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Caring for the one you love
The work is sometimes hard, and the hours are long,
but the rewards can be simply wonderful
By Sal Capo
President/Executive Director
The big picture
Nearly one out of every four households is involved with caregiving to persons aged 50 or over in America, and by 2007 that number is expected to reach 39 million according to the National Council on Aging. Of the estimated 25 million people providing caregiving services, 80% are unpaid. A study by the United Hospital Fund of New York reports that if they were paid, they would cost near $200 billion per year. That figure is 20% of the total spent on healthcare and twice what is spent on home healthcare services and nursing-home care. The rates and costs are proportional in other industrialized nations. The fact is, without these unpaid caregivers the health care system would collapse.
Caregiving is more than just providing chicken soup. Caregivers extend advanced caregiving techniques, run sophisticated medical machinery and supervising complex medication therapies. The vast majority of home caregivers are also untrained.
The stress on caregivers is immense and measurable. The mortality rate for caregivers is 63% higher than in non-caregiving spouses, and this statistic crosses all cultural, social and financial strata.
Carol Woodson, a geriatric physician in Chicago Heights, Illinois said “For most people (caregivers), they just get worn out. I see people giving excellent care but at great cost to themselves physically. They are trying to do what it takes three shifts of maybe three people to do in a nursing home.” As the nation ages, the problems only become larger and more critical.
The good news is that attention is finally coming to caregivers. The US government is providing $125 million through the National Family Caregiving Support Program passed in 2000. The funds are distributed nationally, regionally and locally to support a variety of services, including counseling and supplemental services such as respite care and day care. Funds to train counselors for caregivers is also mandated.
Traditionally, physicians have not provided caregivers with much support either in recognizing the stresses they are under or alerting caregivers to the resources available to help them. The old defense that they are just “too busy” is no longer acceptable.
“They can’t pretend it’s not part of their job,” said Ronda Talley, Executive Director of the Rosalynn Carter Institute for Human Development at Georgia Southwestern State University. The Institute is a leading advocate and source of information for caregivers.
In recognition of the growing strain on caregivers, the American Medical Association developed a packet designed to improve the relationship between doctors and caregivers. Included in the program is a questionnaire to identify caregivers who may need attention. (To view this questionnaire in English or Spanish visit www.ama-assn.org/ama/pub/category/5037.html.)
“You don’t want them to give too little care and commit neglect, and you don’t want them to give too much care and wear themselves out. You want them to understand how to give the appropriate amount of care, “ says Woodson.
Healthcare is a partnership between the doctor, patient and the caregiver, who often has useful insights into the patient’s condition. Doctors need to give caregivers the information they need to do their job properly and this goes beyond just the medical techniques.
Resources for caregivers
American Association of Retired Persons (AARP) - www.aarp.org, 1-888-687-2277
A list of practical, easy to read articles for caregivers from AARP. www.aarp.org/life/caregiving/
Family Care America - www.familycareamerica.com
This is an excellent website for caregivers. Enter your zip code to find local resources. Check these in particular:
List of documents caregivers need to have on hand. www.familycareamerica.com (Search for specific page)
Advanced Medical Directives, other legal matters. www.familycareamerica.com
Family Caregiver Alliance - 690 Market St, Ste 600, San Francisco, CA 94104. 415-434-3388, 800-445-8106. info@caregiver.org, www.caregiver.org
The Caregivers Marketplace - Discounts on wide range of medical equipment. P.O. Box 1206, Charlestown, RI 02813, 401-364-9100, Toll free: 1-866-327-8340, www.caregiversmarketplace.com
Well Spouse Foundation, 63 W. Main Street, Suite H, Freehold, NJ 07728, 1-800-838-0879, www.wellspouse.org
National Institute on Aging Information Center
P.O. Box 8057, Gaithersburg, MD 20898-8057
1-800-222-222, www.nia.nih.gov
National Council on the Aging - Benefits Checkup Program, www.benefitscheckup.org
Administration on Aging - Eldercare Locator.
