New to Caregiving? – Here's What You Need to Know
By Lisa M. Petsche
For a printer-friendly version, please click here. | Help?
If you are new to caregiving, you may feel overwhelmed and unsure about what you need to know in order to effectively carry out your role. Read on to learn about the key areas where you need to become educated and resources that can help you acquire the necessary knowledge and skills.
WHAT you need to know:
Your relative’s health condition and how it may affect him physically, emotionally and behaviorally over time.
WHERE to find the information:
Your relative's doctor and other involved healthcare professionals; the organization associated with your relative’s disease (the Alzheimer’s Association or Parkinson Foundation, for example); books; MedlinePlus, www.medlineplus.gov (National Library of Medicine)
Caregiving skills, medical equipment and community supports likely to be needed.
As above; videotapes and CD-ROMs; caregiver magazines and Web sites; local Area Agency on Aging (AAA).
How to enhance communication with doctors and other healthcare professionals.
Health, senior and caregiver periodicals; Internet articles (locate them through keyword searches).
Safety issues - how to reduce the risk of falls, medication-related problems, driving accidents and other dangers.
Your relative’s primary physician; physical or occupational therapist; local public health office; National Safety Council (www.nsc.org or 630-285-1121); Home Safety Council (www.homesafetycouncil.org or 202-330 4900); your relative’s pharmacist; www.seniorcarepharmacist.com (American Society of Consultant Pharmacists).
Financial resources and needs: a) your relative’s income, retirement accounts, benefits entitlement, medical and long-term care insurance policies and other assets; b) federal, state and local funding sources as well as tax deductions to which your relative is entitled; c) cost of supplementary healthcare services, residential care, funeral arrangements and other future needs, and how to plan for them.
Your relative’s home files; bank; financial planner; insurance broker; accountant; government offices; Social Security Administration (www.ssa.gov or 1-800-772-1213); The BenefitsCheckUp, www.benefitscheckup.org, a service of the National Council on Aging - locate federal, state and some local benefits programs for older adults that help pay for “prescription drugs, health care, rent, utilities, and other needs” and print application forms and fact sheets.
Legal considerations – has your relative prepared an advance healthcare directive (living will), powers of attorney for healthcare and financial decisions, and a will, and if so, where are these documents are located? If issues around substitute decision making, end-of-life care and estate planning have not been addressed, arrange for your relative to meet with a qualified attorney – someone with expertise in elder law - in the state where he or she lives.
Your relative’s lawyer; legal aid clinic; state or local bar association; National Academy of Elder Law Attorneys, www.naela.org or 520-881-4005.
Record-keeping – how to organize relevant medical, financial, legal, and other documentation pertaining to your relative, for quick and easy reference.
Bookstores; caregiver magazines and Web sites (look for articles and product reviews).
Options for housing and residential care, and what to look for when choosing a care facility.
Local AAA or office on aging.
Self-care: a) how to care for yourself physically, mentally, emotionally and spiritually in order to prevent stress that can lead to burnout; b) available respite services in your community - such as day care programs and facilities offering temporary residential care – and other caregiver supports.
Local AAA; local public health office; community social workers; caregiver Web sites and periodicals; Mental Health America – go to www.nmha.org or call 1-800-969-6642 to determine the nearest affiliate.
CARE RESOURCES WORTH CHECKING OUT:
- National Family Caregivers Association - www.nfcacares.org or 1-800-896-3650.
- Family Caregiver Alliance - www.caregiver.org or 1-800-445-8106.
- National Alliance for Caregiving - www.caregiving.org or 703-585-6607 - the online Family Care Resource Connection provides “reviews and ratings on over 1,000 books, videos, Web sites, and other materials on caregiving.”
- Children of Aging Parents - www.caps4caregivers.org or 1-800-227-7294.
- Eldercare Locator - www.eldercare.gov or 1-800-677-1116 – a database of “state and local area agencies on aging and community-based organizations that serve older adults and their caregivers.”
- ElderCare Online - www.ec-online.net – provides “information, education and support to families caring for aging loved ones, especially those coping with Alzheimer's Disease and related dementias.”
- Family Caregiving 101 - www.familycaregiving101.org – jointly operated by the National Family Caregivers Association and the National Alliance for Caregiving.
Lisa M. Petsche is a medical social worker and a freelance writer specializing in health and elder care issues.