My 57 year DH went into a nursing home last December, due to a fall and has continued to decline. He is in a wheelchair, is speaking gibberish, and having problems with eating...forgetting how to eat sometimes, and has had to be fed for at least the last 6 months. He's losing weight, but I try to visit during mealtime so that I can take the time to feed him and coax him. Anyway, his prescheduled (6 months ago) Neurologist appointment is coming up, and I'm wondering whether it makes sense to take him. I will need to order a transport van ($$$) and will go along with him. He is full care, so the trip is challenging, but doable. His neurologist has been very good through the progression, but I wonder what value he'll add at this point. Frankly.....I'd like to visit the Dr. and talk through my dear husband's current state and what's ahead. Any thoughts? I want to do the right thing.

You could always make an appt. to speak to his dr. without having to take him to see the dr. Most of the time when I took my dh to see his neuro and would ask about what was ahead he would refer me to the various web sights regarding stages and tell me it was so difficult for doctors to tell the spouses what is ahead because even they don't know most of the time since each person is so different. Med adjustments became the reason for taking him to the neuro the last year. It all is so difficult for you and all the care givers.

Why is it that some of these doctors can't go to the NHs or facilities to see the patients?
I am lucky enough that MY primary care doctor is one who does make housecalls to them...or to me if I needed her..She is one of the concierge doctors...why did I go that route? Simply because the first thing she told me was that she makes these house calls and takes care of dementia patients and the caregivers as well as general practice.

I agree, call the neuro and get his/her advice on the visit. When dh was in the ALF, they had drs they conracted wih whom came on a regular basis to see the ALF patients. Perhpas the ALF has a neuro? If not see if your neuro will see him at the ALF.

Depending on the meds, the doctor may by law not be able to prescribe without seeing the patient after 6 months or a year. But asking for advice from the neurologist is a good idea. I find sometimes the best way to get the doctor's attention for a question I want to explain carefully is to write a letter and fax it.

After six years, the annual appointment time was coming up for my DH. Driving him from Home to downtown Houston's Medical Center would be challenging enough, plus the challenge of getting him into an elevator without him yelling,(he was terrified of elevators) was almost too much the year before, so I called his doctor. They admitted that the primary reason they needed to see him was more for documenting the progress of his disease for their research projects. His doctor was a renown Neurologist, who specialized in AD. As much as I appreciated her research and incredible knowledge gleaned from these research projects, I had to make a personal decision and that was to cancel the appointment. (I told them we'd reschedule!) He died four months later. I called her and gave her the information about his last few months. My point is, the visits are probably more for their research than for a way to help our dear husbands., and we just have to decide what is best to do. In my case, I did not want to upset him, scare him, and put him through the trauma that a visit to a busy high rise office building would have caused. It was more important to keep him in a safe, secure comfort zone. Was that a selfish motive? I hope not.

Nancy B*

adagio--when I moved my husband to a dementia ALF almost 2 years ago, I discontinued the visits to the neuro who had been treating him since dx (about 6 years). The reason was that the ALF's psychiatrist visits the facility several days a week and is familiar with all the residents. It seemed more advantageous to have him treated by a doctor who would constantly be in touch (and who coordinates with the facility's geriatrician) vs the doctor he had a good history with, but would see him only every 6 months. To say nothing of the logistical problems of transporting him to an outside physician. So far, it has worked well.

I did take this advice and will not be continuing the visits to the Neurologist, and DH's dr. concurred. We have been seeing him since the diagnosis early in 2008, and this neurologist has been extremely responsive, engaged and really a comfort in some way during this journey. The care at the nursing home has been good, with the doctors connected to the facility, and I am very involved. It's another reminder that this disease is, in fact terminal, and the progression has no forgiveness and no options for holding it back. Thanks all for the support.