Here's What I Learned When I Became My Parents' Caregiver
I didn’t volunteer to become a caregiver to my elderly parents. Instead, I was slowly initiated into the role. It started by doing little things to help. Even though they were in their mid-eighties, they insisted on staying in Pensacola, Fla., their home of 50 years. Since I lived in Virginia, I called twice a week to check on them and shopped for them online. With each visit, I tried to notice things that would tell me if they were doing all right. Were the bathrooms clean? Was the yard mowed? Was there spoiled food in the refrigerator or the pantry? For the most part, they passed these tests. Still, I pleaded with them to consider moving; the answer was always, “not yet.”
Because of this choice, I wasn’t there when dad was rushed to the ER for three stitches in his forehead, after tripping on steps at the auto repair shop. I couldn’t accompany mom to the doctor to get a shot in her eye for macular degeneration. I was too far away to drive my parents to church on Sunday morning or take them to Walmart. If they needed a prescription from the pharmacy or a ride to the health department to get a flu shot, they were on their own. That’s the way they wanted it. And their situation isn’t unique. A 2021 survey conducted by AARP showed 77% of adults 50 and older want to remain in their homes for the long term — a number that has been consistent for more than a decade.
One incident meant they couldn’t live independently
In spring of 2015, everything changed. Dad caught a cold that caused a secondary infection in his lungs. He ended up in the hospital with double pneumonia and his condition quickly spiraled, sending him into renal failure. His kidneys rebounded, but from then on, dad had chronic pneumonia and went back and forth from rehab to the hospital. It took this crisis to make my 89-year-old parents realize it was time to move.
With my parents’ blessing, I enlisted a realtor to put their house on the market. We priced it to sell and received a cash offer in less than a week, so mom and dad could move to an assisted living facility 10 minutes from my home. Once the movers left, we drove to dad’s rehab facility and parked under the portico. As the nurse helped him out of the wheelchair, my family saw for the first time how feeble his body had become. We broke into tears as he shook and struggled to stand. Once a strong, proud man, dad was reduced to having a nurse pick him up and set him in the passenger side of our car.
The assisted living facility required residents to go through a physical and mental assessment before being admitted, so we had to accommodate mom and dad in our home for a couple of days while they waited to be accepted. Even though I thought I had anticipated dad’s needs, I quickly realized I was not prepared to care for him. After a few hours I was in tears, feeling so inadequate to care for him.
Help from family and friends is crucial in these situations. My friend John volunteered to meet us at the airport and help transfer dad into our car, and he followed us home to transfer him from the car to the wheelchair, to the house. And my sister-in-law, who is a nurse practitioner, showed up at our door to help care for dad for a few days. Otherwise it would have been an unbearable emotional and physical strain on all of us.
Taking on a new caregiver role
From that point on, I put in many long hours caring for my parents. I paid their bills and resolved issues with Medicare and their insurance company. I accompanied them to doctor appointments and got their groceries. I never knew when I’d get a phone call to meet my dad at the ER in the middle of the night to deal with a urinary tract problem or another round of pneumonia. All of this required lots of organization on my part.
Caregiver Action Network points out one of the most important things you can do once you’ve taken on this role is to get organized and make sure you have access to important documents. For example, a document naming you as Power of Attorney allows you to make financial decisions on behalf of your loved one, if needed. Adding yourself to their bank accounts and credit cards can help keep track of their bills, as well.
For those who are new to the administrative angle, help is available to assist both seniors and their caregivers, advises Ron D. Boyd, president and CEO of The Local Office on Aging, Inc. in Roanoke, Va. For example, LOA offers legal services to keep Powers of Attorney, Advance Directives and Living Wills up to date. The Area Agency on Aging can also help with Medicare and insurance counseling. Many assisted living facilities and local municipalities offer shuttle services or elder transportation for appointments and other trips, as well.
In between all of the necessary tasks, I tried to give my parents as much quality of life as possible. I took them with me to church on Sundays and helped them celebrate birthdays by taking them out to eat or throwing a party, even though my dad’s fragile health made family gatherings unpredictable. Patience is key when dealing with the elderly, too. As seniors, my parents lost their filter. They blurted out things that were sometimes embarrassing to hear, almost like a child, and liked to tell the same stories over and over. I learned to be tolerant, realizing they were doing the best they can.
The next phase can arrive quickly
When dad became resistant to antibiotics and began aspirating, he had to move to a long-term nursing facility. Pneumonia set in for the final time, and I called Hospice to request end-of-life assistance; after 11 months of caring for dad, he passed in July 2016 at age 90.
