Caregiving

Book Review: It Takes More than Love: A Practical Guide to Taking Care of an Aging Adult

2008-08-12T22:22:00Z

It Takes More Than Love: A Practical Guide to Taking Care of an Aging Adult by Anita G. Beckerman and Ruth M. Tappen is a comprehensive guidebook for family and friends on day-to-day care for dependent older adults. Two experts in gerontology and caregiving cover all the critical processes involved in safe, effective care, from medications and feeding to bed transfers and toileting. Helpful tips, guidelines, and step-by-step care instructions are presented throughout, including pictures and diagrams for reinforcement.

This book addresses both the practical and personal issues that caregivers face, placing emphasis on caring for oneself as well. It is filled with practical, easy-to-use, hands-on advice that will ring true for experienced caregivers and help newcomers cope with a job which, after all, can be highly stressful—especially when caring for loved ones.

Issues addressed include navigating family relationships, understanding normal age-related changes, assessing and ensuring personal health and well-being, and communicating with health professionals. Readers can go right to the information they need on any given day. Medical topics such as foot care, incontinence, medicines, and falling are discussed in an accessible manner that makes problems less intimidating. Personal stories help caregivers feel that they are not alone and learn effective problem-solving.

It Takes More Than Love is thorough, yet concise; informative, but with an easy-to-read style that doesn’t hinder the reader’s understanding with jargon; straightforward and user-friendly, but never condescending. It reads as if the authors were sitting and talking with the reader. This is a great book for anyone exploring caregiving or already caring for an aging adult.

Publisher: Health Professions Press
Publish date: May 15, 2000
346 pages
ISBN-10: 1878812505
ISBN-13: 978-1878812506

Through the Looking Glass Helps Parents with Disabilities Cope

2008-08-01T22:13:00Z

Through the Looking Glass was founded in 1982 to address the unique needs of families made up of people both with and without disabilities. Instead of focusing just on the individual living with a disability, Through the Looking Glass addresses the family living with a disability as a whole, looking at their physical, psychological and logistical needs.

Through the Looking Glass has three key areas of work focus:
-the National Resource Center for Parents with Disabilities
-the local service offerings in the San Francisco Bay area
-research the organization conducts to help better illuminate the needs of families that have members with disabilities

The National Resource Center for Parents with Disabilities provides everything from online information to counseling referrals to parents living with a disability. Topics that have experience addressing include pregnancy and childbirth, adoption, and custody issues. In fact the legal program at Through the Looking Glass is involved in almost 1,000 cases a year related to custody challenges on the basis of a parent's disability.

The Resource Center is also committed to putting parents with disabilities in touch with each other both online and off to help them learn from each other's experiences. To that end, the Resource Center runs workshops and training programs and can even provide information on adaptive baby care equipment.

In the Bay Area, Through the Looking Glass is able to provide more immediate, in-person services. Counseling and intervention services based in the home for a wide range of families living with disabilities are available. This includes services for families with Deaf members, support groups for parents living with different types of disabilities - physical, visual and cognitive -or parenting children living with disabilities, as well as child development assessments and parenting classes.

Through the Looking Glass also conducts research on the unique needs and experiences of families living with disabilities.

Through the Looking Glass is, at its core, about diversity and seeks to facilitate communication between the broad spectrum of people whose lives are impacted by disability. Through the Looking Glass believes that, while not always easy, discussions between parents living with disabilities and parents without the experience of raising children with disabilities are valuable.

Through the Looking Glass has 30 staff members, and most of them are people living with different disabilities. This staff includes counselors, therapists, social workers and family educators.

Those 30 staff members have quite a reach. They've provided training sessions to people in all 50 states, as well as 44 countries. These training sessions don't just target the members of families living with disabilities but lawyers, social workers, teachers and other professionals who are looking to better understand how to serve their community.

Through the Looking Glass is considered a major pioneer in meeting the needs to families living with disabilities.

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How to Create a Family Caregiver's Home Health Emergency Care Plan

2008-07-10T20:41:00Z

Having been a caregiver for my stroke survivor husband for the past seven years, and having share-cared for my dementia inflicted father the five years before my husband's stroke, I've learned a lot about the need to write an Emergency Care Plan.

Family caregivers occasionally get sick or have other set backs that can put their care recipient in a dangerous position if an Emergency Care Plan is not already set in place. Unfortunately, I know from being a mentor on a stroke support website that most caregivers don't have an Emergency Care Plan and that is a potentially life-threatening mistake.

What should be in your plan? An Emergency Care Plan should include all essential information another person needs to know to take over in your absence, be it a few days or longer. When you write your first plan, take your time and be as detailed as you can. Updating the plan periodically after that will only take a few minutes.

The seven essential pages to include in an Emergency Care Plan are:

1. Medical Emergency Contact Information
When you create your own Emergency Care Plan be sure your medical contact page includes the names, addresses and phone numbers of all the doctors your care recipient sees to manage their condition. List all contact information for medical insurance companies. Also include the dentist, hearing center, eye doctor and other medical services you may use for lesser emergencies that could come up in your absence. In addition include your hospital, pharmacy, wheelchair repair service (if applicable), and the contact information for the person who holds the Durable Power of Attorney for Health Care and the contact information for the successor should the primary patient advocate is not able to act.

2. Family Contact Information
List all the people who'd need to be called should there be a medical emergency requiring hospitalization of your care recipient. Also make a note of which family or friends might be willing to patient-sit in your home for an hour or two, if needed, to back up the person who takes over in your absence.

3. Health Condition Information
This page of the Emergency Care Plan needs to list of all the medical conditions that apply to your loved one.

4. Medications and Testing Needs
On this page include not only the name of the drugs and dosages your loved one needs but also the times of days to dispense the medications, where you keep the bottles in the house, and what each drug is for. If testing is required to manage something like diabetes or high blood pressure list the frequency and target ranges and what to do if your loved one tests out of the range.

5. Daily Routine
The family caregiver assists their loved one in way they often take for granted but it's important to pass these things on to someone taking over in a temporary situation. When you make your Emergency Care Plan be sure to write out detailed instructions for: special toileting requirements, transfers, showers, dressing, exercises or therapies, and daily routines, etc.

6. Meals and Food
List any special dietary needs your loved one has including the time frames meals are usually served. List all foods and liquids that are not allowed because of drug interactions, swallowing issues or allergies.

