Stage One, section 5: Information List and Notebook

Learn more about your care receiver by making a list, with that person's permission and assistance, of important family information. Be better organized for caregiving by creating a Caregiving Notebook.

Information List

Important family information may be needed when applying for benefits and services, handling medical care, enlisting support from others in helping with caregiving tasks, advocating for your care receiver with insurance companies and service providers, and even after your care receiver's death. Leave room in each section to add more information such as: new services such as adult day care or Hospice, changes in medications, additional physicians, assisted living facility contact numbers, etc. Make an extra copy of this list to keep at your home if you do not live with your care receiver.

If you are not a close relative or guardian of your care receiver, you may have to work with someone appropriate to prepare this list of important family information. Only the care receiver?s family or attorney may know some items. If this is the case, make sure that what you need for caregiving purposes is shared with you.

Here are suggestions for what to include in a list of important family information:

• Personal information. Include care receiver's name, address, telephone number, marital status, spouse's name, social security numbers for frail older person (and spouse, if appropriate for you to know that), dates of birth, primary caregiver, and secondary emergency contact.

• Extended family and friends. Record phone numbers and addresses of extended family and other possible members of the older person's informal support network including children, siblings, neighbors, friends, religious affiliation and contact person, and condominium or apartment manager if applicable. If anyone has offered to help in a specific way, write that by his or her name. For more about how to ask for help, see Stage Two, section 1.

• Service providers. List telephone number, agency or company name, address, contact person, and service being provided to your care receiver by agencies or businesses. Include contact information for services such as hairdresser, lawn service, pool cleaning service, and utility companies. Remember that when there are hospitalizations, appointments need to be canceled and in-home services discontinued on a temporary basis. Utility bills, etc. still need to be paid.

• Insurance information. Include Medicare and, if applicable, Medicaid numbers, private insurance policy company names and policy numbers, long-term care insurance, disability, veterans benefits, home owner's, boat owner's, and car insurance. Know where the care receiver's Medicare card, insurance cards, and insurance policies are located. Be prepared to gather them in a safe place during a disaster such as a hurricane. Check for waiver of premium on insurance policies. For more information, see Stage One, section 6: Disaster Planning.

• Financial resources. Include income from wages if working, Social Security, Supplemental Security Income (SSI), Social Security Disability Income (SSDI), Veterans benefits, pensions, general assistance, income from interest and investments, and other income; bank(s) used; balance in checking and savings accounts, value of assets including stocks, bonds, CD's, real estate and rental property, other investments; debts including credit cards, loans, mortgages; burial funds if some have been set aside. Find out about location of and keys to safety deposit boxes and home security box or safe. After this information has been gathered, you or the care receiver, if capable, may want to visit the Benefits CheckUp web site, www.benefitscheckup.org, for a confidential report on possible benefits eligibility based on income, assets, etc. Remember that this is just a guideline, and your care recpeiver may be eligible for other government-funded programs. A similar report plus general information about benefits for which a person who fits a certain category may be eligible is available at the GovBenefits web site, www.govbenefits.gov. Remember that some services, such as The National Family Caregiver Support Program and The Caregivers REST Project available through the Area Agency on Aging of Pasco-Pinellas, Inc., do not have income or asset eligibility requirements and may not show up on a personalized benefits report.

• Legal information. Include name of responsible family member, person with Durable Power of Attorney, with Guardianship, with Health Care Surrogate Power of Attorney; name of family attorney; living will; trusts; and advanced directives such as do not resuscitate order. One source of information about advanced directives is the Project Grace web site, www.p-grace.org.

The Older Americans Report (June 22, 2007) reports on a new online resource for caregivers. Shirley Board, www.shirleyboard.com, is free and provides an online journal, photo keeper, a place to keep prescription information and medical information, and to store important documents. It offers help with organization and is especially useful for caregivers who live a distance away.

Gulfcoast Legal Services, Inc. has received a grant from Pinellas County to provide legal assistance in the preparations of powers of attorney, living wills and healthcare surrogate designations. You may call Judy Ellis at 727-864-3957 or the Gulfcoast Legal Services direct number at 727-821-0726 to set up an appointment. There is no charge to you in help in preparing these basic advanced directives. You may also email her at jellis5610@tampabay.rr.com.

Elder law attorneys in Pasco and Pinellas counties are listed with the Senior Helpline. The Florida Bar Association at 1-800-342-8060 can also provide a list of elder law attorneys by county. If you prefer, call the local Clearwater Bar Association at 727-461-4869 or the St. Petersburg Bar Association at 727-823-7474.

Elder law attorneys specialize in helping people plan for illness, incapacity, and death. They are knowledgeable in issues such as Medicaid, Medicare, Guardianships, Estate Planning, Trusts, and Advanced Directives. It may be an elder law attorney who helps find strategies to make your care receiver eligible for Medicaid payment for care in a nursing home, something that could be very important to you later if home care becomes too difficult. For information about Medicare-Medicaid laws in Florida, choose that topic on the DOEA web site, www.myflorida.com/doea. You may want to visit www.floridamedicaid.com, also. This commercial site by Medicaid attorneys is updated frequently.

