Caring for someone is an act of love. With the rapid aging of our population, it is a role that will touch all of our lives like no other social issue yet. Because we are all living longer, the caregiving years can last up to 20 years or more. It is not uncommon these days to encounter caregivers in their early 80s still caring for a parent.
According to the National Alliance for caregiving and AARP, the typical African American Caregiver is a 44-year-old female, currently caring for one adult, a 66-year-old female relative who needs care because of a long-term physical or mental condition. She has been providing a moderate amount of care for 4 years on average, spending 33 hours a week helping with tasks such as bathing or dressing, running errands or managing finances. Additionally, she also provides medical or nursing tasks such as wound care, giving injections, or managing medications. She is the sole, unpaid care provider for her loved one and provides care without the assistance of paid help
But the face of the typical caregiver is changing. Family caregivers come in all variations and circumstances – from the grandson helping his grandmother out by cutting the grass and driving her to the store a couple hours a week; to the mother helping her adult son 10 hours a week with various activities due to his post-traumatic stress disorder; to the adult daughter caring for her mother with Alzheimer’s; to the wife caring for her husband around the clock to deal with his stroke, diabetes, and wound care.
Caring for a family member often takes a tremendous toll on the health and well-being of the caregiver. Research bears out that many caregivers neglect their own health while caring for their loved ones. It fact, studies show that caregivers are at a much higher risk than others for diabetes, depression, stroke and other illnesses. According to a Stanford University study on caregivers, they found that caregivers have a 63 percent higher mortality rate than non-caregivers and 40 percent of Alzheimer’s caregivers die from stress-related disorders before their loved ones die.
Caregiving is difficult, making it vital that caregivers focus on themselves at times. Many caregivers find it hard to carve out time for themselves, to go to their doctor or to other medical appointments. Anecdotally, we’ve heard “Sometimes it’s just easier to ‘back burner’ my own health; I’ll take better care of myself when I’m no longer caring for my loved one.” When you have the additional responsibility of working full time and caring for aging relatives, you ask yourself “How much more time can I take off from work?” When you’ve been to eight or nine medical appointments in a month for your loved one, the idea of going to another, even for yourself, is sometimes just too much.
For many, caregiving is a 24/7 role, one that encompasses all aspects of their lives. For those over 70, spousal caregiving is most common. It is this group that often suffers the most. We recently learned about a 93-year-old man who had been caring for his wife for five years in their home, following her devastating stroke. He never went anywhere other than to her medical appointments or the grocery store. He had no outside assistance and didn’t know where to start looking. Like many spouses caring for their loved ones, he had illnesses that he was ignoring. It was difficult, to get him to consider and agree to have an outside agency come into the home and support him. Sadly, even with this assistance, he died before his wife. You wonder if the outcome would have been different if he had been able to get help earlier and find the time to care for himself. So, the question is, what resources and help is out there for caregivers who are not doing well themselves, yet are determined to stay the course and care for their loved ones no matter what?
Since most caregivers don’t have time to plan this role, but are thrust into it, it would be great to see hospitals and other health care organizations give proper instruction on how to care for their loved ones. In that way, they could be better prepared. Physicians and other health care professionals must look beyond the patient, to the caregiver. They should ask how the caregiver is doing and what the caregiver needs. Often, it’s just assumed that the caregiver chose this role and wants to continue in it. An assessment from the caregiver may reveal something entirely different.
Preventative care for caregivers is greatly needed. Classes on how to cope with the stress of being a caregiver, emphasizing self-care and respite care are needed. There is an excellent opportunity for The Health Gap to engage with caregivers in the community to pro-actively address this need. We have to do something to address the needs of caregivers in our nation. If we don’t, we may be headed towards a new public health crisis.
The Health Gap will be conducting focus groups among caregivers to understand their needs, concern, and issues with being a caregiver for a loved one. The feedback we receive from people will help us better identify and develop solutions to help improve the lives of our community’s caregivers. If you are interested in participating in one of our paid focus groups, please contact us at the information provided below or sign up to be considered at bit.ly/care-giver.