November is National Family Caregivers Month (NFC Month). President Obama issued a proclamation honoring the service and sacrifice of family caregivers. We can all contribute to raising awareness and taking action on behalf of caregivers in our circles.
The National Family Caregiver Association originated the observance in 1997 to focus attention on the more than 65 million family caregivers who provide 80% of the long-term care services in the US. A study by AARP showed that family caregivers provide over $375 billion in "free caregiving services" just in care for older adults annually. Those are the statistics, but who are the people?
That young mother who campaigns for sensory integration therapy for her two year old autistic son is a caregiver. The eighty year old man across the table from you at Mc Donald's is a caregiver. Watch how he feeds his wife, who has Alzheimer's, dainty bites of her burger with a smile. The newlywed wife guiding her Marine husband as he practices crossing the street safely is a caregiver. Since he suffered a severe traumatic brain injury in Iraq, their lives have been in turmoil. Look around your workplace, school, church, or grocery store. There's bound to be a caregiver juggling enormous responsibilities while trying to pass as normal and meet the needs of a loved one.
1. Designate a public time to thank, support, educate, and advocate for family caregivers.
2. Speak up about community programs which support caregivers.
3. Advocate for stronger public policies which address family caregiving issues and the need for ongoing training and support.
NFC Month is a great opportunity for caregivers to go public with their experiences, and for non-caregivers to listen up and get involved. Think about those goals above, and figure out how you can offer your talents and strengths to a caregiver, or take action on a larger issue.
Here are ten tips for caregivers, and for those who want to lend support.
1. Organize a Circle of Support. Caregiving often goes on for years, and we need different forms of support and assistance as time goes on. Even if you've been a solo caregiver, it's never too early or too late to organize a circle of support. Make a detailed list of all the tasks, responsibilities, appointments, errands you manage. Then decide which could be done by another person. Invite family, friends, and acquaintances to a meeting. Many people are relieved to hear you need their specific skills even if they can't provide direct care to the sick person. For example, a new friend helped me stage a yard sale to reduce clutter in our home. An accountant who was new to our neighborhood volunteered to help me organize records to file our overdue income tax! Be creative and assertive in you requests. Ask a friend to coordinate help with an online tool such as Lotsahelpinghands.
2. Share your experience to raise awareness or rally support. Pitch an article or essay to your newspaper or radio station. Write a blog detailing a day in a caregiver's life. Offer to speak at a community event, or policy hearing.
3. Tell your family how you would like to be celebrated. Caregivers often skip over our own needs to be thanked and appreciated. Would you like a gift certificate for a massage or dinner out? How about a thank you card signed by the person you care for?
4. Stop pretending you can handle more than you can. One of the best ways I cared for myself was to stop pretending to myself or others that I had energy or compassion to give when I didn't. I honored how exhausted I was -physically, emotionally, and spiritually- and made new plans for replenishment. I explained our situation more honestly to others and asked for help from different resources as the years went on.
5. Divide your reserves of compassion wisely. Save some compassion, kindness, and forgiveness for yourself. It's not necessary to give it all to the sick person. Express compassion by prioritizing time for your health and well-being. Forgive yourself for what you don't know, didn't do exactly right, didn't say kindly that time. We are only human. Marvelously, spectacularly human.
6. Update your self-image beyond caregiving. Caregiving can be all consuming. Take stock periodically and update how you view yourself and want others to know you. Hold out a few hopes and dreams of your own. Take small steps to make them happen. What are your core values, passions, beliefs? Are they being expressed in constructive ways, or are some changes in order?
1. Join a Circle of Support. Offer to help organize a circle (see #1 above). It's never too late to get involved. Don't be embarrassed if you've avoided the family up till now. Offer companionship, help with physical therapy, errands, professional skills, etc. Specify whether your help can be one time, intermittent, or ongoing. Support circles work best when expectations and offers are stated clearly.
2. Refrain from saying "You have to take care of yourself." Caregivers hear that phrase all the time from well-meaning people, and it makes us grind our teeth. That's because we're doing the best we can with the resources and time we have. Try saying, "How can I help you take care of yourself?" Or "What can I do to pitch in?"
3. Get involved in a policy or political issue. Advocate for more State money for eldercare services. Call your elected officials and ask them to vote for funding for programs that educate and support family caregivers. Write a letter supporting the Strengthening Services for Seniors Act.
4. Offer a chance to feel "normal." Caregivers also appreciate distraction, humor, a chance to go out for an evening and not talk about the sickness world. Offer mutuality, good conversation, a chance to be known as an individual-not a cookie cutter caregiver role.
1. Caregiving in the U.S. 2009
by: National Alliance for Caregiving in Collaboration with AARP; Funded by The MetLife Foundation, | from: Surveys and Statistics | December 2009
2. Capossela, C. and Warnock, S., Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill.Fireside Book, 1995.