communicating with docs

mxyplxMarch 25, 2012


Here's something that has bothered me a lot and that's just how to handle the communication with the doc about my wife with my wife sitting right there too. About 4 years ago when all this started she was terribly offended when I candidly spoke to the then Doc about her. The last thing I want to do is offend her. We sure didn't make 40 years and still be each other's favorite person by being inconsiderate did we?

Typically she (the new Doc) or (anybody for that matter) will ask my wife a question and the answer may be anywhere from close to out of thin air that just sounds about correct. Unfortunately the questioner takes in these answers at face value.

Do I sit there and correct her answers in her presence?

Do I insist on doing all the answering?

Do I sit sort of behind and shake my head if the answer is rong? Then correct it?

Make quick written notes/corrections and hand em to the Doc?

My wife is losing it but she is not stupid.

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As far as the doctor is concerned, you need to make sure that you have a chance to talk to her alone. The doctor needs to know what is real and not real. She also needs to know that YOU understand your wife's condition. As it is, she can't do what best because she doesn't know where you are on this.

Now, as for anyone else, just shake your head, roll your eyes and look to the sky. They either know how she is or they don't. No need to worry about what others think.

Good luck!

    Bookmark   March 25, 2012 at 5:06PM
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"...when all this started..."

A bit nebulous. Don't know what "all this" is referring to. However "losing it" leads me to assume some kind of alzheimer-ish thing maybe beginning? And I'm assuming it's something you're unable to work out between you in anticipation of the Dr. visit. I'm going to throw this out from personal experience....perhaps a thread of similarity......

I've been care-giver for mom for more than 17 years. We've always talked well together and I've always assured her that, unlike some friends and family, I wouldn't be treating her like a child and doing things clandestinely. I promised I'd always tell her what I was thinking and why I thought what I did....especially about her medical needs. She'd never have to wonder about it. It worked wonderfully for a while. The level of trust and mutual respect was really nice. Then things began to change.

Along the way, with her increasing dementia, I've had to abandon my promise. It began with confusion in the doctor's office. Mom was giving incomplete answers and/or didn't understand what was being asked and/or forgot what had occurred with her and wasn't able to answer meaningfully. Like you've described, I sometimes answered for her; sometimes interrupted; often contradicted. It was uncomfortable for everyone.

I have long had medical power-of-attorney so was able to schedule a private appointment with just me and Dr. to talk about her. (I paid for this in cash separately from medicare or insurance. It was a regular Dr.'s appt.) The upshot was that in subsequent visits, the Dr. was able to ask questions differently and also politely include me in the conversation when needed in a way that enabled her (Dr.) to obtain the info. needed and avoid the previous conversational annoyance. It worked out very well for us although I suspect whether or not it would for you would very much depend on the personality of your own Dr. and whether or not they would accept a conversation with you about your wife without her being present. May require a POA....don't know.

At this point, it doesn't matter for us because mom's much further along dementia-wise and she now expects me to handle everything conversationally as-needed. Thankfully, our excellent trust/comfort level is pretty much innate. However, I'm thinking our early period may be similar to what you're talking about.

Regardless, I do suggest to you that trust and respect between you and your wife will become increasingly important. If she develops distrust and/or annoyance with you about this kind of thing your task will become increasingly difficult. Whatever you think the proper "balance" may be, I encourage you to seek to establish that with her and to nurture it. I suspect that she'll gradually become more comfortable in deferring to you.

Hoping there may be a kernel in there for you.

    Bookmark   March 25, 2012 at 5:22PM
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The diagnosis is variously Alzheimers or Dementia; depends on the Doc. We got serious about it 4-5 years ago.

With the former doc I tried writing brief concise notes to be scanned in to his comp just prior to the apptmnt. It worked a couple times but he didn't really like that so I quit. I tried to arrange an appt to discuss my wife and couldn't get past the front office on that - she "has to be present." In the end I just sat and drew pictures.

Too bad. I believe fully in the written word. You can revise, rearrange, condense and get a mssg just so. Plus the recipient can re-read and study it. IF they will.

The new Doc offered to meet with me and our daughter (my main backup) w/o my wife. Main object was to have them at least meet. So it might work. Incidentally I offered to pay privately for the consult with the former doc but nope, front office wouldn't do it. This doc may have more clout ie the receptionist doesn't run the joint.

So, with this thread for encouragement, I'll follow up and do that. I at first declined because it seemed to me the session would degenerate in to anecdotes rather than a frank discussion of behavior. With adequate preparation that should be avoided. On the other hand out daughter is a public health nurse type, knows her stuff and can help keep things on track. Again on tuther hand the Doc knows what to ask. Knows much of our family and friends and has personal experience; she told me that with Alzheimers it was much easier to be the Doc than the daughter......
I do have medical POA. There has never been one single lie between us but I have had to take evasive action; I hid the salt :-). When cooking she may salt the food 3 times tho I do most of the cooking. To be sure I will explain why we are seeing the Doc w/o her. How timely this thread as the next appmnt is tomorrow.

