By SMH Outpatient Care Coordinator Wanda Jackson
As caregivers, we are often asked to serve as nurse, companion, chef, accountant, driver, personal assistant, and more. To keep up with all of this, we must take time to rest, relax, and rejuvenate—as the adage goes, you have to fill your own “cup” before you can fill another’s.
For many caregivers, this advice likely sounds impossible—perhaps even selfish or impractical. But, it’s not selfish to carve out some “me” time for yourself, especially if it will enable you to be more effective in your many roles.
Being a full-time caregiver can take its toll on your health and well-being. When you’re constantly stressed and fatigued, you’re more likely to get sick. And if you get sick, who will do the caregivers’ juggle in your stead?
Most people don’t plan for or anticipate becoming a caregiver. They didn’t ask for the “job,” aren’t trained for it, and—if we’re being honest—most don’t even want the job. It’s an extremely tough role that typically gets little recognition for just how tough it is.
Living with someone who needs your constant and continued help can be mentally and physically exhausting. But if you’re a caregiver, you already know all of this: Frustration is your middle name, and anxiety management is your game.
The truth is, caregivers are the most overwhelmed group that I work with as an outpatient care coordinator. So, if you’re one of the 34-million family caregivers who no one ever asks, “How are you doing?,” let me give you a few tips to help you not only cope with your caregiving role, but hopefully, to enable you to thrive as you move forward and build a new care partnership with your loved one.
Caregiver's Survival Guide
1. Assess your situation. Make a list of the tasks for which you are responsible. This list might include things such as scheduling doctor and therapist appointments; driving to appointments; monitoring and dispensing medications; planning and cooking meals; feeding pets; cleaning house; maintaining the yard; helping with personal hygiene like teeth-brushing, showers, and wound dressings; managing your own emotions while making your loved one feel comfortable and safe during their daily challenges—possibly all while managing a full-time career and perhaps a family, too.
2. Allow yourself the time to process your situation and to adjust to the role. Caregivers frequently grieve the loss of what they thought their future would look like. Knowing that life will never be the same can be a hard pill to swallow. With caregiving, grief can be perpetual. Find a way to not dwell on what might have been.
You may have to go through all five stages of grief—denial, anger, bargaining, depression, and acceptance—before you can come to terms with the hand you’ve been dealt, and that might take some time. Once you reach acceptance, you can decide best to deal with the challenges ahead.
Make life and lifestyle adjustments to accommodate the new situation, then move forward. Find new things that you can do together with your loved one that you both will enjoy.
3. Get educated. Be sure that you understand your loved one’s diagnosis, know what can be expected, and know what changes to expect over time.
- Check out free education programs at hospitals and libraries.
- Learn about treatments like physical and occupational therapies that can be beneficial.
- Consider safety at home. Have a trained expert inspect your home and give you options for ensuring safe navigation, if your loved one has a mobility issue.
- Ask physicians/nurses/therapists any and all questions you may have.
4. Say “yes” to help. It’s insane to think that you can do it all on your own—especially when you don’t have to. When someone asks, “How can I help?,” offer some specific tasks that they can help with, like cleaning the house, doing laundry, grocery shopping, or mowing the lawn. Don’t “steal” their blessing of helping you out. Others feel good when they help out. If you try to do it all yourself, you steal their chance of feeling good about doing good.
If you don’t have a support circle that can pitch in with some of your to-do’s, consider hiring a service to come in and give you a break. This could be a cleaning service, lawn service, or even home healthcare. Search for resources in your community for respite care, adult day care, transportation services, etc.
If you can’t afford to hire help, ask family members who can’t be there for the day-to-day assistance to pitch in financially. Remote family members also may be able to help by taking on tasks like bill paying, dealing with an insurance company, etc. Asking for or accepting help is a sign of strength, not weakness.
5. Know your limits. If you weigh 125 pounds, it’s highly unlikely that you can lift your 200-pound husband off the floor. Hire help like a home healthcare nurse or aid; check to see whether insurance offers benefits for hired help.
6. Develop a plan for your own self-care. Exhaustion can lead to serious health consequences, including depression, lowered immune system, mental confusion, forgetfulness, and fatigue. Get your rest.
