1. Pierce, Linda L. PhD, MSN, RN, CRRN, FAAN
  2. Steiner, Victoria PhD

Article Content

Q: How can I help caregivers of persons with stroke better adapt to their new role?


As a registered nurse and a psychologist with a combined total of over 50 years of experience, we work with stroke family caregivers new to the caregiver role in face-to-face and online support groups. As support group providers, we believe the lack of training or education received by these new caregivers often leads to a preponderance of challenges or problems. As group facilitators, we learned of the day-by-day struggles in caring for stroke family members. Although not research, we "listened" to these caregivers' problems and most importantly how they solved those problems while caring. We will share and reflect on their accounts of solutions to their problems from our notes and journal entries, as well as caregivers' electronic messages, so that home healthcare clinicians can learn more about the unique needs of caregivers.


Caregivers dealt with the problem of being frustrated in day-to-day situations and their solution was getting life in order through changing behaviors/altering environment. Caregivers identified solutions, such as adjusting behavior or the environment by establishing new routines. For example, caregiver John (each caregiver's name is fictitious) reported, "Dressing [his wife] is a continual struggle so daughters bought some sports bras without hooks; that has helped quite a bit." Other caregivers also identified changes in responsibilities, organizational practices, lifestyle, and the interpersonal relationship with their care recipient. Caregiver Sharon stated, "I give my husband one hour to do what he wants, one hour to do what I want, and then one hour to do something together." Many caregivers reported lifestyle changes poststroke for activities such as making a list of the day's events, and/or lists of medications. Some caregivers reported taking over new responsibilities previously held by stroke survivors, such as driving, yard work, or finances.


Another solution that caregivers used was hanging on to what they had. Caregivers, although frustrated with caring, reported doing everything in their power to attempt to achieve a new life as close as possible to what had been their life. Their solution was to resume prior activities before the stroke event. Caregiver Steve stated, "We went to the flower show as we used to" and Robert noted, "I let my father drive the car on short trips which I think helps his disposition because it gives him a better sense of some independence." We noticed that caregivers attended parties, went to restaurants, or on vacations that they enjoyed before the stroke happened. However, now they telephoned or went online before the outing to make sure buildings and/or car parking were accessible. This solution was to do as much as possible in new proactive ways to get back to how it was before the stroke event. Returning to previous activities represented a way to feel that their lives were returning to an even keel.


Another problem built on caregivers being frustrated in day-to-day situations where they were feeling inadequate, and turning to others for help. Caregivers' solutions involved seeking medical advice or treatment. They described interactions they had with physicians or assistants; nurses; physical, occupational, and speech therapists; and social workers, as well as searching the Internet in trying to understand more about day-to-day care for the stroke survivor. Margaret, an older caregiver who sought help with her husband's pain management stated, "the physical therapist said that if I give him a warm shower before bed it will help with pain and discomfort at night and help him to sleep." Caregiver Ed revealed that he "felt relieved, when he found out from the doctor and nurse that it was normal for her [wife] to go through moody, nasty, and disrespectful behavior... no one had told me that before...and I searched the web for more information."


One more solution to this problem of frustration and inadequacy was reaching out to others/community resources. Exemplars of reaching out to others include remarks from Alice who said, "I have friends and family around and they've been able to come and stay with mom," and from Helen, "I have asked my husband's daughters to help out one weekend day per month so that I can have some time alone and time to spend with my son." Others sought services, for example, Social Security, adult daycare, and clergy. Caregivers called on not only family but also friends and neighbors in an effort to decrease the feelings of inadequacy that they felt in their caregiving role.


The last problem that caregivers dealt with was struggling and looking for "normal" in caring. Caregivers' solution was psychologically accepting a new normal. Caregivers identified that acceptance had to happen and was unavoidable. Over and over caregivers said they had to do it; there really was not any choice. Caregiver Ken said, "I have resigned myself to the fact that my wife's memory may never improve." In addition to accepting their new normal, caregivers also reported accepting their situation through small victories and a realization that only a finite amount of tasks are accomplished. "I have to realize the things I do get accomplished and give myself credit for what I do," said caregiver Scott. With other caregivers reporting they have to remind themselves that not everything has to get done, and that they try to focus on things that have improved instead of the negative. They found the positive in their situations and as their roles shifted; new caregivers came to terms with the way their lifestyles changed and reconciled their ability to influence their situation. Caregiver Mark shared, "as a result of having had to go through the stroke, maybe we're learning to enjoy life more. We're not thinking heavy duty about the future; we're just enjoying the present." They learned to set goals through therapy and support groups, demonstrating solutions of measured action and appreciation for their role and abilities.


Another solution that caregivers identified was taking time for self as a way to solve problems associated with caring. Caregivers identified simple tasks and activities. Patricia said, "I try to play bridge on every Monday afternoon to give myself a break." Caregiver Jerry reported, "When I have a few minutes to myself, I just sit or play a game on the computer... other things will wait, I have to give myself something." Health for these caregivers was important. Susan noted that, "his [husband] stroke and the caregiving situation have changed my outlook on life. It has made me become more conscious of my own health such as diet." Through these solutions to their problems, caregivers tried to find a "normal" life again in caring.



What we learned over the years of providing needed guidance and support through support group services and by listening, is that stroke family caregivers try solutions to adjust/manage numerous problems in caring, preserving their lives and family system. Although support providers and home healthcare clinicians teach these new caregivers how to solve problems that arise in caring, they can also learn from these caregivers and share with others their solutions that helped them adapt to their new role. Caregivers can teach us a lot!