Roles, responsibilities, and relationships among older husbands caring for wives with progressive dementia and other chronic conditions.
Abstract: Men are playing greater roles in the provision of care for older adults with chronic health conditions. Husbands, in particular, encounter many role transformations as they witness their wives grow in levels of dependence as a result of their illnesses. This qualitative study examines the changes that occurred in the roles, responsibilities, and relationships of 17 husbands who were providing care for their wives with memory loss and other chronic health conditions. The results suggest that husbands experience changes in the ways that they adapt their marital roles to the new roles they assume as caregivers. It was found that the husbands had to learn how to form new types of relationships with their ailing wives. Implications for geriatric social workers and other health care providers are discussed.

KEY WORDS: chronic health conditions; husbands; male caregiver; older adults; relationships
Article Type: Report
Subject: Caregivers (Health aspects)
Caregivers (Social aspects)
Chronically ill (Care and treatment)
Husband and wife (Health aspects)
Authors: Sanders, Sara
Power, James
Pub Date: 02/01/2009
Publication: Name: Health and Social Work Publisher: National Association of Social Workers Audience: Academic; Professional Format: Magazine/Journal Subject: Health; Sociology and social work Copyright: COPYRIGHT 2009 National Association of Social Workers ISSN: 0360-7283
Issue: Date: Feb, 2009 Source Volume: 34 Source Issue: 1
Topic: Event Code: 290 Public affairs
Geographic: Geographic Scope: United States Geographic Code: 1USA United States
Accession Number: 195265941
Full Text: The demand for familial caregivers is growing. Although the current profile of a family caregiver is still an educated, middle-aged female, typically a daughter (National Alliance for Caregiving and AARP, 2004), demographic trends suggest that more men, specifically husbands and sons, will be assuming the role of primary caregiver for a chronically ill older adult over the next 20 years. At the current time, it is estimated that 37 percent of caregivers are men, with this percentage being higher among people who are not white, particularly Asians (54 percent), Latinos (41 percent), and African Americans (33 percent) (National Alliance for Caregiving and AARP 2004).

There has been a growing emphasis on the experiences of male caregivers, with a primary goal of educating professionals, including social workers, about how the male experience and perspective is both similar to and different from that of female caregivers (Fitting, Rabins, Lucas, & Eastham, 1986; Snyder & Keefe, 1985). One topic that has yet to be examined among male caregivers, specifically husbands, is the way in which they define the types of transformations that occur in their relationship with the care recipient as a result of the particular health condition, its progression, and their overall status as a caregiver. This information can help social workers by providing a context for the physical, emotional, and psychological challenges husbands encounter throughout their time as caregivers.

LITERATURE REVIEW

Attention to male caregivers of individuals with chronic health conditions, including dementia, has increased since the early 1990s. Research has found that the approaches that male caregivers take to the provision of care are affected by their life experiences, gender role socialization patterns, and expectations of their retirement years (Campbell & Martin-Matthews, 2003; Parsons, 1997). Russell (2001) described male caregivers as "capable caregivers, able to manage, as well as nurture, innovate, and adapt" (p. 354). Male caregivers are successful in caregiving roles through the use of outside assistance, self-education about the disease progression, and strong coping patterns (Harris, 1993; Kramer, 2000; Mathew, Mattocks, & Slatt, 1990), even though they may experience a sharp learning curve as they gain more knowledge about the intricacies of being a caregiver for a chronically ill older adult. Despite their effectiveness as caregivers, studies of husbands, as well as other male caregivers have demonstrated that men are not immune to the strains of caregiving, including depression, grief, stress and burden, and the need for assistance from formal and informal support networks (Almberg, Jansson, Grafstrom, & Winblad, 1998; Delgado & Tennstedt, 1997; Kramer, 1997; Sanders & Corely, 2003; Sanders, Morano, & Corely, 2002).

When compared with their female counterparts, however, men, research has determined, regardless of relationship status, fare better. Several researchers concluded that male caregivers experience less stress, burden, anxiety, and depression when compared with female caregivers, as well as less interpersonal conflict (Hibbard, Neufeld, & Harrison, 1996; Kramer & Kipnis, 1995; Thompson et al., 2004). Russell (2001) described the male caregiving style as "a model of caregiving that blends management with nurturing" (p. 360). In addition, both qualitative and quantitative research specific to husbands has determined that husbands possess a strong sense of duty to the care recipient, use a problem-solving process when meeting the daily needs of the care recipient, and are able to adapt to the changes in their caregiving role as the disease progresses (Harris, 1993; Kramer, 2000).

