As I sat across the cafe table from my dearest friend, Margie, I was struck by how tired and drawn she looked. This was the first time we had seen in each other in months. Before, we had made a point to meet for lunch or coffee once a week. Now that she had moved her folks close by to help with her father’s care after his Alzheimer’s diagnosis, there never seemed to be time.|
I listened quietly as she shared what life was like for her these days. After putting in a full day of work as a teacher, many afternoons she drove 25 minutes to the assisted-living facility to handle the day’s crisis or just to give her mother a break. Margie feared her mother was showing signs of being clinically depressed, so she planned to accompany her to a psychological evaluation on Saturday.
Admitting to her intense feelings of anger—at the situation, at her sister who lived on the other side of the country, at her husband who couldn’t understand when she felt too tired to go out on a Saturday night—she felt guilty for feeling angry. Having abandoned her own exercise program, she now had flare-ups of chronic back pain from lifting and moving her dad when he refused to do it himself. I could see her disappointment in the many pounds that she had gained, after working so hard the year before to lose them.
Margie is certainly not alone in experiencing the burden and stress of the caregiver role. I reflected back on my own experience caring for my folks the year my father was diagnosed with Parkinson’s disease, and my mother fell, breaking her arm, while visiting him in the hospital. That was a long, hard winter for my siblings and me, as we traveled back and forth to Florida to help them set up the ongoing care they would need when we were not around.
Thrust into a position of attending to an elderly and/or disabled loved one, caregivers often sacrifice their own physical and emotional needs. Feelings of anger, anxiety, stress, isolation, exhaustion and guilt are all too common--not to mention the increased risk for health problems such as headaches, digestive distress, chronic pain, difficulty sleeping, weight gain and depression.
Research has shown that these symptoms are even more pronounced in those caring for individuals with dementia and Alzheimer’s. What Margie and her mother were experiencing is certainly understandable.
The Family Caregiver Alliance, an organization founded in 1977, was the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care at home. Their research, task forces and position papers clearly show that most caregivers neglect their own health by not taking the time to engage in preventative health behaviors, such as exercising, eating well, getting adequate sleep or attending to personal doctor’s visits. Lack of support, and not knowing where to turn for it, compounds the problems.
At some point in your life, there may come a time when a person you love becomes ill or unable to function on his or her own. Your role shifts in a way for which you may not have been prepared. Your formerly independent parents suddenly feel like your children. Sick or disabled loved ones are in need of constant care and attention. As we become enmeshed in the caregiving, we may find our own life and needs slipping away. I learned a lot about what works to alleviate the stress and keep it all together while providing care for my parents. I hope these tips accumulated from the FCA and my own experience will help you to care for yourself if you find yourself in the caregiver role.
9 Self-Care Tips for Caregivers
1. Put your own self-care at the top of your priority list. You will be absolutely no help to anyone if you fall apart. Stick to your exercise routine, don't skip meals, fuel yourself with healthy foods and get the sleep you need. My daily run alleviated my stress, gave me a welcome break from attending to my parents' needs, and kept me feeling in control and energized. It may feel difficult to balance it all, but do not let yourself feel guilty for taking time for yourself. Likewise, avoid that guilt of not being able to "do it all" like you once did. Do what you can in these areas of wellness. It's about progress—not perfection.
2. Ask for and accept the help you need. There is no shame in asking others to help out wherever needed. Most people not only want to help, but feel really good about doing so. Whenever I needed help getting a lift to or from the airport, picking up things from the market, or cooking dinner, the assistance of my husband, children and friends was invaluable and very much appreciated.
3. Research and apply for assistance from available services. Most communities have loads of services for seniors, such as Meals on Wheels, Senior Care Shuttle Vans, Jewish Family Services or Christian Senior Services. The more services you have in place, the more at ease you will feel when you can't be there. The FCA lists many on its website. Look into support groups not only for your loved one but for yourself as well. Sometimes, no one can truly understand what you're dealing with unless they've been there, too.
4. Keep up with your own work and responsibilities. Worrying about falling behind in your work and responsibilities will cause extra stress. Try to stay organized and on top of what you must accomplish on a daily basis, so that you can focus on your loved one's needs and be totally engaged when you're with them. Table anything that isn’t high priority to a calmer time.
5. As much as possible, involve your loved one in the decision making process. Unless you are dealing with the loss of mental faculties, your loved one deserves to have a say in his/her care and life. Just because someone is elderly or ill does not mean they can no longer make knowledgeable decisions about what is right for them. Ask what it is they need and want from you; it may be less than you think.
6. Do not feel guilty when away or attending to your own life. You can only do the best you can. Remind yourself that you are being a loving and caring individual, but you must also love and care for yourself, too.
7. Do something fun every day. Whether it's escaping to see a funny movie, reading a great book for a half hour or meeting a friend for a cup of coffee, a small daily break will give you the strength and stamina you need to continue in your role as caregiver. At the very least—smile, even if you don't feel like it. And look for the humor in things; even small bits of laughter can change your mood and boost your health.
8. Know your limits. Should you really be lifting your mother to and from bed yourself? Taking on all of your elderly aunt's yard work? Tackling those home repairs for your disabled grandfather? Some caregivers have the time, physical strength and desire to go above and beyond—but make sure you're doing these tasks safely and ergonomically so that you don't injure yourself. Lots of heavy lifting and assisting in another person's mobility can lead to overuse injuries, back problems and falls for the caregiver. Learn how to do these things safely and correctly or call in reinforcements when you can't handle something yourself or start to notice it taking a toll on your body. Home health aides can be of great help, as can retrofitting your loved one's home to make mobility and accessibility easier for them (and less of a burden on you). Although you may want to do it all or feel obligated due to financial restraints, always remember that if you become injured in the process, you will no longer be able to help.
9. Count your blessings and find gratitude. If you look for it, you will find gifts during even the most difficult of times. On a daily basis, I found myself feeling incredibly grateful for so many things. My brother and sister and their spouses, along with my husband and I, all pulled together as a team to divide and handle whatever needed to be done. I never felt alone! My children went above and beyond to help out wherever needed. Friends called and offered help constantly. As a coach, much of my business is done by phone or online, so I was able to continue working while away from home. But mostly I felt blessed to still have parents to care for and that I wanted to do so from the bottom of my heart. Look for the silver lining. There is much you can glean from even the hardest of life's challenges.
Family Caregiver Alliance,"Caregiving and Depression," www.caregiver.org, accessed April 11, 2013.
Shultz, Richard and Beach, Scott. "Caregiving as A Risk for Mortality: The Caregiver Health Effects Study," from JAMA, December 15, 1999 - Vol. 282,