Attorneys can help insure that the care recipient?s end of life choices and preferences are honored. This may be especially important if you are the unmarried heterosexual or same sex partner of your care receiver. You may need an attorney to help protect your rights and those of your care receiver. This could be important if the care receiver?s relatives have different ideas regarding care and end-of-life decisions. For more on the legal rights of lesbian, gay, bisexual and transgender (LGBT) older adults and their caregivers, run a search for ?LGBT Caregivers? on the Family Caregiver Alliance web site, www.caregiver.org.

For more information on elder law attorneys, read What Is an Elder Law Attorney? and Legal Considerations When Facing Incapacity. You can find Questions to Ask An Elder Law Attorney on the web site of the National Academy of Elder Law Attorneys (NAELA), www.naela.com/public/QA.htm. The NAELA web site also includes Locate an Elder Law Attorney.

• Medical information. Include information about primary-care physician, other physicians, agencies providing therapy or other services, suppliers for oxygen, adult undergarments, etc., medical conditions, allergies, medications, pharmacies used, recent hospitalizations, attending physician and surgeon, diagnosis and payment arrangements.

• The Department of Elder Affairs" SHINE (Serving Health Insurance Needs of Elders) Program, which has a local office at the Area Agency on Aging of Pasco-Pinellas, Inc., can provide information about prescription assistance and assistance with understanding medical insurance and completing forms. In Pinellas County, Florida, contact SHINE by calling the Senior Helpline, 727-217-8111 or in Pasco 1-800-861-8111. SHINE volunteers can answer insurance questions and help complete paperwork. You may prefer to print a copy of the SHINE Prescription Assistance Fact Sheet from the Florida Department of Elder Affairs (DOEA) web site, www.myflorida.com/doea. A new Medicare program, Medicare Part D, has been implemented to assist seniors with their medication costs. A SHINE representative would be able to assist seniors in making a selection.

• Funeral arrangements. . It may seem too soon to think about funeral arrangements, but pre-planning funerals is a great gift for the family and friends who will be left behind someday. Some people decide everything, even what songs to sing. At a minimum, it would be good to know your care receiver's wishes regarding cremation or burial, type of funeral service desired, place of internment or whether ashes should be scattered, etc. If you are not aware of whether funeral and burial plans have been made and your care receiver is competent, discuss these issues. For help in making funeral plans, order a free pamphlet called Funerals: A Consumer?s Guide by calling the Federal Trade Commission (FTC) toll-free at 1-877-382-4357. This brochure can be found also on the FTC web site, www.ftc.gov.

• Plans for care of pets in case of incapacity or death. A frequently overlooked issue is what a person hopes will happen to pets should the owner move to a facility that does not allow pets or following the death of the owner. If an older person dies without a surviving spouse who is able to care for a pet and without making provisions in a will or at least by telling relatives while alive, families may argue about what to do with the surviving pet, especially if it doesn't work out for a family member or friend to take the pet. This can be stressful for the grieving family and a sad fate for the pet, which may end up in an animal shelter with few hopes of adoption. This is probably the last thing the owner would have wanted.

• Discuss plans for pets while your care receiver is alive and can be involved in the decision. Also let him or her know about the option of a Pet Trust. January 1, 2003, Florida pet trusts became legally enforceable, meaning that the Trustee has to spend the funds on the owner's pet with funds remaining after the pet dies distributed to heirs or charities as the owner chooses. This is something for you and your care receiver to discuss with an elder law attorney. One elder law attorney who serves Pinellas County, Florida, is working on a pet trust web site, to be found soon at www.pettrust.net. You may also want to run a general Internet search for ?Florida pet trusts?.

Caregiving Notebook

Besides having a list of important family information, it is helpful to create a caregiving notebook in a 3 ring binder. Adding to this Caregiver handbook works well. Your goal is to have information needed to arrange and keep up with your care receiver?s care.

Here are some of the uses for your caregiving notebook:

• This is a place to record medications and changes in health.
• A calendar with your care receiver?s appointments can go in here.
• Special diet information and pamphlets about medical conditions can be kept in the pockets of the notebook.
• Decide whether to include the entire important family information list or keep it private and make a smaller list for the notebook, which may be used by friends, family, and service providers helping with care.
• The caregiving notebook should include a list of emergency contacts, doctors' numbers, family and friends and the type of help they can provide, and contact people for services for anyone staying with your care receiver to use in an emergency. You will be more comfortable taking breaks from caregiving if you know that your substitute caregivers have this information, and they will be more comfortable, also.

While keeping up with your care recipient's care, don't forget your own care:

• Keep a calendar for yourself including your support group meetings, medical appointments, caregiver workshops you want to attend, and scheduled breaks from caregiving.
• Remember to schedule your annual medical exams and tests such as mammogram or prostate test, etc.
• Make sure your doctor knows that you are a caregiver. Discuss your situation and any depression, anxiety, and insomnia that you may experience. Medications can be helpful for these conditions if needed, but non-drug choices can also help you avoid or postpone the use of medications to deal with caregiver stress.

Alternative stress reducers include joining a support group, finding ways to take breaks from caregiving, eating right, exercising, volunteering, writing in a journal, expressing yourself through art, watching popular and classical movie videos or DVDs checked out of the library, and working puzzles or playing free games on the Internet. For more on these topics, see Stage Two and Stage Three.