Researchers have also reported that husbands are highly committed to the care of their wives. The first observation of this commitment was seen in 1993 when, in a qualitative study of 16 husbands, Harris described a theme titled the "labor of love" (p. 554). This theme was characterized by the deep emotions that the husbands have for their wives and the loving intimacy that was shared between them. The work of Siriopoulos, Brown, and Wright (1999) further demonstrated the commitment of husbands through their qualitative theme titled "love and dedication." With a sample of eight husbands, Siriopoulos and colleagues (1999) determined that the love husbands possess for their wives creates and maintains an enduring sense of respect, which translates into a strong devotion to their caregiving responsibilities. Even though these qualities do not shield the husbands from other feelings, such as grief, anger, and frustration that accompany caregiving, they do play a significant role in maintaining husbands' investment in the role of primary caregiver. Cahill (2000), in another qualitative study of 26 husbands, echoed the theme of commitment when the primary rationale for assuming caregiving roles was "love, marriage, duty, or a combination of each" and "all encompassing commitment" (p. 58). Russell (2001), in another qualitative study of 14 husbands, found that even though one's definition of commitment might vary, the overall essence of the term "commitment" in response to day-to-day caregiving is the same. Russell found that the idea of "just do it" was at the heart of the commitment that the husbands had to their wives.

More research is needed to understand how men change as a result of their caregiving roles, specifically about how the relationship between the male caregiver and the care recipient changes throughout the time care is provided (Houde, 2002; Russell, 2001). The current qualitative study is based on in-depth interviews with husbands who are providing care for wives with progressive memory loss and other chronic health conditions. It describes the transformations that occur in the husbands' roles and responsibilities with their wives and the transformations that occur in the relationship between the couple. The main research question is as follows: What are the changes in the roles, responsibilities, and relationships that husbands experience as they provide care for their chronically ill wives? The answer to this research question will provide valuable information about the relationship between male caregivers and the care recipients that will enhance the practice of social workers and other health care providers who work with husbands of wives with memory loss and other chronic illnesses.

METHOD

Institutional review board approval for the research was obtained from a large midwestern university. A qualitative methodology, based on the tenets of phenomenology, was used to capture the "lived experience" of husbands (Creswell, 1998) as they provided day-to-day caregiving for their wives. Understanding the meaning of being a caregiver from the perspective of a husband was the justification for the decision to use a phenomenological perspective (Morse, 1994; Parsons, 1997). The essence of this experience was captured through two interviews with husbands about their roles and responsibilities as caregivers and their views about their relationship with their wives.

Sample

The sample consisted of 17 husbands who resided in rural communities in a primarily rural midwestern state. The 17 husbands were a subsample of a larger group of 20 male caregivers who were recruited to participate in a qualitative study about male caregiving (Sanders, 2007). Twenty-three husbands expressed interest in participating in the study; however, six potential participants were lost prior to the first interview because of changes in their caregiving situations, including caregiver and care recipient health crisis or death.

The 17 husbands were recruited through fliers that were distributed to agencies that serve older adults in two neighboring counties. The husbands were also recruited at conferences and speaking events that targeted caregivers of individuals with memory loss and through a newsletter that was distributed daily at a large hospital. In all recruitment material, it was emphasized that a caregiver was defined as a person providing daily, hands-on care to the care recipient, regardless of the care setting. For the purpose of this study, however, the inclusion criteria dictated that the male caregiver had to be a relative and had to have provided care in a home-based setting within the past six months.

The age of the husbands ranged from 66 to 85 (M = 77, SD = 9.5). All of the men were white. The men had been married for an average of 47 years, ranging from one husband who had been married to his second wife for 30 years to another who had been married for 62 years. Over the course of the study, 15 men provided care at home, whereas two had their wives residing in a long-term care facility because of their wives' declining health and difficulty managing the disease progression. Reasons for including the two institutionalized cases were that one husband had his wife admitted to a nursing facility only three weeks before participating in the first interview because of difficulty in managing her behaviors during personal care, whereas the second husband had his wife admitted to the facility between the first and second interview as the result of increased agitation and aggression and his own failing health. Both of these men had cared for their wives at home for more than five years before placement occurred.

