Caring from Afar

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

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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.

How do we make a Caregiving Plan?

To make a Caregiving Plan:

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.
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.
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.
Have a family meeting
Learn more about planning a family meeting.
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
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
Mental health
Everyday activities
Home safety
Finance
Insurance
Legal
Interests & lifestyle

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?

Next learn about…

Transportation
Medication management
Emergency preparedness
Home safety

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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?

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Talking with Family & Friends

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.

What sort of things do we need to talk about?

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

Treatment and care decisions
Changing roles
Changes to your social life
Changes to your sexual life
Caregiver stress and caregiver overload
Negative feelings like anger, anxiety, depression, loneliness, fear and uncertainty

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.

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:

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

Next learn about…

Family meetings
Getting help with caregiving
Talking with healthcare providers

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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?

Family Meetings

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.

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.

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.

How do we make our family meetings work?

Here are some tips:

Review the tips on talking with family & friends about caregiving. Consider sharing these with everyone before the meeting.
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.
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.
Consider having an “outsider” lead the meeting. A social worker, pastor, or nurse may be more able to keep the meeting on track.
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
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.
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.
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.
Have someone take notes. The note-taker should write down decisions and assignments. Give everyone a copy of the notes after the meeting.
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.
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.
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.

Next learn about…

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

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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?

Medication Management

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.

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.

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).

Next learn about...

Financial planning (Get help paying for medication)
Talking with healthcare providers
Making a caregiving plan

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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?

Talking with Providers

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.

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

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.

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?

Next learn about…

Medication management
Emergency preparedness
Making a caregiving plan

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

Helping 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.

How can I help from a distance?

Here are 10 things you can do from a distance:

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.
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.
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.
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.
Go over appointment schedules and transportation plans and help the patient troubleshoot if need be.
Go over any questions the patient should ask his or her healthcare provider. Review the answers together.
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.
Have an emergency plan in place. Make sure that everyone who needs this information has it.
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.
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

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

Emergency Preparedness

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.

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

Next learn about...

Talking with healthcare providers
Medication management
Home safety

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