My husband is in Stage 6 and has developed a new issue--he won't cooperate during medical exams. Even pre-dx, he always hated visiting physicians, but would force himself to do it. Up to now, he has continued to cooperate; however, earlier this month I took him to a new geriatrician and he actually walked out of the consultation room. He told the doctor "It is my body, I will decide if I want any treatments, there is nothing wrong with me." I was amazed that he was so coherent and that he actually realized it was a new doctor and office that he had never visited before (the doctor subsequently explained to me that in times of great stress, dementia patients can actually snap back to reality somewhat and think clearly). Anyway, after the holidays the doctor has agreed to come to our home and see if an exam can be done in this setting--he wasn't able to get enough info to treat my husband from the office visit. I plan on telling him that he must cooperate in order to continue receiving money from his long-term care policy. I am hoping that this will motivate him--it has worked before and kept him attending daycare for over 4 years. He is still aware of the policy and asks the aides who pays them--I have told them to answer "the insurance company".
After the geriatrician visit, last week we went to see the neuro. Again, my husband was more uncooperative than in the past, impatient to get the MMSE questioning over with and refusing to sit in the waiting room while the doctor spoke with me. I am thinking that perhaps for the next neuro appointment, I will take an aide with us who can sit with him when I speak to the doctor; I will also email the neuro to see if he has any other suggestions (extra medication before appointment? Would it be worth it?). The neuro did mention to me once that he does have patients who refuse to come in to the office, I'm wondering how he treats them. I doubt that he does home visits.
Wondering if anyone else has encountered this? I have only heard of dementia patients resisting appointments for the initial diagnosis, not 5 1/2 years later!
I will discuss with the neuro whether it is still worth attempting to come into the office. We do have one retired friend who probably would be willing to come with us (I hate to ask anyone else to take off work, i.e. my brother or other friends). Perhaps that would work better than an aide. The only pre-dx med my husband takes is for blood pressure; I don't think getting that prescription would motivate him to behave, but I can try it!
marilyninMD your post brought back strange memories. I needed to take Bill to the psychiatrist. At that time he was forgetting how to walk. I had a terrible time getting him in and out of the car. Once in the waiting room he got up unassisted and wandered into the exam rooms. There was no way of getting him to understand he needed to just sit and wait. He aced the MME. Even his logic was intact. He could not remember the words as he said they were of no interest to him and therefore didn't matter. What a strange and unpredictable disease.
Nora, you are right! I was astonished when Steve was alert (and angry) at seeing the new doctor. He doesn't know our home at times and doesn't know me, but at that point in time, things were clicking in his brain. Maybe someone needs to discover how to trigger that "great stress" reaction in the brain without the actual stressor.
maryilyn i think an aide he is familiar with would be fine in my opinion. its my choice now too instead of family. i would also ask about a slight increase of medications prior to office visits. we quit office visits after it was apparent the mmse was below par. a caring dr will usually try to work with you knowing how patients can be. good luck. divvi
marilyn, my DH has NEVER liked going to the doctor & only went to the neuro when our children intervened. He then went for tests (brain MRI, EEG, bloodwork up) & after DX he went for follow up appts for about 2 years & then flatly refused to go back to the neuro. So now our family doctor prescribes his meds. I recently asked him if he would prescribe him some Seroquel & he did. Sometimes I feel like I am going this alone.
Foster DESPISED going to the doctor...and the only reason he was civil with the Neurologist was that SHE was a woman. He was a Southern gentleman, true bred, and would even try to stand when she came into the exam room. Not so lucky with the other docs, who were all men.
