Hi Songbird,

You seem to have it all together!   If I were you I'd do it exactly the way
you say, with simple point by point listing.

But the biggest decision by far will be to choose your medical professionals
with extreme care.   (You know how doctors cover each other's butts when
push comes to shove, and they are always reticent to rethink anyone elses
diagnoses.)

So since you are at a brand new starting point, do your inquiries
beforehand.    Look for a well recommended gerontologist perhaps, (maybe ask
the alzheimers association locally?) ....and ask for a complete workup to
get a full diagnostic picture from scratch.

If I were you, I'd go along and be the one who does all the talking.... and
maybe leave your dad home altogether while you do this with your mom.   The
less input the less confusion.   Insist on testing for diabetes, thyroid,
vascular testing, and whatever kind of brain scans they think are necessary
to find out what is causing her symptoms.

Use correct terminology for the symptoms you are seeing, so that the Dr.
sees that you know what you are talking about.    When a doctor sees that
there is someone with a good mind who is looking out for the individual in
front of them, they often are more forthcoming and more inclined to be maybe
more thorough, than when dealing with a confused elderly person who has no
idea what is going on.

I know that when Ida was going to the doctor alone she got very little in
real answers out of it, and she promptly forgot whatever she was told
anyway.   When we came into the picture and started calling for action, we
got it.   Testing was done (of all kinds) and appointments for further
diagnostics were made and we finally did get our answers.

When a doctor sees an elderly, confused person alone, the LAST thing in the
world they want to suggest to that person, is to see a psychiatrist to test
for alzheimers disease.   It is liable to result in an over-reactive and
fearful result... maybe even enough for the patient to change doctors.

My mother in law almost refused to go for this test due to her being fear of
being called "crazy"....  She kept on saying to the doctor and to us .."I am
not crazy"...   It took some serious convincing to get her tested
thoroughly, but we persevered.

We ultimately convinced her that we KNEW she wasn't "crazy" but that she
needed the test for other reasons as a part of the whole testing process.
The other tests she went to with no complaint.   Later when presenting her
with the results, we told her that the doctor assured us that she most
certainly wasn't "crazy"  (long pause to let it sink in) .......but that she
had just a little teensy bit of alzheimers starting, so she needed to take
these meds for it.

Anyway you get the picture....

Songbird,  MDs are used to a format like---
Past Medical History that might be pertinent.  Starting dates for chronic
problems like hypertension or diabetes are especially helpful.  Anything
that impacts function is pertinent.  Then I would describe her current
functioning level-
MDs are interested in degree of orientation, patterns of fluctuation, clear
cut statements about loss of abilities (like word-finding problems,can't
interpret clock, how much help for dressing, bathing, level of functioning
in kitchen, whatever is appropriate),  Include any problems with eating or
intake, continence, behavioral issues (I know-where do you start?  Maybe
something along the lines of Reisberg's 7 stages). Define living situation
and maybe your Dad's feelings or limitations.  Be sure and state what you
want from him-in your own terms.

Yes, you want to hit the high points-but briefly. Also remember your note
will become part of her permanent record-so keep it as objective as you can.
Past medical record might be helpful if you can get it, but I wouldn't worry
about it if you can't.  I'm assuming you'll know her current meds,
allergies, any prescribed diet, etc.
It will be VERY useful not to have to recount all this in front of your
mother.  He may not immediately absorb all of it, but it should be
sufficient for him to start a work-up and plan of evaluation.

Best wishes
Beth, Physical Therapist

I have found that doing it in journal form (recording the
incidents in the order of the date they happened) works well.  It
can indicate that symptoms are either erratic or getting worse
over time.  It's also easily understandable, but still
structured.

*dismissed her confusion and forgetfulness as normal aging. (This is same
*doctor who just sent her a Rx for oral insulin by mail without telling her
*she had diabetes or doing any education -- all on strength of one finger

Not to butt in and totally change the subject, but you can't take insulin
orally. It would be destroyed by the digestive enzymes, since it is a
protein after all. There are two promising products, Oralin (a spray) and
Intesulin (a capsule), which are oral insulin delivery systems, but they
are both investigational at this time and neither is available outside of
some pretty restrictive clinical trials, so I don't see how simply putting
an Rx in the mail would get the drug for the patient. There would be an
awful of lot explaining and informed consent paperwork required first.
Perhaps he sent her an Rx for one of the oral hypoglycemic agents that is
available.

Anyway, good luck with your other problems.

-hillary, daughter of a man with IDDM

Hi Songbird:

you wrote (snip'd)

aging. ......without telling her she had diabetes or doing any education.
She has lots of potential reasons for dementia other than Alz,

Yes, one of which could be diabetes related dementia.  Glad to hear your
seeing a new doc to get much needed answers.

background --
.... Any suggestions on how to structure this for maximum effectiveness? I
am
thinking bullet points

Sounds good - Some very specific examples might be helpful.

Also, consider bringing a tape recorder.  I never had a doc say "no", and it
was very helpful to refer back to questions or comments, cuz there's always
so much info.  It also helped Mom hear things that the doc suggested that
she didn't remember him saying (i.e. "no driving").

You sound very on top of things.  She's lucky to have you.

Good Luck!!

Pam
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