Easter Seals Disability Services

November is National Family Caregivers Month!

National Family Caregivers Month (NFC Month) is organized each year by the National Family Caregivers Association and is designated as a time every year to thank, support, educate and empower family caregivers.

There are more than 50 million people in the United States caring for loved ones 18 years of age of older and at least another 10 million caring for loved ones with special needs that are younger than 18 years of age.

Are you a primary caregiver for a loved one or family member? Then you’re not alone, even though it may feel that way at times. You may be surprised to learn that family caregivers currently provide over 80% of all long term care in the United States.

Each November, National Family Caregiver Month is nationally recognized to draw attention to the many challenges facing family caregivers, advocate for stronger public policy to address family caregiving issues, and raise awareness about community programs that support family caregivers.

It is a time where special emphasis is placed on the need for all of us to help family caregivers protect their health in order to have a more satisfying life and be better able to provide their loved one with the best care possible.

There are many ways to celebrate family caregivers and to take action and communicate the important messages of NFC Month. Following are ideas and guides to help you create a successful National Family Caregivers Month in your community:

10 Ways to Celebrate National Family Caregivers Month 2009 (courtesy of the National Family Caregivers Association)

1. Offer a few hours of respite time to a family caregiver so they spend time with friends, or simply relax.
2. Send a card of appreciation or a bouquet of flowers to brighten up a family caregiver’s day.
3. Encourage local businesses to offer a free service for family caregivers through the month of November.
4. Participate in the National Family Caregivers Association’s FREE national teleclass: Safe & Sound: How to Prevent Medication Mishaps; The free one hour teleclass/webinar will be November 12 at 2 p.m. ET. For more information visit: www.thefamilycaregiver.org.
5. Help a family caregiver decorate their home for the holidays or offer to address envelopes for their holiday cards.
6. Offer comic relief! Purchase tickets to a local comedy club, give a family caregiver your favorite funny movie to view, or provide them an amusing audio book to listen to while doing their caregiving activities.
7. Find 12 different family photos and have a copy center create a monthly calendar that the family caregiver can use to keep track of appointments and events.
8. Offer to prepare Thanksgiving dinner for a caregiving family in your community, so they can just relax and enjoy the holiday.
9. A United States postage stamp honoring the more than 50 million family caregivers in America is officially “under consideration” by the U.S. Citizens' Stamp Advisory Committee for introduction as early as 2011. Sign the petition at www.thefamilycaregiver.org and ask others to sign the petition letter.
10. Help a family caregiver find information and resources on the internet or to locate a local support group.

To learn more about NFC Month visit the National Family Caregiver’s Association at http://www.thefamilycaregiver.org/, and Family Caregiving 101 at http://www.familycaregiving101.org/.

Easter Seals Expertise

A Father Shares His Son’s Story to Raise Awareness of Sudden Unexplained Death in Epilepsy (SUDEP)

“When this tragedy occurred, we were shocked. We thought no one was supposed to die from epilepsy,” shares Jesse Sodden of Toms River, about his son Elliot’s unexpected death in August from a condition known as SUDEP.

Sudden Unexpected Death in Epilepsy (SUDEP) is the occurrence of sudden death of someone with epilepsy, but who was otherwise healthy, and for whom no other cause of death can be determined. Among people diagnosed with epilepsy, the risk is about 1 in 3,000 per year, but rises to 1 in 300 for people who experience frequent, uncontrollable seizures and are on high doses of seizure medication. Presently, SUDEP accounts for less than 2% of deaths among people with epilepsy, according to Epilepsy.com.

Only 52 at the time of his passing, Elliot was always an integral member and vital part of the Sodden family household. Having been born premature and diagnosed with Epilepsy at age nine, Elliot’s seizures were fairly well controlled with medication until the age of 45 when the seizures became more frequent and severe.

“Elliot was a pleasant individual who loved and enjoyed life to the fullest despite his limitations. He lived with us and we were together constantly; I planned all my activities around my son,” Jesse said. “Just as Elliot’s birth was premature, so was his early passing.”

Although there are many different types of seizures associated with epilepsy, most are easily controlled and often go into remission or disappear completely. Approximately 25% of people with a form of epilepsy require lifelong treatment as a result of seizures increasing in frequency and severity. In general, epilepsy is not considered fatal.

“It was only recently that we learned Epileptic seizures can lead to death and, although rare, the condition [SUDEP] is deadly,” says Jesse. “As a tribute in memory of my son Elliot, I want to share some important facts and practical prevention tips with other families facing the effects of Epilepsy.”

TEN PRACTICAL RECOMMENDATIONS FOR PREVENTING “SUDEP”

(Excerpted from Spring 2008 issue of Epilepsy USA magazine)

1. Prevention is key diagnose and begin treatment promptly
2. Discuss the risks of SUDEP with your doctor
3. Take seizure medication regularly being careful not to run out in order to avoid sudden withdrawal or dosage changes
4. Be sure to schedule regular doctor’s appointments and keep them!
5. Adopt a healthy lifestyle by exercising regularly, eating nutritious foods, and learning stress-coping skills
6. Avoid consuming herbal or other holistic supplements without first discussing with your doctor
7. See your neurologist or specialist at the first indication that seizures are no longer under control
8. Consider Epilepsy surgery if your doctor advises that you are a good candidate
9. Avoid consumption of alcohol and recreational drugs
10. Maintain adequate sleep to avoid nocturnal breakthrough seizures and install a monitor to alert others in the home should a seizure occur

For more information on epilepsy and SUDEP, visit www.epilepsy.com/EPILEPSY/main_epilepsy, and www.epilepsy.ca/eng/content/sudep.html

Nationwide, as many as 54 million Americans have a disability. Maybe your neighbor has an injury resulting from a motor vehicle accident, or your coworker has a child with cerebral palsy. Your grandmother may be recovering from stroke -- or maybe you are one of every five Americans with a disability. Look around you, and you'll find people of all abilities who are vital participants in their communities despite the barriers they may encounter.

The barriers, physical or otherwise, people with disabilities face begin with people's attitudes -- attitudes often rooted in misinformation and misunderstanding. Easter Seals provides answers to help everyone create solutions that change lives... maybe even their own.

Learn how to make your home safe and accessible for someone with a disability, or develop an emergency evacuation plan.

Read helpful hints about meeting a friend who has a disability, and check out a list of books for kids!

Know your rights under the Americans with Disabilities Act whether you're an employee or an employer. Ensure your safety and the safety of your colleagues with an emergency evacuation plan. Review disability etiquette and answer common questions about working with someone who has a disability.

Learn more about specific disabilities including spina bifida and post-polio. Clarify misconceptions about people with disabilities and help remove attitudinal barriers.

Solve public transportation challenges through Project ACTION resources. Planning a vacation? Don't forget to think ahead!

Plan for your child's financial future. Choose a service provider for your child or parent. Answer question about raising your child with a disability.