“Caregiving often calls us to lean into love we didn’t know possible.” (Tia Walker)
For those who provide care to loved ones, this is certainly a true statement. But caregiving also calls on us to be more than we expected of ourselves. Daily responsibilities and the confidence to perform them may weigh heavy on our relationship with the care recipient.
In the first regular post of our series on Caregiving & Relationships, we’re exploring how training can play an important part in family caregiving.
We reached out to experts on education and training for caregivers. Through their insights below, we learn the value of training and its impact on relationships in the family caregiving setting.
Gayle Alston is the Director for the RCI Training Center for Excellence. RCI is part of the Rosalynn Carter Institute for Caregiving at Georgia Southwestern State University.
Sherry L. White, MNSc, RN-BC, is Project Manager at Schmieding Home Caregiver Training at the University of Arkansas for Medical Sciences.
Julie Cherry, LMSW, is the Care Manager for Blakeford At Home.
Caring for a family member or loved one at home brings stress into an environment. How would training for the caregiver help alleviate some of that stress?
Gayle: There is a quote from Lena Horne which says “It isn’t the load that breaks you down, it’s the way you carry it”.
Although family caregiving is a very rewarding experience that most caregivers cherish, it is often demanding and can cause the caregiver extreme physical and emotional distress. Without even noticing, caregivers can become single minded in their care for their loved one resulting in isolation from their usual social contacts and in neglect of their own well-being.
This is not surprising, the person who is ill naturally becomes the center of attention for good reason. However, ongoing care performed sometimes 24/7 will take a toll even on the most hearty of caregivers. Our training seeks to break through the isolation and give the caregivers tools to offset the effects of stress. The training we provide is often the first experience caregivers have with a program focused on them rather than the person for whom they are caring. They learn to recognize the impact the caregiving is having on them, which is the first step in making the changes needed to improve self-care.
Sherry: In my experience, the stress of caregiving is made worse when there is uncertainty, indecision or doubt about how to best care for a loved one. The issue might be something simple such as how to help a family member in and out of the car. Or, it may be more complicated such as managing incontinence or wandering. Training can help alleviate some of this stress by improving the individual’s knowledge of caregiving and their confidence to assist with hands on skills.
Training programs for family members also provide a safe environment where individuals can ask questions about sensitive topics, such as incontinence, without judgment. Often caregivers learn from others in the group who are struggling with similar issues. In one instance I recall an individual who was caring for a family member with dementia. She was extremely stressed out because she believed the best thing to do was to continually reorient her loved one.
This effort, although well intentioned, was misdirected and only served to increase her frustration and emotional upset, it was also upsetting to the care recipient. Once the family member learned about the underlying health condition and root of the behavior she stopped trying to change it. The women’s frustration was lessened and the training helped her learn alternative ways to respond to her loved ones behaviors. The information in the class also empowered her to ask for help from other family members and showed her how to plan more positive activities with her loved one.
Julie: The stress of caregiving is always going to be a constant, even on the best of days. If a family member is open to education about the disease process and techniques to better care for their loved one, the stress can be more manageable. Education and training can alleviate stress by making the caregiving process safer, more efficient, and less taxing.
What do you see as being the greatest area(s) where training would help a non-clinical caregiver on a daily basis?
Gayle: I do see a need for caregivers to receive the hands on training such as how to safely transfer the care recipient, how to monitor a variety of issues and respond appropriately. However, training in self-care so they can continue to provide care in a loving way for the long term is of equal importance – stress management techniques, monitoring and managing their own health issues, and reducing isolation and adding fun and relaxation back into their lives.
Sherry: I believe training in communication can have the most significant impact. When family caregivers can improve or strengthen their communication skills, even incremental changes can make a huge difference in the person’s long term quality of care. Caregivers who learn to communicate effectively are more confident to ask questions of healthcare professionals, more inclined to seek out resources and are often better prepared to express their needs and feelings. The ability to communicate effectively can improve relations between the caregiver and healthcare provider, which is extremely beneficial and can also improve dialogue among family members and with the person needing care. In my experience, caregivers who can communicate well are more inclined to share information with other family members, ask for help when needed and more likely to act on their intuition and report changes in condition.
Julie: Safety for the one being cared for as well as safety for the one doing the care is extremely important. The day to day functions of knowing proper ways to transfer from chair to bed, how to give a bed bath, and even how to change linens is essential. Obviously, training in how to use a hoyier lift, dealing with body fluids, proper glove usage, and how to use a gait belt contribute to a safe environment.
How does training a family caregiver impact the person receiving care? The rest of the family?
Gayle: Care recipients are often concerned about the toll the caregiving takes on their loved one. When they see them exhausted and even irritable, it can cause them a great deal of distress. When the caregiver has the support they need and is confident in their ability to provide care, everyone benefits.
RCI provides training programs that are all evidence based, meaning there is data to support the changes we see in the lives of the caregivers. Caregiver burden and caregiver depression are substantially reduced which usually presents itself as a relief to both the caregiver and the care recipient. It is our hope to help caregivers create more of the good memories with their loved ones, rather than memories of exhaustion and lost patience.
Sherry: Training a family caregiver has a number of positive impacts on the person receiving care. I believe the most significant impact is on how training improves the family member’s ability to advocate for their loved one and provide appropriate supportive care. For example, a family member caring for an older adult in the home who takes a caregiver class receives information on nutrition and hydration. Because of this training, the family caregiver now understands the importance of offering fluids throughout the day. The person being cared for gets plenty of fluids and is less likely to experience constipation, impaction or be hospitalized for dehydration. In this situation, training the caregiver reduces the likelihood of hospitalization, lowers the costs of care and significantly improves the care recipient’s quality of life.
In my experience, caregiver training has a trickle down effect within the family unit. Caregivers who attend training are more inclined to follow care plan instructions. They also tend to be more confident advocating for their loved ones. When consistent supportive care measures are provided chronic health conditions tend to more stable. Care recipients are less likely to require recurrent hospitalizations. When transitions between settings are minimized there is less disruption to the family, therefore less stress on the family unit. Practically speaking, family caregivers who receive training are also more inclined to practice good self-care, use respite services, and share caregiving responsibilities among extended family members. When extended family members are involved in care, they have a better understanding of the underlying health issues, more realistic expectations regarding long term goals of treatment and they are more understanding about what can be done.
Julie: Caregivers need to know about the disease process. That means they understand what and why they are seeing in that process. They need to know what is normal and not normal. They need to know what the path ahead of them is going to look like so they can best plan. When the caregiver begins to grasp the fears and hopes of their loved one they will better be able to care for them.
Much appreciation to Gayle, Sherry, and Julie for sharing their expertise with us. We hope that provides hope and some guidance for you in your journey.
Interested in learning more about education and training for family caregivers? Check out these resources.
Online Webinars and Workshops
Family Caregiver Alliance
U.S. Dept. of Veteran Affairs
Alzheimer’s Association
The Caregiver Action Network
Read the rest of our Caregiving & Relationships posts.
Setting Boundaries
Coping with Guilt
Hiring a Professional Caregiver