7. Home Health Care Services
In a worst case scenario where an outside service (rather than another family member) needs to be called your Emergency Care Plan should include contact information for professional home care services that you've checked out and/or prefer to use for your family member. If there are senior daycare services available where you live, list those too. A family member might be able to better manage taking over for you if they can use daycare. When you finishing writing your Emergency Care Plan be sure to carry in your wallet an easy-to-find paper telling where you keep your plan, should you get in an accident and not be able to talk.

The above seven pages are essential for your Emergency Care Plan. My plan also includes: a.) A page for our vehicle that includes how to transfer my husband between the car and his wheelchair, how to operate the Bruno chair lift, insurance information, and who we use for service; b.) A page for the care and feeding of our dog including some boarding options should that become necessary; c.) A page for the care of our house and plants including insurance information and who we call for appliance repair, etc.; and d.) An information page about my own health issues, my POA and medical contacts.

No one is immune to having a medical event or accident, caregivers included. If you are a caregiver without an Emergency Care Plan start planning yours today. If you know a caregiver - perhaps a parent, grandparent or friend - e-mail this article to them via the link at the top. It could literally save the life of someone you care about or take a lot of stress off from anyone who has to take over care in an emergency situation.

Lotsa Helping Hands Gives Hope to Caregivers

2008-07-10T20:25:00Z

Caregivers have a big responsibility and it's sometimes hard to keep track of things, let alone try to keep everyone else updated. There are many services, activities, doctor visits, events and so forth that will need to be planned and assigned for someone with disabilities. With the help of Lotsa Helping Hands, caregivers using this free service will no longer have to stress as much about this aspect of long-term care. LotsaHelpingHands.com provides a simple way for caregivers to organize events, resources and tasks that are involved in caring for a loved one with disabilities. It is a more organized way of keeping those who are involved in the person's care and well-being (even those who do not know each other) informed and up to date about events as well as providing resources and updates.

A designated coordinator, which could be a family member or friend, simply has to sign up, which only takes a moment. From there, the coordinator is provided with a password-protected private online community of resources for caregivers, family and friends. Once the community has been created, the coordinator can invite others to join and participate. Those who join could be family, friends and volunteers, as well as caregivers. It is up to the organizer who they feel should join. Optimally, it should be a good mix of all of the above to provide access to the most resources possible, depending on the individual's needs.

Accessible to members of the community will be private message boards, photo storage, a wall for well wishes, and also sections for sharing Websites, resources and documents. The easy-to-use templates on the community board allow for families to quickly make it known what is needed for the person with disabilities, what resources are available, as well as how each task should be carried out, including restrictions, times, dates and more. Volunteers, family, friends and caregivers who have joined the community can sign up to assist with any of the necessary tasks. With the help of LotsaHelpingHands.com, caregivers of those with disabilities will have a much simpler way to organize all the tasks at hand and likely have much more time to actually spend with the person being cared for, versus stressing over all the little details.

Source:
http://www.lotsahelpinghands.com

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Book Review: Share the Care

2008-07-08T22:45:00Z

Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill by Cappy Capossela and Sheila Warnock, featuring a foreword by Sukie Miller, offers a unique solution to the often confusing and overwhelming challenges of caregiving by suggesting a caregiving team. Capossela and Warnock write confidently on the difficult subject of caring for a seriously ill loved one.

Beginning with the case that launched their method—that of a terminally ill cancer patient friend—their hopeful tone will help caregivers move past the fear of a fearsome illness and into realistic, well-organized advice and instructions for assembling and organizing a caregiver "Funny Family" made up of friends, family members, neighbors, coworkers, and other acquaintances depending on the reader’s own situation.

The Share the Care system is suitable for recent or longtime caregivers and for short or long-term care. It guarantees every job will be done without any one person doing too much."You don't have to do things you don't want to do, you don't have to do things you are afraid to do, you don't have to do things you feel you're not good at," say Capossella and Warnock. "The power is in the group. Among all of you is the solution to any problem."

Besides valuable insight, this book includes a simple-to-use workbook section containing all of the forms (sample, paper, or online) the user would ever need to maintain communication and organization within the group.

The workbook also addresses the emotional as well as the logistical aspects of caregiving by providing reassurance, emotional bonding exercises, the do's and don’ts of conversation with people with terminal illnesses, and more. The 2004 revision of the popular 1995 edition also includes new information on professional help and long-distance care. A directory of helpful associations, books, web sites, newsletters, and magazines conclude the book.

In the crowded field of caregiving manuals and guides, Share the Care stands out for its simultaneous accessibility as a reference and meticulous coverage of every phase and eventuality of a sensitive situation. Its highly structured approach makes it invaluable in a crisis, medical or otherwise. Share the Care is essential for popular medical collections, hospital and public libraries of any size, social workers, chaplains, gerontologists, psychologists, counselors, and anyone with a situation on their hands. This highly readable, modifiable, step-by-step "how to" book offers a practical, compassionate answer to friends’ and family’s number-one question: "What can I do?"

Publisher: Fireside
Publish date: October 26, 2004
368 pages
ISBN-10: 0743262689
ISBN-13: 978-0743262682

Sibling Resources

2008-07-07T22:08:00Z

When it comes to caregiving for adults with disabilities, a key source of help often is overlooked. The focus is on their parents, or on their children, if they have any. But how about sibling resources, the brothers or sisters who are closest in age to the sibling with a disability? There were decades in America when siblings and family members of multiple generations remained far closer in their own homes. This started to break down with the advent of personal transportation by a rail cars, vehicles and airplanes. The divorce rate also skyrocketed to today's 50 percent.

America's family structure has started to break down. So nowadays, what happens when a sibling faces a need for support from loved ones? "Brothers and sisters of adults with disabilities are often overlooked by agencies who serve people with special needs, even though siblings generally have the longest family relationship and their numbers are vast," states a report from the South Carolina Department of Disabilities and Special Needs. Think about it. With whom were you closest as a child? Was it your mother, your father, or your closest sibling(s)? Even if your answer your mother or your father, they now may be among the dearly departed. Odds are far greater that a close sibling is still around, possibly a sibling with a disability with whom you should bond.