Each of the care recipients had some form of progressive dementia, most commonly Alzheimer's disease, as well as another chronic health condition, including diabetes, emphysema, kidney failure, osteoporosis, or a long-term mental health condition such as bipolar illness or depression. All of the male caregivers had received or were receiving some type of assistance from a formal or an informal provider; however, the amount of outside assistance that was obtained varied significantly (Sanders, 2007). Most commonly, the male caregivers had been or were currently receiving assistance from adult day care facilities, in-home personal care assistance, chore, laundry, yard services, or long-term care facilities.

Data Collection

Data were collected in person from each husband through two interviews that occurred approximately four months apart. Interviewing the husbands at two points in time allowed changes in the caregiving situation to be captured and confirmed the rehability of the husbands' statements from the first interview. The use of more than one interview allowed for prolonged engagement with the participants, which enhanced the scientific rigor of the study and the credibility of the findings (Lincoln & Guba, 1985; Padgett, 1998). It is interesting that in all cases the health status of the care recipient, and in some cases the caregiver, declined from the first to the second interview. This resulted in changes in the caregiving location, the mobilization of additional caregiving supports, changes in the overall physical and mental health status of the caregiver, and transitions in the role of the male caregiver and the relationship with the care recipient.

The husbands were interviewed in a setting that they determined was "safe." Thirteen of the interviews occurred in their home, whereas four were conducted in the office of the primary researcher or at a nonprofit agency or long-term care facility. The interviews were conducted by either the primary researcher or a research assistant who had been trained on the study methodology, protocols, and interview guide.

A semistructured interview guide was used. Although the interview guide provided guidance on the content of the interviews, the direction of the interview was influenced by the husbands. Specific questions were asked about their caregiving experience from the time that the first health changes in the wives were identified through the present time; changes in the physical, emotional, psychological, and cognitive health of their wives; daily activities and challenges associated with the caregiving role; historical and current information on the marital relationship; and the husbands' philosophies about caregiving. Each interview was audiotaped and lasted between 60 and 120 minutes. Following each interview, the primary researcher and the research assistant discussed the interviews to ensure similarity in interview style, to identify probes that were used to gather additional information, and to determine strategies that were used to address any concerns expressed by the caregiver. Each audiotaped interview was transcribed and then checked by the primary researcher. This entailed listening to the tape while reading the transcript to ensure accuracy and the documentation of emotional intonations in the voice of the husbands. Interview notes were kept following each interview.

Data Analysis

The goal of data analysis from a phenomenological perspective is to determine and then describe what is occurring within the phenomenon or situation of interest, which for this study was caregiving from the perspective of male caregivers (Creswell, 1998; Parse, 2001). The description of the caregiving experience from the viewpoint of the male caregiver emerged from the transcripts of the in-depth interviews.

The transcripts were read by two individuals, the primary researcher--who specializes in caregiving--and another geriatric social work researcher from a different institution. Both individuals have practice experience with male caregivers of individuals with memory loss. Data analysis focused on a process of content analysis and the constant comparative method, which entailed dividing the text into meaning units and then comparing segments of text from similar meaning units and different meaning units to ensure consistency and continuity in results (Lincoln & Guba, 1985). This process ended in a preliminary list of categories and themes from the data. This process was completed individually by both researchers, and then the results were compared to ensure a strong reliability in the coding, which was calculated at .72. The areas of the transcripts that were analyzed differently were reanalyzed and discussed until a consensual interpretation was reached. Disagreements between the two researchers' analyses resulted from differences in the naming of the themes or pertained to differences in interpretation of the statements made by the husbands. The differences were resolved through discussions of the data and analysis of data from notes and journals to assist in clarifying the context of statements. This was also considered a form of data triangulation.

Once a final list of domains and categories was developed, the results were presented back to two husbands who had been interviewed for the study, as a form of member checking. Both husbands had a high school education and provided care in their homes. The husbands reported agreement with the analysis of the findings. This process was completed to assist in ensuring the trustworthiness of the data analysis process and the presentation of study findings (Padgett, 1998).

