Managing non-medical matters

Medication Management

What are the medication issues related to cancer?
How can we better manage the patient’s medications?
When should I talk to the patient's healthcare provider?



 


What are the medication issues related to cancer?

People with cancer often take many medications. Following the doctor’s orders can be hard when some need to be taken with food, some without, some in the morning, some at bedtime, some as needed, some once a day, and others multiple times a day, or even around the clock. Some medications may be taken by mouth; others injected. There are topicals, eye drops, transdermal patches, etc. It can be complicated!

Patients may have a hard time keeping track, and accidentally skip a dose.

Also, cancer drugs can cause side effects. These can make the patient feel unable or unwilling to take them as prescribed. Medication interactions can occur even when the patient is taking everything as prescribed.

Cancer patients often see several healthcare providers, who may not know what else the patient has been prescribed. The patient may accidentally be prescribed drugs that do the same things, or medications that shouldn’t be taken in together.

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How can we better manage the patient’s medications?

Keeping track

The most important thing is helping the patient keep track of medications. Work with her or him to create a record with the following information for each medication: 

  • Name of the medication    
  • Prescribed by (doctor)    
  • Prescribed for (purpose)    
  • Instructions (how much, when, for how long)    
  • Possible side effects    
  • Foods to avoid    
  • What to do if dose missed    
  • Pharmacy   

You can use this worksheet as a starting point. You can also ask another friend or family member—who is very well organized!—to handle this. For instance, someone who wants to help with caregiving but lives far away may be a good choice.

Whoever manages the medication records, be sure to include over-the-counter medications, vitamins, and herbal supplements. These can interact with prescription medication so the patient’s healthcare providers need to know about them. And, be sure to write down when prescriptions need to be refilled.

If possible, encourage the patient to use the same pharmacy to fill all prescriptions. The pharmacist can identify any drugs that might interact badly.

Make sure the person you’re caring for knows to take his or her medication record to all medical appointments and asks his or her healthcare provider to update it as needed.

Help the patient take their medication

You—or another person on the care team—can help the patient take medications day-to-day. For example, create a calendar together. Or suggest the patient set an alarm or daily phone reminders at medication times.

Some people with cancer find it helpful to prepare (or have someone prepare) their medications on a weekly basis. For oral medications, you can pick up a pill organizer with different slots for morning, noon, evening, and bedtime at any pharmacy. This can save time, and make it easier to keep track. But be sure to store medications as directed. Some need to be refrigerated; other kept out of the light; etc.

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When should I talk to the patient's healthcare provider?

You or the patient should contact his or her healthcare provider if:

  • The patient has missed a dose and you don’t know what to do.
  • The patient is having symptoms that may be side effects of medication like rashes, drowsiness, confusion, depression, insomnia, incontinence, muscle weakness, loss of appetite, balance problems, and/or changes in speech and memory.
  • The patient is having a hard time taking medications as prescribed.
  • The patient’s medication is not covered by insurance.

For more information, see Safe & Sound: How to Prevent Medication Mishaps (Caregiver Action Network).

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Next learn about...

Financial planning (Get help paying for medication)
Talking with healthcare providers

Making a caregiving plan

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Talking with Providers

Why is it important to talk with the patient's healthcare providers?
What do I need to know about the patient’s disease and treatment?
How do I talk with the patient’s healthcare providers?
When should I call the patient's healthcare provider?

 

 


Why is it important to talk with the patient's healthcare providers?

Please note: The patient will need to give permission for his or her healthcare providers to speak with you.

If you stay in touch with healthcare providers treating the cancer, you’ll likely have a better understanding of the disease and treatment. You’ll be better able to help the patient make decisions, and better able to anticipate his or her needs.

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What do I need to know about the patient’s disease and treatment?

Depending upon the level of caregiving you’re providing, you may need to know:

  • The diagnosis, including the stage of the disease
  • Medicines the patient is receiving
  • Possible side effects of treatment, how to manage them, and how they may change over treatment
  • How long the treatment will last
  • How the patient is expected to respond to treatment
  • Risks and benefits of treatment
  • Other treatment that might be available like clinical trials
  • When you should call the healthcare provider
  • Where to go to get more information
  • Where you can get support
  • Who you should call when you have questions

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How do I talk with the patient’s healthcare providers?

