Caring for yourself

By Ashley Schuetz
As a caregiver, you may be enduring chronic stress and lack of personal time. Putting your own health on the back burner should not occur, even with the large amount of responsibilities you have. If you are not caring for yourself, how will you be able to care for someone else? Taking simple steps and integrating them into your daily routine can help you maintain or even improve your current health. Below is a list of recommendations that all reduce stress and can improve your quality of life.
• Exercise moderately 30 minutes most days of the week. The exercise can be expanded over several intervals throughout the day.
• Make sure you are eating a well-balanced diet that includes fruits, vegetables, whole grains, dairy and proteins. Having healthy snacks on hand will decrease your urge to splurge on fast-food or junk food when hunger occurs. A good reference for proper nutrition is http://www.nutrition.gov
• Adequate hand hygiene will help reduce the spread of germs and decrease your risk of illness. Wash your hands frequently, before and after meals, at least 30 seconds with a good amount of friction.
• Getting proper sleep can help improve your mood and memory. Seven to nine hours is recommended daily.
• Make a list daily and prioritize that list. If you can’t get everything done, don’t stress! Ask others for help.
• Don’t forget to make doctor’s appointments. Preventing illnesses or managing a disorder/disease will help maintain and/or enrich your quality of life and allow you to do what you do best, provide care!
If there are any questions about managing your own health or the health of the person you are caring for, please do not hesitate to ask. Here are some good websites that can help direct you to a path of healthy lifestyle living!
United States Department of Agriculture
http://www.choosemyplate.gov
Health Benefits of Physical Activity
http://www.healthyforms.com
Benefits of Sleep
http://www.better-sleep-better-life.com
Time Management Strategies for Caregivers
http://www.agingcare.com/Articles/Time-Management-Planning-Techniques-Caregivers-144932.html

Resources for Caregivers

By Jan Veltre
Financial Relief for Family Caregivers:
Every month, millions of people worry about how they will pay their rent or mortgage, utilities, phone bill, the food bill, car payment, and insurance, along with any other unexpected expenditures that might come their way.

Almost everyone lives paycheck-to-paycheck, and when the extra responsibility of being a family caregiver for a loved one is added to an already costly equation, you’ve got a situation that stretches way beyond anyone’s financial imagination or reality. It’s taken several years for the financial plight of the family caregiver to be recognized, probably because it was always assumed that health insurance and other coverage would pay for any of the medical expenses and other needs of a loved one, which is certainly far from being true.

Below is a listing of various resources that can provide financial relief or knowledge of assistance in obtaining help with financial concerns.

The National Family Caregiver Support Program (NFCSP) tries to find families who are economically or socially needy; having a low income is not an eligibility requirement for receiving available services. There’s also a program that helps grandparents 60 or over who are serving as the primary caregivers for grandchildren or other related children under 18 or who may have mental or physical challenges, and who live in the grandparent’s home. Best of all, there is no charge for any of the services provided to family caregivers of older persons or grandchildren. Through the program, all states who are working in partnership with local area agencies on aging, as well as with faith- and community-service providers, are to offer five direct services that best meet the range of caregivers’ needs, including:

•information to caregivers about available services
•assistance to caregivers in gaining access to supportive services
•individual counseling, help in organizing support groups, and caregiver training to assist caregivers in making decisions and solving problems relating to their roles
•respite care for family caregivers through the use of companions, homemakers, home health aides, adult day care, and in-facility care.
•supplemental services, on a limited basis, to help with the care provided by caregivers, which may include medical supplies such as disposable undergarments or nutritional items
The National Family Caregiver Support Program is available throughout the United States, with some variation in priority for services and types of services offered in different areas. Family caregivers can contact the NFCSP through their local area agency on aging (AAA) or by contacting the Administration on Aging directly at 202-619-0724.

Social Security Disability
When a disabled individual has had Social Security deductions made from their paycheck and has worked in the preceding five (5) year period, they may qualify for disability benefits from the Social Security Administration. If the Social Security Administration awards disability benefits, the recipient receives monthly cash benefits based on the amount of money they paid into Social Security. The payments continue as long as the disability persists. After two (2) years of receiving disability benefits, the individual also becomes eligible for Medicare coverage.

If the disability continues until the recipient reaches retirement age, the Social Security Administration converts the monthly disability check to a Social Security Retirement check. In some cases, a disabled individual age 50 or older, who is the widow/widower or ex-spouse of a deceased worker may also qualify for Social Security benefits. For information about Social Security Disability, Supplemental Security Income or Medicare, call the U. S. Social Security Administration toll-free at 800-772-1213. The Social Security web site is http://www.ssa.gov.

