Loss of Intimacy a Cost of Caregiving in Aphasia

Top Lang Disorders Vol. 39, No. 1, pp. 55–70 Copyright c 2019 Wolters Kluwer Health, Inc. All rights reserved. Loss of Intimacy A Cost of Caregiving in Aphasia Amanda Stead and John White The sudden loss of intimacy can have a dramatic effect on satisfaction in a relationship. As many caregivers shift roles and try to personally adjust to their new reality, a steep drop in intimacy can often simultaneously occurs. Aphasia presents a significant barrier to opening discussions about intimacy and sexual contact. The purpose of this article is to discuss the current literature regarding intimacy in aphasia and present solutions for addressing this complex issue. One of the simplest solutions to addressing this gap in care is having rehabilitation professionals introduce these topics early in the rehabilitation process. This is optimally achieved through interdisciplinary training in the use of effective supported communication strategies for persons with aphasia. Another solution is to create community-centered events that allow couples to address issues related to intimacy after rehabilitation ends. This article describes one such program, an Aphasia Couples Retreat, ran as a collaboration between a local nonprofit and university program in the Pacific Northwest. The retreat provides couples with the opportunity to discuss and address issues related to intimacy, learn new skills, and gain support from an interdisciplinary team of students, speech–language pathologists, occupational therapists, and psychologists. Key words: aphasia, camp, caregiver, communication, intimacy, marriage, sex, stroke NE OF THE HIDDEN COSTS of caregiv- health care providers, and when one member O ing as an intimate partner is the impact of an intimate partnership suddenly becomes that it has on emotional and physical intimacy. disabled, as in aphasia, those conversations Many people have a difficult time initiating do not likely get any easier (Waterhouse discussions about intimacy and sexuality with & Metcalfe, 1991). When disability affects intimacy, it can have a dramatic effect on relationship satisfaction and this added cost to caregiving is often one of the most Author Affiliations: School of Communication undiscussed (Grenier-Genest, Gerard,´ & Sciences and Disorders (Dr Stead) and School of Occupational Therapy (Dr White), Pacific University, Courtois, 2017; Palmer & Palmer, 2011). The Forest Grove, Oregon. fear of losing independence coupled with The retreat experience described in this article is coor- the uncertainty of the future, for both the dinated by The Aphasia Network, a 501(c)(3) serving person with aphasia and the caregiver, can people with aphasia and their families in the Pacific drive many couples to seek the reconnection Northwest. often fulfilled by physical and emotional Amanda Stead has a non-financial relationship as she intimacy; the presence of aphasia, however, is a member of the Aphasia Network 501c3 Board. The other author has indicated that he has no financial and often severely impedes this reconnection. no nonfinancial relationships to disclose. Aphasia introduces a myriad of challenges to Supplemental digital content is available for this maintain a close emotional and physical rela- article. Direct URL citations appear in the printed tionship with a spouse as the intimate partner text and are provided in the HTML and PDF ver- (Grenier-Genest et al., 2017; Palmer & Palmer, sions of this article on the journal’s Web site (www.topicsinlanguagedisorders.com). 2011). The purpose of the present article is to describe some of the changes in intimate con- Corresponding Author: Amanda Stead, PhD, CCC-SLP, School of Communication Science and Disorders, Pa- nection that caregivers can experience with cific University, 2043 College Way, #A130, Forest Grove, their partners with aphasia. Some solutions OR 97116 (Amanda.stead@pacificu.edu). based in community training and increased DOI: 10.1097/TLD.0000000000000175 counseling are offered. This article will 55 Copyright © 2019 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited. 56 TOPICS IN LANGUAGE DISORDERS/JANUARY–MARCH 2019 also discuss one community-based program the very least, provide information and per- designed to aid couples in their recovery and mission to explore how to rebuild intimacy. reconnection. Altered roles and adjustment BACKGROUND AND SIGNIFICANCE Much of the way that a person shapes his or her identity is through the activities that Intimacy is broadly defined as “close famil- occupy their time, or occupations (Law et al., iarity or friendship . or sexual intercourse” 1996). These everyday life occupations (Oxford Advanced Learners Dictionary, n.d.). influence, and are influenced by, the life roles In the context of this