Maybe the disability was congenital from birth, and the sibling assisted in caregiving during childhood before the two of them became distant. Maybe the disability emerged gradually during adolescent or young adult life. Or possibly the disability took place suddenly, the result of a car crash or some other sort of accident. "Service providers and families must recognize the role of brothers and sisters in providing support to people with developmental disabilities," the report states. "They must consider the willingness and capacity of siblings to expand their roles." Willingness indeed. Some siblings may have lived close to one another from childhood into their adult lives, and they naturally will gravitate to help one another. Others may have broken their bonds, only to find themselves emerging back together.

Each situation is so unique, and there is no universal coverall for seeking resources. Even so, here are some factors in sibling disability care resources to consider:

Guilt. A potential sibling caregiver may feel guilty because they don't have a disability, or feel they did something to cause their brother's or sister's disability.
Embarrassment. Do you really want to help wash you brother or sister's diaper?
Fear. If your brother or sister is diagnosed with MS, for example, are you afraid that caregiving may cause your same fate?
Resentment. Why is the sibling getting all of the attention?
Burden. You give so much effort to care for a sibling with a disability, but your sibling does not seem to appreciate it.

As you read and review this article, do you feel a need for a sibling resource to help you make or to maintain connections with a vital loved one? If so, these resources are strongly recommend: Sibling Support Project, National Family Caregivers, the National Alliance for Caregiving and Compassionate Friends.

Sources:
www.siblingsupport.org
www.nfcacares.org
www.caregiving.org
www.compassionatefriends.org
www.state.sc.us/ddsn/pubs/matters/matters.htm

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Adult Day Care

2008-06-30T17:35:00Z

Adult day care is needed when an adult with a disability cannot care for themselves. It not only provides the care they need, but it also provides social interaction. Unlike nursing homes that provide constant, long-term care, adult day care is usually limited to normal business hours during each day. It's also a valuable service for giving the persons who are responsible for the adults' primary caregiving time away from their charges.

Although the specific provisions that each adult day care offers can differ, basically, these facilities supply necessities like transportation, meals and snacks, personal care, health care, therapeutic activities and social activities.

What Are the Options of Choosing Adult Day Care Centers?
Which day care center you choose depends on the needs of the adult in relation to their disability and what type of caregiving they need. The three basic options are: social centers, medical centers and specialized care facilities. Social adult day care centers provide activities and a certain amount of health care. Medical adult day care centers also provide activities, but they're geared toward people who need a higher level of health care and therapeutic services. Adult day care centers that are specialized care facilities deal only with adults who have specific illnesses and disabilities such as dementia and Alzheimer's.

If you're not sure what level of care the adult needs, consult his/her doctor as well as other healthcare professionals who are involved in their medical caregiving. How much care each adult requires is usually based on their disability.

How to Locate Adult Day Care Centers in Your Area
Finding adult day care in your community can be as easy as looking in the Yellow Pages of your local phone directory. However, getting referrals from the adult's doctors and other healthcare professionals can lead you to the best facilities. Also, contact agencies on aging, senior citizens' centers and The National Adult Day Services Association.

How to Evaluate Adult Day Care Centers
Once you have found a few adult day care center in your area that can sufficiently meet the needs of the adult you're a caregiver to, the first step in evaluating each facility is to find out some basic information. You'll need to ask these questions:

1. Is the facility accepting new applicants?
2. What are the eligibility requirements of the adult day care center?
3. What specific type of care do they offer adults?
4. What is their application process?
5. What are their hours of operation?
6. Does the facility offer transportation?
7. What kinds of activities are provided?
8. How long has the facility been in business?
9. Who owns or manages the adult day care center?
10. Are they licensed or certified by the state?
11. How much and what type of education does their staff have?
12. What is the adult day care center participant/caregiver ratio?
13. How much do their services cost? Do they charge by the hour or day?
14. Are there additional charges you need to be aware of?

The next step in appraising each facility is to pay them a visit. Ask to look around the premises and see for yourself the care and services they offer. (If any adult day care center refuses to let you drop in to see how it's operated, be suspicious. Reputable facilities should have nothing to hide from the public.) Ask for brochures and other handouts they may have, talk to the staff and use your senses to judge the center. Ask yourself these additional questions:

1. Is the building and the premises clean and well maintained?
2. Does the adult care center provide a safe environment?
3. Does the staff seem professional and knowledgeable?
4. Do the meals or snacks look appetizing and healthy?
5. Are the adult participants being well cared for?
6. Do they have references, people you can call?

Once you have found out the answers to all of your questions, you'll be able to wisely choose the best adult day care center that will meet your needs.

Sources:
http://www.nadsa.org/adsfacts/default.asp
http://www.eldercare.gov/eldercare/Public/resources/fact_sheets/adult_day.asp
http://www.helpguide.org/elder/adult_day_care_centers.htm

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Family Caregiver Alliance Helps Caregivers Come Together

2008-06-23T23:47:00Z

Caregivers of adults with disabilities deserve a special voice to show the public all they do and Family Caregiver Alliance is helping to provide that. The first organization formed to address friend and family caregivers providing long-term care, FCA has been around since 1977. What started out as a small group of caregivers and community leaders more than 30 years ago has grown significantly.

FCA has helped countless families in a number of different ways over the years, providing various resources and assistance to those offering disability care. Most recently, the FCA has developed the Family Care Navigator, which is a state by state resource for caregivers of those with disabilities.

At the Family Care Alliance Web site, the Family Care Navigator is easily accessible. A caregiver searching for information on government, nonprofit or private programs need only click on the state of residence. If it is services that are needed, that information is also available on the Family Care Navigator.

General information and resources are also available. A list of some of the most common questions is prominently displayed for easy access. For further research and information, check the free fact sheets and publications Family Care Alliance displays on the website. Printable versions are available.

Because providing long-term care in a family caregiver situation can sometimes be difficult, frustrating or otherwise straining, there is also access to support groups and organizations for long-term family caregivers from the FCA website.

Family Caregiver Alliance has received various awards and grants. The organization's Web site is extensive and has been called an invaluable resource for long-term caregivers of adults with disabilities.

Source:
www.caregiver.org/

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Maintaining Independence When You Live Away From Your Kids

2008-06-03T21:16:00Z

If you choose not to move near your kids as you age, there are steps you can take to ensure that you keep your independence, despite your disability. Besides keeping your freedom, you'll need to alleviate any fears they may have of you living so far away.