Supplemental Security Income (SSI)
Supplemental Security Income is a benefit which can be given to an individual whose monthly income and assets are below amounts that change annually. In addition to these financial eligibility criteria, the applicant must meet age requirements (65 or older) or must be able to establish a disability according to Social Security Disability guidelines. SSI pays cash benefits and entitles the individual to automatic Medicaid assistance. Use the Social Security contact information listed above for SSI information.

Medicare
Medicare provides assistance for hospitalization and doctors’ costs if the individual has paid into the Social Security fund and either has been receiving Social Security Disability benefits for two (2) years or has reached age 65. There are limitations of Medicare coverage. For example, Medicare, in contrast to Medicaid, does not pay for prescriptions (however, this may soon change). In some instances, it is possible to qualify for both Medicaid and Medicare. For information regarding Medicare, call 800-333-7586 or visit the Medicare web site at http://www.medicare.gov. The Social Security contact information listed above may also be of use.

Veterans Benefits
The U.S. Department of Veterans Affairs (VA) administers Non-Service Connected Pensions. The non-service connected pension is for wartime veterans who are considered permanently and totally disabled and meet the VA’s income and asset limitations. This pension could be used to offset the cost of medical or nursing care for the veteran.
Contact the VA Office at 800-827-1000.

Social Security offers extra help with Medicare Prescription Drug Plan Costs.
I’m certain there is a care giver who is taking care of someone who could use help on paying for their Medicare Prescription drug costs. Over 1 million people have been identified as eligible for this benefit but apparently they are not aware of this fact.
http://www.ssa.gov/prescriptionhelp/

American Kidney Fund
Provides financial assistance to people with kidney cancer or other kidney diseases. As well as help locate appropriate doctors and medical services. Contact them at 6110 Executive Boulevard, Suite 1010, Rockville, MD 20852, 800-638-8299 or 301-881-3052, email: helpline@akfinc.org, and at their web site, http://www.akfinc.org.

Candlelighters Childhood Cancer Foundation (CCCF)
Provides advocacy, bereavement, counseling, financial assistance, insurance information, and referral. CCCF maintains a list of organizations to which eligible families may apply for financial aid. Contact them at: 3910 Warner Street, Kensington, MD 20895, 800-366-2223 or 301-962-3520, email to info@candlelighters.org, and the web address is http://www.candlelighters.org.

Pennsylvania – Financial Relief for Family Caregivers
Cash Assistance – cash payment to help eligible persons who don’t have enough income to meet their basic needs. If you are eligible for case advance, you are automatically eligible for medical assistance. Contact them toll-free, 800-692-7462.

Bethel Deliverance Church – Operation Blessing – provides limited financial assistance for rent or mortgage payments, emergency needs in situations of catastrophic loss (fire, flood, earthquake), utility bills (water, electricity, gas). Requests will only be considered if a letter is attached from a pastoral or agency representative. Payments will be sent directly to the creditor. Call them at 215-885-2585.

The Leukemia & Lymphoma Society – Western Pennsylvania and Western Virginia Chapter – offers information and financial aid to patients who have leukemia, non-Hodgkin lymphoma, Hodgkin’s lymphoma, or multiple myeloma. Reimburses up to $500 a year to patients for transportation, chemotherapy drugs, transfusions, and testing not covered by insurance or other sources. Contact them at 412-395-2873 or toll-free at 800-955-4572.

The Leukemia & Lymphoma Society – Central Pennsylvania Chapter – contact them at 717- 652-6520 or toll-free at 800-955-4572.

The Leukemia & Lymphoma Society – Eastern Pennsylvania Chapter – contact them at 610-521-8274 or toll-free at 800-955-4572.

http://www.caregiver.com/regionalresources/financial/financial_aid_pg2.htm

Caring for Yourself When You Are Caring for Others?

By Janice Veltre

Caregivers often report stress, loss of sleep, and poor personal health. experts suggest four strategies that can help you take care of yourself, as well as others.

Identify local support services
Local agencies can connect you to services and benefits such as adult day care, respite care (temporary breaks for caregivers), training programs, and caregiver support groups both in your community and on the Internet. To find your local Area Agency on Aging and connect to support groups and other caregiving services, visit the Eldercare Locator at http://www.eldercare.gov. Identify local respite care providers at the Access to Respite Care and Help (ARCH) National Respite Network and Resource Center at archrespite.org or 1-800-473-1727.

