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Will be having our first consultation next week. She has progressed from short term memory loss to bouts of confusion,anger and short attention span. age is 69 and we do not discuss this at all. this started about 2 years ago after our daughters death.

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I've told my dementia husband (only if he asks why he can't remember) there is a wire connection in your brain & as you get older it frays or gets rusty. I'm younger than you so mine hasn't gotten bad yet....seems to satisfied him. We never mention word alz or dementia. He wouldn't know what it is anyway. I am blessed w pills he takes, sleeps a lot & rarely outbursts. 3 in last 6 years. Ice cream I use as diversion sometimes. We know how this desease ends so why not please them now. Makes everyone happy! Please all of you besides this go to support group. I didn't think I needed it but my 5 times there has helped me & others knowing we're not alone.
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Yes this is a touchy thing. Since moms doctor knows she has alzheimers, he still directs his questions, etc, to her and if shes unable to answer, she will usually look to me to answer. However there are times when she doesnt answer correctly and usually i speak up in a kind tone with the correction. I always fax a letter ahead of time if there are specific things...like new symptoms....that i need him to be aware of without speaking about it in front of her. She tries very hard to seem completely fine in front of the doctor and she does a pretty good job for now...which is why its important for me to let him know what im seeing. She does not accept that she has alzheimers...she says its just 'hardening of the arteries', which is what most all dementia was attributed to back in the day. In fact, she gets quite irritated when i explained to her that the dr said thats why her memory had declined. I dont bring it up and dont argue with her about it. But doctors need to know how the patient is truly doing and they arent able to know that at the earlier stages without someone who is with the patient a lot. Mom doesnt even realize how bad she is....only that her mind is 'not quite right' as she puts it. So for most, theres no other way to keep the dr informed about symptoms/concerns without communicating outside of the patient appts. I dont feel its disrespectful...if mom was able and willing to know/tell the dr what he needs to know, i would gladly leave it to her.
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As a nurse, I never liked to discuss anything in front of a patient regardless of their state of mind or hearing ability. I felt as though it was demeaning, and I won't do it now with my mom at doctor visits. I guess it depends upon the physician, we are lucky to have one who specializes in geriatrics. I try to include my mother in as much as possible, and her doctor does the same. If there is an issue I feel may cause discomfort to mom, I write a note to him. Good luck with everything:)
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NJ Cinderella, I would get at least a Medical POA for both your parents. There may come a time when they are not able to "put you on the list". At that time, doctors and nurses are under no obligation to talk to you about their care. This goes for a spouse too. And a Financial one is good because who is going to pay their bills and just being on the account doesn't count in certain situations. I just had to cash in a CD of Mom's and the bank wanted the POA.
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I agree with auntie2seven. Before my mom had to be in a nursing facility, I used to take her to all her appointments so that I could understand what I needed to help her because she would forget what he told her and would say "it's fine". I also wanted her to be part of the discussion because so much had already been taken from her because of this dementia (horrible disease). People with Alzheimer's and Dementia as well as other illnesses and diseases are robbed of so much that whatever we can do to help preserve what they have left, should be done for them. Also, whatever the doctor wants to say, in my mom's case was mostly forgotten so it wasn't worth trying to talk to the doctor alone because it was actually like I was alone with him even with her in the room. I think we all have to do the best we can at the time, and remember that it affects everyone differently. My thoughts and prayers go to all who are dealing with these issues.
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I don't have POA but the fact that I was in the room with her at the doctor's seem enough for them. Neither the neurologist or urologist asked me if I had a POA nor questioned me being there. However, that being said, my father did give my name as an alternate contact person so I could discuss my mothers care over the phone with the neurologist. I'm not sure if my father also gave that permission with her other doctors. I need to ask.
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Kristen's answer was excellent and spot on.
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my mother thinks she is "just fine" and got very very agitated and upset when she was in the room while discussing her care and issues with the health team. She kept saying we were exaggerating or denying anything was wrong. We'd say x and she's get all huffy and loudly protest, " I DO?"

