Practical Matters

Getting Caregiver Help

Why is it important to ask for and accept caregiver help?
How can others help me with caregiving?
When and how do I ask for caregiver help?

 

 


Why is it important to ask for and accept caregiver help?

Caring for someone with cancer can be hard. As a caregiver, you are at increased risk of emotional, mental, and physical problems. You may feel stress, anger, anxiety, depression, fatigue, loneliness, and uncertainty. Some caregivers find it difficult to ask for help. You may feel embarrassed or like you’re imposing on others. But getting caregiver help is important—for both for you and the person you are caring for.  

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How can others help me with caregiving?

There are lots of ways people can help caregivers. Ask them to:

Emotional support

  • Spend time with the patient so you have time to take care of yourself.
  • Give you a chance to talk through any feelings you have of anger, anxiety, sadness, fatigue, fear, and loneliness.  
  • Help you find help if you’re struggling with stress, overload, substance abuse or other issues.
  • Spend time with your family, and get you out of the house (if possible).
  • Have a positive attitude. It is catching!

Daily chores & activities

  • Shop for groceries, medications and other things.
  • Prepare meals for your family or help you plan meals.
  • Keep track of the patient’s medications and refills.
  • Help with yard work, dishes, laundry and other household chores
  • Help with transportation, including driving or organizing rides.
  • Walk or feed your pet.
  • Exercise with you—even if it’s just a short walk.
  • Help sort and pay bills.

Communications

Money

  • Help with insurance, including figuring out coverage, getting any needed pre-approvals for treatment, keeping track of payments, reimbursement and communications.
  • Research any prescription assistance and other aid programs.

Other

  • Help you research treatment options and understand what to expect.
  • Prepare a travel pack for the patient to take to treatment.
  • Make sure the patient’s home is safe.

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When and how do I ask for caregiver help?

It is never too early to ask for help. If you can, ask before you need it. This has the added benefit of giving others time to plan.

Start by asking the person you’re taking care of to help you make a list of friends, family and anyone else who might lend a hand. Don’t overlook people you may not know well. People at your church, school or work may want to help. Next, call the people on your list, and ask if they are willing to pitch in. Even if you don’t end up needing their help, it will be good to know it’s there just in case.

Remember that many people do want to help, but don’t know what they can do. Tell them exactly what you’d like. For example, “Can you take Joe for a lab draw on Monday morning before 9am?”

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Next learn about…

Making a caregiving plan
Talking with family & friends
Family meetings

Article Topics: 

Making a Caregiving Plan

What is a Caregiving Plan?
How do we make a Caregiving Plan?
What do we need to think about when making a Caregiving Plan?

 

 


What is a Caregiving Plan?

A Caregiving Plan lays out what needs to be done to manage the health and well-being of the patient. Unlike the doctor’s “plan of care,” the Caregiving Plan addresses mostly non-medical issues. A Caregiving Plan can help you line up outside help ahead of time, avoid schedule conflicts, improve communication, and reduce caregiver stress and overload.

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How do we make a Caregiving Plan?

To make a Caregiving Plan:

  1. Prepare
    Talk to the patient about the level of care he or she thinks will be needed. The person receiving care should have the biggest voice unless he or she is mentally or physically unable.
  2. Pull your team together
    Make a list of everyone who wants to help, including family members, close friends, health professionals, home care workers and others in the community.
  3. Take stock of the situation
    See the section below on areas you need to think about. Remember that the level of care needed can change. The person with cancer may only need help for brief periods of time like after surgery or chemotherapy. Or, he or she may need constant or almost-constant care. People who are not able to recover will likely need more help as time passes.
  4. Have a family meeting
    Learn more about planning a family meeting.
  5. Make the Plan
    Once you have put together your team, and considered the patient’s needs, it is time to sit down with all the players and put your Caregiving Plan together. The written Plan should include:
    • Contact information for all the patient’s healthcare providers
    • Contact information for the caregiving team
    • A caregiving schedule
    • A list of assigned tasks (for example, “Laundry: Rebecca, Tuesday evenings”)
    • A list of the patient's medications and instructions
    • Other important medical information
    • Instructions for what to do in an emergency
  6. Take action
    Make sure everyone has a copy of the Plan. Then check-in with each other regularly to make sure things are getting done. The care team should assign a point person for each area of care. This doesn’t mean that person has to do everything in that area—just that he or she is responsible for seeing to it that those tasks are done. As things change, be sure to update the Plan.

