Handbook for Mortals : Getting the help you need : How to find help and advice

Ask lots of questions - of everyone! The art of getting the information you need is to ask questions of different people who have a variety of expertise and experience. Talk to doctors, nurses, social workers, friends, neighbors, priests, pastors, and rabbis. Call your local churches, hospitals, hospices, and civic or volunteer service organizations. Call your city, county, or state government officials. Talk to people who have gone through similar experiences. Join a support group, perhaps one that is organized around your situation. Tell them your story. Ask your questions, but also be willing to listen to thoughts, ideas, and suggestions that may not have occurred to you.

Call your local Office on Aging

Area Offices on Aging provide information and referral and match you up with services such as meals at senior centers, meals-on-wheels, transportation, financial help, telephone reassurance, grocery shopping assistance, income tax assistance, or any other special need you might have. You may also qualify for financial assistance through this office. If you do not know how to contact your local Office on Aging, call the national toll-free hotline at 1-800-677-1116. Often, the Office on Aging can send you a list of local services, their missions, and their phone numbers.

Get the help of a case manager

The Office on Aging or various individual professionals or companies may be able to provide you with a case or care manager. You may want to consult a care manager early on to make plans and coordinate care. This person is usually a nurse or social worker who helps to coordinate the care in your home. For example, if your family members live far away, you may choose to hire a case manager to help hire persons to provide care in your home. The case manager will visit your home and find out what your specific needs are. A case manager, for instance, could hire one aide to help with laundry and cooking and another aide to help you with personal care, including bathing, dressing, and eating. She could assess whether you might need special equipment in your home such as a shower chair or a raised toilet seat.

A good care manager will also help you adjust to having a paid household worker. Many people find having a household employee to be anxiety-provoking and need someone experienced to talk it over with. The cost of a case manager varies depending on your income. You may need to consult a care manager only once or twice, and some good advice at the beginning may well save anxiety and money in the long run.

When your family needs a break

Your local Office on Aging can tell you where to look in your area for respite care. Respite care is temporary care provided by someone else so that the everyday caregiver can do other things such as shop, go to church, run errands, or just have a much-needed break.

Have your wishes followed at home

Most doctors, nurses, and others in the medical world are focused on curing disease, or at least trying to stop it in its tracks. While cure is a worthy goal in many cases, the high-tech treatments that are commonly used may not be what you want at this stage in your life. There are some things that you can do to be sure that your caregivers follow your directions.

When you have help in your home

If family or friends are distant or not available to help, you may find that you rely on paid caregivers, such as home health aides or chore aides, to help around your house or apartment. You may find that their schedules vary and that you cannot count on seeing the same person every day or even every week. You need to think through what it is that really matters to you in their work and their relationship with you and be prepared to choose agencies or personnel on that basis. You canít spend your energies on frustrations with hired workers!

Sometimes, a hired home caregiver comes to be your close friend, but often they will never know you well enough to understand what you hope for in life and in dying. It often is prudent to place a simple set of instructions near all phones and review them with all caregivers. Here are two contrasting examples:

DO NOT CALL 911! If I die, I do not wish to be resuscitated (see my bracelet). Call John Smith at 555-1212. Call my physician at 555-1010. The funeral home number is 555-1111.
I am not expecting to die. If I collapse, call 911. Call my physician at 555-0101. Call my friend Jane Smith at 555-2121. They will know what to do.

Whether your caregiver is paid or is a friend or family member, there is information that he or she will need to know. Once again, ask nurses and support group members who have cared for others what will make it easier to give good care. Also, call the National Caregiving Foundation for information, support, and a caregiverís Support Kit (1-800-930-1357).

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Handbook for Mortals book cover Copyright © 1999, 2006 by Joanne Lynn. This extract from the Handbook for Mortals by Joanne Lynn, M.D. and Joan Harrold, M.D. is used with permission. To learn more about improving care at the end of life visit the main web site for Americans for Better Care of the Dying.
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