Full-time caregiving at home is not the right choice for every family. It’s good to know that there is a range of care options available. Your healthcare team’s social worker or patient navigator is a great source for recommendations on community-based resources and programs.
Assisted Care Options
Adult Day Care
Adult day care is a planned program of supportive activities designed to promote well-being for those who want to remain a part of the community but can no longer manage independently. Adult day care may be a good choice if the patient:
- Experiences difficulty performing daily living activities
- Has trouble processing thoughts or recognizing familiar surroundings
- Deals with memory problems
- Should not be left alone for an extended period
In choosing an adult day care center, consider the available physical and occupational therapies, opportunities to socialize, healthcare monitoring, and personal care services from which your family member may benefit. Some adult day care centers provide transportation to and from the center, caregiver support services, and health monitoring services.
For more information about adult day care:
When your family member’s needs are constant and you are beginning to feel overwhelmed, it may be time to consider home care services. Think about the level of care and number of hours needed, and then contact your insurance company to see what home care benefits might be covered in your policy.
Start by asking the patient’s healthcare team and other people you know for home care provider recommendations. Once you have narrowed down your list of potential providers, here are some questions to ask them:
- How long have you been serving the community?
- Do you provide literature outlining your services and fees?
- How do you select and train your employees?
- What type of evaluation is done regarding the type of home care the patient will receive and who completes the evaluations?
- Do you provide the family with treatment and progress updates?
- How do you handle problems and emergencies?
- What sort of continuing education is provided for employees?
- Are background checks completed on caregivers before they are hired?
- Can you provide references?
- Do any of your caregivers specialize in working with brain tumor patients?
For more information about in-home care:
Assisted Living Facilities and Nursing Homes
For brain tumor patients who need help with activities of daily living (ADLs), an assisted living facility can be a viable option. Your family member can enjoy as much independence as he or she can handle yet, at the same time, receive assistance with ADLs such as bathing, grooming, and eating.
Some assisted living facilities are only designed for those over age 65, while others have more age-flexible admissions policies. Most include nutritious meals, housekeeping services, transportation, and many social activities for an all-inclusive monthly fee.
For brain tumor patients who require a higher level of attention from a medical professional, a nursing home may be a good option. Nursing homes have medical staff available 24 hours a day, every day of the week. In some cases, patients will only stay in nursing homes for a few months to receive rehabilitative care.
Your primary goal is to find a facility that will offer a safe and supportive environment for your family member. Visit a few facilities with an appointment and also show up unexpectedly and ask to view the facility and interview the staff. Here are some questions you may want to ask:
- Is your facility able to accommodate your family member’s needs…not just now, but in the future?
- Where are the closest hospitals and other supportive services?
- Does your physician make regular rounds at the facility? What is the emergency procedure if your physician is not on-call?
- What types of conditions are accepted? Are you able to effectively care for residents who experience memory loss, impaired thinking abilities, or limited mobility?
- What is the schedule of activities that are open for residents and their families?
- Is your staff composed of licensed health care and rehabilitation specialists? Does any staff specialize in working with people who have brain tumors? What types of continuing education are provided to staff?
- What type of contract is required?
- What does the most recent state audit of the facility look like?
For more information about assisted living facilities and nursing homes:
What is palliative care?
Palliative care is specialized medical care for people with serious illnesses. In addition to being used throughout your brain tumor journey, this life-affirming approach to care may also be used for end-of-life care in a hospice setting. The focus is on providing you with relief from the symptoms, pain, and stress of your brain tumor, while improving quality of life for both you and your family.
Palliative care specialists work together as a team to provide an extra layer of support to give you the best possible quality of life. You do not have to stop other treatments in order to qualify for palliative care: it is appropriate at any stage of your brain tumor journey and can be provided along with treatments that are meant to cure.
Keep in mind that you do not have to choose between aggressive treatment and palliative care. Even as you undergo treatment, you can ask the palliative care team to provide counseling services or help manage your side effects from treatment, such as headaches, seizures, fatigue, and mood changes.
How to receive palliative care
Ask your doctor, nurse, navigator, or social worker for a referral. If your hospital does not offer palliative care, you may be able to get it from another organization at your home or an assisted living facility.
Speak to your doctor openly and honestly about what quality of life means to you: spending more pain-free time with your family, having your symptoms aggressively treated, and making your own decisions about your care, among others.
Let your doctor know about any personal, religious, or cultural beliefs, so that they can be integrated into your care and treatment decisions. You may also wish to tell your physician what curative treatments you may or may not want, such as reviving you if your heart were to stop or artificial nutrition by feeding tube if you become unable to eat. These discussions are a way of gaining greater control of your treatment protocol. For more information, see advance care planning.
The palliative care team – typically made up of a doctor, nurse, social worker and spiritual counselor – will develop a specific palliative care plan for you, based on your conditions and personal preferences. Other physicians or nurses on your healthcare team may have additional certifications in palliative care.
Team members may also include massage, art, and music therapists; pharmacists; nutritionists; yoga therapists; trained volunteers; and most importantly, you and your family.
Is palliative care covered by insurance?
In most cases, your insurance company will reimburse hospitals for palliative services beyond doctor visits and care related to the end of life. Policies vary, so you or your caregiver will need to contact your insurer to inquire about coverage.
For more information on palliative care:
The National Hospice and Palliative Care Organization – dedicated to improving end-of-life care for patients and their loved ones.
Get Palliative Care – a resource provided by the Center to Advance Palliative Care, Get Palliative Care can help you learn about available palliative care options and decide whether they’re right for you.
Palliative Doctors – helps connect patients and families with local palliative care and hospice resources. Information provided by the American Academy of Hospice and Palliative Medicine.