1. Set Up a Support Network
It's normal for people to watch out for aging seniors, especially ones that are alone, as well as their neighbors who have a disability. This is especially true in small communities where everybody knows everyone. This informal "Neighborhood Watch" can help ensure that you're safe and sound. In order to hold onto your independence, you'll also need to set up a support network that will cover your needs.

For example, you may need someone to mow your lawn every week, get you groceries, do odd jobs around your home, etc. Where can you find people to help? You can ask neighborhood kids about doing your yard work for pay. Check with family, friends and neighbors about doing your grocery shopping, as well as helping out with your other needs. You can also place a "Help Wanted" ad in the local newspaper, or on the bulletin board of your church. Don't forget to check at any clubs or organizations that you belong to find people who can make up your Support Network so you can keep your independence.

2. Set Up Daily Communications With Your Kids
No matter how busy your kids may be with their daily lives, keeping communication with you on a regular basis will help ensure your safety. It will also help alleviate their fears about you aging, having a disability, living alone, and not living close to them.

Setting up daily communications with your kids can be as simple as them calling you at a certain time. Or, you can call them to check-in every day. If, by chance, your kids don't get an answer when they call, or you don't call them, they should have a list of neighbors they can contact to look in on you.

Besides enabling you to hold onto your independence, maintaining daily communications with your kids will give you and them a chance to share daily happenings.

3. Set Up An Emergency Response Plan
Part of aging and having a disability is having an emergency response plan set up whenever you need assistance. The help you need may be medically related. Or, it may be needing the services of the local fire department, for example. Besides providing you care in case of a matter of life and death, having an emergency plan will help give your kids who don't live near you peace of mind.

Setting up such a plan can be as easy as subscribing to one of the many companies who provide aging persons, or people with disabilities, wireless devices that have call buttons. These devices are usually worn around your neck during your waking hours. That way, you have constant access to emergency personnel in case you need it.

Having a cell phone you can use to easily call for help with the push of one button is also a good idea for aging people, or for anyone with a disability.

4. Set Up a Long-Distance Financial Arrangement
If you choose not to move closer to your kids, you'll need to set up a long-distance financial arrangement with them in regards to your money. Because you're aging or have a disability, you may not be always be able to pay your bills and handle your affairs. For these occasions, you'll need to set up a long-distance financial arrangement. That way, your kids will be able to access your money and use it to pay your expenses.

The best way to decide how this arrangement will work, is to talk to your banker, as well as to your attorney. Tell them what you need to do, and ask about the available options. You may need to add your kids onto your checking account, for example. Or, you may choose to give your kids a Power of Attorney so they can handle your affairs any time you're unable to.

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Family Caregiver Suzanne Mintz Uses Life Experience to Advocate for Caregivers

2008-05-27T20:55:00Z

When Suzanne Mintz’s husband, Steven, was diagnosed with Multiple Sclerosis (MS) in 1974, the two felt the same shock that many young couples facing a new disability do.

“The diagnosis came at a time in our lives that was so unexpected. When you get married and say ‘In sickness and health,’ you don’t expect it [sickness] to be anything more than a common cold,” she said.

As Steven’s illness progressed quickly, Mintz took on the role of his primary caregiver. It is a role that she’s held throughout the majority of the last 34 years, and that has allowed her to become a leading figure in caregiving outreach and advocacy.

Mintz is the co-founder and current president of the National Family Caregiver Association (NFCA), a non-profit that provides support, information, and resources to the more than 50 million family caregivers living in America. The organization, founded in 1993, receives an average of 50,000 monthly visitors to its Web site.

The NFCA’s mission is to empower family caregivers to act on behalf of themselves and their loved ones, and Mintz has used her own personal story to illustrate the ups and downs of family caregiving and the emotional toll it can have.

At various speaking engagements across the nation, and in her new book, A Family Caregiver Speaks Up, she speaks candidly about the depression and isolation she has experienced as a family caregiver. Mintz believes that it’s important for family caregivers to recognize their feelings of discontent and voice them.

“If you keep everything inside sooner or later it’s going to boil up and spew out, it could come out in anger, it could come out in depression,” Mintz said. She adds that when caregivers share their feelings they often gain comfort from learning that others are thinking and feeling the same things as they are.

In order to help facilitate the process of catharsis, the NFCA has created the National Family Caregiver Story Project, which is a collection of first person accounts written by family caregivers. The project not only allows family caregivers to unleash their feelings on the page, but also exposes them to those who have experiences similar to their own.

The hope is that these resources will alleviate some of the depression that caregivers experience. According to Mintz, family caregivers who care for their parents are twice as likely to experience depression as the general population, while those who care for their spouses are six times more likely to suffer from the condition. Additionally, the emotional stress of caregiving often causes caregivers to age prematurely.

However, despite the tough statistics, Mintz says that “there are definitely rewards to family caregiving.” She believes that as the population continues to grow older, the need for caregiving will increase and more community-based resources will need to be tapped as family members find themselves unable to shoulder the burden alone.

The winner of the 2006 national Purpose Prize for her social work with the NFCA, Mintz has been widely recognized for her achievements in caregiving. Her passionate advocacy has drawn attention to many of the previously neglected issues surrounding caregiving, and provided support for many caregivers who often have nowhere else to turn.

Read more
To read a review of Suzanne's latest book, see A Family Caregiver Speaks Up: It Doesn’t Have to Be This Hard.

Self-Care System Critical to Emotional, Physical Health of Caregivers

2008-05-21T16:50:00Z

It’s long been recognized that caregivers are critical to the well-being of many individuals with disabilities. Recently published research suggests that what we’ve known anecdotally all along is now confirmed, as well: self-care is critical to the well-being of caregivers themselves.

The study looked at the emotional support and physical help available to a select group of caregivers for stroke victims, as well as their general health. Half of the participants had access to online support and coaching, and the other half had none. After checking with participants at intervals of three, six, and twelve months after the initial stroke event, the researchers found that those caregivers who had had access to the online support reported better health than those who had not.

As noted in their research findings, the study authors felt that it was important to ensure that all caregivers have sufficient and ongoing self-care support to enable them to remain healthy and positive in their caregiver roles. They further noted “the need for nurses to assess caregiver health later in the caring process,” and the importance of being aware of “its relationship to emotional support.”

