One of the most invaluable components of homecare is the family caregiver. These selfless individuals provide unpaid care for a loved one, assisting with their medical needs and/or activities of daily living. Odds are, you or someone you know is a family caregiver. With over 65 million caregivers in the US, that’s 3 of every 10 people.
Many of these caregivers don’t see themselves as a “caregiver”; they just view it as helping a family member out of love. They provide a variety of services which can often be physically and emotionally demanding and on average spend 20 hours each week providing care. Some enter into this role gradually over time, while many are abruptly thrown into it after an acute episode, hospital discharge, or sudden realization that the person has immediate needs not being met. Without proper education and resources, many caregivers feel isolated in this new world and struggle financially, psychologically, and professionally as result.
Fortunately, once one self-identifies as a caregiver, 90% become more proactive about “seeking resources and skills they need to assist their care recipient” according to the National Family Caregivers Association. They are empowered to learn more, ask the physician additional questions, seek community assistance, and discuss responsibilities and caregiving issues with other family members. Most importantly, they learn that it’s okay to ask for help. Caregiving is often a long-term commitment, and just like a marathon, one must pace oneself.
Consider the following (fictitious) people:
After Leslie’s father died, she began calling her mother, Florence, each evening on her way home from work to check in and say hello. They would talk about the day’s activities or the weather, and Florence would update Leslie on all of the drama with her favorite TV show. One evening, Leslie called only to find out that the phone had been disconnected. She thought it odd, so she headed over to her parents’ house. Florence answered the door, happily ushering Leslie in and inviting her to stay and visit. Leslie agreed and went into the family room to test the phone. It was there she found unopened envelopes from the utility company, phone company, and more. “Mother, what are all of these envelopes here for? Are you not going to open them?” Florence laughed it off, saying, “Oh I’ll do that later; I just haven’t had time to sit down and figure all of that out yet”. Leslie pursued, asking Florence how long it’s been since she’s paid her bills. Florence said she thought it had only been a week or two, and opened the top one to prove it. “Mother!” exclaimed Leslie, “This bill has a past due date of two months ago!” Confused, Florence opened the next envelope, then the next. All overdue. Leslie then tenderly talked to her mother about how she could help her mother pay bills on time and help oversee her accounts. Florence resisted at first, but when Leslie showed her how there was no dial tone on the phones, she conceded. “I just thought no one had called me today. I get lonely here sometimes, but I can always count on your phone call to end my day with a friendly voice.” Leslie worked it out with Florence’s bank to where she could issue checks on Florence’s behalf and coordinated with the different companies to have the invoices sent to her house instead. Leslie began visiting her mother weekly and helping with tasks around the house that had become increasingly difficult for Florence to do. One week it was vacuuming, the next going to the grocery store. Leslie learned how to anticipate Florence’s needs and was able to gradually assist with more things in spite of Florence being too independent to admit needing help.
Sandra and Margaret were gardening buddies who lived next door to each other. Though Margaret was 30 years older than Sandra, their friendship blossomed over the years as they worked in their gardens each morning. Margaret lived alone since her two adult children lived out of state, so she would often come to Sandra’s house to celebrate the holidays, share recipes, and talk about life over hot tea and gingersnaps. One day Margaret fell while reaching for her bag of seed in the garage. Sandra met Margaret at the hospital where she learned that Margaret had broken her hip. Margaret’s physician explained that she would first go to a rehab facility and then be allowed to come home where she would have visits from an occupational therapist and continue recovery. When Margaret got home, Sandra and her husband Steve volunteered to help her out until she fully recovered. Steve installed grab bars in the bathroom to make it safer for Margaret and mowed the lawn each week. Sandra helped Margaret reorganize her kitchen so that frequently used items would be more accessible. Standing for long periods of time was still difficult for Margaret, so Sandra started preparing larger meals that could be easily divided and shared with Margaret. Through the help of Sandra and Steve, Margaret was able to remain at home and fully recuperate instead of staying at the rehab facility for a much longer amount of time.
Donna sat at the kitchen table with her mother Helen, brother James, and sister-in law Jeannie, discussing what to do about their father who was rapidly digressing. Harold was diagnosed with Parkinson’s two years ago, and they feared that Helen was no longer physically able to care Harold. Helen had been managing Harold’s medications, driving him to different doctor appointments, and helping him with daily activities like dressing, but she was not strong enough to perform the increasingly demanding physical tasks and worried about him falling. They agreed that an institutional facility was their last resort sought alternatives. James and Donna decided to alternate staying at their parents’ house overnight to help and monitor what long-term solutions were needed. This worked for the first few weeks, but it became stressful for James and Jeannie’s relationship. Donna offered to move into her parents’ home to relieve James & Jeannie. It wasn’t far from her work, so she knew she could come quickly if there was an emergency. As Harold’s needs became greater, Donna spoke with her boss about becoming part-time and working remotely. “It’s the least I can do for them–they spent 18 years raising me after all” thought Donna.
All of these people are involved in the act of informal family caregiving. And their numbers are on the rise. The AARP recently released a report valuing the free services of America’s family caregivers at $450 billion of free care. That’s B for Billion, folks. This dwarfs what is spent on homecare and nursing services combined. In our great state of Tennessee, the National Family Caregivers Association estimates that there are currently over 591,600 family caregivers providing this free service for a loved one–saving our state an overwhelming $6,287,000,000 each year.
It is imperative that our country harness this free service and support the caregivers who are making personal sacrifices to care for one in need. We need greater awareness, resources, support, and communication for caregivers across the country. We need a system that empowers them to keep doing what they’re doing. These are the true champions for homecare. The true advocates for our nation’s elderly and disabled. They are the ones who walk the walk each day, and they need our support.
If you’d like to learn more, visit these sites about caregiving: National Family Caregivers Association, the National Alliance for Caregiving, or the US Government Caregiving site. You can also read an in-depth study of the economic value of family caregivers.
This is written with a special thanks to all of the caregivers out there, especially my mom who is a full-time caregiver and has been for the past 4 years. It’s people like you who make the world a beautiful place.