RESULTS

Two main themes within the experiences of husbands emerged from these data. The first theme pertained to the adaptation of old roles within the marital system to new roles that are associated with the responsibilities of caregiving. The categories that emerged in this area included the following: protector of self-esteem, dignity, and personhood; provider of personal care; planner of activities and socialization; and home maintenance and keeper. The second theme related to the changes within the relationship between the caregiver and the care recipient as a result of the onset and progression of memory loss and the other chronic health condition. Four categories emerged within this area: (1) developing a new type of intimacy and closeness, (2) adjusting to the personality changes associated with chronic illness, (3) learning to cope with the unexpected, and (4) recognizing the finality of the relationship.

Adaptation of Old Roles to New Roles Due to Increased Responsibility

Protector of Self-Esteem, Dignity, and Personhood. The husbands expressed that protecting their wives was one of the most critical roles that they played as a caregiver. Even though the men had always perceived themselves in a protective role, this role assumed a new meaning for the men as their wives' condition deteriorated. Their conceptualization of a protector was strongly rooted in the desire to maintain their wives' self-esteem, dignity, and personhood. For instance, a 75-year-old husband exemplified his perspective of a protector as he described his experience taking his wife to a movie. He stated the following:

Other men linked their role as a protector to ensuring that their wives' self-esteem was not damaged in potentially embarrassing moments that were associated with their health condition, such as episodes of incontinence, not recognizing or recalling people or places, or exhibiting potentially inappropriate social behavior around others. Statements such as, "She has a lot of bladder control trouble, so we very seldom leave the house," or "She has trouble walking. I try to help her the best I know how so people don't stare" exemplify the essence of the strategies that the husbands used to protect their wives' self-esteem. For others, the feelings of being a protector corresponded with providing care at home, instead of in a facility-based setting. Statements such as, "She would rather be with me than in a [nursing] home," "When I signed on as a caregiver, it did not mean only until things got bad and I needed a facility; they don't do that well there anyway," and "What could a home do that I can't do? The only difference is that they get paid and I don't" demonstrate this sense of protectiveness that the men felt toward their wives.

Provider of Personal Care. One of the most critical role changes that the husbands encountered was associated with the need to assume responsibility in assisting their wives with personal care. Thirteen of the 17 husbands commented not only that they never considered being a caregiver but also that they had not anticipated assisting with tasks, such as bathing, toileting, or dressing. Regardless, the men learned strategies for how to provide personal care in a way that was acceptable to their wives and themselves. A 74-year-old husband exemplified this when he stated the following:

An 83-year-old husband also explained how he handled personal care within his and his wife's comfort zone:

An 80-year-old husband described how he problem solved to ensure his wife's personal care needs were being met:

In each of the husbands' statements, a clear sense of pride emerged that they were fulfilling a critical role in the overall care of their wives.

Other men found that the provision of personal care was one way they could demonstrate their commitment to their wives. A 76-year-old husband stated, "I don't mind cleaning up the messes of diarrhea. It is not her fault, l just want to be of use." An 80-year-old husband commented that addressing his wife's physical pains and complaints was a way of showing his love and commitment to her. He stated the following:

For several of the husbands, the difficulties that they experienced with providing personal care were the catalysts for having to relinquish their main caregiving responsibilities to a formal service provider. A 75-year-old husband provided similar sentiments by stating the following:

A different 75-year-old husband stated, "I couldn't take care of her anymore because she wouldn't let me bathe her ... but I was giving her total care except for her hygienic things or toilet. I just couldn't handle her anymore and I had to get help."

Planner of Activities and Socialization, Since their wives' illnesses, the husbands found that one of their new roles was planning activities and maintaining social contacts. For some husbands this was a source of enjoyment, for others it was stressful. An 85-year-old husband stated, "I try to plan something, but she isn't all that anxious to do things. She does like to go out to eat occasionally." A 66-year-old husband also experienced frustration. "She's like a little kid. She'll walk out in front of car or anything. I can't take her anywhere. If we go out, I need a leash for her ... that is what I need."

Other men determined that everyday appointments can be activities and a time for socializing. Several men made comments such as, "I can take her to the doctor and on some short trips," "I try to take her to senior citizens every day. That gives us both time to get out and see people," or "I try to get her out around noon." Regardless of the husbands' feelings about planning events for their wives, there was a common sense that going places was positive for their mental health and the mental health of their wives. This was best exemplified by an 84-year-old husband who noted the following:

Home Maintenance and Keeper. The husbands saw their role in the home expand from that of a maintenance person to an individual who had the responsibility for maintaining the standards of the home that had been originally set by their wives. Many of the men changed their focus from tasks, such as lawn mowing and home repairs, to tasks that their wives had performed, including vacuuming, laundry, and decorating, because they felt these tasks were more important to their wives. An 84-year-old husband exemplified this by stating," I keep the house and I keep it nice. I mow the lawn and take care of things real nice on the inside because that is her goal. An 80-year-old husband stated, "My main concern is that I don't have that odor [urine] smell right now. I really work at that ... keeping that odor out for her."

