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I think I made a big mistake switching my mother’s primary care provider over to a provider that comes directly to the ALF where she lives. Before signing the contract, I added a stipulation that I was to be involved in any appointment and treatment my mother received. My mother has early dementia and her memory is awful, but she is still pretty sharp. Otherwise, she is in very good health and I didn’t feel that this move would be difficult. I made sure I was there for her initial appointment and was surprised at the end when the nurse said to my mother “I’ll see you next week - your daughter doesn’t have to be here every time, right?” I let it go because I didn’t want to cause a problem out of the gate. I wondered why she needed a second visit, but the nurse said she didn’t get to finish her exam. If she saw her again, I didn’t hear of it. Yesterday I called my mother to take her out and she told me the nurse was in her room. I told her I was coming immediately. I’m only a few minutes away, so I was there quickly. I walked into the room and the nurse jumped up and said “Oh we’re doing a test and there can only be two people in the room. I’m almost finished.” I was fuming at this point but trying to remain objective. However, I have NEVER been asked to step out of the room for any of my mother’s appointments. When I came back in I reminded her that I expected to be at every and any appointment my mother had, and that I was her POA and HCP. I asked what the test was, and she said it was a memory test. I did not request this. Furthermore, my mother had had a memory test in the past and I was physically in the room, so her assertion that no one else could be in the room was a lie. I asked what the results were and she said she hadn’t calculated it yet (my recollection was this was a simple calculation of quantity answered correctly out of 20 questions). After the nurse left, I talked with my mother. While I can’t always trust what she “remembers”, she told me she was very uncomfortable and the nurse asked her a lot of questions that felt invasive and not pertinent to healthcare. She seemed to remember a number of questions were about me and she felt the nurse was trying to find out who was paying the bills, but I can’t fully rely on my mother’s assessment. I’m angry that I’ve told this nurse several times that I am to be involved in everything, and she’s either a slow learner or is intentionally seeing my mother behind my back. I have no written reports about these appointments. I suspect there is another motive here, as my mother is physically one of the physically healthiest people in her facility, and it doesn’t make sense that she’s already had three appointments (that I know of) when there are others there who need more focused care. I’m ready to jump ship and go back to her original provider. I’ve tried to give this provider the benefit of the doubt, but my gut is telling me this whole situation stinks. If this is what is truly happening, I’m wondering why there haven’t been other complaints (maybe there have been).
I’m curious to hear if anyone else has encountered this type of issue, and if you think I’m overreacting to the situation. Maybe this is the way these “traveling” operations work, but I’m just seeing a great lack of transparency and communication and it’s only been a month. I have zero trust in this provider at this point.

When my mother had cognitive testing , I was sent out of the room for part of the time , at a private physicians office ( not a facility ) . She had done the quick memory test first , then did a more involved longer one after I left .

The facility practitioners that come do not “ set scheduled appointments “. They come when it is convenient for them . Sometimes it’s the same day of the week sometimes it’s not . They sometimes show up at a facility on short notice . They come and see a group of residents at a time usually . We’ve had some that touched base with us via phone call in the beginning for every visit . After that they only called regarding a change. If we called them to discuss something , they returned our calls . I do recall frequent visits the first couple of months ( getting to know the patient ) and then not as often , until he was more fragile , then the visits were more often again . We did not get written reports either .

The advantage to using an in house provider is that when something does pop up , your parent gets ill etc , The nurse can call that provider and get for example lab work ordered , portable chest X-ray , an antibiotic etc . Otherwise they will be calling you to take Mom to the doctor etc. which could delay treatment .

You can’t go by what Mom says and you have no clue how often the others “ who need more focused care “ are being seen .

Since you would rather have the option of being at a scheduled appt , go back to the regular PCP .
Facility care is the way it is . You can’t dictate a different way . If you aren’t happy stay , with the private physician .

Adding a “ stipulation of being involved for every visit and treatment “ should have gotten you a phone call each visit from the provider but that’s about it . I bet no one told the provider about the stipulation you added . Regardless , They aren’t going to “ schedule “ with you to physically be there for every visit .
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Reply to waytomisery
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A new doctor means a new evaluation.
What nefarious motivations are you imagining might be afoot here?
Are you fearful that the facility will ask for a move to a more expensive and confine memory care?

This doctor and his nurse would be negligent in just accepting a new patient in memory care without doing their own exams and testing.
Surely you can understand that memory testing should be done in a quiet room with the examiner and the practitioner?
In general, when you accept the facilities caregivers, and sign on with them, they come to the facility on their schedule and check folks, and no, they cannot conceivably call the family of each person to ask if they would like to be present.

