything beyond calling Dad to ask how she was and what rehab she's going to. Should we expect more? Should anything official happen or be provided to Dad? We sort of expected a report of some type- am I expecting too much?

golden23 Jan 2020
It may be best to simply clarify your expectations with the staff. so they know what to do in future.

One point - Risperidone was discontinued for mother who had vascular dementia late stage as apparently it is not effective in later stages usually. I begged them to put her back on it as it had helped her so much in the beginning. They finally did and it was no help at all at that stage. Her brain was too broken. She was not happy and no matter what they gave her it didn't seem to help. I was sorry that the last months of her life were unpleasant for her, but then as her disease progressed she slept and slept .more that that looked after it to a degree.

When ever mother fell I was called to be informed but that was all, Good luck.
goodchild Jan 2020
Thank you for your reply and for sharing your experience, it is very helpful
GardenArtist Jan 2020
Goodchild,

Part One:   This is based on experience in rehab, not AL, but I think the same guidelines would apply, since you're still dealing with staff in control, and establishing a good rapport and understanding of your respective interests and goals. 

You really have to establish notification parameters with the staff, or they may just anticipate that you're not that involved, or interested.   It's not a negative conclusion, just that (in my experience with rehab), they don't bother to ask if you want to be notified of med changes.

I would ask to meet with the DON (if there's one on staff) or the Administrator and explain that you want to be aware before any med changes, and discuss them with the staff doctor to insure that you understand and are aware of what his/her intentions are, and what the underlying issues and considerations are.   

Otherwise, I doubt that they would bother to consult your father.

Part 2 - I can't answer as I'm not familiar with ALF when someone leaves for rehab, but I know there are people here who can offer some insight.

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Geaton777 Jan 2020
My MIL is in LTC and is on a few medications. I always get a call from the lead nurse managing her care whenever they change anything about her medication to get our input and consent. I cannot imagine they did that to your mom and family. Ugh! Make sure you have a stern discussion with admin about that doctor and force him to explain himself.

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