Many people have a hard time talking with doctors and other healthcare providers. You may feel your questions are foolish or silly. You may be afraid that if you report too many things, the provider will stop treatment. You may not be sure who to ask about what.

Here are some tips on talking with healthcare providers:

  • Work with the patient to write down all the questions you both have.
  • Ask clear and specific questions. Be frank.
  • If the patient is able, let him or her speak first.
  • Take notes during the appointment, and/or ask for permission to record the conversation.
  • Repeat what you hear, and ask if you’ve understood what’s been said.
  • If you don’t understand what the provider has said, ask him or her to explain it to you again using simpler terms.
  • Ask for copies of doctors' notes. You have a right to this information, and it's a good way to make sure you are following the care plan.
  • If you are concerned with the way something is going, tell the provider! He or she can only help if he knows there is a problem.
  • Try to learn which staff members give different kinds of information. For example, "Who can tell me when my family member/friend will be discharged?"
  • Talk about any physical, emotional or financial problems the patient is having that may get in the way of his or her.

This Communication Worksheet can help you organize your thoughts before you talk to a healthcare provider.

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When should I call the patient’s healthcare provider?

If there is an emergency, call 911. If you’re not sure if it’s an emergency, call your provider, tell them what’s happening and ask what to do.

Be sure to share any symptoms the patient is experiencing. Be specific.

  • What is happening?
  • How often?
  • How long have the symptoms been going on?
  • What makes them worse or better?
  • How severe are they on a scale of 0-10 (where 0 = no symptom and 10=worst imaginable)?
  • Are they getting in the way of daily activities?


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Next learn about…

Medication management
Emergency preparedness
Making a caregiving plan

Article Topics: 

Helping from a Distance

What does it mean to help from a distance?
How can I help from a distance?

 


 


What does it mean to help from a distance?

If you are caring for someone with cancer who lives more than an hour away, that’s “caring from afar” or helping from a distance. It can be emotionally and practically difficult. But you can help.

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How can I help from a distance?

Here are 10 things you can do from a distance:

  1. Help the person with cancer figure out how much care he or she will need. Determine whether he or she can stay at home. Your use the assessment on this site or this online Independent Living Assessment to help figure this out, and/or talk to the patient and his or her healthcare provider. If needed, look into in-home healthcare, in-home support services, and/or elder care.
  2. Call members of the patient’s support group like neighbors, friends, or the patient’s faith community. Tell them what's going on. Make sure they know how to reach you.
  3. Look into treatment options so that you can help the patient make decisions. If you have the patient’s permission, talk with his or her healthcare provider directly to be sure you understand the situation.
  4. Check-in regularly with the patient to see how he or she is doing. Ask about side effects that might be troubling him or her, and talk about ways to deal with them.
  5. Go over appointment schedules and transportation plans and help the patient troubleshoot if need be.
  6. Go over any questions the patient should ask his or her healthcare provider. Review the answers together.
  7. Look into agencies that can help with transportation, prescription costs, and patient support, and let the patient and/or local caregivers know about them. Or, call yourself and get information.
  8. Have an emergency plan in place. Make sure that everyone who needs this information has it.
  9. Maintain a list of the patient’s medications. Check-in to be sure he or she is taking medications as directed by the healthcare provider. Make sure this information is available to local caregivers.
  10. Take the lead in making sure the person with cancer has his or her legal and financial paperwork in order.

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Next learn about...

Talking with family & friends
Talking with healthcare providers
Emergency preparedness

Article Topics: 

Money

What are some financial issues related to cancer care?
How can we deal with financial issues related to cancer care?
Where can I get more information about cancer-related financial issues?



 


What are some financial issues related to cancer care?

Cancer can be a huge financial burden on families. Many treatment-related costs are not covered by insurance. You may also have additional, non-medical expenses like transportation, in-home care, childcare, etc. And, both you and the person with cancer may be unable to work as much during treatment and recovery—if at all.

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How can we deal with financial issues related to cancer care?

