Use Relational Systems to Support Caregiving
Climbing the ladder, the ladder of success, start on the bottom rung of the ladder, getting a foot on the ladder. There is no end to the popular expressions of success in reaching a goal. It’s a symbol of rising to the challenge to prove you have the strength, endurance, flexibility and skills to reach the top in a hierarchical structure. It’s a very alluring image. These are ingrained descriptions of how people and organizations operate starting from ancient times. In fact, organizational structure operates not just among humans, there are also many species that organize themselves in a similar ways. It’s one way, but not the only way.
What does this have to do with caregiving? Caregivers climb a ladder of experience that they can add to with training and education, guidance, and assistance from workers in a variety of disciplines. They can become experts in the care of their loved one, yet they will need the help of others in the long run.
Caregivers gain experience through all their past experiences of care: giving, receiving and sharing responsibilities beginning in their family, in schools, in employment situations and in creating and partaking of family and friend interactions throughout life. Caregiving is role and responsibility with specific needs and expertise. The primary caregiver initiates the caregiving for an individual.
What is a primary caregiver?
The primary caregiver is the person who manages an older adult’s daily and weekly care. The role reflects the specific needs of the individual and carries responsibility for providing personal care with compassion. They may assist with the everyday activities of daily living such as bathing, dressing, and eating. Beyond the basic needs, a primary caregiver attends to the tasks of care while supporting the older adult’s participation in their own care.
They may step in as needed to provide additional management of activities necessary for living independently as an adult, such as monitoring and addressing medications needs, food preparation and household cleaning, providing transportation and attending to finances. The care partnership that evolves supports the older adult’s physical and emotional quality of life.
What do primary caregivers typically do?
When adults need help to sustain these needs, a primary caregiver steps in. This can be a family member, often referred to as an informal caregiver, or a formal, paid professional caregiver. There may be a Care Plan in place where the responsibilities, duties and expectations are laid out, subject to change as new needs arise. Primary caregivers are focused on providing the best care needed by their care recipient.
For family caregivers the role carries a wider scope with concerns well beyond the basics. Managing care may involve both the physical needs of the individual and the emotional, relational needs for both caregiver and care recipient. The extent of the duties of a primary caregiver are part of the continuum of care needs.
Caregiving for a family member, most often a voluntary labor of love, may also be interpreted as an expectation, an obligation or a necessity. For family, the role comes with an emotional component for both the carer and the care recipient, who form a care partnership. The combination of tasks, needs, wants and concerns are demanding.
Primary caregiving requires thoughtful time management to account for caregiver needs, tasks of caregiving and the care partnership. It is a challenge to maintain a sense of personal identity while caregiving. Sustaining a care partnership over time creates a need for flexibility to accept the imbalances of attention to one’s own needs against the needs of the care partner. As a primary caregiver, you may seek help from a range of professionals to maintain your physical and emotional strength and endurance, and to give the best care to your care partner.
(Managing the caregiver emotional needs alongside the needs at all phases of the care plan are addressed in depth in our book co-written by Claire Mauro and Diane Simoni, For Grief’s Sake: The Resilient Caregiver Caring and Coping Well.)
The cultural web theory of organization gaining prominence in the 1990s is a relational system approach. Caregivers utilize this web structure as they begin their caregiving by drawing on other like-minded family members and friends. Similarly, organizations that can articulate a strong brand, when employee duties and responsibilities are made clear and the interactions are harmonious, allow various team members to work well together to meet their group goals and the overall organization goals. Organizations recognize they need to evolve to retain employees at peak performance and their cultural web contributes to the success of these goals. Caregivers do too.
Caregiving is also a community you can draw on to obtain the cooperation, skills and experience to achieve your caregiver goals. Building upon your friendships and family members and drawing on the shared caregiving experiences of others you already have a community full of referrals and solutions. Your caregiving resources extent out from you as a caregiver in a web of multiple directions and intersections.
Among caregivers the primary goal is the best care possible for a loved one- your own or someone else’s loved one. Older adult populations have been growing and the needs for care and caregivers are growing too. How do you attend to the tasks of care which involve navigating networks of care providers?
Also in the 1990s, personal online networks evolved to attract people with the similar affinity to form social groups, exchange employment opportunities, and share information. Organizations recognized networks as a prime means of obtaining the best employees. It’s one of the most important uses of social networks- where employees can showcase their skills, develop interpersonal relationships among organizations and find their niche within specialty services. Caregivers can use networks to find secondary caregivers who are a good fit with their care partners.
Families today also need to evolve around caregiving needs, to continually readjust the way they meet those needs in response to change.
Primary vs secondary caregiver: What’s the difference?
Secondary caregivers are a supportive part of the caregiving system. They can be formal, paid professional caregivers and may also be close family members, extended family, friends and others.
Primary caregivers on call at close quarters may find the demands of the role escalate at critical moments or over time. Being prepared to call on trusted auxiliary caregivers to step in is part of a Care Plan, so the primary caregiver can rest and attend to their personal needs and responsibilities, knowing their care partner’s need are being met.
Secondary caregivers can also assist the primary caregiver by taking on the additional activities of daily living. By providing shopping, cooking, transportation and friendly interactions with the care recipient, secondary caregivers may become essential when care needs extend to a new phase of caregiving.