For further information: “Emotional Support, Physical Help, and Health of Caregivers of Stroke Survivors,” Victoria Steiner, Linda Pierce, Sean Drahuschak, Erin Nofziger, Debra Buchman, Tracy Szirony, Journal or Neuroscience Nursing, vol 40, no 1, February 2008.

Long-Term Care Planning

2008-05-14T19:49:00Z

What is long-term care? It typically includes where you will live and what kind of care or assistance you will need:

Where will you live if you can no longer manage your present home?
What are the options if you must make other living arrangements?
Who will you live with?
Who will be an assistant or caregiver?
What will it cost?
Will you have to move to an adult community or somewhere away from your family?

Although these questions have probably crossed your mind many times, many of us have put off dealing with them just like we put off writing advanced directives or a will. Experts estimate that at least 60 percent of all people will need extended help in one or more of the areas above during their lifetime.

Many options may be available in your area to help you determine what will be best for you. Community-based services like home health and caregiver assistance can be used at your home. These may be covered by Medicare, Medicaid, veterans benefits, or insurances. A variety of alternative living facilities includes assisted-living apartments, assisted-living facilities, boarding homes, retirement homes, nursing facilities, and adult communities.

Don’t Rely on Medicare
Do you know that Medicare doesn’t pay for most long-term-care needs? They may pay for services such as therapies with a physician’s order, but this is only for short term. Don’t be caught unprepared thinking Medicare will take care of you if you have long-term-care needs in the future.

Long-term-care needs for people with spinal-cord injury (SCI) may not fit into the typical outlines found in many Web sites such as www.medicare.gov, www.longtermcare.gov/ltc, or www.longtermcare.net.

You may already need assistance for activities of daily living. The aging process with SCI will present additional needs physically and medically. When your needs can no longer be met at home, another type of facility-based setting for extensive care needs and/or supervision may be required.

Paying for long-term care can be confusing, but there are many options to consider. If you have the funds, private pay could provide services in your home. Long-term-care insurance is another option, but this requires monthly payments and involves eligibility requirements.

Another option is a viatical settlement: If you are terminally ill or chronically ill, you might be able to sell your life insurance policy to another person (a third party). You usually have to sell your policy for a lower amount of the full face value. Before making a final decision to make a viatical settlement to pay for your long-term-care needs, you may want to contact your State Attorney General Office or your State Department of Insurance. (Source: www.medicare.gov)

Reverse mortgages are another option to look at. This is a special type of home loan that lets a homeowner convert a portion of the equity in his or her home into cash, but it has advantages and disadvantages as well. For more information about reverse mortgages, check out the U.S. Department of Housing and Urban Development Web site, www.hud.gov.

The Department of Veterans Affairs (VA) may provide long-term care for service-related disabilities or for certain eligible veterans. There might be a waiting list for VA nursing homes. VA also provides some at-home care if you are eligible. Visit the VA Web site, www.va.gov, to download a Veterans Benefits fact sheet or call 800-827-1000 to obtain information about available services in your area.

One last source may the Programs of All-inclusive Care for the Elderly (PACE) to pay for your long-term-care needs. It is a new benefit that features a comprehensive service delivery system and integrated Medicare and Medicaid financing. PACE combines medical, social, and long-term-care services for frail people. For most participants, the comprehensive service package permits them to continue living at home while receiving services rather than being institutionalized. PACE is available only in states that have chosen to offer it under Medicaid. You can learn more about the PACE program at www.medicare.gov.

Learn, Then Plan
The important thing to know is that by being aware of the possibility of having to make long-term-care arrangements, you can plan accordingly. Learn what options are available in your community. Know what the costs may be and how you will be able to afford your future needs.

By planning ahead, you may be able to start a savings plan or purchase long-term-care insurance. When looking at this option, there are many conditions to the policies you may purchase. Ask a company to send you information, read it over, talk with someone who has this type of insurance, and then call the company with your questions.

Having plans in place will bring a certain peace of mind knowing you will not be a burden on your bank account or your family. By planning for the future, you are more likely to be able to remain at home and receive community services instead of having to move to an alternative facility. Future-planning kits are available online at www.longtermcare.gov.

Relationships with You, Your Partner and the PCA

2008-05-09T20:39:00Z

Personal care assistants, or PCAs, can provide tremendous help to a person with disabilities along with their partner. How? A good PCA can perform household chores and personal duties that can cause distractions in a relationship and, at times, tear away at it. Yet, conversely, a poor PCA can do just the opposite. For this reason, it's important to follow a few do's with any PCA that you invite into your life. Here are the top five.

Do...

1. Create a list of house rules and job duties with your partner to be shared with the PCA. Before you start the interview process with a PCA, sit down with your partner and create a list of house rules and job duties. This list should include areas of the house that are off limits, chores and times in which you want the PCA to retreat because of an uncomfortable situation like an argument. By doing this task together, you and your partner can agree on what is desirable in your household and eliminate (or reduce) any future misunderstandings with your PCA. It will also help avoid friction between you and your partner because you will both be on the same page.

2. Share your list of house rules and job duties with the PCA prior to hiring him or her. It's important to tell your PCA exactly what you and your partner want during the interview process. By doing so, you will give your PCA a chance to decide if he or she can actually do the job. This time is also when you get a general feel for the person. If anything in your gut is telling you that this PCA will not be welcomed by your partner or has a hidden issue, don't hire him or her. Go with the feeling and move onto the next potential candidate. Upon hiring, give the PCA a copy of your list, so he or she can refer back to it as needed.

3. Explain to your PCA that your partner is equal to you in your household. Certain PCAs won't respect the partner of a person with disabilities because he or she isn't necessarily the "official" boss or the actual client. As a result, it's up to you to set the record straight. Explain to the PCA that your partner is equal in your joint household and to be respected by him or her even if all of the care is in regards to you. Also, if there are certain areas of the PCA duties that are to be dictated by your partner, let the PCA know. It will help clear up any confusion and strengthen your working relationship.

4. Agree with your partner to discuss any problems with the PCA in private first. If you or your partner gets upset with the PCA, talk about it in private first. Then, only after you have agreed on a resolution, discuss it with the PCA. Why? You and your partner want to be a united front in your household. In the case of any household issues, you both should be informed and decide on what happens, even if it means changing a few household rules or letting the PCA go.