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What do we need to think about when making a Caregiving Plan?

You’ll want to do look at how the patient is doing in these areas:

Physical health & medication

Is the patient able to see and hear well? Does the person need professional nursing care to manage wounds, drains, catheters or other medical equipment? Does he or she have other diseases that need to be managed like diabetes, high blood pressure, arthritis or emphysema? What medication is the patient taking? Does the patient need assistance taking medication or remembering to take medication?

Mental health

Does the patient have any mental health issues like depression, anxiety or psychosis? Should he or she be seen by a mental healthcare professional?

Everyday activities

Does the patient have problems with incontinence (inability to control urine or bowel movements)? Can he or she move around safely and comfortable? Can he or she dress, bathe, shave, brush teeth, wash hair, use a toilet, and use the phone without assistance? Can the person get help in an emergency, shop, prepare meals, do housework, yard work, and/or drive safely? Does the patient have any eating issues?

Home safety

Are there any hazards in the home? What type of yard and house maintenance is needed? Are there stairs? Can the patient manage these? Are there grab bars in the bathroom? Are these needed? If the person with cancer lives alone, is there an emergency call system in place? (Learn more about home safety.)

Finances

Can the patient manage his or her affairs, including paying bills? What is the patient earning and spending? What are his or her income sources (e.g. Social Security, pensions, salary, investments, etc.)? How long will his or her savings last? Are there any other sources of financial assistance? Where are important financial documents—like the car and home title and insurance policies—stored?

Insurance

What insurance coverage does the patient have? Medicare? Medicaid? Private insurance? Does the patient have long-term care insurance, supplementary insurance or life insurance? Does insurance cover "non-medical" personal care? Has the patient been told that insurance won't cover medical tests or procedures that the doctor has ordered?

Legal

Does the patient have a will, trust, advance directive, or living will? Have they signed a healthcare proxy or power of attorney? Do the primary caregiver and/or caregiving team have access to these?

Interests & lifestyle

What are the patient’s hobbies? Does he or she belong to a church or other faith-based group? Does he or she get out of the house for social reasons? Get visitors at home? Do family members live close by? Is there someone from the patient’s faith community that can drive them to services?

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Next learn about…

Transportation
Medication management
Emergency preparedness
Home safety

Article Topics: 

Talking with Family & Friends

Why is it hard to talk with family and friends about caregiving?
What sort of things do we need to talk about?
How can I better talk with others about caregiving?
What do I do when someone says something hurtful?


 


Why is it hard to talk with family and friends about caregiving?

Many caregivers find it difficult to speak with the person who is sick. You and your loved one are in this together, but your experiences and roles are very different. For example, the cancer patient may be frustrated that he or she cannot do more. And you, the caregiver, may feel stressed and overloaded because you have too much to do. You may have negative feelings but not want to burden one another. Both of you may be deeply afraid.

 

You may also find it hard to speak with family and friends about what you need in the way of help, and/or how you’re feeling. You may not feel comfortable talking about your own needs when you’re not the one with cancer.

Talking openly and honestly is a must. You have practical challenges that need to be handled, and feelings that need to be dealt with.

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What sort of things do we need to talk about?

Here are some things that you may need to talk about:

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How can I better talk with others about caregiving?

Here are some tips for talking with the person you are caring for and others on the caregiving team:

  • Set aside time to talk. Find a quiet time without interruptions.
  • Ask if it’s a good time before you start a talk. Be clear about why you want to talk, and what you hope will come from it.
  • Try to avoid serious talks when either of you are likely to be tired like the end of the day or following chemotherapy.
  • Think about what you want to say ahead of time. You may even want to practice.
  • Use "I" statements like, "I have a hard time talking about this, too." Avoid using "you" statements, such as "You always..." or "You never...”
  • Speak from your heart.
  • Make eye contact. Try to have open body language.
  • Be patient.
  • Be calm when you talk. Try to not get angry or blame others for your feelings.
  • Summarize what the other person has said to be sure that you have understood.
  • If the other person seems to have misunderstood, try explaining what you meant with different words.
  • Allow the other person to talk. Listen and try not to interrupt.
  • Try not to hold back to protect one another’s feeling, and ask the other person to do the same.
  • Know that the other person may not want to hear what you have to say. And, know that you may not like what he or she has to say.
  • Don’t feel like things have to be settled after one talk.
  • Don't feel that you have to always say, "It'll be okay."
  • Remember that people express their emotions differently.
  • If you are having a hard time talking with the person you are caring for or others involved in caregiving, get help. Consider asking a licensed counselor, therapist or clergyman to mediate the conversation. Your doctor can suggest someone.

