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Long story short we believe she has dementia but no official diagnosis. It seems like we are just waiting for the other shoe to drop and every time we mention going to the Dr sooner rather than later MIL goes storming off in a raging fit saying we are just picking on her and want her out of house. Truth be told we have reached the point we can no longer care for her but are not sure what options we have either. My hubby always meant to get POA but just seems like time wasn't on our side and now we are beyond that. We have threatened her with just calling the ambulance to come pick her up and she pretty much laughs telling us she doesn't have to go.......

Doctors can always take info they can't give out. They are to use to dealing w this. Write that letter include patient name and birthdate. Include your phone # and relationship. Been there this works. Hang in there.
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Becca1 Jan 31, 2021
Thanks for the response.....We actually typed up an email last night thru the patient portal and sent it along to her Dr. We are hoping to at least get a response on how to proceed as MIL seems to failing as the days go by. She is def sleeping way more than she was, just sad really. Getting old surely SUCKS!
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Tell her Medicare requires yearly checkups and it's FREE.

Make the appt but don't tell her about it until you get there (pass it off as going to lunch or shopping)

Make a list of known new behaviors or changes, provide it well before appt.

When there, ask her permission to be in the room - stand back to give cues to doc if/when she fibs.

Yes, those with early dementia can easily "pull up their socks" and appear relatively normal for short periods of time, such as a doc visit. If he tried to administer the mini-exam, reassure her that we ALL take that (which is true - they made me take it!)

If you get nowhere with him, see if any local care-giver agencies can schedule an assessment. When I tried bringing in aides, they sent a nurse to eval. The test was more extensive (but NOT intensive), done sitting at her kitchen table, with 2 of us present as well. It was less "threatening" done that way AND Medicare will pay for it.

When done, the nurse agreed that mom was early stage and offered some suggestions, like a timed/locked dispenser for meds (mom still lived alone then.) The aides were only 1hr (min)/day, to be increased as needed, but less than 2 months later she refused to let them in.

Dementia lies to the person. They think they are younger (mainly due to short term memory loss, so they live more in the recent past) and perfectly fine. Even though I knew, I never mentioned the "D" word around mom, as she thought it meant you were crazy. IT doesn't, but that's what she thought. Best to not mention it, work around it, don't argue, don't try to convince them of anything, if something needs to be done (such as this appt), it's better to work around them and make them think it's their idea. Choices can be offered for some things, so they have some "control." Even well informed and well armed with the tricks of the trade, every journey is unique. They share parts of the trip and some behaviors, but it will still be a learn-as-you-go process!

As for POA, the decision would have to be made by the Elder Attorney. Mom was in the early stage and we had POAs, will, etc, but we needed to set up a trust to protect her assets (from her!), so he took her aside and questioned her. He decided she was still capable. SO, if MIL is willing, you *might* be able to squeak a POA. If not, it will have to be guardianship. Our EC atty told me we couldn't force mom to move (she was ADAMANT she was fine and refused to move anywhere), and said we'd have to get guardianship. I don't think it would have been approved at that stage (she still had some rabbits in her butt!) Even if they would, the facility chosen would not accept a committal, so we just had to come up with a fib that worked.
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Someone else (several) mentioned to go ahead and make contact w/the doctor about what you are observing. You may not be able to get access to her medical records or contacts info online right now, but if you/your husband has been with her at the drs office before and filled out the medical forms for her, indicated that you/your husband are allowed access to her med info - you shouldn't need POA.

Mom is also right - you can call the ambulance, but if she 'appears' coherent to them and refuses to go, they won't take her. And, trust me, she can be totally out of it with you, doing some really strange things, and miraculously pull a rabbit out of a hat in front of total strangers.

So, start w/writing a letter to the dr and explain the issues - behavior, forgetting meds, refusing meds, etc. Also explain in the letter what is going on that creates a hardship on you/your husband that you cannot continue to be her caretaker. Request that doctor review the information prior to your appt on XX date.

When you get to the doctors office, ask if you are listed on the HIPAA (privacy authorization form). If you're not, fill it out and have mom sign it while you're waiting and get it turned back in. You don't have POA but you have permission for them to talk to you should you need to call later or make an appointment on your own to talk with the doctor.

You always have the option of assisted living or memory care if her finances allow for that. To get into a nursing home, she will have to use her money as long as it lasts and then apply for a state paid medicaid bed when her funds run out - but - she has to medically need nursing home care which is determined by drs evaluation.

If she is still pretty aware of things, have ya'll talked about assisted living or memory care? Have you talked to her about why you can no longer be the 24/7 provider for her? Have you considered in home help for her that might take some of the burden off you/hubby?
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Becca1 Jan 29, 2021
Thank you for the reply and that statement that you made about her pulling a rabbit out of the hat is exactly what we are afraid of because she seems to do that at the worst possible times....Unfortunately there really are no funds or very little and she is past the point of care in AL as we feel she would need more advanced care since she appears to be out of it more so than not. When we bring up the subject of other care she always goes storming off to her room since she does not want to hear it and last she told hubby was that if we do hire someone she will not let them in the house if we are not home and I can def see her doing that. Just seems like with COVID things are being made much more difficult. My hubby called the Drs office yesterday and the nurse finally got back to him and suggested a virtual visit which will do absolutely no good as she needs to be seen in person so he called back and stressed that so now once again we are waiting to hear back from the office.
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My PCP actually WELCOMES a 2nd opinion. As my SIL is a dr also, I often run things by him and then sometimes share them with my PCP. My SIL is a 'super specialist' and 90% of what he does, a PCP would never encounter.