5. Let go of a PCA that is causing household strife. This final point is very important. People can be easily trained to do a job, but relationships take work and effort. So if you or your partner is having a bad time with the PCA, don't be afraid to let him or her go. It's better to have a house full of peace and love and be looking for help than to have a house full of friction and hate because of the help.

Use these five do's and you and your partner will be able to form a great working relationship with almost any PCA. The expectations will be clear and, as a result, the frustrations at a minimum. It's the best way for everyone to work together.

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When Your Loved One Can't Stay at Home

2008-04-29T17:52:00Z

Sometimes changing needs can be met by stepping up services and assistance from paid or informal caregivers or by moving closer to family. Other times it's necessary to consider options for long-term care. The best time to plan for this is long before it is needed.

Planning ahead permits you to thoroughly research options and allow time to move up the lengthy waiting list that many good facilities have. And, in the case of nursing homes, applying while money is less of an issue and you can afford to foot some of the bill yourself may open more doors than if you are relying on Medicaid alone. Nursing homes get a higher reimbursement rate from private-pay clients and are often eager to have them. Finally, planning ahead allows you to arrange finances in the most helpful way.

Options for care

Skilled nursing facilities (nursing homes) offer long-term, around-the-clock care for people with significant illnesses or mental or physical disabilities. Some have units that specialize in caring for people with Alzheimer's disease and other forms of dementia. But a nursing home needn't be the only choice that affords your loved one sufficient assistance and you a life of your own. Depending on needs and budget, you may wish to consider some of these possibilities:

Senior apartments and subsidized senior housing enable residents to live independently, but assistance with tasks such as shopping and laundry may be available. Buildings are designed for maximum accessibility.
Assisted-living facilities have private dwellings plus varying amounts of assistance with daily tasks and nursing supervision.
Continuing-care retirement communities offer a series of options for increasing services and skilled nursing care. Residents might start with an independent apartment with an on-site medical clinic or a bit of extra assistance; over time, they take advantage of gradually increased levels of care. Some communities include a nursing home for eventual use by residents.
Group homes, sometimes called board and care homes, offer help with activities of daily living for those not in need of nursing home services. Often, these homes are not carefully monitored, however, and Medicare or Medicaid funds do not always pay for them. One innovation in group homes, the Green House Project envisioned by geriatrician William H. Thomas and first launched in Mississippi, offers medical care and substantial services to up to 10 residents in a homey atmosphere.

A local agency on aging, a geriatric care manager, or a social worker should be able to describe local options. The Centers for Medicare & Medicaid Services provides online tools that can help you assess nursing homes and home health care agencies that are on its approved list (see "Resources"). Consider recommendations from many different sources, but also visit several facilities of the same type before making any decisions.

A caregiver's perspective

"If my father became incapacitated, my mother couldn't take care of herself. She doesn't drive, has limited mobility, and is becoming increasingly forgetful. They moved to an independent living facility that offers some assistance. Right now, that includes one meal a day, and they have to open their door by noon or someone calls to check on them. There's also a full medical clinic, a pool, Jacuzzi, and store in the complex. They chose this community so they wouldn't be isolated. On a snowy day, I don't have to worry about whether they have milk. They can eat breakfast, lunch, and dinner there."

— Liz, 44, whose 79-year-old mother recently had a hip replacement and whose 78-year-old father has heart arrhythmias

Making a move

Moving someone you love to an assisted-living facility or a nursing home is fraught with painful feelings for all involved. Yet putting aside worries over safety and medical care can be a great relief. And if a move frees up time for you to spend together in ways that are more pleasurable and expands social opportunities for everyone involved, it may prove to be a blessing. Rather than focusing only on the guilt and sadness you feel, put some energy toward imagining how you might ease this passage. Consider whether you can do the following:

find ways to make this new place more comfortable and homey
call at prearranged times just to chat
stop by often for brief visits, such as during meals
listen to music together if conversation is hard to sustain
send e-mail, letters, or the occasional book
make connections with staff and other residents
plan regular outings to a movie or restaurant, a drive to a well-loved place, or time with family and friends.

Source: from Harvard Health Publications, Copyright © 2008 Harvard University. All rights reserved. Harvard Medical School does not endorse products.
Used with permission of StayWell.
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Care for the Caregiver

2008-04-29T17:51:00Z

If you're fortunate, many of the tasks you undertake for your friend or family member feel deeply satisfying to you. Perhaps they offer a way to return loving attention you received in the past or anchor the value system or religious tenets by which you try to live. Even though you're bound to experience strain and difficult days, such a sense of purpose may help lighten the load.

Not everyone feels this way, of course. Nor is it possible to count blessings you do feel every moment of the day. Sometimes the burden is too heavy to bear even when you love the person you are helping. Some situations are especially hard — dementia or terminal illness in a loved one, for example, or the job of caring for a relative who is difficult at best or a parent who was negligent or abusive.

It pays to acknowledge that caregiving is a tough, lonely job at times. Research shows higher rates of illness and even death among caregivers. Providing constant care is especially demanding, and nearly 30% of those who do this report health problems.

As a caregiver, you frequently act with someone else's happiness and health in mind. Why not give the same consideration to your own? By refreshing yourself and reflecting on ways to smooth a sometimes rocky road, you'll feel better and be better able to continue to offer help and support.

Gaining support

Support may come in many guises. A combination of caring family, friends, and neighbors — and professional or government services — often helps.

Gain time for yourself. Try your local agency on aging or BenefitsCheckUp to see what options are available for respite care and other services. Organizations like the American Cancer Society or the Multiple Sclerosis Foundation may be able to link you with low-cost or free programs and services that can help people of any age. AARP and government publications can guide you in lining up caregiver services and choosing among long-term care options. A consultation with a geriatric care manager or social worker may quickly identify local options.

Ask for help. Tell friends and family the job is too much for you alone. Ask them to help brainstorm solutions. Always accept help when it's offered. Some people will make specific offers of help. Encourage others to choose from a list of what's needed, or assign jobs you've matched to their capabilities. Those who seem reluctant to do hands-on tasks may be able to help by covering costs, tracking down available government assistance, or taking over bill paying. Sometimes getting a few promises in place — to handle transportation to medical appointments or dinners on specific days — makes a big difference. Remember to thank everyone. A little pat on the back can help keep someone on the job.

Tap into religious communities. A religious or spiritual community can be a strong source of assistance if you or the person you are caring for belongs to one.