Talking may be hard in the beginning. But it will get easier if everyone is open and honest about their feelings.

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What do I do when someone says something hurtful?

Some people may not know how to talk with you about cancer and caregiving. Their well-meaning comments may be hurtful. It is OK to feel hurt, angry or shocked. Here are 3 ways to deal with insensitive remarks:

  1. Be straightforward and honest. Tell the person that the question or comment hurt your feelings.
  2. Ignore the comment.
  3. Answer questions in a general way to avoid further discussion. It is your right to share as much or as little as you want.

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Next learn about…

Family meetings
Getting help with caregiving
Talking with healthcare providers
 

Article Topics: 

Family Meetings

What are family meetings?
When should we have a family meeting?
Who should be at our family meetings?
How do we make our family meetings work?

 

 


What are family meetings?

Family meetings can help you make sure that everyone understands the situation. Caring for someone with cancer is not a one-person job. You need others to pitch in. Even if they don’t give direct care, the time you spend caregiving may affect them. Meetings are a way to keep everyone informed and involved. Family meetings can be a good place to problem-solve and share opinions. Sometimes, doctors and nurses hold meetings to help the family understand the diagnosis and treatment.

Not all family meetings go smoothly. Feelings about the person’s cancer diagnosis and future, bad past relationships, and poor communication can get in the way. But the results can be positive.

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When should we have a family meeting?

You should have a family meeting when:

  • Your loved one is diagnosed.
  • You need to make decisions.
  • You need to solve problems.
  • The health of the patient changes.

Some families meet on a regular basis to share news, deal with issues as they come up, make decisions, and talk about their feelings and needs.

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Who should be at our family meetings?

Invite everyone who will be caring for the person with cancer, including family members, close friends, neighbors, and paid caregivers. Also think about including family and friends who live outside the area. There are ways for them to help from a distance.

A big decision is whether the person being cared for should be at every family meeting. On one hand, the patient needs to voice his or her ideas and concerns. On the other hand, family members and friends may not be as frank around him or her. If you don’t include the person being cared for, sit down with him or her before and after the meeting so that he or she stays in the loop.

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How do we make our family meetings work?

Here are some tips:

  1. Review the tips on talking with family & friends about caregiving. Consider sharing these with everyone before the meeting.
  2. Hold the family meeting at a neutral and comfortable place. This could be someone's home, office, a room at the doctor’s, or the phone.
  3. Pick a time and place when you will not be interrupted. Ask people to turn off their cell phones or put them on vibrate. If small children will be there, have a sitter watch them in a different part of the house.
  4. Consider having an “outsider” lead the meeting. A social worker, pastor, or nurse may be more able to keep the meeting on track.
  5. Prepare an agenda and give it out before the meeting. Put the most important items first. For example, you may want to discuss:
    • Patient’s health status (especially any changes)
    • Goals of treatment/care
    • Daily caregiving needs
    • Financial issues
    • Decision-making
    • Individual roles
    • Primary caregiver support needs
  6. Put a time limit on each item. For example, "We will talk for 20 minutes about money and then we need to move on to helping with housework." Ask someone to keep track of the time.
  7. Prepare for difficult people. If you think some of the attendees might bring personal baggage to the meeting, talk to them in advance. If you have an outsider leading the meeting, give them a heads up.
  8. Prepare for disagreements. The family may not agree on some things. If you can’t reach an agreement, decide to try it one way for a month, and set a time to talk again about how things are working.
  9. Have someone take notes. The note-taker should write down decisions and assignments. Give everyone a copy of the notes after the meeting.
  10. Make sure to assign people tasks they can do well. For example, ask the cheerful, scattered cousin to sit with the patient rather than review bills.
  11. Remember that you can’t solve everything in one meeting. At the end of the family meeting, set up a time and a place for the next one.
  12. Follow-up. When you meet again, start by reviewing the notes and decisions from the previous meeting.

Both Care Well and Strength for Caring have information on family meetings.

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Next learn about…

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

Article Topics: 

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

Article Topics: 

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: 

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

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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

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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.