Managing Caregiving Impact
Once the immediate crisis is over, the need for long-term financial planning becomes a reality. Most medical expenses are not covered by insurance; instead, they are out-of-pocket costs. How can you sustain that long term? Where are you regarding insurance? Does private insurance still cover you, or do you need to look at disability, Medicare, or Medicaid? Should you consider establishing a trust to secure your assets for the future? Maybe it’s time for a financial advisor?
If recovery from a medical condition is not going to occur, but instead the condition is going to become progressively worse or remain at the current level long term, the caregiver, care receiver and others committed to the support of this team need to look at the long-term ability of the caregiver to maintain the current level of care. Options for current and long-term care need to be discussed, as well as potential creative approaches to utilizing others to support the team in delivering care.
Caregiving impacts all the relationships a caregiver has because it changes the caregiver. The most significant relationship that changes is the one between the caregiver and the care recipient. The dynamics between the two of them may never be the same again, and it takes tremendous effort to maintain the previous terms of a relationship and prevent the caregiver role from completely overshadowing the other role. The multiple roles and how relationships can be affected, as well as the potential impact, are explored in these posts.
Due to financial necessity, many caregivers attempt to work outside the home, either full-time or part-time, in addition to their caregiving responsibilities. The Family Medical Leave Act provides some support, allowing employees to take time off to attend medical appointments and care for their family members. Still, it doesn’t meet the needs of most caregivers providing care to patients with complex care requirements. While the Americans with Disabilities Act supports individuals with disabilities, it doesn’t go far enough in protecting their caregivers.
Work is not a haven for caregivers, although for many, it’s a place of escape that they long to maintain, where they can avoid the demands of caregiving. “Work” explores the laws, challenges, and opportunities associated with trying to keep a work/life balance while caregiving.
Finding peace and a sense of comfort during a time of crisis can be difficult. Studies have found what many of us who have faith in God already know, that those with faith have an inner strength that supports them during a crisis. It’s just there, underneath the pain. Sometimes, you can’t feel it, but it keeps you from falling apart completely, and it helps you to keep moving forward.
When a person feels out of control, knowing there is a power greater than themselves, they can turn to it for courage and hope, which helps give peace. Both research on how faith can help in a crisis and passages from the Bible that have helped the author during the difficult times she has experienced are provided in this section.
Caregiving is physically demanding. If providing care directly, the caregiver may be lifting and moving repeatedly, wearing out muscles and joints before they would normally experience such use. Often, caregivers lose sleep and maintain a schedule of no more than five hours of sleep per night. Nutrition suffers when meals are eaten on the run, and fast food or snacks with high energy content become the go-to choice when desperation calls. Days or weeks in the hospital cause significant weight gain if the caregiver stays with the care receiver and eats the hospital’s options for visitors for each meal. Choices are usually high in calories and come in large portions. Additionally, with no way to store leftovers, the caregiver either eats it or it spoils. None of these factors promotes a healthy lifestyle, eventually leading to the caregiver’s own declining health. Many times, caregivers die before the care receiver as a result.
Caregiver emotions are complex and varied. They experience every feeling from joy to sorrow, anger to regret, guilt to gratitude, jealousy to blessing, and everything in between. They rarely have time to deal with any feelings and are so overwhelmed by them that many caregivers begin to ignore or suppress almost all emotions to survive. They don’t have time to cope with them; it’s easier not to feel. Therefore, between extreme physical exhaustion and emotional overload, the caregivers develop caregiver fatigue, a type of numbness that drags them down. After weeks of fatigue, it becomes worse, and they develop caregiver burnout. With burnout, they no longer care. They feel nothing, care about nothing, they just exist, putting one foot in front of the other to survive.