Be honest with the person receiving care. Acknowledge that it's not easy to think about sharing care among more people, but explain that your own health and well-being demand it. Be sensitive to the person's feelings — about being a burden, about spending money, about having a stranger helping with personal care — but press your case firmly. One way to do so might be to say, "I wish I could continue doing ___________, but I just can't. You're very important to me and it would be a great relief if I knew that your needs and my needs were being met."

Garner emotional support, too

Emotional support can come from many quarters. A sympathetic partner or spouse is wonderful, but if he or she is sharing the work of caregiving, you may feel constrained or defensive at times because you don't want to complain or be perceived as sniping at someone else to do more. Or you might feel guilty about your feelings or the cost to your relationship that caregiving exacts.

Lean on friends. Friends who listen — and offer advice only when you ask directly — are invaluable. Try to choose people who aren't judgmental. Ask outright if you can use them as a sounding board whenever the need arises. If just one person in your circle can do this, try not to overburden him or her. Consider other ways of seeking support as well. A religious community can be a source of comfort and emotional support.

Try a support group. Many organizations, hospitals, health care plans, and religious groups offer support groups for caregivers. A doctor, nurse, or social worker may be able to steer you toward one. Support groups are a good place to blow off steam and share ideas with people who are facing similar situations, yet are not directly involved in yours. Some support groups are online, which can be easier for homebound caregivers. Hot lines can help as well, especially when a crisis strikes suddenly. If you're not comfortable with a group, a geriatric care manager may be able to provide needed support and perspective.

Consider therapy. Sometimes the best support you can seek is therapy. A study published in the New England Journal of Medicine in 2003 noted significant depression in 43% of family members caring for loved ones in the final stages of Alzheimer's disease. Other research suggests that 46% to 59% of caregivers could be described as clinically depressed. If you frequently feel depressed, overwrought, or overwhelmed, get help from a psychiatrist or therapist. If you don't know where to turn, ask your doctor for a referral.

A caregiver's perspective

"You have to know your own limits and boundaries. I need one evening off a week. At this point my mom is capable. We're hooked up by cell phones, and her dinner is prepared so she can microwave it. She's got her TV shows and her remote. I let neighbors know when she's home alone. She's also got a Lifeline. She's left alone for some periods of time, and that's what she wants."

— Marie, 41, who moved in with her mother, who'd suffered a serious stroke

Seeking balance

When you're a caregiver, the scales can tip wildly when you least expect it. That's hard, particularly if you're already feeling stretched. A minor medical emergency makes it impossible for you to get to work all morning, or to focus when you do. Your teenager is furious because he'd like a ride to the soccer field and you are overbooked with tasks that can't wait. You'd love to have a night out with friends, but your mentally confused mother lives with you, and who would stay with her while you are out? Seeking balance doesn't automatically ensure that these situations will change. But redistributing some of the weight can make your days easier, more enjoyable, and more productive.

Work and caregiving

If you work outside the home — as an estimated three out of five caregivers do — you may feel pinched between warring responsibilities. When you cannot afford to lose your job or to seem unavailable for new work challenges, the conflicts escalate. The following tips may help you strike a better balance.

Check work-life or employee assistance policies. Many companies find it pays to ease the burden on valuable employees by offering family leaves or flexible hours, for example, or picking up part of the tab on adult day services or home aides.

Inquire about flex-time, a different shift, or telecommuting. Most flex-time policies require set hours, but your supervisor may be willing to accommodate your needs by allowing you to come in late when necessary as long as you make up the time. Taking a less desirable shift may mean you can work shorter hours or work during hours when someone else is available for caregiving. Telecommuting from home can be helpful, but be aware that it can be hard to get work done if the person you care for will be there and is intrusive or suffers memory loss.

Take a pay cut. Part-time work or job sharing can ease your load if your employer accepts this and you can afford it.

Set work priorities regularly. Use a day planner or simple lists. Map out time for uninterrupted work on projects. If you know you have an important meeting, arrange backup emergency plans so that you can get there even if something goes awry at home. That may mean asking your partner, a family member, or a neighbor in advance to cover for you or even paying a professional to do so.

Use lunch time and breaks judiciously. During lunch time, it's tempting to rush around doing all your errands or to make up for missed work, but this can add to the stress you feel. Try to set aside at least part of a few lunch hours per week for spending time with co-workers you enjoy, going out for a walk, or simply reading a book.

Try not to trespass on work time. Save personal calls for a short period during lunch or breaks. And do the same for personal e-mails and Internet research, if possible. Many companies have policies that prohibit personal use of computers, so it may be necessary to use a home computer, go to the library, or ask a friend for help.

Personal life and caregiving

If the person you are caring for lives with you, the demands of caregiving rarely let up. Running errands, making phone calls, juggling finances, and making trips to the doctor soak up hours, too. The sad part is that it's easy to shunt aside anyone not clamoring for your attention — and even some of those who are quite vocal about wanting it. Often, your relationship with your partner, spouse, or children is squeezed unmercifully by other demands. And getting a quiet moment alone seems like the impossible dream. This section includes tips that can help you stay connected to the important people in your life and carve out a bit of personal time.

Bundle errands. Make a weekly master list of everything that needs to be done, including appointments, shopping, drugstore runs, trips to the gas station, and other errands. Dole out simple tasks, if possible, or do as much as you can in one time slot.

Clear your schedule. Set aside time to spend with a partner or family. Start small — just one evening a week or breakfast out together if you're caring for someone in your home — and add to it when you can. Always let the answering machine pick up calls during certain hours. Make pre-emptive phone calls so you won't be interrupted during family or personal time. Be flexible with children, depending on their preferences, but find ways to connect regularly, such as a game night or bedtime reading for younger ones and late-night snacks or a shared movie with older ones. Brainstorm together about what might work.

Focus on priorities. If a clean house makes you feel good, by all means see that beds are made and housework gets done. If home-cooked meals satisfy a yen, head for the kitchen. But look for shortcuts, too. Could cooking happen on certain days only? Can you make your room an oasis of clean and calm while being less strict about other areas? Can you let some jobs slide or hire help to get them done?

Setting limits

Like many worthy tasks in life, caregiving will take all you have to offer and may well call for more. Don't wait until you are ready to snap. You simply cannot do everything. Consider what you can accomplish yourself and where to set limits. You owe it to yourself and those you love to stay healthy, reasonably happy, and sane. No one benefits when you feel you have nothing left to give.

