The Doctor Visit
by Pamela Rosenblum
Once a person has been diagnosed with Lewy body dementia (LBD), it is important to establish a good working relationship with the specialist, usually a neurologist, who is involved in their care. Because of the nature of LBD, the visit with the physician can become fraught with emotional conflicts. Often as a caregiver you want to let the doctors know what has been happening, about any changes in the behavior of the person with LBD, what you observe about the effect of medications, etc. Many caregivers find it helpful to keep a designated “for the doc” journal so as things come up you can jot them down, and take to appointments.
It is not unusual in our caregivers’ support groups to hear of loved ones, who are living with LBD, becoming angry with their caregiver (often a spouse) for saying things to the doctor that the person doesn’t agree with. This makes emotional sense. Accepting that one has any form of dementia is alternately terrifying, enraging, and overwhelming. Wanting to maintain control and speak for themselves is a natural reaction. While everyone’s relationships are unique, here are a few ideas that can help things go more smoothly during the visit.
First, even at the earliest stages of the disease, it is imperative that a responsible person—a family member or other caregiver—be in the room with the physician and the patient. This may seem like an obvious given to some, but to people who have—their entire adult lives—gone on their own to doctors, having their partner/caregiver be present may feel intrusive and even infantilizing. This is true mostly in the very early stages of diagnosis or even the beginning of trying to find out “what’s going on.” Often at this early stage. the patient may have already expressed some concern that they are having some cognitive problems. For example, they may have expressed frustration about difficulties with formerly simple tasks like paying bills, filling a weekly pill box, and making simple decisions. If a person balks at having their partner in the room during the exam, it is often enough to gently remind the person that they both want to get whatever help there may be to solve these frustrating problems and that both being present together is the best way to do that. Establishing that you are both in this together can be comforting.
Once the person with LBD has accepted that you will be present while the doctor asks questions, the problem often occurs after the visit. First, there is the “show time” phenomena during the visit, where the person with LBD seems to cognitively rise to the challenge and presents as sharper, higher functioning, and more capable than at home. Following an early visit, my husband was angry that I contradicted the answers he gave to questions. It was true; the doctor would ask him a question such as “are you having trouble finding words?” He responded as his “old self” with humor and wit and denied any troubles, while I knew that at home he’d turn to me in frustration expecting me to fill in whatever word he was searching for. When the doctor then turned and ask me the same question, I indeed contradicted his answer. This upset my husband very much, which was understandable.
The solution for me was two-pronged. Before the next visit I would say something like, “Now when Dr. S asks us both the same question, my answer may disagree with yours. I need to be able to tell her what I observe in order for us to get the best help possible for you. I’m not doing it to undermine or embarrass you.” Secondly, in the office I felt uncomfortable talking about my husband to the doctor in front of him in what is sometimes referred to as “third person invisible.” So when she would ask me a question, I’d actually turn and speak to him and say, for example, “I see sometimes that you are struggling to find words and how frustrating this is for you.” In this way, it includes the patient in the caregiver’s response.
Some caregivers find it helpful to call and speak or write a note to the physician prior to the visit. This can be a good idea if you have a good working relationship with the physician who would be sensitive about not being obvious that you are communicating separately, which could again feel belittling. Some people with Lewy can have bouts of paranoia so it is important to be careful not to feed into that with unrevealed communications.
After the visit is over, ask your loved one, “how was that? How did I do? Do you think I told the doctor the right things?” Again, the goal is to maintain your loved one’s sense of dignity and sense of agency in their own lives. It is an attempt to establish a feeling that “we’re in this thing together, I’m here with you through this journey, we’re a team.” Use whatever terminology works for you.
Finally, an often over-looked part of the doctor visit is the caregiver. I have noticed that even the best LBD doctor doesn’t necessarily ask the caregiver how she’s doing. Being a good caregiver; organized, articulate about what’s going on, informed and competent, can be a double-edged sword. It’s our form of “show time” in a way. We don’t bring up how difficult this is for us. Personally, I finally just brought up myself toward the end of my husband’s appointment. “I’m having a very hard time. I know I seem just fine here now, but what support does this department have to offer?” Immediately the doctor focused and told me she would have the social worker who works with their team call me. This added contact helped me not just in that moment, but as my husband’s disease progressed and when I needed aides and hospice. The social worker was there with information . Just as you speak up for your loved one with Lewy, don’t forget to speak up for yourself!
These are a few ideas on how to handle the doctor visit. Of course, each relationship is different and if you’re reading this and feel “none of that works for us!” don’t sit with your frustration. Reach out to our Helpline—we’re here for you.