Plus I felt we couldn't speak freely about her behavior, limitations, prognosis questions etc with her right in front of us. Speaking about her as though she wasn't there I thought was pretty disrespectful too.
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Great RitaS51!
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I don't have a MPOA and can discuss things with my mother's dr. She just signed a statement at the dr.'s office allowing me to.
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Unless you have a MPOA, you will need her permission to discuss her care with her doctor.
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I've experienced it both ways and I find it best to send a letter beforehand and then hand the doctor the letter when the appt. begins. Otherwise, my mother gets very defensive and it gets unpleasant. Everyone is different, but that is what works best for me.
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Wolflover...that may well be true. Either way, as long as dr doesnt read it out loud, he will know ehat the issues are. My moms dr may have done that as well but i know that HE now knows what is really going on with her since she does her best to seem ok when we are in front of him. He was able to evaluate her and with my input over the last year, we now know she has alzheimers since i am able to provide information to him on what im seeing.
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i don't how doctors are in other places but I find here that if you send something like that, they stick it in the file, then they read it while sitting in front of you. I also did that so she would have something, so she read it briefly while we were sitting there. I think the old days of doctors taking the time to really understand have gone by the wayside......NOT all but some.
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You can fax a letter to the doctor explaining everything before you go to her appt. This will give him your perspective and her symptoms. Simply call the office and let them know you are doing tbat and to please have the dr review it before you come in. I have done this with my mom and it allowed him to evaluate her without me spilling the beans in her presence!
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to add a little to my earlier comment.......I know first hand. I requested to speak with the physicitrist (?) and the office told me that since we were not the patient (and we had POA) that they wouldn't know how to bill us for what type of service. I am sure they could have worked something up but it never happened.
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this can be hard to do sometimes in requesting to speak with doctor first because the INSURANCE companies aren't seeing you as the patient so they won't pay anything and the doctors don't know how to BILL you since you are not the patient..........so if you can find a way around the political issues with the insurance companies in seeing the doctor prior to the visit with your loved one.......good luck.
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I write an update of chgs & hand to recp or nurse before we are called to go in so doc can ask husband (alz) questions concerning him to see reply for doc concerns. My daughter emails ahead to doc for her family. I'm not tech smart but sounded like good idea. Doc has discussed in front of husband but seems not to phase him. I like idea of after seeing patient, nurse takes patient out so our grown kids can ask freely not fearing offending their dad. I do not tell him he has alz & he doesn't really ask. He feels secure w me even tho he knows he's confused. He's started to as who I am confused w sister he remembers. I don't want to frustrate him as he stays calm now.
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Thiss is hard. I know Mom doesn't like it when I want to talk alone. But, there r times u need to ask questions you don't want them to hear.
Is ur wife on meds because of ur daughters death? If so, maybe that is the cause or any new med. Do u go to a neurologist? If not he will do tests of his own. Your wife is so young.
In my Moms case, she has a problem processing. The doctor keeps talking and she is still trying to understand the first word. We walk out of the doctors office without her understanding or miss interpreting half of what he says. Its always " thats not what he said Mom". Throw in hearing loss....

I have asked, when she is in the hospital, that doctors and nurses not speak with her but to me. They just confuse her.

Your doctor should sit right in front of ur wife and explain to her what is going on and put the word Dementia in there. He should explain what she will see and hear that she shouldn't worry about. Some of her anger may be because she doesn't know what is going on. I know, short term, thats when u can say "remember what the doctor said..."
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Having gone through this several times with my mom with moderate dementia, I have found quietly requesting audience with the doctor prior to his/her exam helps a great deal. Before adopting this method they would ask her all the questions, she would give answers that fit her reality and I was shaking my head and making faces out of sight indicating that she was incorrect. Plus when the Dr asked me touchy questions I was unable to answer openly because it contradicted mom. Mom and I don't discuss her deficiencies much because it upsets her and often she doesn't remember from one moment to the next what is really going on. So I would urge you to press the importance of discussing the purpose of the visit and summarize your mom's state of cognitive capability so that the Dr can better grasp the whole picture and make better diagnosis and do what's best for her.
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Wish there were an Edit button! Obviously if it's "our" daughter then this is not your mom but your wife.
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Well let me back up, you need to have your mom's Medical POA and the Hippaa signed, before the doctor can speak with you over phone. Getting all of that signed, by your mom, could be difficult. Or maybe at this first appointment you can ask the doctor to suggest that ---because some one needs to be your mom's caretaker, POA, Mpoa, and if mom won't appoint someone, a Guardianship will have to be done by the Court.
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Nothing wrong with a phone consult, prior to the actual meeting with mom, especially under the circumstances.
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I agree with drooney... If you're talking about her and not with her, she may feel left out and suspicious. My mom is always in the room when the doc and I talk and most of the time mom gives wrong info. So I have to give my impressions which, ultimately, helps the doctor to know how to steer treatment. Sometimes the doc needs to see what's happening. It can help. Hope everything works out!
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Im new at this but I have had better experience speaking with the doctor separate. Make sure before you go in that the doctor gets the message and then there will be less chance of altercations during her appointment. I have experienced it both ways and it is not fun when the doctor talks about mom in front of mom.
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She still needs to be included in discussions about her health! Other wise she may feel angry and disrespected!
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good luck, sounds like some could be from depression over losing daughter and maybe not dealing with the tragedy. I pray that things get better.
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I am new to this also...but it was better for us to consult without Mom in the room. We could ask questions without having to censor them.. I think we found out more about what was happening & what to expect.
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