Here are some tips:

Insurance coverage

  • Ask the insurance company to assign a case manager to the patient. This may give you a single point-of-contact for questions about coverage and out-of-plan benefits.
  • Make sure you and the patient understand what treatments need to be pre-approved by the insurance company, and get the necessary approvals.
  • Keep detailed records when either you or the patient speaks with the insurance company. Write down: who you spoke to, what was said, and when you were in contact.
  • Understand your co-pays and deductibles, and keep track of them.
  • If the insurance declines to pay for something, ask again. Often it takes several tries.
  • Check out the state's Health Insurance Assistance program.
  • Find out if wigs are covered under the insurance plan. (Sometimes insurance companies will cover part or all the cost of a wig if a healthcare provider writes a prescription for a “hair prosthesis.")

Hospital bills

  • Check to be sure that medical bills are accurate. Billing errors happen. Call the hospital billing department if you have questions or concerns about charges.
  • Arrange for a meeting with someone from the hospital's billing department or talk to a hospital social worker about payment plans, reduced rates, "charity care," or "indigent care" programs.

Prescription coverage

Out-of-pocket prescriptions costs can add up quickly, especially if the patient is taking an oral chemotherapy drug. Ask the oncology provider or the hospital’s patient services representative if the company that makes the patient's chemotherapy has a “patient assistance plan” to help pay for it. You can also find out about prescription assistance plans on these websites:

Home healthcare

  • Home healthcare services can cost a lot, and are often not covered by insurance.
  • Talk to a hospital discharge planner about home care options and expenses.
  • Get help from a hospital social worker to figure out what services are needed and get help contacting a home healthcare agency.
  • Check to see what the patient’s insurance covers, and what’s needed to qualify for coverage. For example, you may need a doctor’s prescription for home care.
  • Check to see if there are state and federal medical assistance programs that can help.
  • Compare different home healthcare agencies. Look at what each agency provides and the cost of their services.
  • Look into borrowing home care equipment that’s not covered by insurance like a wheelchair, walker, or hospital bed.

Family financial planning

  • Figure out your monthly expenses. Include rent or mortgage, phone and utility bills, transportation, insurance premiums, food, clothing, child-care and elder-care costs, medical expenses, any monthly loan payments, taxes, tuition, legal and accounting fees, and anything else.
  • Prioritize your bills.
  • Ask utility companies, such as gas, electric, and phone, about available assistance programs.
  • Meet with a financial advisor to help make a plan for your family's finances.
  • Let your creditors know about your financial situation, if you are having trouble paying your bills.
  • Look at possible Social Security and Pension benefits including compassionate allowances from the Social Security Administration. (You may need power-of-attorney to talk to others about the patient’s financial and health matters.)
  • Make sure you and other family members have healthcare coverage, and long-term care insurance.

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Where can I get more information about cancer-related financial issues?

Here are some helpful websites:

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Next learn about...

Work
Transportation
Making a caregiving plan

Article Topics: 

Work

How can caregiving affect my work?
How can I deal with working and caregiving?
What is the Family Leave Medical Act (FLMA)?



 


How can caregiving affect my work?

Many people find it hard to balance work and caregiving. Medical appointments and other tasks can interrupt your work day. You may be sleeping poorly or distracted by feelings of anger, depression, or anxiety. You may find yourself working few hours or not as well.

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How can I deal with working and caregiving?

Here are some suggestions:

  • When possible, try to schedule the patient’s medical appointments and other caregiving jobs during breaks or lunchtime.
  • Ask your supervisor about your company’s policy regarding caregivers. Find out if your employer allows flex-time and/or alternative work schedules.
  • Offer to work an unpopular shift in exchange for flex-time.
  • Many large employers have an Employee Assistance Program (EAP). Ask your boss what support services are available. If your company doesn't have an EAP, talk with the human resources (HR) department.
  • It is usually more trouble for your employer to replace you than help you make it work. If you are thinking of quitting, talk with your boss first. He or she may be more willing to help than you think.
  • If you work for a company with more than 50 employees, ask for information on the Family Medical Leave Act (FMLA).
  • Consider your job as an opportunity to take a short break from caregiving. A recent study showed that working family caregivers do better than non-working caregivers.

