Take a few minutes to jot down any kind of change that you or another might have noticed. This could be important though it seems minor to us. I don't know what stage your DH is or what his status is but one question could be related to services you might need. Perhaps he might recommend PT like ours just did for strength and balance. One other thing one of our doctors gave us is a form for assisted visits of various kinds and one I am considering at this point is having the lab tech come to the house for blood draws..it is not easy for him to have to do a fasting blood test, go to the lab and then wait and wait..
If you need Hospice assistance perhaps this doctor can advise with that if it is necessary now or might be soon.
I am sure there are others with more suggestions too.
We're at the stage where I can pretty much take him anywhere, as long as I don't mind the slow pace, and I can't leave him home for too long, but I'm not ready for helpers yet, because I have no idea what to tell them to do.
Well...I'll wing it, as usual. Truth is, we're still just in the doldrums where I think we'll be for eons, so there's really not much "doctoring" to be done.
I always write down Sid's current functioning in 4 areas, and fax it to the doctor ahead of time. That way he knows what is going on before he steps into the room, and will know how to talk to Sid. It's just the way we work things, and it works well for us. I keep what I have written in a folder in my computer, so I can actually see the changes from one apt. to another or from year to year. (We go twice a year). Keeping track of these 4 areas is a good way for me to see where he is functioning, and I can base my questions to the doctor on them.
Emily--depends on what your relationship with the doctor is. If he/she is so inclined and you want the input, he/she can give you non-medical advice (i.e. suggestions for what to tell helpers to do). Since there is so little that can be done medically, I use the appointment time to get pointers on things like that. Last time my hb's neuro told me it was time to look at respite facilites and that it would be a good trial for placement someday. I didn't want to hear it, but found that as the weeks went by, it was good advice. We go more frequently--every 3 or 4 mos--so there isn't a lot to report using Joan's method.
BTW--I think there are threads here on things you can ask in-home help to do (I know it has been discussed and it helped me). Cleaning, laundry, cooking, etc. I have found that if you have someone with the right attitude, they will do anything you ask. Last week one of the aides helped me put away the off-season clothing, for example.
Actually, it turned out to be a little more interesting than I'd thought. Some months ago we'd requested records from Jeff's '07 neuro-psych testing (at Johns Hopkins) to be sent to the Georgetown U. Memory Disorders folks, and finally they'd sent the stuff and the team had looked it over.
So, the doc started pulling out the tricks they use for visual agnosia testing, for ex, the Ishihara color blocks, and--to his interest and surprise--I was able to narrate what he was doing since I'd already run a version of all these tests at home.
The upshot is that he concurred with what I'd concluded--that we're definitely a case of Posterior Cortical Atrophy (the visual variant form of AD,) and he referred us to a colleague at NIMH who is conducting PET-based studies of such variants. That could be interesting and worth a call, since I find it interesting to learn more and the procedures are non-invasive and therefore not difficult for Jeff.
One more opportunity to contribute to science is not a bad thing.