A caregiver's life includes many visits to a variety of doctors. There's the primary of course, then there are all the specialists. In the past, we have discussed how to choose a doctor. (The most important thing is to choose one who listens to YOU, the person who is directly involved in your loved one's care!) This blog is about how to deal with the doctor you've chosen.
Getting an appointment. What do you do if you feel your loved one needs to see a doctor sooner than an offered appointment date? You can always go into the hospital ER, but that isn't necessarily a good choice for someone with LBD. You really need someone who is familiar with your loved one's unique responses to drugs and other issues.
Barry started waking up and staying awake most of the night and then sleeping a lot during the day. Darla called his PCP but the earliest appointment was in two weeks. I asked to speak to a nurse who told her nothing could be done until the doctor saw him. Darla didn't accept this. She was polite but voiced her concern about having to wait so long. "I'll see what I can do and call you back," the nurse finally said. She called back in an hour with an appointment in two days.
Caregivers have to step up and make themselves heard. You will be surprised to find that usually, you WILL get results.
Preparation. Your visit will be better if you come prepared. What do you want to ask? What are the specific symptoms and behaviors? This is where your daily journal comes in. This doesn't need to be a lengthy thing. In fact, you can use a calendar to jot down pertinent information in a few words, along with a time of day.
Darla had been using her calendar to record when Barry got up and when he when he went back to bed (as best she could remember in the morning), and the times he napped during the day. This record, along with a list of the drugs he was taking and their times provided his doctor with the information he needed to adjust Barry's medications so that his sleep cycles were better regulated.
Getting the doctor's attention. Doctors are busy, with little time between appointments. Keeping a daily journal is great for helping the caregiver to collect information, but it needs to be boiled down into a more easy-to-read format for the doctor. Darla's calendar list of sleep behavior worked better than detailed journal entries, a long email or a drawn out verbal narrative would have. Barry's doctor asks caregivers to use a 3x5 card to write out their chief complaint, with as few words as possible, while still being clear about what the problem is.
Darla's card read, "Barry has started waking up and staying awake most of the night. Even though he sleeps a lot during the day, he doesn't feel rested."
These two short sentences gave the doctor a jump start towards knowing exactly what issue was bothering Darla and Barry most.
Working with other specialists. Don't expect your loved one's internist, podiatrist, cardiologist, or sleep specialist, etc. to know about Lewy's unique symptoms, even those related to their specialties. They may, but don't expect it. A doctor will make the best diagnosis they can and then move on to treat that issue. At that point, they often stop looking for clues that might connect it with another disorder.
Prior to seeing a dementia specialist, Barry saw a sleep specialist for his disrupted sleep cycle. The specialist diagnosed sleep apnea, based on Barry's thrashing of limbs while asleep. He prescribed a mask for breathing assistance. Barry was unable to understand how the unfamiliar mask could help him sleep and refused to leave it on.
While sleep apnea can occur with any dementia, REM Sleep Behavior Disorder (RBD or Active Dreams), is a unique symptom of LBD. A Lewy-savvy doctor would have considered active dreams first. Not only is RBD more likely, its treatment will be easier for Barry to accept.
Drug sensitivity. Don't expect any doctor not specializing in dementia to know about Lewy's drug sensitivity. Or they may know, but need a reminder. Always mention your concern about Lewy's drug sensitivity and tell the doctor of any personal issues. They will usually respond with a safer alternative if necessary.
The sleep specialist offered to prescribe a sleep aid for Barry when he wasn't able to wear the sleep apnea mask. Darla reminded him of Barry's LBD and voiced her concern about sensitivity, adding that he had reacted poorly to Haldol in the past. "This isn't nearly as strong as Haldol," the doctor said, "but let's try melatonin instead. I've read that LBD patients can tolerate it."
For the LBD caregiver, doctors visits are a cooperative experience. You know your loved one best, while the doctor has valuable specialized training. Speak up, voice your opinion and ask questions. If a doctor asks your opinion about various treatments, consider this a sign of good doctoring, rather than a lack of knowledge. Be willing to share honest impressions--and be glad you have a doctor who includes you in the treatment team. Your loved one is likely getting the best possible treatment!
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.