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When Someone You Love Has Advanced Cancer: Support for Caregivers

  • Posted: 01/10/2012

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Life Planning

Handling Money Worries
Coping with Work Issues
Looking at Living Arrangements
Advance Directives
Other Legal Papers
Other Planning

It's common to feel sad, angry, or worried about lifestyle changes that happen because of your loved one's cancer. You may also be making major decisions that will affect your job or your finances. Finding ways to cope with these issues can bring some peace of mind.

Handling Money Worries

"I'm not working for the money. I'm working for the benefits. If we don't have benefits, we'd lose everything." — Philip

The financial challenges that people with cancer and their families face are very real. During an illness, you may find it's hard to have enough time or energy to review your options. Yet it's important to keep your family financially healthy.

For hospital bills, you or your loved one may want to talk with a hospital financial counselor. You may be able to work out a monthly payment plan or even get a reduced rate. You should also stay in touch with the insurance company to make sure certain treatment costs are covered.

For information about resources that are available, see the Resources section. You can also get the NCI fact sheet, Resources for Financial Assistance for Patients and Their Families. Or call toll-free 1-800-4-CANCER (1-800-422-6237) to ask for a free copy.

Coping with Work Issues

"A lot of times I come home from being at the hospital with no sleep and then have to get to work the next morning. It's very tiring." — Betsy

One of the greatest sources of strain is trying to balance work demands with providing care and support. The stress of caregiving can have effects on your work life in many ways, such as:

  • Causing mood swings that leave coworkers confused or reluctant to work with you
  • Making you distracted or less productive
  • Causing you to be late or call in sick because of stress
  • Creating pressure from being the sole provider for your family if your spouse or partner is unable to work
  • Creating pressure to keep working, even though retirement may have been approaching

It's a good idea to check into your company's rules and policies related to a loved one's illness. See if there are any support programs for employees. Many companies have employee assistance programs with work-life counselors for you to talk with. Some companies have eldercare policies or other employee benefit programs that can help support you. Your employer may let you use your paid sick leave or leave without pay.

If your employer doesn't have any policies in place, you could try to arrange something informally. Examples include flex-time, switching shifts with coworkers, adjusting your schedule, or telecommuting as needed.

The Family and Medical Leave Act may apply to your situation. Covered employers must give eligible employees up to 12 work weeks of unpaid leave during a 12-month period to care for an immediate family member with a serious health condition. Visit www.dol.gov/whd/fmla/index.htm for more information. For sources of support, see the Resources section.

Looking at Living Arrangements

Sometimes questions are raised about whether a loved one should live alone or with someone else. When making these decisions, here are a few good questions to ask:

  • What kind of help does your loved one need?
  • Is it risky for her to live alone?
  • How often will she need help?

You'll also need to consider how your loved one feels. She may fear:

  • Losing her independence
  • Being seen as weak or a burden to others
  • Moving to a health care or other type of assisted living facility

Sometimes it's easier to consider a change in living arrangements when the advice comes from a health professional. Social workers, including visiting nurses, those who work with older adults, and others may be able to help you talk to your loved one.

Advance Directives

If you have not done so already, it's important to start talking with your loved one about his wishes. There may come a time when he can't tell the health care team what he needs. Some people prefer to let their doctor or family members make decisions for them. But often people with cancer feel better once their wishes are known. Talk with your loved one about what kind of care he wants. The more you know, the more prepared you'll be.

  • Advance directives are legal papers that tell the doctors what to do if your loved one can't tell them himself. The papers let the patient decide ahead of time how he wants to be treated. They may include a living will and a durable power of attorney.
  • A living will lets people know what kind of medical care patients want if they are unable to speak for themselves.
  • A durable power of attorney for health care names a person to make medical decisions for a patient when she can't make them herself. This person, chosen by the patient, is called a health care proxy. It should be a person she trusts to carry out her decisions and preferences.

Setting up an advance directive is not the same as giving up. Making decisions now keeps the patient in control. This way, his wishes are known and can be followed. This can help everyone worry less about the future and live each day to the fullest.

Make copies of your loved one's advance directives for the health care team and the hospital medical records department. Keep one set for yourself. This will ensure that everyone knows his wishes.

A lawyer is not always needed to fill out these documents. But you may need a notary public. Each state has its own laws concerning living wills and durable powers of attorney. These laws can vary in important details. In some states, a living will or durable power of attorney signed in another state isn't legal. Talk with a lawyer or social worker to get more details. Or look at your state's government Web site.

You and your loved one may have different opinions about the contents of the advance directives. You should share your opinions, but in the end, it's his choice. If you both can't agree, you may want to ask someone else to guide the conversation between you both. You might talk to a member of your faith community, a social worker, other people dealing with cancer, or a hospice worker.

Other Legal Papers

Here are some other legal papers that are not part of the advance directives:

  • A will tells how a person wants to divide money and property among heirs (survivors).
  • Legal power of attorney appoints a person to make financial decisions for the patient when he can't make them.

Other Planning

Careful planning may reduce the financial, legal, and emotional burden you may face if your loved one dies. For many people, it's hard to bring up these subjects. But talking about them now can help you avoid problems later.

Maybe you don't feel comfortable bringing up the subject. Or maybe your family simply doesn't talk about these things. In either case, seek help from a member of the health care team. They may be able to help your loved one and your family understand the importance of talking about these issues early.

  • Clearing up insurance issues. Contact the health insurance company if the patient decides to try a new treatment or get hospice care. Most insurance plans cover hospice. They also cover brief home visits from a nurse or home health aide several times a week. But it's wise to ask in advance. This may prevent payment problems later.
  • Putting affairs in order. You can help your loved one by making sure that he organizes his records, insurance policies, documents, and instructions. He may want to call his bank to make sure that he has taken all the right steps.
  • Talking about funeral wishes. Some people plan services that are celebrations. Others prefer more traditional services. You and your loved one may want to plan a funeral or memorial service together. It may help both of you to plan a ceremony that meets her desires and has her personal touch.

A Checklist for Organizing Your Loved One's Affairs

  • If your loved one can't physically gather important papers, have her make a list of where you can find them.
  • Keep papers in a fireproof box or with a lawyer.
  • If your loved one keeps important papers in a safe deposit box, he should make sure that a trusted family member or friend has access to it.
  • Although original documents are needed for legal purposes, family members should have photocopies.

A worksheet of personal affairs may be found below. You can use it as a guide to the types of papers your family will need.