You seem not to trust people in caring for your mother. But if she is safe and thriving currently in her facility, there shouldn't be a problem.
I think you should speak now to administration there about your worries and concerns. You may need, as onerous as this will be, to switch back to a care you can trust. You are POA here. This is your decision to make. An adversarial relationship will not do your mother, the caregivers or yourself any favor. If this isn't for you then just take care of it.

I understand the choices you have here. My brother in his ALF had the same and was about to change as it was a bit onerous to get to appointments outside the facility, when he got sepsis, ignored getting it seen to (a small non-healing sore on his shin) and died of it. Would it have been better and quicker seen if he had the visits of the facility nurses? Yes, perhaps. However, my brother had early Lewy's and was HOPING the grim reaper would appear before the Lewy's dementia could rob him of who he was. And he got his wish by simply not going to his doctor.

Your choice here. I can see the benefits to both modes of care. And as you are right there and visit often, you can keep an eye on when you need to get mom to the doc.
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Reply to AlvaDeer
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Monomoyick Oct 24, 2024
Yes, I do have trust issues here, both with the facility director and now the assigned nurse. They are not unfounded. While the aides at the facility are excellent, the director is completely inexperienced in both management and healthcare. This is not the right place for on-the-job training. And while this is an ongoing problem that manifests in a multitude of ways, it’s not going to change, so some of us are hyper-vigilant about our loved ones’ care. When I first signed up for the plan, the director told the NP to rush because she “thought my mom needed a psychiatrist”. My mom has been previously diagnosed with dementia. I understand the director telling the NP to expedite someone who has a temp or a wound, but an amateur diagnosis of psych issues is unwarranted and I certainly should have been contacted first if there was concern. The NP could have called me after appointments and filled me in - particularly because my mom’s a new patient - but that never happened either. All I want is some transparency and acknowledgment of my wishes, and when such simple requests are ignored, it sends up red flags for me.
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I am having the exact same problem. My dad entered an AL facility 15 minutes from my house two weeks ago. He is 98 and while very mobile for his age, his eyesight and hearing is marginal and he has been evaluated by two neurologists as not fit to make important decisions. He has trouble remembering how to operate his phone and tv but is making some progress on that front I think after I and my brothers have showed him over and over. He loses everything and squirrels things away in every drawer. I am his financial and health care POA. I also asked that I be informed of visits with the AL LPN but so far that is not happening. She even discussed a DNR status with him which I specifically said he was not capable of understanding. Somehow she was able to get a DNR - which at 98 with his deteriorating health is appropriate- but I should have been informed that she intended to discuss that with him. Going to an AL was a big enough change for him to accept without being told “hey - if you keel over we don’t plan to do anything.” Again, I agree and want him to choose DNR but I would have liked to soften that blow a bit. He coded three times after hip surgery in 2020 and I was there for him. But it has been four years and he is not the same person anymore. I am his POA and his advocate. I intend to both meet with the facility people and the nurse to make that clear and to put it in writing to them so they understand that I want to be there or at least informed. I do think there are certain advantages to using the facility medical people but I, like the OP want to be involved and informed of what is going on. I know too much about how things can go wrong with no informed family there to provide insight and history. People like my dad are typically unreliable reporters of medical and other information. If I can’t get this resolved, I will take him off the facility program and sign him with a PCP at the practice I use. I can also use a mobile Urgent Care that will go to the facility. I would recommend that you not back down from your very reasonable desire to be at her side for medical visits. Good luck with your mother.
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Reply to jemfleming
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I'm thinking that the nurse is not the one who is responsible to contact PoAs for upcoming appointments? This would require verification of PoA or MR status. But at the minimum the nurse should have directed you on how to get it to happen. I would talk to the admins or someone higher up at the clinic, or an ombudsman.
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jenandme Oct 26, 2024
I agree with you.
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I loved having the PCP at mom's AL, it was a life saver. She'd call me after an appointment which was fine with me. Go back to moms office PCP if you don't like having doctors, nurses and testing done on site.
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Reply to lealonnie1
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I loved using the PCP from the Assisted Living facility. My father could be seen in the comfort of his own apartment, and any time the nurse had any concerns she could immediately contact the PCP. I was NEVER at an appointment but I was updated by either the nurse or the PCP after each visit. My dad didn't have complex medical issues but he did live to 102. If he had needed specialist appointments we would have needed to schedule those ourselves and provide the transportation, etc. You may need to think about what is important to you long term - full involvement at the time of the service, which probably means an outside provider, or comfort and ease of appointments and treatment, with good communications with the provider.
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Tandemfun4us Oct 29, 2024
You were very fortunate to have contact. Mom did best with the doctor visiting her in the room but if the doctor does’t communicate, they will not get the info from the staff. They just check vitals and not even ask if there is a problem. My mom always said okay because she could not remember her problems. By the time I got a good doctor in a facility, she was impacted and needed to have an xray and fiber pills to help her as well as a slight change in her meds. 2 years with inadequate attention to detail was turned around with just a stomach press where mom said “that hurts”. The good doctor took care of it.
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I think these doctors who go to assisted living homes are a racket. They just want to bill insurance as much as possible. When my mom first entered assisted living the facility recommended a medical provider that only went to assisted living/ nursing homes. I signed her up but then found out the doctor would be coming every two weeks. He would come at 8:00 in the morning and scare her. He told me she was psychotic and needed drugs for hallucinations. She has dementia but never acted like he stated. I told him he was scaring her and canceled that provider. That was over two years ago. I take her once a year for a check up. She has no physical issues and on no medications and her current doctor who is a gerontologist is fine with that.
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Reply to Sami1966
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I would call the agency or Doctor office she is from. Explain, again, the the Nurse or doctor is not allowed to visit Mom without setting up the appt first with you. You hold both POAs. You will be present for all appts. Send an email or letter confirming your conversation and who u spoke to. (This is probably a Nurse Practioner by the way. Doctors are using them more and more) I would also make the AL aware that the NP cannot see Mom without you present. That if she shows up, and your not present, they are to call you.