As this process unfolded, many of the husbands reported feelings of guilt for the lack of assistance they had provided to their wives in the past. According to an 83-year-old husband, "I never picked up my socks. When she vacuumed, I lifted my feet. You know she could get around the chair I was sitting in and things like that. I wasn't worth much." He continued by stating, "She did all the cooking and really all the washing. I never even knew how to operate those things. I have gotten it all coming back to me in the last few years." Similarly, a 66-year-old husband stated the following:

Many of the husbands indicated that they developed an awareness of how demanding they had been throughout their marriage after they witnessed their wives exhibit similar behaviors. This too contributed to feelings of guilt. This is poignantly exhibited by a 76-year-old husband who stated the following:

Many of the men felt extreme pride in their ability to maintain the standards that they felt had been set by their wives through years of marriage. One 76-year-old husband described the pride in learning how to have a warm meal always available for his wife:

Other men felt pride in the ways that they kept the wives as independent as possible in assisting with the jobs around the home that had been enjoyable. According to a 74-year-old husband, "I put the little dots on the stove. I took a tape thing and put what they were. It worked for a while and kept her cooking, but she doesn't anymore. She and I, we worked together doing things."

Developing New Relationships with Their Wives

Developing a New Type of Intimacy and Closeness. Many of the husbands commented that with the onset and progression of their wives' illnesses, their relationships had transformed to include the evolution of a new form of intimacy and closeness. For some men, the evolution in their intimate relationships was acceptable and enhanced a sense of closeness that had not been present for years. These men found the transformations in the sexual connection with their wives led to a different type of dedication and devotion in their relationships. A 78-year-husband stated, "I think as time grew it [our relationship] got closer. Particularly now, we have much more respect for each other." A 79-year-old husband stated, "One item in our relationship that has changed is the sex. Haven't had sex for three years. I don't know why. We just don't do it. Our relationship is now maintained through respect and thoughtfulness ... things like that." A 76-year-old husband echoed this by stating the following:

For other husbands, the evolution in their intimate relationship with their wives was a significant source of loss. According to a 75-year-old husband, "Although I'll hug her and tell her I love her and she'll get tears in her eyes, I do not think she knows. She's just kind of out of it." This man continued by stating the following:

The loss that was exhibited as the intimacy changed was highlighted by comments such as, "My wife is a totally different person than she was 10 years ago," or "She recognizes me as nobody. 'Why are you here?' is what she says."

The commitment of the husbands to their wives and for the new relationship was evident regardless of the changes in their intimate relationship. A 79-year-old husband stated, "Like I said, I love the woman and I'm not going to give that up. We took our marriage vows and all. I said 'I do,' and we do it until death. That's the way it's going to be." A 76-year-old husband poignantly expressed his commitment to his wife as follows:

Even for the men who commented on the temptations they had for other women, it did not negate the commitment they felt to the care of their wives.

Adjusting to the Personality Changes Associated with Chronic Illness. One of the most apparent relationship transformations that the men encountered was associated with the personality changes the care recipients experienced as a direct result of their chronic illnesses. Although many of the men still considered their wives' personalities to be "sweet and charming," they also reported an increase in "negativity," "pessimism," and an "overall sense of being demanding." A 76-year-old husband summarized his wife's personality changes when he stated the following:

One man, age 84, echoed a similar thought. He stated, "She's not the upbeat person that she was, and I can understand why because she has to look at her situation and think as she often says, 'I'm a mess.' It's hard for me to see her like this."

The most difficult personality change that was exhibited was sudden violence in wives who had always been passive. For the men who experienced violence from their wives, it created a great deal of grief and pain. A 66-year-old husband stated the following:

A 78-year-old husband shared a similar story:

Despite the violence and the other personality changes, the husbands were trying to adapt their own strategies to continue to meet the needs of their wives. This is summarized best by the thoughts of a 76-year-old husband: "It's a link in the lifelong chain that I certainly hadn't anticipated, but there have been a number like that. And I've been able to ... I think ... I've been able to make the adjustments pretty well."

