Respite Care | Clearing the Hurdles for Caregivers
Updated: Apr 10, 2018
In any field of work, an individual can and will experience burn out if ample care is not taken for one's self. With the emotional and physical demands of caregiving, this need can often feel overwhelming. Family caregiving, for example, adds a deeply emotional level to activities that would be taxing even without the strong bonds of family intimacy. Living arrangements can further amplify the need for respite care due to a lack of physical (and emotional) space. While loving someone enough to provide personal care for them can make daily service seem like anything but work, the reality is that even the closest relationships will benefit from a degree of space and respite. Strategies to create self-care opportunities are vital to being the best caregiver you can be.
Hurdle #1: A sense of guilt
For some, a sense of guilt for 'leaving' an individual who relies on them for daily assistance can provide a significant barrier to finding or utilizing respite assistance. But there are times when this is unavoidable, and those times are good opportunities for exploring respite options. For example, if you need to renew your driver's license, go to a doctor's appointment, or run any other type of errand that demands time away, consider how you approach these times to arrange for caregiving. Would the solution you use for these circumstances also work to provide other breaks as needed? How does the individual you care for cope during these times? Does he/she enjoy themselves with you away? It may be a difficult question to ask at times, but they too may like a change or a break, as hard as that may be to believe, even from you. Do you have a neighbor or friend whom you can trust to provide quality care, is this something that they enjoy and would like to do for longer periods of time? Each situation is unique but consider starting small for these times apart if necessary to alleviate the feelings of guilt and see how things go. You may be surprised to find that respite periods can enhance the care that you give and the perspective and appreciation you have when you return.
Hurdle #2: No one provides the quality of care I can
This is likely a true statement, but consider opportunities for growth and independence for your loved one. Many day centers and other respite options, for example, provide opportunities for peer support and interaction. Being among people that are experiencing the same struggles, and life stages, can be of the utmost benefit to persons with disabilities and those who are aging. While you care for them as much as anyone, your shared experiences are from a caregiver perspective and cannot provide the same type of bond that often exists between individuals who experience life from a shared perspective. If your concern for their care exceeds these potential benefits, begin keeping an eye out for someone who you do believe could provide a level of care that you are comfortable with, whether that's a family member, a friend, or a professional.
Hurdle #3: I don't have time to find a respite solution or know how
Taking the first step and reaching out to a respite provider is all that it takes to begin the process of finding the right solution. This can be done with a simple Google search. Depending on the level of care needed and the ability to pay for services, options can vary greatly in duration, location (in the home or at a facility), and cost. Volunteer organizations, friends, and family assistance, may come at no cost. Insurance may cover services to provide respite care, whether or not they are termed 'respite care'. For example, Consumer Directed Services such as those provided by Access Personal Care, LLC, allow the consumer to select the caregiver(s) of their choice. So, if an individual has a qualifying disability and is on Medicaid, not only would a person of their choice be paid to care for them, you too could be compensated for much of your time. There are many out-of-pocket options as well, and remember, you are far from the first person to have this need. Providers should be prepared to help with planning, checking insurance coverage, and generally assisting with determining whether or not they can meet the individual's needs. It may be that you don't have enough time to find a respite solution but in that case you can't afford not to begin looking, as respite care is likely to make your life much more manageable.
Hurdle #4: How do I know what to expect from these services?
You don't have to. If you are unsure of the quality of a service, you may want to be present with the individual for the first visit. If the individual is capable of making his or her own decisions, deferring to them to judge the quality of their care provides a greater level of independence that they would be entitled to as their own decision-maker.
Hurdle #5: What would I do?
While this may seem laughable, and in many cases it may be, it's important to think about respite options even if you don't have a burning desire to participate in a lot of independent activities. Part of the reason may be that it is a new concept to you since becoming a caregiver, but whatever the reason, stepping back from your work is important to see the larger picture, to provide perspective.
Hurdle #6: Listen to the individual you care for
Is he or she expressing frustration at your constant presence? Is there a sense of guilt, from their perspective, that they too often monopolize your time? Are they sometimes frustrated that you help too much and that they could do some things for themselves? While some may never want a break from their caregiver, many will and yet may hesitate to express their feelings for fear of hurting yours. Be sure to listen and ask if necessary. If there is concern for either or both of you in pursuing respite options, take small steps but be sure to consider the many benefits of respite care.