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En español | Ask a round-the-clock family caregiver how many breaks she takes, and the answer is usually “not many” or, even worse, “none.” We know that time away from our caregiving roles is absolutely necessary. And yet it's easier said than done.
In the absence of a strong team of co-caregivers, respite care is invaluable. Respite care is temporary substitute assistance that allows family caregivers to step away from their duties for a bit; they can be relieved for a few hours, a full day or overnight, or a stint of days or weeks. Despite the relief, for many caregivers there may be barriers or personal resistance to using this all too important resource.
It took a total physical burnout for me to accept respite help for my mother. She was physically fragile, recovering from brain surgery and intensive chemotherapy and radiation. I wouldn't, and couldn't, leave her. My fear of her having a medical complication or even passing away in my absence kept my thoughts rooted in the mind-set that no one can do what I do.
The reality was that calling in respite care helped me do even better. A cobbled-together network of hospice aides, a home health agency and a private caregiver gave me more time to manage my mom's medical plan and day-to-day household needs, my job and the opportunity to step away from the grind to see my husband and get a bit more rest. Without exaggeration, respite care spared me a mental breakdown.
Did I learn my lesson the first time? Not at all! Recently, my husband was physically incapacitated — 100 percent unable to walk, stand or even sit up. He was sent home from the hospital with the instructions: “Do not try to get out of bed for at least a month, probably more.”
Suddenly, we were down a set of extremely necessary hands in our house. We had a toddler, and I had just opened a law firm. Again, thrust unexpectedly into a 24-hour caregiving role, I went about it with that same mind-set. I can handle all of this, I thought. No one can do what I do!
That is, until my back went out and I needed to seek my own medical attention. By literally crawling to my phone, I texted a friend and said, “I'm going to need some help.” And again, respite caregivers saved my sanity and made the following months manageable.
We, as a nation of caregivers, are reckoning with the fact that we can't devote ourselves completely to caregiving and expect to maintain our lives outside of it. Jobs, personal relationships, social and community connections, financial security, our physical and mental health, and so much more suffer. And the headlines are screaming: There is no way we can make this work without more support.
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Our lawmakers are beginning to listen. There is movement in our state and federal governments to continue respite care programs and grow them for the future. In the meantime, until the call for better support is answered, here are ways to prepare yourself to tap into respite care if the need arises:
Create a game plan
Plan for respite care, mentally, emotionally and financially: We do not know when or how caregiving will become a part of our life. Yet it is almost certain that it will someday. Considering that we, or our loved one, will have to be left in another's care can be painful to contemplate. So can the thought that you will not receive enough help from family members who could pitch in to provide respite. And the cost cannot be ignored. Respite care is expensive (a home health aide is estimated to cost $4,195 per month). Advanced discussions with family members about division of caregiving responsibilities and the cost of respite care may limit future conflict and confusion. Attorneys, insurance agents, counselors or financial planners can assist you with budgeting and moving past emotional barriers to using it.
Be specific when asking for and giving help
If you are not the caregiving lead, offer to assist whenever possible. “Tell me if there's anything I can do!” is the cheery but not specific offer caregivers sometimes hear. Instead try: “I will come over tomorrow and be with your loved one so you can take a break.” (Understand that medical needs may exist, but even a half an hour to take a walk or a drive is a blessed opportunity for a caregiver.) Also, consider setting up a time-sharing cooperative or volunteer-based group in your community or a faith-based organization if one does not exist.
Research your options
Know the options for respite care and ways payment can be covered: Look into your state's respite coalitions and life-span respite programs. Go through your area agency on aging and eldercare locator to see nearby options. Learn about private and public benefit possibilities and estimated costs. You or your loved one may qualify for low- to no-cost programs. Your employer may even offer respite care as part of your employee assistance program or benefits package.
Continue to evolve care plans
Use some of your available respite time to call family or care team meetings and to adapt your plan of action. What we know about caregiving is that needs are subject to change. Conditions may improve or deteriorate over time (such as in the case of Alzheimer's disease, in which 24-hour-a-day care should be anticipated for the more severe stages). Although we can't predict all possible outcomes, we can take some of our needed break time to help us plan ahead.
The benefits of respite care can't be overstated. Overcoming resistance to its use and obstacles to its availability may be difficult. But there is hope for the future, and progress is being made in offering caregivers more access to respite. For my part, I commit to offering it, where I can, to other caregivers. And I hope that the next time caregiving comes calling, I won't wait so long to ask for help.
Amanda Singleton is a recipient of CareGiving.com's national Caregiving Visionary Award and serves caregivers across their life span through her law practice. Follow her on Twitter @singletonlegal and on Facebook.