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What is the Family Medical Leave Act (FMLA)?

The FMLA gives you the right to take time off work without losing your job if you are ill or caring for an ill family member.

The FMLA:

  • Applies to workers at all government agencies and schools nationwide, as well as private companies with 50 or more employees within 75 miles of the work site.
  • Guarantees that eligible employees can take up to 12 weeks of unpaid leave, which can be used all at once or in increments as short as a few hours at a time (in the event an employee wants to work part-time or needs time off for appointments).
  • Guarantees that eligible employees maintain their health insurance benefits while out on leave.
  • Guarantees that an employee who returns to work will be given his or her previous position or an equivalent job with the same salary, benefits and other conditions of employment.
  • Covers employees who have worked for their employer for at least 12 months, including at least 1,250 hours during the most recent 12 months.

For more information: FMLA web page (U.S. Department of Labor)

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Next learn about...

Money
Transportation
Making a caregiving plan

Article Topics: 

Transportation

What are some transportation issues related to cancer care?
How can I deal with transportation issues related to cancer care?
What about when I just can’t get the patient to an appointment?

 

 


What are some transportation issues related to cancer care?

During treatment the person with cancer may need to go to the hospital or clinic often over the course of many weeks. Because treatment can cause weakness, pain, fatigue, nausea, and vomiting, he or she may not be able to drive him or herself. Added to that, you may be in charge of driving other family members. For example, you may have children you need to take to school or lessons.

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How can I deal with the transportation issues related to cancer care?

Here are some tips:

Step 1: Identify the problem
Write down on a calendar who needs a ride, when and where. Be sure to include lab draws, treatment, and other tests or appointments, as well as family activities like school, lessons, work, etc.

Step 2: Figure out who can help
List all available transportation options. Be sure to include family, friends, neighbors, church members, public transportation, volunteer driver programs (through churches or hospitals), hospital vans, other caregiving families that might carpool, private door-through-door escort services, and paratransit (public transportation for the elderly and disabled). You can find more information at the National Center on Senior Transportation.

Step 3: Make it easy for people to help
Ask others to let you know when they might be able to help drive. Then, make specific requests. For example, instead of, "Can you help me take Bob to doctor appointments?" Try, "Can you drive Bob to and from his chemotherapy next Monday at 3:00pm?" You can also ask your friends and family to help you make the transportation schedule, and/or make calls to line up rides.

Step 4: Get organized
Print maps to the different appointment locations. On the top of the map write the time of the appointment, the name of the building where the appointment is located, the room number, and a contact number for the appointment. Let the person driving know where to park. Keep a folder with multiple copies of the maps so you always have them on hand.

Step 5: Let the patient know the plan
Talk to the patient when making driving plans, and make sure the plan is OK with him or her. You don’t want the person you’re caring for to feel he or she is being "shuffled" around.

Step 6: Make a travel pack
Make a travel bag with:

  • The patient's medication list
  • Insurance cards
  • Identification
  • Small amount of money
  • Personal items like house key and cellphone
  • Your contact information
  • Other emergency contact information
  • A snack in case of delays
  • A bottle of water
  • Wipes, tissues or paper towels
  • Incontinence products (if needed)
  • Change of clothes

Be sure to give this to the driver.

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What about when I just can’t get the patient to an appointment?

Sometimes, in spite of your best efforts, you won’t be able to get the patient to an appointment. Let the doctor's office or clinic know right away. They may be able to reschedule without a missed-appointment fee.

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Next learn about...

Getting help with caregiving
Talking with friends & family
Making a caregiving plan

Article Topics: 

Home Safety

What can I do to make the patient’s home safe?
Hallways & entryways
Bedroom
Kitchen
Bathrooms


 


What can I do to make the patient’s home safe?

Most homes are not designed for people with disabilities or chronic illnesses. Follow the tips below to improve home safety. You might also ask a home healthcare worker to check the home for hazards.