Knowing when to call hospice can be a challenging thing to pinpoint. When a parent starts losing weight, refusing to eat, coughing, or choking on food, and can no longer do normal activities like walking, dressing, feeding, bathing, transferring, or using the bathroom without assistance or has a life-limiting diagnosis, hard decisions are ahead.
“While hospice does not replace the role of family caregiver, it supplements by educating and supporting families and offering additional services, including nursing and aide visits, support from social workers, volunteers, a chaplain if desired, and grief support, as well as supplying assistive equipment and devices in the home,” explains Angela Novas, chief medical officer for the Hospice Foundation of America. “If you think your loved one is eligible, reach out to HFA or go through a physician or nurse practitioner involved with their care for a referral to find a hospice in your area for a free assessment.” Involving a local hospice organization can also serve as an extra set of eyes and ears to give you a more objective perspective on your family member’s care.
After my dad passed, I became the chief caregiver and companion to my mom. Helping her grieve my dad at the same time I was grieving him was very hard, but I knew I had to stay strong for her. Mom had macular degeneration, arthritic back pain, and Type 2 Diabetes, but she managed them well enough to be active; so we took advantage of that as long as we could. The April after dad passed, mom and I traveled to visit her younger sister and attended a family reunion. I continued getting her groceries so she could cook some of her own meals and we took more shopping trips to buy new clothes, in addition to daily phone calls and visiting her a few times a week.
In March 2019, right before her 93rd birthday, mom suffered a hemorrhagic stroke. Her health degraded quickly and she was moved to a nursing facility. Again, I called Hospice for end-of-life assistance; she lingered a few weeks before she died.
Caregivers also need to care for themselves
You may think you will never face a situation like mine. But according to data collected from community-dwelling adults 45 years of age and older by the Centers for Disease Control and Prevention between 2015 and 2017, the need for caregivers is expected to continue to grow with increases in the U.S. older adult population. Their data indicates that 17.2% of middle–aged and older adults who are not currently caregivers expect to begin providing care or assistance to a friend or family members with a health problem or a disability within the next two years.
Caregiving is hard, especially if you also are carrying the weight of a full-time job and managing your own family. According to a report from the National Alliance for Caregiving, more than 11 million Americans are caring for an adult family member due to health needs or disability, while also caring for children at home. In addition, 76% of caregivers are also employed while providing care. So if you have a job, be prepared to take time off or cut back your work hours so you can care for your loved one.
During my caregiver years, I took Intermittent Family Medical Leave and spent more than 100 leave hours from my job in order to be “on call” for my parents. Assistance from family members is invaluable but if that’s not an option, don’t be afraid to ask friends to relieve you for a few hours. Respite care—such as someone coming into the home to allow the caregiver to leave for a few hours on a regular basis or off-site daycare services for adults—can also be very helpful, especially for those who don’t have friends or family nearby. Respite care enables the caregiver to rest, recharge and remember there is life beyond caregiving, explains the Caregiver Action Network.
“Just as we advise parents not to spend every hour of the day and night with their children, because it is not healthy for the family, so two people living under stress need the refreshment of occasional separation and change to keep the relationship loving and healthy,” advises that organization.
Your new role isn’t forever, even if it feels daunting
Caregiving is a difficult journey. But it’s easier when you prepare for what’s coming. Unfortunately, many seniors are not ready to talk about end-of-life plans until something major forces the conversation. Ask them what they want before the crisis comes. Aging With Dignity, a national non-profit organization, has compiled the “Five Wishes” document, a list of suggested questions to answer before you are seriously ill and unable to speak for yourself:
Who can make healthcare decisions for you when you can’t make them for yourself?
What kind of medical treatment do you want or don’t want?
How comfortable do you want to be?
How do you want people to treat you?
What do you want your loved ones to know?
Caregiving can also move from a part-time gig to full-time role at a moment’s notice. Regardless of whether there is time to plan, there is help available to you, services that can reduce caregiver depression, anxiety, and stress as well as enable caregivers to provide care longer, thereby avoiding or delaying the need for costly institutional care. Respite services, counseling, pastoral care and social workers' services can be great assets to caregivers.
Your efforts to see your loved one get the care they deserve is worth it. And finally, remember that this phase won’t last forever. While it may seem unending, once your parents get to this stage of life, you may have only months or a few years to be with them. Look for the good times and treasure the special moments along the way.
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