I'm starting to ramble so will cut this off here. Thanx.

    Bookmark   March 25, 2012 at 7:29PM
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Very surprised to learn you were turned down while holding medical POA and offering private payment. I believe the receiving party was out their depth and quite mistaken in refusing you. I would suggest correcting this directly with the Dr. so you don't encounter such barriers in the future.

Here's hoping for a new beginning with a difficult situation.

    Bookmark   March 25, 2012 at 10:03PM
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Even if you find that the doctor doesn't want to talk about need to see the doctor so you can explain what your home situation is, will you be able to cope with her, watch her, see that she eats, etc, etc, etc.

Alzheimers is only one form of dementia, the expectations for the future are about the same, no matter what the diagnosis is. You just don't know what tomorrow will bring.

You may have a long rough road ahead. Good Luck!

    Bookmark   March 26, 2012 at 11:32AM
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"You just don't know what tomorrow will bring."

Well, there's ton of wisdom in a short sentence! Day-to-day and even moment-to-moment can be an "adventure".

    Bookmark   March 26, 2012 at 12:15PM
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I think that some support from the Alzheimer's Association would be helpful about now. They may even suggest doctors who will be more approachable. The value of a support group is that you pick up real-life experiences from other participants.

And if you don't have a AD diagnosis, I don't think that matters at all.

I hope we've all been able to give you some useful info.

    Bookmark   March 26, 2012 at 12:51PM
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We saw the Doc this morning, Me, Daughter, Wife. All very compatible. I warned the Doc to don't get them both laughing same time.

A consultation visit is scheduled with Doc, Me, Daughter. Next month. We will be thrashing out exactly what to discuss and, of course, the Doc will have input.

First thing she asked Wife how things were going. Next she asked Me and Daughter if we concurred - called us the peanut gallery :-). This is her specialty - she knows what's happening. You have to know somebody or have relatives to get to see her and we had both. What incredibly good luck.

So the whole process seems to be on a positive track and what more could we want given the inevitable? Thanx.

    Bookmark   March 26, 2012 at 5:10PM
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Good on ya. Your last post sounds much more encouraging than your first.

And thanks for coming back with the update. We don't get enough of that.

    Bookmark   March 26, 2012 at 5:16PM
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I don't have anything to add except that this situation is another "wrinkle" in dealing with dementia patients. Thank you for bringing this important subject up. I had an experience similar to what alolo described. My mom trusted me to talk openly with her doctor -- describing problems she couldn't remember, explaining concerns I had regarding her health, remembering her past medical history, etc. But I'm sure many caregivers might have to deal with the questions you posed in your initial post.

    Bookmark   March 26, 2012 at 5:49PM
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We've met several times privately with MIL's doctor to apprise him of our concerns regarding her dementia. He has many patients with much more serious dementia so he isn't too concerned about MIL, but has said he appreciates us keeping him up to date.

Her decline is hastening, as dementia often does. Time for another meeting (sigh).

    Bookmark   March 29, 2012 at 12:24PM
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We had our clandestine doc's visit yesterday (me, doc, daughter) wife never knew. I prepared an outline of the desired discussion agenda (3 items) with a copy for each. Item 2) Communicating w/o upsetting wife, Item 3) What info is needed from me. I also prepared a list of what I thot might be meaningful observations of my wife's behaviors/attitudes (for example she is reading very very slowly; if she doesn't remember how to do something she still does or knows to consult a book or reference). The Doc dug this list. :-)

I stayed completely away from anecdotal discussion - that gets noplace.

The doc is well aware of this whole problem but so is our nurse daughter and she's the one that came up with what I think was the best suggestion: ignore wifes inaccurate/wrong statements if the subject is non-critical to health, interupt and make a correction if they are critical issues like meds or whatever.

So today we (wife and I) had an appt and the Doc questioned wife closely and very tactfully and for sure very skillfully. She knows what she is doing. The questions were directed to my wife, not to me with one exception when she did seek confirmation, and she was able to ascertain what she needed. I did, however, interupt one time with the 'truth'. There didn't appear to be any reaction from my SW and you can bet I was watching.

I did expand on one problem which resulted to my surprise in a thorough exam on the table by the doc (as opposed to just writing it down - the usuall SOP) with a definite conclusion. Got my attention.

So to summarize:

With a recptive Doc a concise written summary of behavioral observations gets the mssg thru.

It would seem that one way to minimize possible emotional upset during verbal communication with the Doc is: ignore the non-critical wrong answers and interupt with the truth on critical issues.

    Bookmark   April 24, 2012 at 2:47PM
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"Receptive Doc" is key in situations like that you've described. IMHO dealing with dementia is almost a separate branch of the profession. In my experience, some docs really don't want to be bothered. Important to find one who "gets" it and understands the need/benefit of participation of the primary caregivers.

Thanks for the update. I know you've worked hard at this. Good to have a progress report.

    Bookmark   April 24, 2012 at 8:21PM
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