Caregiving : Meeting Parent's Doctor, Costs

by National Institute on Aging

(Page 4 of 7)

How can I make the most of a visit with my parent's doctor? I don't want to waste the doctor's time.

If you go with your parent to see the doctor, here are a few tips that will help you be an ally and advocate:

Bring a prioritized list of questions and take notes on what the doctor recommends. Both can be helpful later, either to give information to the primary caregiver, or to remind your parent what the doctor said.

Before the appointment, ask your parent, the primary caregiver, and your siblings if they have any questions or concerns they would like you to bring up.

Bring a list of ALL medications your parent is taking, both prescription and over-the-counter, and include dosage and schedule (if your parent sees several different doctors one may not necessarily know what another has prescribed).

When the doctor asks a question, do not answer for your parent unless you have been asked to do so. Always talk to the doctor and to your parent.

Respect your parent's privacy and leave the room when necessary.

Ask the doctor if she or he can recommend community resources that might be helpful.

Larger medical practices and hospitals may have a social worker on staff. Ask to speak with the social worker. She or he may have valuable information about community resources.

NIA has a free booklet called Talking with Your Doctor: A Guide for Older People that provides helpful information about doctor/patient communication. It includes hints on getting ready for a doctor's appointment, making health care decisions, and talking about sensitive subjects.

How on earth can my parents afford everything they need? They saved money for retirement, but the cost of their health care is really high.

You are not alone in worrying about how much everything costs. Health care expenses can be crushing, even for middleclass families who thought they had saved enough. Your parents may be eligible for some health care benefits. People on fixed incomes who have limited resources may qualify for Medicaid, a program of the Centers for Medicare and Medicaid Services (CMS), a Federal agency. CMS covers the costs of health care for people of all ages who meet income requirements and who are disabled. Because the guidelines change often, you should check with CMS regularly.

Medicare offers insurance for prescription drugs. For information about this coverage, visit www.medicare.gov or call 1-800-MEDICARE (1-800-633-4227).

The State Health Insurance Assistance Program (SHIP) is a national program offering one-on-one counseling and assistance to people and their families on Medicare. SHIPs provide free counseling and assistance to Medicare beneficiaries on a wide range of Medicare, Medicaid, and Medigap matters. To find your State program, visit www.shipusa.org.

If prescription medications cost too much, talk to the doctor about the possibility of prescribing a less expensive medication. The Partnership for Prescription Assistance can provide a list of patient assistance programs supported by pharmaceutical companies.

What kinds of documents do we need? It sounds like caregiving requires a lot of paperwork.

Effective caregiving depends on keeping a great deal of information in order and up-to-date. Often, long-distance caregivers will need to have information about a parent's personal, health, financial, and legal records. If you have ever tried to gather and organize your own personal information, you know what a chore it can be. Gathering and organizing this information from far away can seem even more challenging. Maintaining up-to-date information about your parent's health and medical care, as well as finances, home ownership, and other legal issues, lets you get a handle on what is going on, and allows you to respond quickly if there is a crisis.

If you do not see your parent often, one visit may not be enough time for you to get all the paperwork organized. Instead, try to focus on gathering the essentials first; you can fill in the blanks as you go along. You might begin by talking to your parent and his or her primary caregiver about the kinds of records that need to be pulled together. If a primary caregiver is already on the scene, chances are that some of the information has already been assembled. Talk about any missing information or documentation and how you might help to organize the records.

Your parents may be reluctant to share personal information with you. Explain that you are not trying to invade their privacy or take over their personal lives - you are only trying to assemble what they (and you) will need in the event of an emergency. Assure them that you will respect their privacy and keep your promise. If your parents are still uncomfortable, ask if they would be willing to work with an attorney (some lawyers specialize in elder affairs) or perhaps with another trusted family member or friend.

Should I encourage my parents to get more help? The last time I visited, my mom seemed very confused, like she just wasn't quite there. Dad didn't seem to notice and didn't want to talk about it when I asked him.

If you do not see your parent often, changes in his or her health may seem dramatic. In contrast, the primary caregiver might not notice such changes, or realize that more help, medical treatment, or supervision is needed. Sometimes a geriatric care manager or other professional is the first to notice changes. For families dealing with Alzheimer's disease and other dementias, it can be easier to "cover" for the patient - doing things for him or her, filling in information in conversations, and so on - than to acknowledge what is happening.

A few good conversation starters are:

If you thought there might be a change in Aunt Joan's condition, whose opinion would you seek?

I didn't notice Dad repeating himself so much the last time I was here. Do you remember when it started?

Some changes may not be what you think. Occasional forgetfulness does not necessarily indicate Alzheimer's disease. Before you raise the issue of what needs to be done, talk to your parent and the primary caregiver about your concerns. Try not to sound critical when you raise the subject. Instead, mention your particular worry, for example, "Mom, it looks like you don't have much food in the house - are you having trouble getting to the store?" and explain why you are concerned. Listen to what the primary caregiver says about the situation, and whether he or she feels there are problems.

Discuss what you think needs to be done: "Do we need to get a second opinion about the diagnosis? Can you follow the medication schedule? Would you like some help with housework?" Try to follow up your suggestions with practical help, and give specific examples of what you can do. For example, you might arrange to have a personal or home health aide come in once a week. You might schedule doctors' appointments or arrange for transportation.

In some cases you may have to be forceful, especially if you feel that the situation is unhealthy or unsafe. Do not leave a frail adult at risk. If you have to act against the wishes of your parent or the primary caregiver, be direct and explain what you are going to do. Discuss your plan and say why you are taking action.

About the Author

www.nia.nih.gov
NIA, one of the 27 Institutes and Centers of NIH, leads a broad scientific effort to understand the nature of aging and to extend the healthy, active years of life. In 1974, Congress granted authority to form NIA to provide leadership in aging research, training, health information dissemination, and other programs relevant to aging and older people.