What DID work for us was a company in Texas called House Call Doctors. (www.housecalldoctorsTexas.com) This is a large group that works out of Dallas/Austin/San Antonio/Houston and these offices extend into the communities around these cities. The docs come to the house, perform Echocardiograms, EKG's, lab work, and full exams. Foster thought this guy was a friend and they talked baseball, politics, etc., all the while, the doctor was doing his job. Each visit was a MINIMUM of 30 minutes, one on one. I could not have been more pleased. NEVER got a bill, not once. Medicare and our Secondary Insurance covered their services 100%. This is a new medical service around the country, I'm told, ... and doctors are signing on...They receive a handsome salary, and the parent company, (ie: House Call Doctors Of Texas, Inc.) handle the Insurance filings, cover their liability insurance, etc. The docs just get to be doctors. Our doctor was a graduate of Rice and the University of Texas Medical School. He had been in private practice for about 15 - and his speciality was Internal Medicine. They have cardiologists, oncologists, neurologists etc. on staff as well.
A few times, we would be the last patient in his schedule, and he'd snap his "doctor bag" shut, lean back in "my" recliner..., and enjoy a cold beer with Foster and they'd watch the 5:00 news together.
We were very lucky to have this service in the Houston area. It's worth looking into in your areas.
Nancy, that sounds great! The gerontologist is going to come to our home and see if it works better.
What you said about Foster being civil to a female doctor would probably be true of Steve as well. You've given me an idea, if he continues to act out with the new doctor and the neuro, I may try to find females. Our internist is female, but she isn't that familiar with dementia, so I'd rather he see a gerontologist.
Several of you mentioned talking to the doctors alone. I have never had one of DH's doctors talk to me alone. Did you ask for that, or was it routine at your doctors' offices?
Janet, I don't know how you get through this without talking to the doctors alone, especially in the early stage when the patients are sharper. Yes, it is routine at the neuro's office--to allow family members to speak frankly and fully voice their concerns, I guess. With other specialists, I have routinely emailed them prior to the appointments to discuss anything that I didn't want to address in front of my husband. Also, this can be a timesaver during the appointment because they are aware of your concerns before you get there.
Although I don't usually get to talk with the doctors alone, I don't think my wife understands what is going on. In addition to the AD, she is hard of hearing and won't wear a hearing aid. So the doctor and I talk fully in her presence. I have not seen any reaction (except one time when I was talking to the doctor and she was chattering about something in her reality. Suddenly she looked at us and said "are you listening to me?")
I guess, too, it depends on what you need to discuss with the doctor. For example, if there's aggression and anger, and you want the doctor to prescribe an antipsychotic, It's probably best not to do that in front of the patient. All of the discussions on that issue were without my husband present.
I have kept information in my computer on what DH is going through...print it out and have the neuro read it before seeing DH. If it was pretty bad I called and left a message with his nurse who would pass the info on to the doctor. That's how DH ended up on Sertraline and Seroqel. I am getting to the point of thinking we really don't need to see the neuro. I don't think he can do anything else and we can get the prescriptions from our PCP.
My DH will see the Dr. (PCP o Neuro), then ask if he's done. Tells them to tell me about the meds, refills, and goes to the waiting room. Works out okay.
Our Neurologist ALWAYS spoke to me alone. With the House Call Doctor, we'd chat for a minute when he came in the door...and again before he left. Foster would be sitting in his chair back in the family room, so he didn't realize we were discussing him. His doctor was amazing in that he always asked how I was doing, was there anything I needed and one time, wrote a script for Xanax.. He wrote the script for the wheel chair and wrote the referral to Hospice. I HIGHLY recommend this type of care, especially if all we are doing is providing comfort care. He kept Foster's prescriptions up to date - and Foster never thought of him as a doctor. Just a friend who dropped by.
Generally I did not talk to the Doctor alone unless I specifically asked. My dh would not have stayed in the waiting room alone. Our pcp, where we usually went, was a personal friend and occasionally I would make an appointment with him for me to go over dh condition. My dh really liked our pcp and the last geriatric Doctor, who was a female. I think a female Doctor for the husband works better, or at least it did in our situation.
My hb was always willing to go to his neurologist - until now. We got a letter in November that they had changed his neuro to a person with a name we can't eve pronounce. Now he doesn't care if he goes but we will eventually have to because his primary with the VA will not do the galantamine. He also liked that his neuro was a woman.