In 2019, we (authors SM, LC) initiated a research study on the experience of care partners of people with Parkinson’s disease psychosis (PDP). Among other activities, participants wrote a letter to their care recipient’s doctor to the prompt: “Understanding that you know the most about this person, specifically their PD psychosis because you likely spend the most time with them (certainly more time than the doctor gets to spend with them), what details would you share?” Here, we present one letter, written by author LAD, followed by a short response by author SM, a specialist in movement disorders and narrative medicine.
I’ve been tasked, as part of my participation in a study of caregivers of patients with PD psychosis, to write an imaginary letter to Mom’s movement disorders specialist, but this might very well be a letter I actually send to you. The specific writing instructions reflect an implicit bias that caregivers of those with PD psychosis are universally inclined to withhold information from their loved one’s physicians, but I’m happy to report to you (and the study’s authors!) that we’ve had very open lines of communication over the years Mom has been your patient. I truly can’t recall something I’ve withheld from you for fear of embarrassing Mom by talking about it with you in front of her or for fear of embarrassing myself by admitting my frailties as a caregiver.
I make it a habit at each appointment to give you a rundown of any falls, notable physical symptoms (related or unrelated to PD), and any psychotic behaviors exhibited in the preceding 90 days. I note that there are some details you add to your notes and others you don’t, and I’ve never felt inclined to pursue asking why that is.
I do recall at least one occasion on which Mom asked me to leave the room so that she could talk with you privately, and two others on which she had sensitive questions she wanted to ask of you and for which she wasn’t sure I should be present. The earliest was when she wanted to know if my prohibition of her drinking beer was reasonable. The most recent was her telling you she was distressed that “he leaves me sitting on the toilet before bedtime.” I feel that in both instances, your responses to her were supportive of her as well as me.
I recall one instance in which I contacted you by phone outside of Mom’s presence and without her knowledge, and that was to report and inquire about the possible mental and physical effects of her not receiving prescribed doses of medication(s) while she was a resident in assisted living. I vividly recall your spelling out for me the realities of how med techs operate in institutional care settings. That shared wisdom has heavily influenced my caregiver choices ever since, and probably even that of other caregivers since I often share it when reviewing the pros and cons of options on the senior living spectrum.
While you’ve never inquired overtly about my well-being as Mom’s caregiver, I do recall your taking an active interest in two aspects of my care. The emergency information sheet that travels with Mom to every medical appointment or facility caught your eye, and you asked if you could share it with the Parkinson and Movement Disorder Alliance (PMDA). And you encouraged me to pursue with the PMDA any opportunity there might be to facilitate an online support group for male caregivers of those with PD, since I was already facilitating on-ground sessions for another non-profit…
As her PD has progressed, I’m aware Mom asks with more regularity questions such as, “Will I die from this?” and “How did I get this?” I think your answers to her have been straightforward as well as encouraging. You’ve let her know that because the disease is progressing so slowly in her body that she’s likely not to die of it, as her brother and a neighbor did, and you’ve let her know that there’s much that’s not known other than that it appears both hereditary and environmental factors are at play. Both responses seem to satisfy her curiosity, at least at the moment.
I think the most “visceral” help you’ve provided Mom, whether she is conscious of it or not, is through your eye and verbal contact. She is, without fail, the person you first look at and address when you enter the exam room, and it is to her you address your routine questions, even though I know you are perfectly aware she likely doesn’t understand the questions and that I’ll be providing the answers. And even when I ask questions of you, you are certain to address any response to me through her, by first looking at and explaining yourself to her and only then including me.
I think the most “visceral” help you’ve provided me as Mom’s caregiver is in the recent instance in which I shared with you a letter I’d written Mom outlining why I thought she might prefer to reside in a skilled nursing facility since she finds my safety rules so onerous. You weren’t the least bit hesitant to tell me that there is no longer a way for Mom to remember the rules, as you explained the rise of impulsive-driven behaviors with concurrent loss of executive function.
I’m not any more inclined than Mom to turn to additional medications or increases in dosages of existing ones for treatment of every new symptom we see, but don’t think I’d hesitate to ask you if there were something that could be prescribed to alleviate a troubling symptom, particularly of PD psychosis. I recall discontinuing my attendance at one PD support group because the entire time seemed to be spent on a frantic discussion of finding just the right combination of meds to make the PD “go away,” at least from the forefront of the caregivers’ minds.
Having seen my maternal grandmother ravaged by PD and watching it claim my mother in its own unique way, I have no illusions about where things stand in regards to PD. There is simply no beating it, and I appreciate Michael J. Fox’s recent admission that he risked “being glib” by presuming “others had that same relationship [of being at peace] with the disease when they didn’t.” Is it, as he calls it, a strange test? Most certainly, though I take little consolation in that.
What I have taken consolation in is the laughter that you, Mom, and I seem to share at every one of her appointments. Sometimes that’s all one can do in the face of the absurd!
This letter documents the ripple effects that PDP has on those around the patient. The second-person (“you”) address allows an intimate style, mimicking conversation, and the repetition in the word “recall” carries double weight, emphasizing not only shared memory between doctor and care partner, but also subtextually reminding the reader that psychosis robs his mother of trust in her own memories. The writer points to another such letter, which prompted the doctor to explain the neuropsychiatric manifestations of advanced PD. Thus, letter-writing can be an opening for difficult conversations.
The writer emphasizes his appreciation of the physician’s candor in “spelling out … the realities of how med techs operate” and encouragement to “facilitate an online support group for male caregivers of those with PD.” The physician, therefore, promotes a vision of the care partner as an advocate for not only his mother but also other patients and caregivers. The advocacy, or quest, narrative, as defined by Arthur Frank in the seminal narrative medicine text “The Wounded Storyteller,” represents a desire to give back to the illness community. Like a hero returning from a quest, an advocate uses his own experience to lessen the suffering of others. This altruistic orientation defines not only participation in research but also in this specific writer’s involvement in disease foundations.
Even as the writer casts himself as an advocate, he retains skepticism about those who are “frantic [for] just the right combination of meds to make the PD go away, at least from the forefront of the caregivers’ minds.” The writer reminds the doctor here of the limits of modern medicine; he has “no illusions” about PD. In referencing his maternal grandmother and mother, he subtextually highlights his fear of having inherited an errant gene. Yet he ends his letter on a high note, recalling with consolation “the laughter … that’s all one can do in the face of the absurd.”
Asking a patient or care partner to write a letter — instead of relying solely on verbal conversation — illuminates new aspects of the physician-patient-family relationship. A letter’s content and style reveal the writer’s anxieties, fears and hopes. We encourage clinicians to ask their patients and care partners to write letters; you may be surprised at what you learn.
This work occurred as part of the Michael J. Fox Foundation’s Parkinson’s Disease Education Consortium 2018 (PDEC 2018) project. The PDEC is sponsored by the following industry partners: ACADIA Pharmaceuticals, Adamas Pharmaceuticals, Intec Pharma, Lundbeck Inc., and Sunovion Pharmaceutical. We would like to thank the Parkinson’s community for participating in this study to make this research possible, and we thank volunteers on The Michael J. Fox Foundation’s Fox Trial Finder, an online clinical trial matching tool for Parkinson’s research.
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