Does everyone keep a notebook on medical info for their spouse (and yourself, as well)? I started doing that about 10 years ago when I was taking care of my parents, continued it with my DH and myself. It's a simple thing, but I think with a disease like AD that can go on for so many years, it is crucial, especially if your LO has been on lots of different medications, etc.
Maarilyn very good idea as sometimes the spouse is the only one who cares enough to coordinate the different specialists. They might get shared reports but often don't read them.
bluedaze--I went to a presentation by a nurse years ago,and she suggested to do this. One of the other things I remember is that if you're going in for surgery on something you have two of (i.e., hands, feet, eyes, etc.) mark the one to be operated on with permanent marker!
I am famous for my organizational skills. Unfortunately, I have been so overwhelmed the last year and a half that I have been remiss in keeping everything in order. I do have Sid's medication list and notes for his neurologist stored in a file in the computer, but I have not kept copies of all of his MRI and scan reports. That's something everyone should do, so when they are needed, you don't have to scramble around to call to get them.
I use a three ring binder. Initially I put the information in categories but later found that chronologically works better for me. I tuck the smaller perforated labels from the pharmacy into the side pockets.
The challenge for me is that I don't want to take everything everywhere and consequently have several "subfiles"; some of those partially duplicating others.
I do this sporadically and need to be more disciplined about keeping notes on an on-going basis. When dh was in the hospital this summer, the dr who saw him was a "hospitalist"-someone who had never laid eyes on dh or me before. I understand that this concept will be spreading to a hospital near you. Since that may be the case, everyone should keep a notebook on their medical issues.
Marilyn, several years ago I needed bi-lateral knee replacements and would be having the surgeries a week apart. In the pre-op room the nurse read my file and said that they would be operating on my left knee first. I told her it was my right knee. After debating with me that the records said left, she verified that I had not had any meds which would affect my judgement, marked my right knee and had me ititial the change in the records. Ultimately it didn't matter because both needed to be replaced, but if I only needed one knee operated on...?
When my father had knee replacement surgery, his surgeon came into the room before surgery and actually signed his name to the knee being worked on. When my dad needed a manipulation done on that same knee, he did the same thing. This was done before any meds were administered.
At the hospital we go to,you do not get out of the pre-op room until your Dr.has marked and signed the place where the surgery will be.Also,all MRI's, scans,etc. are onthe computer system,since we always use the Dr.s on their staff,they can pull up all results.Yesterday,I had an appt. at the surgeons and he pulled up all my tests on my pancreas from 7 yrs ago and compared them and "thank goodness" decided I didn't need the surgery right away.Was glad since I've had 4 surgeries the lasr 2 mmonths. I really like everyone on their staff and feel confidant whenever I have to go there for treatment,everyone is so accomadating of DH,keeping him entertained while I have tests or see Dr.
We have gone to the same hospital for over 40 years that has all records on the computer so any doctor we see there can pull up all previous visits dh has made. We can also access them on our computer along with checking appt. time, etc. We have had one local pcp for almost 30 years so all records there. Now I keep a list of all meds in my little purse with drivers license and car keys so if I'm out I'll have it. I update the list when meds are changed. DH also keeps a list in his billfold although I've noticed lately he doesn't have it with him all the time as he used to. When I had a knee scope the doctor asked me after we were in the operating room which knee and I told him he then asked everyone standing around the table which knee I had said then he repeated it and put an x with a permanent pin on that knee. I thought a good procedure.
I had cataract surgery--one eye last week, the other this past week. (I didn't have cataracts yet, I had it to correct my bad nearsightedness and astigmatism and now have 20-20 distance vision but need reading glasses.) They not only marked my forehead over the eye they were doing with a permanent marker, the doctor signed the mark with his initials. Four days later the second mark is still visible.
I have series of calendars going back year that I get from Johns Hopkins..there is a lot of information in the front about tests and when they should be done etc and in the back a section for doctors names and what tests are done, what meds are uesd etc..great ref from year to year and there is a lot of room to write any health issue or doctor appt.. Of course computer savy folks can do that with one of the many programs either with Windows or Mac.
I keep all our health and med info online, and also keep a list of Clare's meds in my wallet. Clare has been in a longitudinal AD study at a major NYC hospital since diagnosed 3 years ago, so all her AD records ... MRIs, PET scans, annual evaluations, etc. ... are on file there, plus I keep duplicates at home. I've been keeping logs since I first suspected possible AD about 6 years ago, and anytime there are significant changes I email excerpts of my logs to the geriatric psychiatrist at that hospital to keep her in the loop. Then, a month or so before each annual evaluation, I email her a summary of changes since our last visit.
Speaking of calendars for keeping our health issues front and center, I did find a calendar which I can use as a diary for DH's daily changes which is much easier than trying to keep a diary. It is called the " At A Glance" and is a Plan Write Remember calendar which has two days to a page for writing whatever you need, I found it at Office Max. It started with yesterday, the first..I have tried notebooks in the past but this will be so much easier. It would work for our purposes too. And again, the Johns Hopkins calendar is the one I use for myself as I can record who the doctors are, what meds I take, tests done and results and the front has all sorts of helpful resources for different conditions. I used to get the Johns Hopkins newsletter in the mail ( that was before I got computers) and that is how I got started with the calendars.
Mimi--my DH signed up for the Hopkins newsletters right after he was dx. I still get them; they just sent an interesting one on MCI. If anyone is interested, I will try to find out how you can sign up; they are written by Peter Rabins, the doctor who wrote The 36-Hour Day.