Make connections with others.
Sharing experiences with others can help caregivers manage stress, reduce feelings of isolation, and recognize that they are not alone. Caregivers should find someone they can talk to about their feelings, like a fellow caregiver, clergy, friend, family member, or therapist. Go to the Ask Medicare site at http://www.medicare.gov/caregivers and click on “Caregiver Topics,” then “Support for Caregivers,” then “Taking care of yourself,” and “Connect with resources to make your life easier” for links to messages boards, discussion groups, and forums.

Ask for help
Speak up when you need support or assistance. Help can come from community resources, family, friends, and professionals. Consider getting help to manage meals, transportation, social activities, and services to assist with other daily needs. Visit “Lotsa Helping Hands” at http://www.lotsahelpinghands.com, a free service for creating private online communities where family and friends can stay informed and easily provide assistance to caregivers, share a common calendar, and find additional resources.

Take care of your own health.
Managing your own health is important to make sure you are healthy enough to help others. Eat properly, get regular exercise, and set aside some time each week to do something you enjoy. Continue to get regular check-ups and see your doctor if you experience any health problems.

Click to access CMS_CareForYourself_6_508.pdf

How to Avoid Repeat Hospitalization

Guest Author: Janice Veltre

The last place patients want to end up after a hospital stay is right back in the hospital. But millions of patients each year are readmitted to hospitals, and many of those stays could have been prevented. In fact, 4.4 million hospital stays each year are due to potentially preventable readmissions, according to Agency for Healthcare Research and Quality (AHRQ) estimates.
Many of the medical problems that send patients back to the hospital could have been avoided in the first place. What causes these problems to happen?
Often it’s because patients and caregivers don’t understand what they need to do to take care of themselves or their loved one after a hospital stay. No one at the hospital told them exactly what they should and shouldn’t do at home or answered questions on taking medicines, making follow-up appointments, or arranging for follow-up tests. Research sponsored by the Agency for Healthcare Research and Quality (AHRQ), found that more than one-third of the patients who leave the hospital don’t get the follow-up care they need like lab tests or a referral to see a doctor who specializes in their condition.
Recently, AHRQ developed a new resource to get patients better prepared to leave the hospital. Taking Care of Myself: A Guide for When I Leave the Hospital is a guide that highlights what patients need to know when they leave the hospital.
These steps, outlined in the new guide, include:
• Making an appointment to see your doctor or a specialist who treats your condition.
• Taking your medicines correctly.
• Making sure you aren’t allergic to any of your medicines.
• Asking your doctor about your test results.
• Getting the right kind of exercise.
• Knowing who to call with questions or problems.
The easy-to-understand guide helps you keep track of this information and gives you space to write down any questions you want to ask during future appointments.
Of course, this information won’t prevent you from going back to the hospital if you have a bad reaction to a medicine or if you need more treatment. But it does increase the chance that you’ll be better prepared to take care of yourself when you leave the hospital. This can help prevent a return visit and save you time, money, and stress.
Agency for Healthcare Research and Quality
Taking Care of Myself: A Guide for When I Leave the Hospital
http://www.ahrq.gov/qual/goinghomeguide.htm