Learning to Cope with the Unexpected in Their Relationship. Part of the transformations in the relationship with their wives was the husbands developing new ways of coping. This was particularly challenging because the husbands felt that their wives had been one of their primary sources of support and had always served as a critical element in their ability to cope with aversive situations. Many of the husbands indicated that although they had not been the most patient people in the past, they realized that it was imperative for them to identify ways of coping that promoted a sense of tolerance and patience. A 78-year-old husband stated the following:

Another 78-year-old husband reported as follows:

Besides patience, the men reported other types of coping strategies, including "walking away," "calling friends," "attending a support group," and other types of self-care activities. The most common form of coping that was reported by the men was the designation of some form of personal time each day. Although the way that this time was designated differed between the men, the overall message for all the men was that having this was the only factor that was going to ensure their survival as a caregiver. An 80-year-old husband stated the following:

Recognizing the Finality of the Relationship. The hardest transformations within the relationship that the husbands had with their wives were associated with the grief that was present as they recognized the finality of their relationship. Many of the men reported intense grief reactions as they described how the relationship was ending, including feelings of sadness, anger, denial, guilt, and resentment. An 81-year-old husband stated, "Your heart is heavy. It just hurts you, 'cause there's that woman who is now not up to anything like she was. It just really hurts you." A 78-year-old husband reported as follows:

A 75-year-old husband acknowledged his recognition that the relationship was ending by stating the following:

Among the majority of husbands who had yet to place their wives in a long-term care facility, the fact that few children or other relatives would provide assistance in the event that they could not provide care created some of the most significant grief. Comments such as, "The kids won't let her move in," "They don't have time for her," "Their own lives make it impossible," and "She knows where she will go if I get sick and die" were some examples of the husbands' statements about their wives moving to a facility if they were unable to provide care. Even though the idea of their wives being in a facility created a great deal of grief and pain, to the point for some men that they cried during the interviews when discussing it, they were also realistic about the fact that this would probably be their only option.

All of the husbands indicated that as they felt their relationship with their wives ending, they were cognizant of all of the things they currently missed and would miss in the future. A 75-year-old husband stated, "I used to buy her a lot of little things she likes. Like ice cream bars and stuff like that. She loved cappuccino and I'd stop and get her that. I miss doing those things for her." Other men made statements such as, "I miss her companionship ... her just being there," "I miss being able to do things together, travel, musicals, things like that ... I now do those things alone," and "I miss the conversations without her asking the same question over and over and over again and then moving on to another question 10 minutes later." Even though the men were aware of their losses and grief, expressing it was uncomfortable. This was poignantly stated by a 74-year-old husband: "I know I am losing her, and there's once in a while where you feel sorry for yourself and allow yourself to grieve. Brief moments of weakness."

DISCUSSION AND IMPLICATIONS FOR PRACTICE

The role of male caregivers will continue to expand over the next 20 years. The present study found that like female caregivers, husbands are nurturing as the care recipient's health status declines and the changes in their previous roles, responsibilities, and the overall relationship occur. Like other research, this study demonstrates that husband caregivers, like wife caregivers, possess affective qualities (Kaye & Applegate, 1994) that influence the way they respond to the changes in their relationships with their wives. The study also demonstrates the husbands' desire to continue to please their wives and to maintain some sense of normalcy in their lives as a married couple, despite encountering many transitions in how they view their marital roles and relationship. As found in other research (Harris, 1993; Matthews, 1997; Neufeld & Harrison, 1998), the husbands were clearly committed to the care of their wives, as was demonstrated through their overall desire to protect and provide for them, the development of new forms of intimacy, adjusting to their wives' personality changes, and learning strategies to cope with unexpected events associated with caregiving.

The changes that were noted in the roles and relationships between the husbands and wives contained elements of pride by the male caregivers as seen in the themes of being a protector, provider, maintainer of the home, and organizer of opportunities for socialization. In addition to pride, the husbands communicated the ability to learn new strategies for overcoming adversity and coping. Through this process, they gained a greater sense of self-awareness and awareness of the relationship that they had formed with their wives in the past.

