Whether you’re living with leukemia or caring for someone in treatment, it can be difficult and yet liberating to employ a home care team. Home care brings quality care, services, and procedures to the comfort of your home while decreasing the number of hospital and outpatient trips needed to manage your treatment plan. It also gives you another set of eyes to watch your health and how well you tolerate treatments.

The first step in initiating home care services is to talk with your doctor and health care team. A doctor must provide a doctor’s note and referral for the process to move forward.

You can work with your health care team to make an informed decision about whether you or your loved one would benefit from home care, and what services and hours you'll need.

Home Care Services for Those With Leukemia

Where you are in your leukemia treatment plan will help determine what home care services would be right for you. The care required may be more extensive after a hospital stay or if you are undergoing intense cancer treatment.

Home care might also be a good option to avoid caregiver burnout. It can be used for either long-term or short-term care.

Home care agencies can provide many services to people diagnosed with leukemia. These agencies can help not only in managing care and treatment plans, but also with improving quality of life from the comfort of home.

The types of home care services available include:

• Skilled nursing services (wound care, medication, intravenous infusions, indwelling catheters, lines, pain management)
• Physical therapy
• Social work
• Speech and language
• Occupational therapy
• Diet and nutritional counseling
• Activities of daily living (ADL) assistance (bathing, toileting, getting dressed, eating)
• Common chores (laundry, shopping, meal prep, cleaning)

Asking yourself and your care team the following questions can help you figure out what services are needed:

• How often is the person needing care alone in the house during the day and night?
• How many hours of home care will be needed?
• What type of assistance is needed (nursing, ADL, transportation, housekeeping, physical therapy, occupational therapy)?
• Do you need to modify your home in any way to make it safe, accessible, and convenient?

How To Choose a Reputable Home Care Agency

The type of home care agency you look for depends on what home care services you (or your loved one) need. There are many types of agencies that focus on specific services. The different categories of agencies typically include:

• Homemaker and home care aid agencies
• Staffing and private duty agencies
• Hospice care
• Medical supply and equipment companies
• Home infusion or pharmaceutical agencies
• Home health
• Independent providers

It is best to find an agency that is reputable, fits within your budget, and is covered by your insurance plan. The best place to start is to ask your doctor or health care team for a referral. Your state and local health departments are also good resources for finding an agency that is right for you. Additional resources to help you find a home care provider include:

• The National Association for Home Care and Hospice
• Leukemia & Lymphoma Society Information Specialists
• Centers for Medicare and Medicaid Services
• Home Health Compare

Interviewing Agencies

Take time to interview home care agencies so you can understand their policies and protocols. Some important questions to ask when evaluating home care services include:

• Will all staff undergo background checks?
• Is the staff medically trained and licensed?
• Who is supervising the trained personnel?
• How often will a registered nurse come to the house?
• What is the hourly price of services?
• What infection control and pandemic protocols will be in place?
• Will staff wear personal protective equipment (PPE)?

Asking your friends, network of health care professionals, and support group members who have the same or similar diagnoses can also help with important home care decision-making.

Paying for Home Care

Your financial status and health insurance policy will also be a factor when choosing if home care is right for your current situation. Many public and private insurance companies contribute to the cost of home care assistance if a physician documents such services as medically necessary.

Public Insurance

Home care may be covered under Medicare, Medicaid, or through the Department of Veterans Affairs.

Medicare

Medicare is a public health insurance program available for people over 65. Beneficiaries may qualify for home care coverage under Medicare Part A and/or Medicare Part B. People need to first qualify for services, and eligibility criteria usually include:

• A doctor must state that home care services are necessary.
• You must need one or more services, including skilled nursing, physical therapy, occupational therapy, or speech and language therapy.
• You must be homebound (leaving home takes a great deal of effort).

You can learn more about eligibility and coverage through the Centers for Medicare and Medicaid Services. You can also call a hotline for information at 800-633-4227 (or 800-MEDICARE).

Each state has a State Health Insurance Assistance Program (SHIP) that is designed to provide you with free health insurance information and help on services covered by Medicare and Medicaid, as well as other insurance programs.

Medicaid

Medicaid is a public insurance program for people below a certain income threshold, children, pregnant women, and people with certain disabilities. Federal Medicaid rules require that state Medicaid programs cover certain home health services, including part-time nursing care. The exact services available will depend on your state. To qualify for Medicaid, you must meet state-specific requirements around income and health needs. Note that not all home health services providers will accept Medicaid.

The American Council on Aging offers a helpful guide for understanding Medicaid’s home health services.

Veterans’ Benefits

If the person needing home care services is a veteran, the Department of Veterans Affairs can be a good resource for financial assistance depending on qualifying criteria.

Private Insurance

If you have a private health insurance policy, it may cover a portion of short-term home health care, and some policies may cover long-term home health. Make sure to check the specifics of your policy to get a good idea of how much the policy will cover before deciding on services and choosing an agency or caretaker.

Out-of-Pocket Costs

There is a chance that insurance will not cover all the expenses associated with home care services and part of the bill will need to be paid out of pocket. You or your family member can hire and pay a home care team out of pocket if need be, but you may need to consider payroll details such as taxes, Social Security, and holiday pay. The Internal Revenue Service (IRS) or a certified public accountant can help guide you. Occasionally, especially in emergencies and if notice is short, you may need to bring in your own help and pay privately to supplement what the agency supplies.

Establishing a Good Relationship With the Home Care Team

Finding a care team you trust can make all the difference in your care plan and your cancer journey. Some important elements to consider when hiring home care help include:

• Consistency to ensure you can build a rapport with one or two caregivers as opposed to a new person every day
• Compatible personalities
• Clear expectations, so you and the home health aide are on the same page

If a home health care team member is not a good fit, it is OK to ask the agency to send someone else. Developing a good relationship with all members of your health care team can make the treatment plan and management of your disease process go more smoothly.

You’re Not Alone

By joining MyLeukemiaTeam, you gain a community of more than 8,000 people who know what it’s like to live with leukemia.

Do you have experience with home care for leukemia? Share your experience in the comments below or on MyLeukemiaTeam.