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I advocate for an old friend who lives nearby in Assisted Living. She's physically healthy but has s short-term memory loss. She was un-diagnosed when she entered AL, but suffers anxiety which can on rare occasion boil over to threatening behavior ("get out of my room or I'll hurt you" or pushing them away (which falls under the category of hitting), both offenses which they say they are obligated to record/report. In order to treat (medicate) the anxiety, the visiting PA diagnosed her with Dementia - without letting me or her Trustee know. We had just referred to the problem as "memory loss," so the diagnosis of Dementia was devastating and contributed to even higher anxiety. I was able to get a Limited Health Care Proxy, took her to an outside physician, confirmed the diagnosis (ie, Dementia = memory loss and changes in behavior), and agreed to help reinforce to her that a low-level anxiety med would help her feel better. She doesn't remember that she has "memory loss" but she seems to remember the word "Dementia" with vengeance. That was the start of the fee-based extra service of dispensing medication, which over 4 months increased her monthly charges by $1200 (dispensing of 2 meds, morning and evening and for dealing with her reluctance/refusal to accept the medication. Long story short, the poor behavior began to appear more often - resulting in the AL requiring that she be re-evaluated medically with the intent of increasing the dosage with the objective of finding a level that kept her (and their job) calm. Not having another solution, I went along with all they asked; took her for re-evaluation today with her PCP agreeing that increasing dosage was a trial and error process. When I returned her (and her meds which I had taken to the appointment), I noticed that both one-month supplies had more than 15 pills left - which led me to question why since they were being paid to dispense 2x daily with the combative upcharge. THEN...I was told that patients have the legal right to refuse medication (a good thing) and that their records show she had refused medication 10x in January. The problem is, without this knowledge before I took her for re-evaluation, I helped lead her PCP to the opinion that the current dosage wasn't effective; and, on that basis, he doubled the dosage. I know caring for those with memory loss is difficult and I try to work with the AL. I just feel betrayed by their failure to be reciprocal with information. They didn't let us know that she had been diagnosed, at the AL facility, by a visiting PA; and now they led me to believe the meds weren't working without letting me know that she was refusing to take them. I understand that the AL industry is regulated - and why - they can't tolerate someone who threatens staff or other residents' safety and they are required to abide by patient's rights laws (right to refuse meds, not be locked in their rooms, etc.). I'm building a healthy dislike for administrative procedure in institutional living, yet I have no alternatives to recommend to her Trustee. Soooo frustrating!

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I agree that maybe your friend is in the wrong type of care facility. You should be notified of changes in meds, and any refusal of meds. This may be something you have to ask for weekly in person, or by email. If I have any complaint about my mom's AL it's on this subject. They are slow to report such things and I have to inquire all the time. They are also slow to put such changes into the system so all of moms doctors can look up her current meds. A new med was added to moms daily meds and I was never consulted. So its best to ask each week if there are any updates or problems. Ask for a monthly printout of meds too.
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Is your friend in regular assisted living, or is she in a memory care unit?

It does not sound as though this place has the right level of care for your friend, and is poorly run.

I'm going suggest you look for a better, specialized facility, and find a geriatric psychiatrist who can evaluate your friend's anxiety and agitation.
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All drugs have side effects that SOME people get, not all.

Drugs have therapeutic uses. Antibiotics cure infections. Bp meds help prevent strokes. Antidepressants help some forms of depression. And sometimes, folks with severe agitation need powerful meds to keep them from harming themselves and others.
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My dad was in a wonderful MC (memory care) where there was AL as well. He could certainly refuse medication, but the nurses there just really had a way of getting the patients to cooperate most of the time. Anytime Dad refused meds, I was contacted.
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Although many families do direct these types of malice care to the AL or NH director; it appears to never be addressed to staff properly. For this situation I recommend hiring a Private Caregiver (you can get one on care.com) to work at your friends AL home. They aren’t working for Al and will follow care guidelines to ensure excellent care is always given. Almost all AL’s allow this whereas most NH’s do not.
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She needs a higher level of care as others have posted.

But Sassy I’m somewhat concerned about the situation as it pertains to you.
Your her friend, correct? Your not family, not her DPOa or MPOA?
The Limited Health Care Proxy that was done, was it time limited just for the trip to MDs office so not valid anymore?
There’s a trust, trustee, involved in her life & finances, right?

If so, you really have no legal standing to her but if you were to personally sign any paperwork for her you could be held responsible. This is not a good position for you to be in. Just where is her family in all this?
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I have a limited POA for Healthcare on file with the AL and my friend's doctors and caregivers. It basically provides that her doctors or caregivers or AL administration or staff can communicate with me. It was drafted by an attorney on behalf of her trustee and me for this specific purpose. I don't sign anything - just take her to appointments, listen, and report. But I appreciate the advice for me as, advocate, to take care. Advocating for her has been a learning experience. There just seems to be no end to the things I need to know and watch for to protect her. Thank you all.
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I'm with igloo572, do you have DPOA or MPOA? If you don't have some legal standing why would the AL people think they have to share anything with you? I don't know how the HIPPA laws apply.
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What happened to me, my mom's Health Care Proxy, when she was in the NH, was that the admins would tell me that as mom was still competent, they ONLY needed to tell HER what was changing, and if she agreed to it, that was all the reporting they needed to do.

We learned that what we needed to do was to request mom's med records at each care meeting, make specific requests when we were doing followups with docs and the like.

It sounds simple. It's not.
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Gee, was my mom's nursing home a happy exception? No one had healthcare POA (or financial POA) for her. Her four daughters visited every week and at least one attended each care conference. We gave them a prioritized list of our phone numbers. When there was a change in Ma's condition or medications, they called down the list and told the first person who answered. "Your mother is doing much better with sleeping through the night. We are going to discontinue the night pill and see how that goes." I don't guess they asked us if that was OK, but they did inform us.
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