The Complete Caregiver's Organizer. Robin Porter
short duration, it may be possible to dive in and assume all these roles, but when caregiving becomes a long-term job, no one can keep up that kind of pace without eventually suffering burnout, sacrificing one’s health, or neglecting one’s family. It’s been said that caregiving is a marathon, not a sprint. If you wear yourself out in the first mile, you’ll never make it to the end. That’s why it’s so important to learn from others, rely on professional advice, and seek support.
Think of yourself as the coach who is assembling the best team possible. Some recruits are obvious: you need the help of a trusted primary care physician and other medical specialists, such as an ophthalmologist, podiatrist, and a physical therapist. Also, don’t underestimate the importance of a physician’s assistant or nurse within the practice, as well as your local pharmacist, who can warn you of drug interactions and side effects. It’s wise to develop a good rapport with all members of the medical lineup. Other team members may include:
Siblings or Other Family Members—Begin with a family meeting where you designate tasks and agree on the type and amount of care needed. Create a list of specific tasks and a schedule, so everyone involved knows who is responsible for what and when. The care recipient should also have a copy of this schedule. Communicate clearly and often. You may want to hold regular family meetings to talk about important decisions, medical issues, and inevitable changes.
Neighbors—Those who live close by can look in on your loved one or alert you of potential problems.
Friends—People who offer to help may be willing to run errands, pick up prescriptions, drop off a meal once in a while, or stay with a loved one while you do something else.
Community Services—Many communities offer free transportation to seniors and disabled residents. If someone is well enough to go out on their own, but simply cannot drive, this service is a great way to get around. Local communities also offer senior centers, which give folks an opportunity to join book clubs, play card games, and participate in other social activities in a safe environment.
Adult Day Centers—These facilities offer care and companionship for seniors who need some assistance. For those who work outside the home, adult day centers can provide care during work hours. They may also be used to give caregivers time to handle personal business or have some time to themselves. There are typically two types of adult day care: social care and health care. As the name implies, social care centers offer social activities, meals, recreation, and some minimal health-related services, while healthcare centers provide more intensive health and therapeutic services. Depending on the facility, adult day centers may include counseling, education, exercise, meals, physical therapy, recreation, medication management, and even transportation to and from the center. While adult day care is not typically covered by insurance or Medicare, some financial assistance may be available through certain federal or state programs. You can also look for programs offered by nonprofit entities, such as churches, that may offer these services at a lower cost.
Residential Care—Some assisted living or skilled nursing facilities allow care recipients to stay for a short period of time so caregivers can take a vacation or recover from their own health issues.
Paid Help—Housekeepers, home aides, and visiting nurses can also play important roles on your caregiving team. (See chapter 3 for more on hiring home aides.)
Though many people may contribute to the care of a loved one, someone needs to be in charge! As coach, you are responsible for screening facilities, hiring help, coordinating schedules, and staying involved with all parties, as well as your caregiving tasks.
You can use a simple chart such as the one that follows to start to assign tasks to teammates. Be sure to communicate well and often with those who have agreed to help.
Resources for Seniors
When caring for an aging loved one, a good resource to consider is a Geriatric Care Manager (typically a social worker or nurse). These professionals help caregivers by serving as guides, recommending care options, providing information on potential financial benefits, and suggesting solutions to ongoing problems. To locate a Geriatric Care Manager in your area, visit www.caremanager.org.
The Eldercare Locator is provided as a public service of the Administration on Aging, U.S. Department of Health and Human Services and is a nationwide program that connects seniors and their caregivers with a variety of services. It identifies trustworthy local support services that allow seniors to stay in their homes with the help of caregivers. For more information, go to www.eldercare.gov.
Visit www.sprypub.com/Caregiver to download.
Even if someone is living in his or her own home and being cared for by the team approach, it’s a nice break for the care recipient to spend a weekend or perhaps a Sunday at a family member’s home. It gives the person being cared for a change of scenery, a chance to share meals with loved ones, and an opportunity to interact with others in a different environment. These weekly visits could also be part of the master schedule.
A good team has a strategy, they “huddle up” often and talk to one another, and they remain flexible to changes. By clearly outlining expectations and responsibilities, you can avoid misunderstandings and possible resentments, while providing the best care possible for a loved one.
Keep in Touch
If you are taking a team approach to caregiving, it’s very important to keep communications open. Even if you are unable to meet in person, a weekly conference call or email can convey important information. For instance, a quick weekly email might cover changes in health, what the doctor said at the latest appointment, new medications, things that need to be done around the house, and even potential problems (e.g., “I think dad is losing weight and needs to start drinking a nutritional supplement”). Don’t forget to ask for the opinion of other caregivers, instead of simply making decisions. And finally, injecting some humor into the situation is okay, and may even alleviate some stress!
Care for the Caregiver
Learning the Importance of Caring for Yourself—The Hard Way!
Okay, confession time. When I first took on the caregiver role, I did not heed the advice and warnings of others. When well-meaning friends told me to take care of myself, I would thank them, while inwardly rolling my eyes and thinking, “Yeah, right. Who has time for that?” First of all, my team was small—in the beginning, it was very small, consisting of just me. My husband was extremely supportive and helpful, but he was working full-time and taking up the slack at home. My young son became very adept at helping to get the walker in and out of the car, opening doors for Grandma, and assisting with chores around her condo, but he was just a little boy. My mom barely knew her new neighbors and had no close family members. And so I took on everything, believing I could do it all.
Things started out fine. My mom and I worked out a schedule. I hired a cleaning person, who eventually became a good friend to my mom. Early on, my mom’s personal needs were manageable—which is not to say they didn’t take up a lot of time. Sure, I was skipping my own health screenings, because who wants to spend more time in a doctor’s office when you’re already devoting hours each week at multiple appointments for someone else? And, yeah, I may have cut back on sleep so I could spend more time with my husband and son and get things done around my own house. It’s also possible that I was running unnecessary errands simply because I could not say “no.” But, overall, I felt I had things under control. Then I got a wake-up call.
One day, I woke up with severe back pain. The diagnosis was a herniated disc. When six weeks of physical therapy did not improve the situation,