In our world, we don’t always recognize the multitudes of needs presented by caregivers. Caregivers, regardless of age, relationship, race, gender, and other factors, are Titans that hold the healthcare system on their shoulders. These Titans must call upon emotional strength, managerial abilities, and financial resources to provide care to a spouse, parent, or other loved ones who are chronically ill or who have a severe disability, Alzheimer’s, or another form of dementia.
We must recognize that the burdens of today’s caregiving are acute as needs have increased. The presented list is a small example of what they face and do 365 days, 24/7:
- Managing numerous medications that must be tracked, reminded, and refilled
- Dealing with a small platoon of doctors who needed to be visited, information was tracked on who did what and who ordered laboratory tests, imaging studies, and visits to other specialists.
- Handling pre-, during-, and post-hospitalization tasks
- Managing electronic alert system for falls; setting up aging at-home technology that would monitor the physical health
- Organizing bills, and medical benefits, contacting health insurance companies to fight for procedures, equipment, home care hours, and costs while answering phone calls about loved ones’ needs and overall health.
The caregiver is a round-the-clock mental health therapist, assistant to a physical therapist, driver, schedule manager, translator, banker, medication-and-technology troubleshooter, housekeeper, attendant, and income earner.
In my decade and a half of experience, I saw caregivers’ sensitivity and compassion break down. I saw their pain as they were crushed by the weight of day-to-day tasks they performed for their loved ones and their lives. Given such monumental and challenging responsibilities, I realized they don’t receive as adequate help as they should.
As healthcare professionals, we are witnessing the consequences of sacrifices made every day by caregivers. We must acknowledge that our approach to care has been to sacrifice time now for time later rather than support clients and their caregivers to live their best day today.
We must recognize that even when help was sought, it wasn’t helpful and required so much effort to search and engage with a new home-care agency while the need wasn’t resolved when it should have been. Facing adversity, the caregivers continue to draw their strength by having the courage and resolve to aid their loved ones as they struggle.
The combination of technological and custodial care reinforces fragmentation and the need for more communication among healthcare advisors. These advisors are case managers, care managers, care coordinators, community health workers, patient navigators, and social workers. This army tries to address health and social determinants of health, yet only sometimes makes someone attempt to coordinate the care across the medical and social services continuum and to take some pressure off the caregiver.
The harsh reality is that medical and social work professions don’t engage in dialogue focusing on objectives like being free from pain and discomfort or maintaining mental awareness for as long as possible. Too frequently, a social worker avoids discussing how we make life worth living for disabled and elderly individuals and their caregivers. The care has turned into transactional and episodic care. We provide just another task for the caregiver to resolve.
The caregiver and the social worker should cooperate more as true partners. This partnership needs to be driven not by program timeframes and models but, rather, by the situation and task(s) at hand while recognizing caregivers’ barriers, stress, and burnout levels. The care management agencies must address the person’s needs from start to finish.
Instead, the goals of medical care attempt to correct the abnormality and to cure the disease wherever possible by continuing to carry out medical procedures to extend life. Our priorities should be beyond being safe and living longer.
As professionals, we must be tuned in to what the “best life” means to our clients. For people providing care for family members, the idea of that “best life” can change due to the challenges of caring for an individual with chronic, unpredictable, and lifelong diseases. Yet if we listen to them closer, we learn that they all seek comfort in simple pleasures—companionship, a good night’s sleep, watching a show or game, the taste of good food, going to the gym, reading a book, the warmth of sunlight on their faces. They want to share and make new memories, share keepsakes, and focus on other parts of their relationships with their loved ones.
Our job is to provide essential support for caregivers to take a break, rest, and re-energize. Also, allow the client to receive as much freedom from the devastations of disease as possible and retain enough function for active engagement in the world.
We, as professionals, need to redefine our view on illnesses, aging, disability, and caregiving. Caregivers must redefine their relationships with every care professional and be armed with the right questions to have productive, honest, and open conversations.
One of the most important things to remember is that, regardless of resources, a caregiver needs a support team that is flexible, honest, responsive, and able to ease tasks to allow a caregiver to prosper and create memories with the loved one.
Tips for Empowerment and Wellness for Caregivers:
IT’S YOUR TIME
- If you feel like doctors and/or medical team(s) don’t listen to you and/or your needs aren’t being met, it’s time to change them.
- Bring your top three to five concerns to the doctor(s) and/or medical team’s attention to allow them to address each issue thoroughly in the time allotted. You should request a follow-up visit or call if necessary.
- Enroll in the Portal of the medical practice where your loved one receives medical care to access health information easily.
- Schedule Time for Self on the Calendar, even as little as 15 minutes or as long as going on vacation –Remember You Earn it and Deserve it
Examples of caring for yourself
- Take walks
- Go to the salon or barbershop
- Go to the restaurant, bar, museum, comedy club, etc.
- Get together with friends
- Meditate
- Go shopping and engage in activities that make you happy
- Remember you are at your best when you are rested, looking after your health and needs. Give yourself a daily break to recharge your batteries for compassion, empathy, and love.
Tips for Professionals
- Our job is to enable the well-being of caregivers and clients.
- We can help negotiate anxiety about a loved one’s suffering, pain, finances, care, and safety.
- We need to make time. We need to sit down and allow room for conversation.
- We need to learn about each person’s situation to provide information and advice on the approach that gives them their best chance of achieving it. This process requires as much listening as talking.
- Help create a plan to divide tasks, establish a timeline to complete the tasks, and do check-ins while the issue is being addressed.
- Let the caregivers feel that you are their advocate.
