Caregiving is tough! There are physical, emotional, and spiritual challenges. When one is caring for someone with a prolonged and progressive illness such as dementia, the challenges are magnified. Despite the hardships and sacrifice, there can be blessings in the service. The exemplary physician and philosopher Albert Schweitzer summarized this thought well: “I don’t know what your destiny will be, but one thing I do know: the only ones among you who will be really happy are those who have sought and found how to serve.”
The term “informal caregiver” defines the role of a loving friend or family member who takes on the unpaid responsibility for providing care and support to another person. The care provided may be full time or part time; in some cases, it can extend for years. The care receiver might be a child with special needs, spouse, sibling, parent, or dear friend. It is increasingly common for family members to assume the caregiver role for an elderly spouse or an aging parent. Estimates now place the number of such folks in the U.S. well over 60 million.
Often, caregivers step into roles providing skilled medical care with little to no training. Medication management, pain management, wound care, injections, catheter care, adjustments of supplemental oxygen, and treatment of symptoms ranging from anxiety and nausea to constipation and insomnia are common tasks for caregivers of chronically ill adults. It’s on-the-job training, and it can be frightening, as well as emotionally and physically draining. Increased stress and exhaustion are common in caregivers. If care receivers still have their wits about them, they too are stressed by acknowledging the burden they impose on their families and friends.
The physical demands of caregiving can be challenging and can even lead to injuries. My Mom ruptured discs in her low back helping my arthritic Dad in and out of bed, as his own strength and function declined. Because caregivers often have persistently elevated levels of stress hormones, they are at increased risk for high blood pressure, diabetes, some infections, and other illnesses associated with decreased immune function. Sleep deprivation is common in caregivers, as needs don’t end when the sun goes down.
Caregiving takes a psychological toll. As well as sleep deprivation, caregivers can become depressed, and chronically anxious as they dutifully devote large blocks of their own lives to the role. They can become isolated from friends, from hobbies, and from nurturing social outlets.
Lost wages and even lost jobs can be financial costs of caregiving. Additionally, people frequently make home modifications, purchase expensive medicines, and seek treatments and support that may not be covered by any health insurance benefit. As savings dwindle and paid jobs are lost, bankruptcy rates increase among long-term caregivers.
So, the demands of caregiving are numerous and significant. Is there help for weary, overextended caregivers? I’ve found a couple of important resources as well as a few tips I’d like to share.
In 2000, the U.S. Administration on Aging created the National Family Caregiver Support Program. This program provides information about available services; help in gaining access to services; counseling, support groups and training; and respite care. Use this agency’s Eldercare Locator to find local programs and resources.
Remember to ask for Palliative Care consultations as serious symptoms degrade quality of life for your loved one. Make sure important legal documents such as Power of Attorney, Health Care Proxy, and Living Wills are completed and current.
If you’re employed, make sure you take full advantage of your own paid family leave policies. If you need to take time off, know your rights. Under the Family and Medical Leave Act, if your company has 50 or more workers and you’ve been on the job for at least a year, you’re entitled to 12 weeks of unpaid leave to take care of a family member.
Another great online resource is AARP’s caregiving resource center. You can access it at: http://www.aarp.org/home-family/caregiving/. In a 2014 article written for AARP, Elaine Ryan collected and summarized tips on caregiving from caregivers themselves. Among the top 10 tips were: trust your instincts, keep a sense of humor, and get organized. The latter tip seems especially important as the complexities of modern medical care escalate each year.
Create a medical binder to include important phone numbers, medication lists, allergies, ongoing health issues, insurance information, and any relevant legal documents. Since I know you have a computer to be reading this article, you might want to create an electronic folder for such information and place it on a flash drive as well; it can be quickly shared with friends, relatives, and healthcare providers alike.
Remember to contact organizations specific to your loved one’s illness, such as the American Cancer Association, American Diabetes Association, and your local chapter of the Alzheimer’s Association. They provide many caregiving tips and can link you to support groups with other caregivers who share your challenges.
Reach out to friends, other family members and your faith communities. What may seem to you an obvious need for help and additional support often requires a heart-felt request to spur others’ action. Such requests, as well as carved-out time for rest and rejuvenation, are vital ingredients for all caregivers. They are key aspects of self-care.
Before closing, I want to share an excerpt from Rachel Naomi Remen’s powerful article, “In the Service of Life.” Remen reminds us of the crucial distinctions between fixing, helping and serving, as we assume caregiver roles:
Service rests on the basic premise that the nature of life is sacred, that life is a holy mystery, which has an unknown purpose. When we serve, we know that we belong to life and to that purpose. Fundamentally, helping, fixing, and service are ways of seeing life. When you help you see life as weak, when you fix, you see life as broken. When you serve, you see life as whole. From the perspective of service, we are all connected. All suffering is like my suffering and all joy is like my joy. The impulse to serve emerges naturally and inevitably from this way of seeing.
Lastly, fixing and helping is the basis of curing, but not of healing. In 40 years of chronic illness I have been helped by many people and fixed by a great many others who did not recognize my wholeness. All that fixing and helping left me wounded in some important and fundamental ways. Only service heals.
Though there may be few alternatives available when we assume the roles of unpaid caregivers, we do so because we have a loving connection to the individuals in need. Ultimately, we become caregivers because we care.
There are struggles and mighty challenges to be sure. Yet, as Art Ulene eloquently stated in his acceptance of the NAMC Lifetime Achievement Award in 2006, “Never forget: The most valuable things in life are your family, your friends, your health, your reputation and the things you have done for others. All the rest is background music.”
S.L. Hines, MD
August 2016
