A random flip through a magazine at my doctor’s office revealed an article that nearly knocked me out of my seat. There are approximately 44 million Americans who make up an “invisible workforce” caring daily for aging or ill loved ones. The article featured research conducted by AARP and reports that this invisible workforce saves the US about $470 billion a year in healthcare costs!
Ironically, this amount saved is almost equal to the amount spent on Medicaid in America already. As healthcare expenses continue to rise, on the surface volunteer caregivers sounds like a great solution. However, as I read this article, I know from personal and professional experience there are great hidden costs to the act of caregiving. With the baby boomers coming of age and longer life expectancy, raising awareness about the stress and perils of caregiving is important.
While 25 % of caregivers are millennials with an almost equal split between male and female, the majority continue to be females in their late forties. The female caregiver reflects what many of us saw growing up, including myself. My grandma was a certified nursing assistant and my Mom was a registered nurse, so caregiving runs deep in our veins. In addition to caregiving on the job, these women were once a large part of the invisible workforce as they cared for various family members over the years.
Back in the day when medical care was not so dominated by lawsuits and there was no such thing as HIPPA, I spent many a day following my grandma around while she worked at a local nursing home. I watched her while she bathed, dressed, and loved on the residents.
Over the years, my grandmother’s deep love and compassion (no doubt coupled along with some good old Southern woman guilt) led her to become a primary caregiver at home to multiple relatives. She would take care of them around the clock until they required a level of care she could no longer provide.
Years later this caregiving model hit much closer to home. I watched my Mom, who was already battling bipolar disorder, commit to the ultimate nursing shifts. She cared for my Dad, the love of her life, at home as he battled cancer until his last breath.
While I know that my Mom and Grandma wanted to care for our family members, I witnessed firsthand the incredible physical, emotional, and financial strain that this type of caregiving puts on people. Little did I know that I had just scratched the surface on my understanding of how deep the impacts of long term caregiving can run.
Caregiver syndrome or caregiver stress is a real condition which manifests with symptoms of exhaustion, anger, rage, or guilt. The physical and emotional tolls of extended caregiving are astounding. Family caregivers are more likely to experience negative health effects such as depression, anxiety, and even chronic disease themselves. Caregiving for long periods of time puts the body under chronic stress which has been shown to cause change and damage at the cellular level.
In addition to the health impacts, the financial impacts on caregivers are incredible. A 2017 article in the New York times reported that 60 % of those caring for older family members report having to reduce the number of hours they work, take a leave of absence or make other career changes. Many conveyed having to go in late or leave early often due to appointments or other emergencies. One in five reported that they had significant financial strains due to caregiving.
There are so many emotions related to care giving but the number one by far is GUILT. This unhelpful but frequent emotion seeps into every second of care giving. The most common guilt is related to having to place our loved ones in care facilities or having to sell family possessions in order to pay for care.
This guilt monster is often fed by a steady diet of “shoulds”, “oughts” and “musts” that have been ingrained in our brains as truths for most of our lives. These thoughts lead us to unhealthy beliefs such as: I “ought” to take care of my Dad at home, I “should” spend more time with my Mom, and I “must” never lose my patience with my loved one.
While it is normal to experience these thoughts, be kind to yourself. Remind yourself that no one can do everything all the time and that perfection of care is not the goal. Anytime your thought includes “ought”, “should”, or “must”, let that be a warning that it is probably not a helpful thought. Replace that thought with a more realistic thought like, “I’m human and I’m doing the best that I can.”
Another important emotion that is often overlooked is GRIEF. People tend to only associate grief with death, but grief means loss. There are so many losses that are associated with caregiving for both the caregiver and the one who is ill. Grief associated with the loss of the health of your loved one and also the loss of the life you knew with this person.
Anticipatory grief reactions are the grief symptoms that occur before the physical death of a loved one. Sometimes referred to as “the long goodbye” especially for family members dealing with dementia or Alzheimer’s diagnosis. Acknowledge the feelings that you are having with your support system. Ignoring them will not make them go away.
WORRY also dominates the life of the caregiver. It is a natural reaction to be concerned over our loved one but when concern turns to constant worry or obsession we need to take action. Excessive worry can impact our sleep, appetite, or cause other bodily distress such as headaches or stomach issues.
Many caregivers are shocked and embarrassed to find themselves feeling ANGER and RESENTMENT. While these are not pleasant emotions, they are normal for the circumstances. It is important to express our anger in healthy ways because left unexpressed, anger can lead to high blood pressure or other health issues.
Don’t keep emotions in when communicating with healthcare providers or other members of the family. Express how you are really feeling even if it seems uncomfortable. If the anger and resentment are related to the family member you are caring for, find someone to share your frustration with who can understand and give you a release. If the anger does not dissipate, take a break from caregiving before your anger becomes harmful to you or the one you care for.
Family dynamic struggles related to caregiving can contribute to anger and resentment. Often family members will find themselves in direct conflict with the very people they should find support. This can be due to differences in opinions on care or frustrations over the uneven share in the care. If issues cannot be resolved through the sharing of ideas together, the family can benefit greatly from the skills of a trained therapist.
Caregiving can be a LONELY business making one feel as if they are on an island by themselves and that no one can understand their daily struggles. The demands of caregiving can make you loose touch with friends or other social activities you used to be enjoy. Equally important, if you are caregiving for a partner who has dementia you have lost yet another outlet of social interaction.
Caregiving is very overwhelming, and you should not go it alone. As a therapist, my clients taught me that the greatest tool to get through the unthinkable is to share your struggles with those going through similar circumstances. Search for support groups in your area which are frequently offered at hospitals or local churches. You can search online or call 211 to find out about resources in your area. If a group does not exist in your area, connect with someone else who is caregiving and support one another.
In my next blog we will explore part 2 of Caregiving as I talk with an expert on how to be prepared before a crisis comes.
As always, until next time may you be well, may you be loved, and may you know true peace.
The purpose of this blog is to offer educational information related to mental wellness. Resiliency Counseling & Consulting, PLLC and Melissa Harrell do not offer diagnosis or treatment through this medium. If you feel that you or a family member needs to access mental health services, first contact your primary care physician for assessment and direction in your area. If you need immediate help, please contact the National Suicide Prevention Lifeline at 1-800-273-8255.