Nurture your soul, spirit, and creativity. Stay socially engaged, together or individually. Try interactive, creative programs such as songwriting, storytelling, dancing, playing instruments, and painting. These provide ways for caregivers and care recipients to relinquish their usual roles and enjoy a fun and stimulating experience with each other and with others.
Take in a movie or get together with friends and family. Just be sure that you don’t become isolated; isolation can lead to depression and other health issues.
Be mindful of your own health and wellness. Try to eat healthy; if you keep healthy food in your fridge, you’ll eat healthy food! And be sure to see a doctor for your annual check-ups and tests.
Get some exercise. It doesn’t have to be much, just start by getting out and walking for 10 minutes each morning and evening. I’m betting that it will feel so good, you’ll soon be finding ways to get more exercise.
Try a support group. Caregivers need to vent. Venting is cathartic, especially when its among others who can truly empathize. When you’re surrounded by those facing the same life challenges as you, it’s much easier to admit the hard things—things like there are days when you lose it, times when you want your old life back, or that you miss who your loved one once was. Support group participants also share suggestions, successes, and understanding like no one else can.
7. Practice good communication. If you’re not a great communicator, now is the time to beef up your game. Good communication is imperative between the caregiver and:
- The care recipient—Your loved one may be hesitant to tell you what is really going on.
- The medical team—Be prepared for appointments by noting questions ahead of time and writing provider responses down, so you don’t forget the details.
- Family and friends—Let them know what is going on. Be kind and respectful of your loved one, but be honest too.
8. Don’t buy into thoughts of guilt or other negative emotions. There are plenty of times when caregiving can bring about about a swirl of negative emotions: guilt, sadness, frustration, anger, anxiety, resentment, fear, grief, and stress. That is normal. But try to not let them overwhelm you. Seek counseling, if you need it, or share your feelings with a support group.
The flip side to the raw, negative feelings are the feelings of devotion, tenderness, intimacy, gratitude, patience and purpose that many caregivers experience in their role. In fact, a recent study from the Sloan Center on Aging and Work at Boston College found that older Americans feel happier and more content when they feel that they are making a difference in caregiving and are highly engaged in what they're doing.
Remember this is a situation where you have limited control and you can’t feel guilty about that. But you can control how you react to it. My mother always told us that “Life is 10 percent what happens to you and 90 percent how you react to it.
9. Live in the moment, and keep a sense of humor. This is something we can all do—and bonus: It takes no extra time or money!
Remember to enjoy the little things like a refreshing shower. You can’t do any of the 10,000 things on your to-do list while you’re in the shower, so take the opportunity to relax and enjoy the feel of the water or scent of the soap; you can give the to-do list your attention afterward.
A good sense of humor and appreciation for all those who love and support you will go a long way in making each day happier. Life is full of twists and turns and mountains to climb! So why not see it with a sense of humor? “A funny thing happened on the way to the future….”
10. Set weekly health and wellness goals for yourself, and then ask yourself: “How am I doing?” Use this as an evaluation guide:
On a scale of 1-10, how would you rate your mood this week? ____
Affirmation: “I will practice asking for and accepting help with my caregiver duties. I will exercise, and find ‘me time’ to relax. I will free myself to smile and laugh, when I think something is funny! I know that it is OK to rest and take care of myself, and to give up any guilt associated with that time.”
Goal: This week I will … _______________________.
Goal examples: Eat right; get some outdoor exercise while the weather is nice; learn a funny joke that I can tell; sign up for a support group meeting; finally make that eye-doctor appointment.
Caregiving is complicated. There is no one-size-fits-all solution as each situation is entirely unique, unpredictable, and ever changing. Your plans and routines will require constant evaluation and revision. You’ll need to reach out to others for ideas, advice, and help, and that includes finding ways to take care of the caregiver—you.
Now, let me ask you, how are you doing?
Certified Healthcare Access Manager Wanda Jackson, Sarasota Memorial’s outpatient care coordinator, helps patients and families connect the dots from inpatient care to outpatient services. Currently, she serves as an oncology navigator, outpatient cardiac and pulmonary rehabilitation navigator, and MDA/ALS clinic coordinator. She also facilitates SMH’s stroke wellness clubs, stroke support groups, Parkinson’s wellness clubs and support groups, and other programs.