Have you had Mom formally diagnoised. If not, I would make an appt with a Neurologist. Is your financial POA immediate, if so thats good. As soon as Mom signed the papers your POA was invoked. Check your Medical POA. That may need a signature of doctor or two to declare Mom incompetent to make her own decisions. I held 2 POAs, the financial was immediate, the medical needed a doctor to sign off the principle was incompetent to make their own decisions. So if your medical needs a doctors signature, then see a Neurologist. When Medical is invoked, then you make sure that the Doctor's office gets copies of the POAs. If your financial needs a doctor signature to invoke, then time to get that done.

The Nurse asking financial questions concerning who is responsible for payment is not unusual. Also, IMO, the NP does not determine who can be in the room, your mother does or POA if in effect. I have never been unwelcome when with Mom. I sat quietly in a corner and made the doctor aware, by my face, that Mom was not answering correctly. I also had notes for him of any changes in Mom.
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Monomoyick Oct 24, 2024
Thank you for this, JoAnn. Both her POAs are invoked and in effect. You have confirmed what I expected, that no one should have a problem with me sitting quietly in the room during her appt. I did not expect pushback. And while asking for financial responsibly may be common, I don’t know why they would ask the person with dementia and not me. Others on this thread all seem to have had good experiences, so I guess mine is the outlier…😕
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Trust your gut. I had something similar happen with my father in a rehabilitation facility after hospitalization. I can’t even discuss it. It brings me PTSD.

If you are her HCPOA, you were allowed to be there. That made no sense at all. I’m with my mother at every appointment. She has ALZ dementia. This kind of stuff is why I hesitate putting my mom into a facility right now. I can’t deal with all of the aggravation.
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Igloocar Oct 29, 2024
Linden, there are tests where the results might be different if another person were in the room. Memory tests are a possible example. The OP's mother had a brief memory test before entering the facility; she may have been getting a different short test in the facility. Additionally, although the new test may have occurred sooner than necessary, memory tests--including the same test--are usually repeated periodically or if behavioral changes are noted. But regarding the point regarding the presence of the healthcare POA, having anyone else in the room could affect how the person performs on the test. When the OP's mother had the first test, my guess is the testing physician probably would have preferred if she were alone. If I had a POA related to me in the room for such tests, I wolud freak out worrying about what that person would think about my performance!

BTW, remember that these are only screening tests. If there clearly is dementia, this may be all the testing needed if the person being tested is probably going to go to a facility. When results are more ambiguous or the person being tested complains of memory/cognition issues even though the screening test results are OK, more extensive testing, lasting a few hours, may be warranted. This testing can show a pattern of strengths and weaknesses that can be very useful. Medicare covers this more extensive testing, also, At this time, Medicare does usually cover the physiologic testing that can help in diagnosis, such as PET scans of the brain, NY guess is that situation will change as these tests become more accepted.
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We also changed my mom to the facility doctor and have since reversed that. We were also never advised about any visits she had with their doctor (nurse practitioner). It was like an assembly line of care where I think most residents were being medicated the same way. We are much happier with our own outside doctor. Even though it is a little more hectic getting her out to appointments we are there and fully informed.
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