Throughout the house you’ll want to:

  • Remove rugs or raised room dividers to prevent falls, and/or secure rugs and floor coverings.
  • Move furniture to make clear pathways from room to room.
  • Make sure the phone can be reached easily. Post emergency numbers by the phones.
  • Identify potential hazards like dangling cords, toxins and unsteady chairs, and remove them.
  • Remove clutter, especially on the floor.
  • Make sure the house is well lit. (Changing light bulbs is a great way for a friend to help!)
  • Make sure light switches are easy to reach.
  • Check that home's smoke alarms and fire extinguishers work.
  • Consider installing a personal emergency response system (to enable your family member or friend to get help with the push of a button), or get him or her a fall-monitoring device.
  • Consider giving the patient an intercom, baby monitor, or bell so he or she can get the caregiver’s attention when not in the same room.

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Hallways & entryways

  • If needed, build a ramp for wheelchair access.
  • Add nightlights in hallways.
  • Install handrails on both sides of stairways and in the halls.
  • Place carpet or safety grip on the stairs.

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Bedroom

  • Make sure the bed is not too high.
  • Be sure there is a clear, well lit path from the bed to the bathroom.
  • Place a phone in the bedroom.

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Kitchen

  • Make sure that the work places are easy to reach.
  • Make sure the person can sit down while preparing food or cleaning up.

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Bathrooms

  • Install a raised toilet seat.
  • Add grab bars near the toilet and bathtub.
  • Use nonskid mats on the bathroom floor and in the bath and shower to prevent falls.
  • Check the water faucets for ease of use.
  • Check the towel racks and be sure they can support an adult.
  • Check the water heater to make sure it's not set too high or too low.

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Next learn about...

Medication management
Transportation
Emergency preparedness

Article Topics: 

Emergency Preparedness

What should I prepare for?
How can I prepare for emergencies?
What if I live far away?
When do I call 911?

 

 


What should I prepare for?

People with cancer sometime have serious, even life-threatening, events. These can be caused by the disease or treatment. You are less likely to be surprised by emergencies if you’ve learned about the person’s illness, and know what to expect. You’re also less likely to be caught off guard if you stay in touch with the patient, and his or her healthcare providers.

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How can I prepare for emergencies?

There are lots of ways to prepare:

  • Make sure that the patient’s phone has important numbers on “speed dial," including 911, yourself, other family, friends and support people, healthcare providers, and neighbors.
  • Make sure the patient has an emergency travel pack ready with his or her medication list, insurance cards, identification, medial allergies, and emergency contact information. Include healthy snacks and water for both the patient and yourself.
  • Keep a list of important names and numbers handy. Include the patient’s healthcare providers (by role), home healthcare agencies, local caregivers, and the patient’s other family, friends, neighbors, or support people.
  • Keep an up-to-date medication record for the patient on hand in case you need to speak with his or her healthcare providers.
  • If you have a Healthcare Proxy, keep a copy with you. The Healthcare Proxy shows that you legal power to make medical decisions if the patient can’t.
  • Be sure you have the exact address of the patient in case you need to call an ambulance for him or her.
  • Set up a phone tree to keep people in the patient’s support network up-to-date.

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What if I live far away?

If, in an emergency, you’ll have to travel to be with your loved one:

  • Make sure the people in your life know that you may have to leave on short notice, including your employer.
  • Have someone lined up in advance to care for children and pets, and take care of important household chores like the garden, mail, etc.
  • If you will be traveling by plane, know which airlines fly direct from your home to the patient’s area, and be aware that airlines sometimes give discounts for last minute travel due to medical emergencies.
  • If you will be driving, make sure your car is serviced regularly. Keep the gas tank mostly full. Keep a map in the car of the quickest route to the patient’s home and nearby hospital.
  • Have a small bag packed with toiletries and a change of clothes.

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When do I call 911?

Call 911 if you know that the patient:

  • Is unconscious, confused and/or hallucinating
  • Has chest pain or other severe pain
  • Is having trouble breathing
  • Has no pulse
  • Is bleeding severely or vomiting blood
  • Has had a seizure or bad fall
  • Has a severe headache and slurred speech
  • Has pressure or severe pain in the abdomen
  • Is unable to walk

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Next learn about...

Talking with healthcare providers
Medication management
Home safety

Article Topics: 
This website was created to provide information, education, and support that will help cancer caregivers care for themselves and their family members. It is not meant as medical advice. Please check with your physician for any advice about your health.