Ideally, whether they are formal, paid caregivers or voluntary caregivers, primary and secondary caregivers “cooperate and organize together to utilize the best of each other” * in service to the care partner. (*as we discuss in the Phases of Care in our book For Grief’s Sake: The Resilient Caregiver Caring and Coping Well)
Formal, paid professional caregivers also grapple with similar relational components of the role, extending to dealing with interested parties beyond their primary care recipient. They are delivering care while interacting with employers, family members, friends and others concerned for the care recipient. The role requires specific skills and knowledge applied with compassion.
What are the benefits of being a primary caregiver?
Being the primary caregiver means getting in on the ground floor. When taking on the tasks of care you are building a routine of care for yourself and your care partner. As the term “care partner” implies, you are determining the extent of needs and how to address them together, whenever possible. This can be a very satisfying and rewarding process that respects the abilities of each person. Regardless of the ability of care recipient to participate in choices and decisions related to their care, the care relationship can be a source of strength and allow for extended home care. It can provide the primary caregiver with personal satisfaction, a sense of enhanced self-worth and a purpose.
What are the challenges of being a primary caregiver/where to find support?
Recognizing the limits of your ability to care is a necessary part of the primary caregiver role. Even with a Care Plan in place for all the phases of care, changes in the caregiving the situation may evolve in unanticipated directions with unexpected new needs. You may feel caught off guard about what’s happening and how the situation is changing faster than you anticipated. You may have arrived at a phase of care you thought was still further ahead. Feeling unprepared or overwhelmed, even feeling inadequate, is not a deficiency, it’s an inevitable part of caregiving.
Everyone has their limits and it’s not uncommon for caregiving needs to test those limits. You may be very invested in the role and be reluctant to ask for help. Caregivers may find it difficult to recognize their need for support. They may feel guilty or disappointed in themselves when confronted with changing needs that are outside their control. If they do seek secondary caregivers, they may have mixed emotions about sharing the role. These are very understandable responses to the changing the parameters of care.
There are many options for building on existing primary caregiver skills. Caregiver resources are available offering workshops and courses for non-professional caregivers. These include basic first aid courses and caregiver programs to address care skills like maintaining hygiene, recognizing health issues, wound care, how to use adaptive equipment and when to consult medical professionals for further guidance.
In our book we recommend first exploring your local caregiving resources. These can be found through “The Family Caregiver Support Program.” Locating the Family Caregiver Support Program (FCSP) near you, call toll free the Elder Care Locator 1-800-677-1116. This number is available from Monday through Friday 9 AM-8 PM (except U.S. federal holidays) or website: https://eldercare.acl.gov/Public/Index.aspx .”
Consulting this resource and others may serve to reassure you about your decision to seek help for the challenges of care. To ensure your confidence in and satisfaction with formal caregiver support, you will want to verify that procedures verifying the background and references of the caregiver are in order and the legal aspects of employer and employee are mutually agreed.
Turning to paid, skilled caregivers for your loved one doesn’t mean you are surrendering your involvement. The health and safety of your loved one/care partner understandably remains your primary concern. You will want to be certain you are choosing the caregiver with the best combination of skills and compatibility for yourself and your loved one. If you hire caregiver on a trial basis, you have an opportunity to clearly communicate your expectations and assess the potential for your loved one to trust the caregiver and receive the level of care their needs require. Maintaining good communication between your family and your caregiver through updates and regular re-assessment of needs and services will continue to be essential.
Getting help with caregiving is very positive action to take because you will be insuring you are available at your best when caregiving and that your loved one receives the highest level of care. And you may discover benefits to your relationship with your secondary caregiver. You will have more time for the overall decision-making of care and develop the positive communication skills to comfortably move into a shared role.
Caregivers need the flexibility, endurance and strength to navigate the interlocking roles and responsibilities of caregiving. In caregiving we say, “Don’t reinvent the wheel.” Others have gone before you and faced the challenges of caregiving. You can draw on that base of knowledge to help you deliver the care your loved one needs. Today’ s caregivers can draw upon entire ecosystems of professionals within caregiving- relational systems of biopsychosocialspiritual specialties addressing caregiver/care partner needs ranging from medical care by geriatrics specialist doctors and nurses to therapists and allied health professionals with a gerontology specialty. All these professionals interact together for effective care and care management to meet the needs of caregivers and care partners. Caregiving extends from the physical care to the mental health, and spiritual care of ourselves and our loved one. How we live our lives is how we care for others.
It will take family, friends, community resources, medical and health care systems, mental health organizations and social service agencies and domestic workers, supplies of food, goods and services at every level to meet the needs of family caregiving for the aged members of society.
*Portions of this essay may appear elsewhere e.g.see also https://www.care.com/c/what-is-a-primary-caregiver/
References
Caring in the Information Age: Personal Online Networks to Improve Caregiver Support
https://pmc.ncbi.nlm.nih.gov/articles/PMC5495540/#sec6
The Cultural Web https://www.mindtools.com/a8im94b/the-cultural-web
From Care Coordination to Ecosystems of Care
https://www.healthaffairs.org/content/forefront/care-coordination-ecosystems-care
Hey Managers, If Your Organizational Culture is a Web, are You the Spider or the Fly?
https://www.debbiedougherty.com/post/organizational-culture-web-spider-fly
Mauro, C. and Simoni, D., “For Grief’s Sake The Resilient Caregiver Caring and Coping Well.” Amazon. 2024.