Even with feelings of pride and commitment, a key reaction of the husbands to the changes in roles, responsibilities, and relationships was the struggle between "how things were" and "how things are now." This was seen in many of the frustrations communicated by the husbands, such as their wives' behavior in public, episodes of violence or agitation, and lack of interest in social activities. This dichotomy reflects how the men were trying to maintain a sense of normalcy in the face of the changes that were happening in their lives and in the lives of their wives. It is interesting to note that some of the men seemed to feel guilty for their past relationships with their wives and were using caregiving as a way to repay them for their care over the years and to create a relationship based on reciprocity. These issues, as well as the desire of the husbands to maintain their wives' dignity and keep them involved in activities and social events, made them internalize the changes in their levels of intimacy and closeness that contributed to a great deal of grief. This was further exemplified as they described the personality changes that their wives experienced and how their lives now revolved around the unexpected. Changes and reactions such as these often go unrecognized, given that male caregivers are often viewed as "stoic intellectuals" in their caregiving role (Davies, Priddy, & Tinklenberg, 1986).

Social workers have the opportunity to play a greater role in working with husbands as they negotiate the changes in their relationships with their wives and the roles that they play within their greater family system after assuming a caregiving role. They have the opportunity to assist husbands in adjusting to the changes in their roles and how these changes can positively and negatively affect their relationship status. Although research has found that male caregivers do use formal services to assist with instrumental caregiving tasks (Coe & Neufeld, 1999; Siriopoulos et al., 1999), these services often do not address the emotions that the male caregivers experience as they witness the changes in their roles and relationships. Although female caregivers have been socialized to participate in the sharing of feelings and emotions, many older male caregivers have received socialization that speaks to the need to not express emotions. Men are more likely to process the emotional and psychological effects of caregiving individually, without sharing their thoughts and feelings with others, even in a group setting (Davies et al., 1986). Thus, social workers have the responsibility to assist male caregivers in finding safe places to share and process some of the emotional elements associated with their caregiving roles. Topics such as intimacy, guilt, grief, and agitation may not be easily discussed by either the male caregiver or the social worker. It is important to educate social workers about these topics to assist in minimizing some of the stigma and embarrassment when they arise in clinical settings. Services such as male support groups based on a psychoeducational philosophy or peer mentoring with other male caregivers might be additional opportunities for the examinations of these feelings (Davies et al., 1986). By moving away from a feminine perspective of care and support, social workers are better able to assess for and locate the types of services that can best meet the needs of male caregivers. Through the use of the strengths perspective and a clear focus on the husbands' commitment to their caregiving roles, social workers are able to empower male caregivers to navigate through many of the challenges that are associated with providing care to an individual with cognitive impairment, in addition to other health conditions.

STRENGTHS AND LIMITATIONS

This study contributes to the growing body of literature that examines caregiving among older men. Through the use of prolonged engagement, the voices of the husbands about their caregiving experience were heard at two points in time. The analyses were verified through the use of two coders of the data and member checking with husbands. Despite these strengths, there are several limitations to this study. This study has a relatively small number of participants, and it was only able to capture the caregiving experience for a limited amount of time. Thus, it was unable to clearly document how the roles and relationships of the husbands with their wives would continue to change over the course of the disease. This is also a self-selected sample that identifies only the experiences of the men who choose to participate in the interview process. The study included only white husbands, which limits the transferability of the findings to other racial or cultural groups. Future research should examine the effect of caregiving for husbands from different racial groups. Furthermore, the husbands in this study were relatively close in age. Future research should consider using a broader age range of husbands to capture the experiences of younger husbands who are caregiving. Finally, future research should consider including husbands in both rural and urban settings to determine whether there are differences in their experiences.

Original manuscript received November 10, 2005

Final revision received November 2, 2006

Accepted March 29, 2008

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Sara Sanders, PhD, MSW, is assistant professor, and James Power, MSW, is a doctoral student, School of Social Work, University of Iowa, 355 North Hall, Iowa City, 1A 52242; e-mail: sara-sanders@uiowa.edu.
I used to take her to the theater. It was difficult
   for her to move around fast, and she had this
   problem with seating where she had to be careful
   where she stepped. She sometimes would brush
   up against people and they would get angry. I
   had some little Alzheimer's cards to explain why
   she was like that. I never used one, but I was
   tempted to so people would not be so negative
   towards her.


So, in the shower, I used to go in and we both go
   in and showered but she didn't like me washing
   her hair' cause I got soap in her eyes. So, I solved
   that problem by having her to go to the beauty
   shop once a week to get her hair washed and I
   just do the shower.


