Story – Three Constants All Caregivers Experience
Any caregiver can attest that being responsible for a loved one’s well-being is no small job. In fact, a job is probably the best way to describe the responsibilities of family caregivers. The estimated 34.2 million Americans who identify themselves as caregivers should certainly leave some space on their resumes to list this job that demands so much time, attention, dedication, perseverance and patience.
Transitioning into the responsibilities of caring for a loved one is often a difficult process, particularly for first-time caregivers. Lack of preparation for a long-term care event leaves family members in a whirlwind of stress and chaos as they search for important documents, explore payment options and try to figure out what’s next.
Just ask Cameron Von St. James, an 11-year caregiver to his wife with mesothelioma, about the early days of his wife’s diagnosis:
“My wife, Heather, and I had celebrated the birth of our daughter Lily about three months prior to Heather’s diagnosis of malignant pleural mesothelioma. We had a five-year plan to get our lives as prepared as possible to be parents and raise a child. Nowhere on that list was ‘be prepared for a cancer diagnosis.’”
“I was clueless. I struggled with anger and felt overwhelmed with a never-ending list of things to do. I had an infant daughter and sick wife to care for. We had decided to go to Boston for Heather’s treatment; not our home town. This meant we didn’t have much of a support network in the area. I felt lost and alone.”
“If you were to ask me about resources right after Heather’s diagnosis, I would have said there were very few – which wasn’t true. It was just the feelings of being overwhelmed and the chaotic daily life of a caregiver. My wife was just diagnosed with a cancer that usually provides a life expectancy of 12-21 months. I felt like there was nowhere to turn for help. I just didn’t have enough time to get done everything that needed to get done – period.”
Cameron’s difficult confrontation with his newfound caregiving responsibilities is a story played on repeat by so many Americans who are trying to manage the health transitions of a loved one. After all, who can ever be prepared to take a loved one’s life-altering care needs in stride?
While every caregiver traverses a path that is uniquely tied with his or her loved one’s needs, certain characteristics of caregiving remain constant—and caregivers deserve to be made aware of these constants before they assume responsibility for a loved one.
Constant #1: Financial Strain
It should come as no surprise that providing care for a loved one with special medical needs can be expensive. Genworth reports that caregivers spend an average of $10,000 out of pocket on medical expenses. What’s more, Genworth’s 2015 survey found that 62% of caregivers used their own savings or retirement funds to pay for their loved one’s care.
With every pressing medical bill, the financial situation for loved ones with health problems becomes more and more challenging. Caregivers often make numerous sacrifices to keep up with the financial demand of caring for a loved one. Take Cameron, for example, who acted as a long-distance caregiver for his wife for three months to help pay the medical bills.
“I worked part-time at best during Heather’s stay in Boston, as I was forced to travel for her treatment and medical appointments. We were willing to sacrifice everything while fighting cancer. Everything we owned was an asset. I knew that when we went to Boston, we were leaving our medical coverage area. This meant we had a 30% co-pay. I had a rough estimate on what treatment would cost—I knew it was going to be expensive—but I didn’t care about the cost. You could take it all, I just wanted my wife to live and our daughter to have a mother.”
As Cameron’s story illustrates, many caregivers also pass up financial opportunities due to the demands of caregiving. Caregivers miss an average of seven hours of work per week and lose an average of 33% of their income each year due to caregiving, according to Genworth.
Constant #2: Physical Health Challenges
AARP reports that the “average” family caregiver is a 49-year-old woman who works outside the home and spends about 20 hours per week providing care to her mother for nearly five years. Just the thought of adding 20 hours of caregiving on top of work and family responsibilities is enough to make workaholics cringe.
Clearly, there is nothing average about the responsibilities that the average caregiver must manage. Caregivers make countless sacrifices to maintain adequate care for a loved one, including the opportunity for a full night’s rest and a healthy home-cooked meal.
“This is something I see many caregivers struggle with. They feel guilty if they take any time off for themselves. Or they are so busy they don’t get enough sleep or eat well. If you run yourself until you have nothing left, you will have nothing left to offer as a caregiver.”
“I knew both Heather and Lily were counting on me. I was always aware of my own health. I knew I needed to eat healthy, get plenty of rest and exercise. I knew that if I ran myself to exhaustion, I would most likely get sick. Then I would have to find someone to care for the three of us. Since Heather and Lily were counting on me, I always tried to take care of myself.”
Caregivers also maintain greater risks of chronic illness than their non-caregiving counterparts. The National Center on Caregiving, for example, found that caregivers report chronic conditions like heart disease, cancer, diabetes and arthritis at twice the rate of non-caregivers.
Consequently, the NCC also found that caregivers are less likely to engage in preventive health behaviors—72% of caregivers report not going to the doctor as often as they should, and 55% report having missed appointments.
Constant #3: Declining Mental Health
Many caregivers’ stories overflow with stress, anxiety and weariness. These characteristics are understandable for people who constantly find themselves in a state of giving—giving of time and money, of attention and energy. This state of giving can be burdensome, and research is revealing the prevalence of mental hardships for caregivers.
A survey conducted by Genworth found that 54 percent of caregivers said they experienced negative feelings because of caregiving, including guilt and resentment. More than half also said that providing care reduced the time they spent with their children and spouses.
What’s more, reports consistently show that higher levels of depression exist among caregivers. They tend to feel a loss of self-identity, lower levels of self-esteem, constant worry or feelings of uncertainty. Caregivers often have less self-acceptance and feel less effective and less in control of their lives than non-caregivers.
“I was diagnosed with depression and had struggled with it from time to time before Heather’s diagnosis. Strangely, I never felt depressed or any negative feelings toward Heather. I was stuck on anger emotionally after the diagnosis. I realized my anger was pushing away people who were trying to help.”
“Once I realized that no matter what happened to Heather, I would always have a daughter, I found my motivation. I also allowed myself to be ‘human’ – to have bad days. Not to dwell on them, but always to move forward. Always trying my best, and then moving on.
“Many caregivers I know have had feelings of depression or resentment at some time. A healthy diet, sleep and exercise help. Remember your social life. Take time off from caregiving and spend time with friends, maybe go out to a social event. Staying connected socially helps with depression and the break will do you good. Talking with a friend can help, however, don’t hesitate to seek professional help if you are struggling with depression or feelings of resentment.”
The Bigger Picture
These constants certainly aren’t the most comforting words of wisdom for caregivers, but they reflect the reality that so many families in America are facing today. Many families are trying to face these challenges alone. A survey by AARP and the National Alliance for Caregivers found that half of caregivers self-reported they had no choice in taking on their caregiving responsibilities.
The reality, however, is that you don’t have to face your caregiving responsibilities alone. Now that you are aware of the challenges that all caregivers face, take the necessary steps to be prepared for these challenges—enlist the help of family members, don’t be afraid to seek out a support group, take advantage of the educational resources and technologies out there for caregivers.
“I like to remind caregivers if someone offers help, say yes. It is one less task for you to do and it can help remind you there are people who care about you. It helps remind us of the network of friends and family who are willing to help. I know caregiving feels very lonely, but remember to take time off for yourself. Stay socially connected with friends and family. Use social media as a tool to communicate and find needed help and resources. Always remember to never give up.”
Written by Dane Roper in collaboration with the Mesothelioma Cancer Alliance.