It's all in knowing your doc and how much ego they have invested in their jobs. Also, I have stepped in with some comments on MyCharts on behalf of him b/c he is not honest with his docs. They don't call and talk to ME, but they are aware that he is skipping appts, not controlling his diabetes, among other things, and generally being non compliant. What the docs do with the info I send them is their deal. AND they never have told DH that I have shot an email out to them.

Not all drs feel OK about outside 'interference'--but usually, if it's the spouse (and back when I had kids, the mom) they listen.

Gottta know the feel of the room before you get involved.
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disgustedtoo Jan 29, 2021
One needs to have a good rapport with doctors, esp pediatricians and those who care for the elders (also applies to vets!) I've had to change docs for my kids and cats multiple times. If you don't listen to me, who knows my kids and kits best, then you are part of the problem!

Not having POA or a release form makes that difficult, but any decent doctor should welcome input from others, if there is reason for concern.
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Hi Becca1,
forgive me if someone has already suggested this (I have not read the responses yet). For my mother when she would go to the doctor she would usually say how great she felt (which was true physically she was great it was the dementia that was an issue) and all the things she was doing. So I made an appointment with her doctor without her there. I had written out all the dangerous things I saw as indicators that she is not truly safe on her own, all the odd things she would do or would not do. Things that were very different in her character from a few years ago. Basically the changes I was seeing. At the appointment I gave him the list. He looked them over and told me that he could not discuss her or any specific condition she may have since I was not active POA at the time. But he was happy to see what I had been seeing and take it into consideration at her next appointment. Since doctors can only go on test results and what a patient tells them it is difficult to know if something else is going on. The letter helped him to see that perhaps she was beginning to get worse and that additional tests should be performed. It really helped plus when he went through the list with me he was able to ask for more details and let me know that some things were a part of normal aging or slowing down. So that was also a bit of reassurance plus knowing that he was now going to be looking out for advancing dementia when he spoke to her was a good thing and ended up helping her on the end.
i don’t know if I just got lucky with her doctor but maybe try to get an appointment with her doctor and let the person taking the appointment know it is to discuss your loved one and what you have been noticing.
i hope all goes well.
huge hug, it is so hard to watch it all happen but you are trying your best to help and that is an incredible thing!
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Why don't you approach it another way. I never had problems with my Mom when it came to doctors except one and I stopped taking her to him. Its been suggested on this forum to tell Mom that Medicare, to keep up her coverage, is asking that she have a check up. It wouldn't hurt for her to have lab work and a good physical. Before you go into the appt. hand the receptionist a note listing your concerns and ask that the doctor see it before he sees MIL. It will help the doctor ask the right questions. Do not say anything to her about him examining for a dementia. She gets mad because she probably realizes that something is happening to her.
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Becca1 Jan 28, 2021
Thanks we are actually considering trying this since it may be the only way to get her to see the Dr. She was suppose to have an appt earlier in the month and the week of she insisted she wasn't going and we needed to call and reschedule. That is half of our battle is getting her to be seen by someone who can help us.
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Thanks for the responses we are just not sure how to proceed. DH knows he should have acted sooner with the POA etc but he still feels we should reach out to her Dr. first and then go from there. At this point it seems like there are not right or wrong answers just moving ahead with the best we can do.
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Like MS, I have contacted a relative’s doctor.

I did so because he would not tell his doctor the truth about his medical history.

All I could do was pass along a message but by law the doctor could not respond or discuss details with me because of HIPPA.
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I too agree with the other posters comments. Be careful in how you proceed as it can always come back to bite you or not have the outcome you were hoping for. It’s a struggle when you reach this point but just do not act hastily.......
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I agree with Moody. You CAN do this. If there is not permission to speak with you, then doctor would not reply to you. Doctor is allowed to listen, however. I have done this with an elder and I think doctor was glad I did.

However, I tried this a different time with a close relative who appeared to be having (or approaching) a mental health crisis. I honestly had no idea what to do in a case like that, I was desperate and fearful for the patient, I felt time was of the essence, I felt the patient was about to make some irreversible decisions, so I desperately contacted the patient's doctor. Practitioner took the information I provided via email, sent me a scathing reply (which I did not deserve), and immediately contacted the patient to let him know I'd been in touch and had provided info. I think he even forwarded the email I wrote in the first place. Everyone was mad at me and I was humiliated. Doctor acted like I'd really put him out. I didn't know what to do!! This is his patient!!! Yes, I was aware the doctor was not going to sit down and provide details and coffee. But he could have told me in a general manner what is typical so I'd know what to possibly do (a previous doctor did this very thing - she generally told me what's typical without violating HIPAA with specifics). Or, he could have made contact with his patient for purposes of actually assessing him - rather than just to expose what I'd urgently and desperately written. I guess next time I don't report the problem? Anyway, it did bring the patient out of the crisis because he had to prove to me that he was "fine" and I'd "overreacted." Yeah, whatever.

Just be careful that her doctor may or may not appreciate the info and may even tell your MIL what you said about her. This situation can go either way.
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JoAnn29 Jan 28, 2021
This doctor was wrong. HIPPA keeps him from talking to you but not you sending a letter to him.
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You certainly can write the letter to her doc. Unless you have a signed HIPPA form on file, or a medical POA, the doc doesn’t have to speak back to you.

You may want to get a copy of “The 36 Hour Day” from Amazon, or another bookseller. It may help you match up symptoms, and give you strategies for interacting with your Mom.

Best wishes.
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