A Letter From PCSN

In November, President Obama issued a proclamation recognizing the
importance of caregivers. We hope that you will reflect with us on
the tremendous contributions that caregivers provide for family,
friends, and community. Too often caregivers are the invisible
partners in medical management: they provide care for loved ones.
They do whatever it takes to get the job done.
Often even other family members and friends do not realize the
multitude of tasks and challenges in caregiving.
Today, our intent in writing is to ask for a greater community
understanding and support of caregivers. With a greater
understanding, we hope that readers will take opportunities to show
appreciation to caregivers.
Caregivers are a crucial piece of our community fabric. Caregivers
are often spouses, adult children, and other family members or friends
who provide care without specialized instruction or education. All
too often the caregiver’s knowledge is gained from on-the-job
training. In this city of medical advances, health care providers,
scientific exploration, it is caregivers who enable loved ones to
remain in the home.
Caregiving includes economic support, day-to-day oversight of
household, or bathing, toileting, dressing and feeding a care
recipient. The challenges of caregiving include constant problem
solving, time management, managing medical appointments and
medications, navigating medical bills, working with medical
professionals and coordinating transportation. Caregiving can take
place in the face of chronic disease, terminal illness, mental
illness, substance abuse and long-term disability. Caregiving can
also create more medical issues: too often caregivers neglect their
own health and relationships in exchange for caregiving
responsibilities.
There are economic concerns related to caregiving. Very often policy
makers discuss the public good of caregiving. Caregiving reduces the
economic burden on communities as receiving care at home is more
affordable than institutionalized care. The costs however are
transferred to the caregiver who experiences lost or reduced wages,
reduced eligibility for social security benefits, loss of pension and
often, loss of health insurance. Another cost associated with
caregiving includes making homes accessible for a person with
disability. This can be expensive. Although there are some limited
grants and low-cost loans available, it takes time and energy to
organize a renovation for accessibility. Costs of caregiving may also
include special diets, co-pays and deductibles for medical supplies
such as incontinence products, therapies, and equipment, appointments
with doctors and specialists and special transportation accommodations
to make appointments. All of these things are crucial to health
management and to maintaining a minimal quality of life for the care
recipient.
If you are a neighbor, consider stopping by for a visit, shoveling
snow, raking the leaves, mowing the lawn. Offer to brighten a holiday
with a decoration or special food. Remember that life slows down with
caregiving, but the desire to live does not stop. If you are an
employer, we ask that you offer flexibility wherever possible. If you
are a religious leader, reach out to caregivers, recognize them, offer
support and compassion, and encourage your congregation to celebrate
the accomplishments of caregivers. There are many. If you are a
medical provider, remember that caregivers are not invisible,
caregivers are agents of care. They need education about the care
recipient’s medical condition and care. They need support and
information about resources. Medical providers can also become
advocates and educators. Teach young professionals and colleagues
about the importance of caregiving and how caregivers complement the
medical healing that you provide. If you have a child, teach them
respect, compassion and kindness. They are our next generation of
caregivers and they will need these skills.
We can’t always anticipate when anyone of us will be a caregiver. We
can only hope that there are community networks and social
infrastructures in place to assist us with our responsibilities, to
insure that we have access to education, resources, and tools to
provide the best care that we can. Therefore the focus on the
caregiver as a partner in care means that caregivers need to be
acknowledged and valued as unique individuals who are entitled to such
support from community resources, community leaders and the formal
health care system. Recognize a caregiver today.

Long Distance Caregiving

As we get ready for National Family Caregivers Month in November, we should not forget to recognize long distance caregiving.  Long-distance caregiving can be difficult, stressful, frustrating, not to mention the guilt that sometimes goes along with not being there.  The National Institutes of Health estimates that there are 7 million long-distance caregivers in the United States!  That is a lot of people trying to take care of a loved one from far away.

There is a great publication available from the National Institute on Aging, part of the U.S. National Institutes of Health, entitled So Far Away: Twenty Questions and Answers About Long-Distance Caregiving, available in PDF format at

 http://www.nia.nih.gov/NR/rdonlyres/5D1DCFC1-4E53-4788-B35F-02ADB61DF2F9/0/SoFarAway.pdf

and you can also order print copies of the booklet.

What is long distance caregiving?  This booklet defines it this way:  

“This kind of care can take many forms—from helping with finances or money management to arranging for in-home care; from providing respite care for a primary caregiver to creating a plan in case of emergencies. Many long-distance caregivers act as information coordinators, helping aging parents understand the confusing maze of new needs.”  

Some of the topics this booklet addresses are how a family can decide who will do what for their loved one, the kinds of information a caregiver should try to organize and keep track of, how to find information on financial assistance for caregiving, and how to talk to a loved one about moving out of the home.  There are also many resources provided.  One of the best quotes from the booklet may be this:  “Long-distance caregivers can be helpful no matter how great the distance.”

The Family Caregiver Alliance also has a publication available on its website at http://www.caregiver.org/caregiver/jsp/content/pdfs/op_2003_long_distance_handbook.pdf

This booklet includes a checklist of care needs and some practical tips and resources.  The Family Caregiver Alliance website also has a variety of fact sheets on topics such as holding a family meeting. 

 The National Caregivers Library also has a number of publications on its website on long-distance caregiving:  http://www.caregiverslibrary.org/Default.aspx?tabid=168

There is also a new website under construction which appears to be devoted to long-distance caregiving:  http://www.longdistancecaregiving.com/

It will be interesting to watch this new site evolve and hopefully it will be another good resource.

It is important for caregivers to have support, and PCSN is committed to doing that by providing opportunities for caregivers to communicate with one another and building a support network.  Sometimes just knowing you are not alone makes a big difference.   Please let us hear from you!