1-800-677-1116, www.aoa.dhhs.gov, www.eldercare.gov
Assisted Living Federation of America, 11200 Waples Mill Road, Fairfax, VA 22030, 1-703-691-8100, www.alfa.org
Children of Aging Parents - 1609 Woodbourne Road, Suite 302A, Levittown, PA ,19057-1511, 1-800-227-7294, www.caps4caregivers.org
Visiting Nurse Associations of America - 99 Summer Street, Boston, MA 02110, 1-888-866-8773, www.vnaa.org
How to lift a patient - And more. Written for stroke patients, but applicable. www.cgh.com. (You'll need to search for the article.)
By Marcia Pepper
PPS Board of Directors
Caregiver
The solutions
Suddenly, one unforgettable day in April 1996, I was ‘crowned’ caregiver to my husband, Glenn. He had been diagnosed with PV. He was so ill that he was unable to eat and barely able to speak. My heart broke. This was very scary, folks. I was certain he would die. The entire world had shrunk into a dismal abyss.
Staring at this reality in the mirror of my life, and conversations and “counseling sessions” with anyone who would hear me out caused me to understand that this was Glenn’s illness, not mine. I could not take this burden away, and had to be brave and let go of my fear and negativity so that my husband would not have to worry about me. For a self-confessed ‘control freak’ this was the most difficult part.
It takes a lot of courage to accept the fact that many facets of life are not within our power to change and all we can do is simply move on. Moving on is not a callous deed. It is merely the acceptance of reality and dealing with ways to adapt. Caregivers, as I finally discovered, have to seek a balance in life so as to be able to help your loved one heal, without wearing yourself to a frazzle. What’s more, frazzled caregivers need their own caregivers.
Do not think for a moment that seasoned caregivers merrily dance through each day and the expected occasional setbacks. Not at all. “Learn to relax, Marcia.” I told myself, “Take yoga. Exercise. Take long baths. Read books. Visit with friends. Join a support group.”
Within the reality of PV lies the truth that it took me a while to uncover: life does return to near normal after a while. The chief caregiver lesson I eventually learned is that it is not possible to care for another person unless you give care to yourself as well.
We’ve gathered some practical information and tips every caregiver should know. This information will make the job easier for you and your loved one.
The job of caregiver is an awesome one. It’s tough and it’s often thankless, but since we love the one we care for, it’s a job worth doing and it can also bring some very satisfying rewards.
Caregivers need to prepare for the daunting task in a number of ways to protect themselves from fatigue, stress and other dangers to their health.
1. Relax. Be patient. Plan ahead. Pace yourself.
2. Get educated. Nothing brings stress faster than not knowing what you are doing. Caregivers need to know about the patient’s disease and the medications used. The more they know, the easier it will be to provide the proper care and the better the decisions concerning health will be.
Learn about proper wound treatment techniques and the new bandages that require less frequent changing and promote healing. Inquire about dietary requirements and be sure the patient is eating a healthy diet. If necessary, learn the proper techniques for lifting a bedridden patient. (See Resources box).
3. Develop a good relationship with the Doctors. Go to doctor appointments. Ask questions. Insist on answers you can understand. Write things down so you won’t forget.
4. Delegate. Speak up when you need help. You can’t possibly do it all yourself; don’t try. Enlist family members, neighbors and friends before the workload becomes unbearable. If necessary, consider hiring help.
5. Take care of yourself. You need to eat properly also. Make sure you get the sleep you need. Exercise. It’s good for your body, your mind and your mood. Take time off for yourself to do things you enjoy. Live your own life.
6. Seek services that can help you in your caregiving. Ask others you know who are giving care and compare notes. It helps to have someone to talk to. Review the resources on this page and take advantage of all the help and educational sources available to you. Support caregiver causes and legislation. Watch for future articles on caregiving in Recovery and on the PPS website. You can’t get too much information.
