A Tough Conversation That We’ve Been Dismissing for Too Long
A Shift in roles and relationships
After a loved one has experienced a stroke or brain injury resulting in Aphasia, there is undoubtedly a huge change in the roles and dynamics of the relationship. There is often a huge shift in responsibility, most of which falls on the one who has become the caregiver. There are now added household and financial responsibilities, pressure to be the glue that maintains those connections with friends and family, and never ending decision making for medical, personal, and financial situations. Becoming a caregiver often results in some level of burnout and stress, which puts the focus of the husband/wife relationship on the back burner. All of these changes likely result in a loss of intimacy – a loss of emotional and physical connection with that person. You were once able to have lengthy, intimate conversations and now it’s challenging to just discuss the simple day-to-day things like doctor appointments and what you need at the grocery store. How can you even begin to have a conversation about and try to build intimacy, when your main role now seems to be the care partner? Can you be a caregiver and a lover? How can someone with communicative challenges discuss a topic of such complexity?
The proof is in the research…
More than half (57%) of stroke survivors surveyed by the Stroke Association say their sex life has changed since their stroke. Stroke in the absence of Aphasia diminishes intimacy in up to 84% of couples. Research has also shown that the added presence of aphasia makes intimacy recovery even more difficult (Buzzelli, di Francesco, Giaquinto, & Nolfe, 1997; Grenier-Genest et al., 2017; Hemsley & Code, 1996). A critical review looking at the effects of aphasia on sexuality and intimacy within a spousal relationship (Arber, 2019) provided equivocal to suggestive evidence in regard to the effects of Aphasia on sexuality and intimacy in spousal relationships. The research findings agree that having Aphasia negatively impacts sex and intimacy within the spousal relationship in several ways. Specifically, negative effects included decreases in feelings of intimacy, frequency of sexual interaction, and satisfaction with sex life. It was interesting to note that studies involving only spouses of persons with Aphasia had specific results pertaining to a perceived loss of intimacy with their partners. So what can and should be done about this?
Our role as Speech Language Pathologists
We as speech language pathologists should be playing a role in this conversation, and should be able to support and facilitate conversation on this important topic that is often avoided. Shouldn’t this topic be a part of the rehabilitation process? Perhaps we’re assuming that there is some other professional that is taking on this role, and it just hasn’t been on our priority list as we’re focused on rehabilitating the individual with Aphasia. Aren’t we the ones who could support communication so our patients with Aphasia and their partners can maintain intimacy from not just a physical level, but an emotional level? Aren’t we perhaps the most appropriate professionals to be assigned the role of providing supportive ways to communicate about this topic and aphasia friendly materials so these discussions can take place?
Lets face it, sex can be a challenging, and perhaps even a bit of an awkward topic for any couple, especially when there is now a 3rd person mediating this discussion, and communication difficulties on top of this will likely make this topic even harder to address. But this doesn’t mean it should just be dismissed and avoided all together. It is our job to help our patients reconnect with their loved ones, and to try and help them rebuild some level of connection that they once had. Simply acknowledging that what they are experiencing is normal, and to be expected, may alleviate some of the stress and guilt they may be experiencing related to the area of intimacy.
Navigating this challenging topic
So how should we go about addressing this? I believe it is crucial for us to not only ask how our patients are doing, but also how our caregivers are doing, as they are often THE support person for our patient. So if they aren’t being supported, then we’re truly doing a disservice to both of them. How are you guys doing as a couple? Are you finding time to spend together outside of therapy, and able to have discussions about your relationship as a couple and how you’re feeling about one another? Asking some of these questions may lead them into being open to discuss some of the challenges they may be having as a husband and wife. I also think it is ok if we ask if they’ve been able to continue to show their love to one another, or if they’ve been able to develop new ways to show their affection and intimacy despite the communicative challenges. This at least opens the door, and then if both individuals are comfortable discussing this topic, we can provide aphasia friendly questionnaires and materials that allow for this discussion to take place at a more in depth level. Perhaps it’s not something they want to discuss in front of us as their provider, but would like to have more effective ways to communicate this more challenging topic with one another privately. This is when we can provide strategies and ways to support conversation between the two of them (writing down key words, providing choices, using visual support/pictures to improve processing of topics and questions, encouraging use of gestures and drawings to depict thoughts and feelings).
Assumptions may be limiting recovery
If nothing else, I encourage us as a profession to not assume that other professionals are taking on these rehabilitative roles, and to realize that we are likely the most qualified individuals to provide supportive and effective strategies pertaining to the discussion of such topics. We sometimes get on merely treating the speech and language impairments, but if we’re not involving emotional, social, and mental support pertaining to our scope, then we are truly doing a disservice to our patients and potentially hindering their potential for a true whole person recovery.