Quell your guilt. Caregiving attracts guilt like a magnet pulls iron filings. There's always something else you could be doing or should have done. But odds are good that you do a great deal. Pat yourself on the back for all you give; don't excoriate yourself for failing to give more.

Run a test. Ask yourself these questions: What happens if I become sick or incapacitated? Who would step in, and what would they need to do? If everything couldn't be covered by unpaid help, what tasks could be farmed out to professionals? What tasks would absolutely have to get done every day — washing up, dressing, eating — and what could be done less often or not at all?

Refuse to do it all. It pays to have more than one person involved in caregiving. The sooner you sign on others, the better. They gain a better understanding of the situation and may be more likely to add duties to their job roster later.

Allow other styles. Sometimes the problem is not getting others to do a task — it's getting them to do it the way you would. Pick your battles. Generally, routines are essential and calming if the person you care for is mentally confused or in a lot of pain. And it's probably true that no one will bathe and dress your mother with all the care you lavish on her. But it's essential to let others put their imprint on tasks. Look the other way if the house isn't as pristine as you'd like it when someone else cleans. Bite your tongue about money spent on a home delivery of groceries or a twice-a-month cleaning service.

Just say no. Your needs count, too. Practice saying "no" in front of the mirror or with a sympathetic friend, if necessary. Try saying, "Boy, you really do need to get that done. I'm not able to do it, though — who else might be able to help?" You may have to force the issue this way before other solutions and volunteers emerge. You cannot expect people to realize where your limits lie if they seem infinitely expandable.

Watch your back

Caregivers often suffer back injuries. Ask a professional, such as a nurse or physical therapist, to teach you the right way to shift or move someone. Products like transfer boards may have gliding disks, rails, or wooden balls to cut down on friction and effort. Transfer slings and belts give caregivers a safe, strong hold when moving someone; hoists and lifts may be necessary for heavier folks. For more information on these potentially back-sparing products, talk with a physical therapist or see the "Resources" section.

Caring for your health

Bleak predictions abound whenever research on caregiving makes the news. A 2006 New England Journal of Medicine study that followed 518,000 older couples on Medicare noted an increased risk of death among caregiving partners of spouses who had been hospitalized for serious illnesses. The Nurses' Health Study, which enrolled more than 37,000 women, reported that those caring for an ill or disabled spouse were nearly six times as likely as noncaregivers to suffer depression or anxiety. Researchers have linked caregiving to a greater risk of high blood pressure, sluggish wound healing or other signs of a distressed immune system, and self-reports of poor health.

Certainly when caregivers are exhausted, stressed, and isolated, their health suffers. But the culprit isn't merely caregiving, which can forge a loving, healthy connection. It's the difficulty of eating well, exercising, enjoying life, releasing stress, and getting the rest and support you need when you're caring for someone around the clock or combining care with an already full plate. A 2006 Annals of Internal Medicine study of more than 640 dementia patients and caregivers found that depression rates were half as low among caregivers randomized to receive nine support sessions at home and another three by phone over the course of six months than it was for those who didn't receive support.

Seek respite care and assistance. Time for yourself makes a real difference. So, too, does getting the assistance that you need, whether it's help with finances or daily tasks.

Eat well. Include plenty of vegetables and fruits in your diet, and choose whole grains over refined-grain products. Limit or cut out unhealthy fats and too many sweets. Keep healthy snacks available, like air-popped popcorn or fruit.

Stay active. Frequent exercise delivers proven health benefits, such as lowering cholesterol and blood pressure. Try to get 30 to 60 minutes of moderate exercise a day, most days of the week. If that sounds impossible, remember that some activity is always better than none.

Stay connected. Catch up with friends by phone or e-mail, or plan weekly walks and the occasional lunch or movie. Ask people to visit you, or to drop by to see the person you're helping so that you can take a break.

Enjoy yourself. Listen to music you like, enjoy a luxurious bath, take a yoga class, dabble in art or creative pastimes, go out to dinner, or splurge on a massage. Regular time off helps make the point that you're neither invincible nor completely irreplaceable.

Two quick relaxation exercises to try

When you have one minute: Lie on a carpet or a bed. Place your hand just below your navel so you can feel the gentle rise and fall of your belly as you breathe in and out deeply. Slowly breathe in. Pause for a count of three. Slowly breathe out. Pause for a count of three. Continue breathing deeply for one minute, pausing for a count of three after each inhalation and exhalation.

When you have three minutes: While sitting down, check your body for tension. Relax your facial muscles, allowing your jaw to fall open slightly. Let your shoulders droop and your arms fall to your sides. Loosen your hands so that there are spaces between your fingers. Uncross your legs or ankles. Feel your thighs sink into your chair, letting your legs fall comfortably apart. Feel your shins and calves become heavier and your feet grow roots into the floor. Now breathe in slowly. Pause. Breathe out slowly. Pause. With each exhalation, try to relax your body even more.

Relieving stress

When no outlet is found for stress, it compounds faster than interest on a loan. Has your confused father asked why he can't go back home for the 10th time in as many minutes? Have medical appointments compelled you to miss work again? Are you worried about paying soaring prescription drug bills? Clearly, you cannot completely erase sources of stress in your life. But you can relieve some stress and work on solutions to problems that are raising your blood pressure.

Retrench. Reassess needs and brainstorm solutions. Would adult day services help once or twice a week? Would grocery shopping online give you a little more time for yourself? Can other family members step up to the plate or pitch in financially?

Revitalize through exercise. If you can't shoehorn in a regular walk or get to the gym, could you start a strength training or aerobics program at home? This requires only minimal equipment. There are plenty of videos, DVDs, and publications to get you started. Or perhaps someone could take over for a few hours so that you could take a hike — literally! Getting outdoors might lift your mood immeasurably.

Release feelings. Sometimes stress stems from feelings you wish you didn't have, such as anger, frustration, or dislike. Find ways to release these feelings without hurting yourself or others. Join a support group, talk with understanding friends, or consider therapy. Yell in the car with the windows rolled up. Sprint up and down the stairs to burn energy.

Relax. Learn meditation and other relaxation techniques through a class, tape, or book. The time and money invested pay dividends in improved health and well-being.