Had DH to 2 doctors appointments today..the first was protime, that went fine. Went to the PCP doc in the afternoon..the general checks went ok..but DH always says " I feel fine, I don't hurt anywhere." This doc knows DH has AD and what is worse, said that some 3 or 4 years ago knew there was something amiss but of course HIPA kept him from even trying to clue me in..( I am not buying this) and when he mentioned it I said " well this is swell, there were 3 in my marriage and I didn't know about this " other woman". Thanks. If I had a clue there was anyone with a concern I would have pushed for testing and he would have been on meds that much earlier. Then today when I mentioned that last week I had to spend 2 days running back and forth to the DMV he says " that is not his fault" to which I said " I didn't say it was...what was annyoying is not being able to sign anything on his behalf..( the lawyer said I needed a letter from 2 different doctors in order to get the POA..) . He says " let such annoyances just roll off your back....I said hay doc, how about you come to my house and deal with this oh for about 2 or 3 weeks..... Our daughter wanted to speak to the doctor in private..he would not do that..he says I talk about the issues with the patient present..DD did not want to say things about dad that would hurt his feelings but wanted to express concerns she has..We left there not especially pleased with the the visit. Also anyone had any experience with a PCP doctor wanting to have your medical directive in his or her file? Every time I have had to take DH to the hospital for any procedure I have had to provide to the hospital his advance medical directive. The PCP doc has never been to the hospital when he has had any procedure..is this a normal request?
I hope you do not mind, but I am going to change the title of this discussion, so Marsh (who is a doctor) and any others who may be able to answer your questions about HIPA will be alerted to it.
I think that most doctors are so fearful of breaking the law, being sued, being sued for malpractice, and who knows what else, that they are trying to follow the law to the letter - to the detriment, not to mention, extreme annoyance, of the patient and caregiver.
Way back in 2004, when we had not idea what was wrong, but knew there was a problem, our PCP in Massachusetts suspected Alzheimer's right off the bat, and told us both straight out. He was the only one who pegged it right until we came down to Florida and found a specialist in Memory Disorders.
Most of Sid's doctors do talk to us together, but also talk to me privately when it is necessary.
As for medical directives - It is an excellent idea to give them to all doctors. Our lawyer gave me a bunch of copies to hand out.
One of the first things we tell spouses (spice) who come to this site is to take your spouse and go to an elder care attorney. You have to have a durable Power of Attorney, Wills, etc. in place quickly before they can be contested that he/she "is not in his/her right mind" which would negate the legal document. Some doctors will accept the POA, some want the HIPAA Authorization to Release Medical Information form. You get your husband to sign this, allowing you and your children to have access to his health information today, if possible! These are different from the hospital directive. I highly recommend you get both immediately!
Take a copy of the POA and Release to his doctors - a copy to each, and one to the hospital. I also carry a set in my purse, just in case.
The doctors CAN NOT talk to you unless in his presence due to the HIPAA laws without that release. Nor can the insurance companies. They will want a copy too.
Also, have your daughter do what I did...write a letter to the doctor, stating all facts and details of occurences, and ask her questions of the doctor and take it with you to his next appointment, and ask that he reply when your husband is not in the room or step outside the room and answer the questions (once your have the two documents).
I had a five page, single spaced, typewritten letter of my husband's actions and personality changes that I itemized, and in the last paragraph I requested an MRI and an appointment with a neurologist. And the doctor did so. And we got our diagnosis....Alzheimer's....it took me one year to get this done, because I didn't have the written letter the year before when I took him to the doctor and explained what I could in front of my husband...Like you, I didn't want to hurt his pride or his feelings.
Once your spouse is gone your POA is no longer in effect. I am having issues with AARP part D and they won't talk to me about it. My attitude is-that's fine, I just won't pay the disputed bill.
I retired from active practice before the HIPPA laws went into effect, so have not had personal experience with them. However, when I was in practice I was always willing to speak with the spouse. One problem with our laws today is that the spouse does not have the rights we have assumed. To make matters worse, if the "spouse" happens to be of the same sex, there is no law giving that "spouse" any rights to information. As usual with our legislators, they have gone way overboard in trying to "protect" the patient. Mimi, I would suggest you try to find another PCP who will be more willing to cooperate with you. There are still some out there who put the patient and their family ahead of any laws. Bluedaze*, I agree with you. Don't pay any disputed bill if they won't talk to you. Tell them to send the bill to your spouse, if they can figure out the address and get the postal service to deliver.
Both our PCP and DH's neuro have always talked to DH in front of me. If they have some form of Dementia it would make sense to have the spouse in the room. My DH never remembers what the doctors have said...if he does remember something he has it mixed up. If I had to wait for him to tell me what the doctor said I would know NOTHING.
I have never had any problems having the doctors talk to me. I just go into the examining room with him. I have never been asked to leave. Also his PCP has a copy of his healthcare POA in his file. I don't say anything during the exam unless the doctor asks me outright but wait until after to ask any questions. It might be different if your LO doesn't like you to ay things. My husband doesn't react at all when I talk about him.
Same with me, deb. His doctors all have copies of healthcare POA and Living Will where I am named health care surrogate. I just go in with him and it's never been questioned.