article, the relationship one inhabits (e.g., worker, student, hobbyist, between intimate partners will be discussed athlete, parent, volunteer). When a member as it relates to both the physical (sexual of a couple experiences a neurological injury contact) and emotional aspects of intimacy or condition that leads to subsequent aphasia, (friendship, platonic love, and romantic many of the occupations they previously love). Although expressions of intimacy vary pursued become difficult, if not impossible. widely between couples, one important Because the partner or spouse usually is aspect of adjustment after aphasia is repairing expected to assume the role of caregiver and and reclaiming intimacy between partners. the survivor becomes the care recipient, their Communication is often an essential part shared life comes to be dominated by a focus of regaining emotional intimacy between on such things as self-care, medical manage- partners. Interviews with the partners of ment, expanded home care duties, and trans- people with aphasia have indicated that portation challenges. The illness narrative as they miss the emotional intimacy that comes described by Kleinman (1988) comes to dom- with discussing their relationship (Lemieux, inate the couple’s lives. In this narrative, their Cohen-Schneider, & Holzapfel, 2001). Al- shared life story is now defined by illness, and though for many the importance of and all of the aspects of care, recovery, medical satisfaction with sex itself declined, they appointments, and treatments push aside craved more emotional connection following most other activities and concerns. Their the trauma of stroke. It is this emotional range of shared occupations and roles that connection that is so difficult to rebuild when helped define them as a couple are dramati- caregivers cannot communicate effectively cally diminished and in the process, they may with their spouse who has aphasia (Lemieux lose their sense of couple identity, individual et al., 2001). Stroke in the absence of aphasia identity, and the roles and activities associated diminishes intimacy in up to 84% of couples with those identities (Kleinman, 1988). (Buzzelli, di Francesco, Giaquinto, & Nolfe, These new assumed roles are often un- 1997; Grenier-Genest et al., 2017). Research welcome and stressful and usually disrupt then shows that the added presence of the array of other roles occupied by mem- aphasia makes intimacy recovery even more bers of the couple. This altered dynamic can difficult (Hemsley & Code, 1996). Although lead to growing dissatisfaction, disharmony, nearly 30% of all stroke patients have aphasia, and resentment within a partnership. This there is a perplexing absence of this popu- is especially the case when typical chan- lation from studies involving intimacy. As a nels, such as conversation and discussion result, the perceptions of people with aphasia for working through such problems, are im- and their caregivers are rarely heard and often paired. (Palmer & Palmer, 2011). In addi- misunderstood (Lemieux et al., 2001). For tion to making sure that families can navigate this reason, it is critically important that the their shifting roles, the literature has consis- issue of intimacy be addressed in the rehabil- tently documented the need for caregivers itation process. It is important for health care to receive respite during the recovery pro- workers intervening with these couples to, at cess (Cameron, Naglie, Silver, & Gignac, 2013; Copyright © 2019 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited. Loss of Intimacy for Caregivers in Aphasia 57 Le Dorze & Signori, 2010; Michallet, Le Dorze, they felt an obligation to “stay” with their &Tetreault,´ 2001). partner despite struggling with numerous psy- For many people, independence is a gate- chosocial consequences of their own. This is way to self-esteem. When there is a sudden corroborated by other work indicating a de- change in a person with aphasia with the abil- crease in relationship satisfaction and signifi- ity to hold a job or complete household tasks, cant negative impacts associated with aphasia or he or she suddenly becomes dependent regardless of the type or severity (Williams & on others for personal needs, his or her care- Freer, 1986). giver often faces numerous consequences. Although the risk of relationship dissatisfac- What once was a mutual partnership turns tion and strife is high in couples with apha- into a caregiver and care receiver relationship sia, one encouraging finding is that for those and the loss of intimacy is just one loss in a couples whose relationships withstand these long shadow of multiple losses (Kitzmuller¨ & stresses, psychosocial well-being was found Ervik, 2015). The abrupt shifts in

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