I put the briefs on her 'cause she has a little discharge
   or something that's typical for a female.
   Besides that, I put the diapers on her that hold
   at least a quart. That way I only have to change
   her about twice a day.


I said I gotta have a hose to put in the bathtub.
   You can't give a person a bath without a hose.
   You can run water over you, but you can't wash
   the parts that need washing. I can't give her a
   bath sitting on a chair. As long as she is standing
   up, I'll wash her completely. Very few women
   get a bath as thoroughly as she does.


She was constipated, it wouldn't come out. I
   called the nurses that I knew and they said to
   use a plastic glove. All they tell me is get a plastic
   glove. My mother used to take soap and use it in
   our rear ends. So, I went and got a bar of soap
   and just worked it out. My wife was so happy
   with me, and boy did she smile.


The main thing I do is get her dressed. Put her
   in bed, I got to use the lift. Get her out of bed,
   and get her clothes on. Then I have to feed her
   and give her all the medicines. She takes about
   15, 16 different types of medicines. It's too much
   to handle without help.


It doesn't really matter what we had to do before
   we got out. We both usually have fun and feel
   different when we get back home. If it wasn't
   for that, I probably wouldn't put the work in
   the next time.


I never kept a checkbook or nothing. I had never
   cooked nothing. I had never dressed a woman
   before in my life. I had never put a woman, or
   man for that matter, on a toilet. I did not know
   what to do.


There's times when I get stressed. In the morning
   she wants things one, two, three. As soon as
   I get her up and for about half-hour, forty-five
   minutes it's bang, bang, bang, and you've got
   to do everything by the number and do it just
   the right way. I think I was like that before this.
   Now, I jump when she yells.


I've been dappling in cooking a little bit for a
   year. I've found the slow cooker a great friend.
   Meat in there in the morning and vegetables
   later in the day. First thing you know, you have
   a hot meal.


Sexually it went to hell a long time ago. Sex just
   became more or less routine. I don't take our
   love as for granted as I did back then. I suspect
   my wife doesn't either. I try to show affection
   in some [other] ways more often.


There wasn't the love times when we would
   caress and stuff. I tried to and I could see she
   just lost interest. I miss the sex ... sexual intimacy.
   That was the end of it. I don't want to do
   anything to hurt her, but there are temptations.
   We're all human.


I realized how deeply I do care for this lady.
   I think love is something that we just kind of
   took for granted for fifty some years. Now that
   there's been some deeper consequence to it, I
   can scarcely face up to the fact that I might not
   be her caregiver.


She gets ... kind of in a crabby mood like, well
   not crabby, but not too receptive and she doesn't
   act like she appreciates what I do for her. I know
   really she does, but she just doesn't show it. They
   say people who have strokes have that, but it is
   still not her.


She is pretty ornery and pretty mean. One
   day she went over to the next door neighbor's
   and wanted to whip and kill us both. I had to
   walk out to the car and lock myself in the car.
   She picked up a big rock and threw it at the
   windshield. The police had to come. She was
   never like this.


She grabbed some paper from me and started
   getting really mad. She was five times stronger
   than a normal person. I left her alone in the
   house and went outside, and a neighbor must
   have called the police. The police asked me to
   leave the house for the evening, not because
   they were afraid I was going to hurt her, but
   she could hurt me.


I am probably the most impatient person God
   ever created. And I'm learning to be patient, but
   not patient enough. Not at all 'cause I know her
   condition and I get so impatiently upset with
   her. And that's not her fault. I just need to learn
   ways to be more calm.


A person needs to figure out how to survive as
   a caregiver. They need to have what you call a
   pastor's heart. You need to have a concern not
   for yourself but for the one you're doing the
   caregiving for and other people. It don't develop
   overnight.


The main problem is just before bedtime. At
   5:00, we eat our dinner and then she goes to
   bed right away. I try to get her to bed because
   she don't like TV, and I like to listen to the news.
   That's my two hours a day. That's my time.


At my age, I don't really want to take care of a
   child. And I have to, and that's my frustration.
   And I know that will never change. I feel guilty
   about my thoughts and know that when she is
   gone I will regret every feeling of frustration
   I've had.


I have times when I've been very angry. I don't
   want to spend the rest of my life doing this. I
   don't want to retire like that. I don't want to have
   to do this. But, I realize that this is all I have left
   with her, and then I sob.
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