We have a trust, we are in CA, and I do have durable POA for the dicisions at the hospital and he has checked the boxes when he was of sound mind, about the things he wants and does not want. I have provided those each and every time he has had a procedure ( hip replacements, heart surgery, stents, etc). The AD ASSN here in our area provided a list of Elderlaw attorneys and I am calling today to find out about what she needs from us etc. She may want to look over the trust part that applies. The wonderful lawyer ( estate) who did our trust and has kept it up to date is fighting multiple myeloma and had a successful bone marrow transplant but is now in isolation from the public and his daughter is doing his leg work. The PCP suggested though he said it is up to us, a neruopsych eval..what I need someone to tell me he does not comprehend what he sees on TV? Can't recall things and asks the same question over and over? We see our Neurologist on the 21st and I told this medical hero I would discuss it with him..the referral we were given by the PCP makes his own appts, is hard to get hold of,etc..and then we were told this is not urgent..so why put DH thorough hours of testing only to tire him out,frustrate him and me end up the punching bag? Well I am off to a day of respite too..DD has him off on some activity for father and daughter..so I intend to make the most of my free time..will pop in later for followup.. Thanks everyone.
Mary,,,doc has this release..Michelle had some general questions she wanted an education about in relation to the condition...he shut the door on her from what I gather.
It is up to you on whether you want him to have the neuropsych evaluation. My husband has had two of them a year apart. The first one was 5 hours and the second one a much shorter version-only about 2 hours. He handled them well but was tired after the first one. He was given breaks whenever he needed them and he had an hour and a half lunch break where I took him to a nice little restaurant to relax before going back. The neuropsych test will give a clearer indication of which parts of the brain are affected. With my husband the testing showed that he had Dementia-FTD type rather than AD.
It might have helped that the neuropsych doctor is a really nice man and his residents who did most of the testing did their best to make my husband comfortable with him. The doctor game me his email address and direct number so I can get in touch with him whenever I have any questions. A genuinely helpful doctor.
Exactly, Mary, I was going to say that the doctor doesn't know the answers!! not too uncommon I guess for a PCP. With dementia your spouse is always the elephant being felt by different blind men each evaluating the part they can see.
Today I called the elderlawyer and left a message but no return call so far. Will try again or another name on the list the AD ASSN provided.
DH had a nice day with his friend and daughter out looking for gold. DD said he enjoyed being out in the field..but he did tend to be somewhat bossy..this bossiness is not part of his normal personality.. And the other thing now is the wallet..." what did YOU do with my wallet?" I tell him I don't have it, he ususally leaves it on the table but lately it has been by the TV on the end table...could be a little paranoia starting.. We see the neuro on teh 21st.
I decided to pick up a tiny little video camera that is digital. I have an older one but it needs those 8mm cassettes or hi8 cassettes..this will allow me to record his actions and download them and burn on a disc,. He is used to me with a camera in my paws since I shoot a lot of photos and the camera is alwasys at the ready. Video can capture what a still can't.
Mimi, the elderlaw attorney will give you good advice. I cannot call the insurance company or speaK to doctors without a durable POA which includes language on healthcare descisions and signed relase of information (ROI) forms. Also be sure there is a clause which deals with psychiatric care - many hospital/psychiatric professional s won't talk to you unless it specifically states psychiatric (I found this out when DH was in psych hospital and attended the "care planning meeting"). ROI's typically expire in 12 months, so make sure you know when they are about to expire and submit a new one before the old one expires. Health insurance companies WILL NOT share info without a signed ROI. So, I had DH sign several forms at one time and submit them right before the old one expires. BTW, our health insurance company will NOT accept a POA.
LFL, Thanks for that bit of information. I got a call from the elderlawyer lady and this helps to know what I should address at the first informal meeting which will cost 250.00 and that will be applied to any billing should we go forward with her services... As if life for us in not hard enough already...all these forms and releases etc..
Today is our 33rd anniversary..it is just another day..first time he has not remembered it at all. Normally he would have been planning something special for at least a week ahead of time.
Although if you don't have the POAs in place you'll need them drawn up by a lawyer, once you are connected with a nursing home they MAY be able to help you w. Medicaid apps. Which wod be cheaper than a lawyer. So ask but if they seem dumb about medicaid go back to the eldercare lawyer.
I have never had any problems with my husband's doctors talking to me. I always went into the exam room with him even when he was still ok. He always said he wanted me there because he didn't understand a lot of the medical talk. However, a couple of years ago my daughter was in the hospital with a pretty serious condition. Her doctor came into the room and we talked at length about the problem and what treatment was available. I took part in the conversation and the doctor was fine with it. Afterward, I thought of a couple of questions I wanted to ask and went out into the hall where he was standing. When I asked him the questions, he looked at me as if he had never seen me before and informed me that he could not answer my questions because of the HIPPA law.
I am with DH when he sees any Dr. so we haven't had any problems, but one thing I think is kind of hilarious (a CYA event), on several occasions when we've gone to the Dr. I've had to complete the HIPPA form on his behalf and sign it (I'm Legal Guardian) authorizing them to talk to me. I presume that covers the times I talk diretly to them at the office or by phone.