Getting the help you need
Friends, family and professional help
For many people, asking for help is one of the most difficult aspects of caregiving. When friends and family ask “What can I do?” or “Let me know how I can help,” often our urge is to answer, “Nothing, thanks. We’re doing fine.” Here’s what some caregivers had to say about asking for help.
I felt like we had to constantly beg for help from different places.
I wish someone had helped me manage the help offered. I was trying to take care of my wife and our young children while continuing to work. It was hard to communicate what we needed help with.
I needed help organizing. All the appointments, medication schedules etc…I often ran into scheduling conflicts with our children’s activities and other life circumstances.
We needed financial assistance. I would have loved for someone to help us know which programs we were eligible for and how to complete the applications
Chances are, you will not always be “doing fine” and additional help could provide you with more time for other important tasks or the rest you need. Non-specific offers of help can be transformed into concrete assistance, with a little advance work. In addition, you may need to seek outside help for day-to-day or occasional tasks.
This article will help you learn how to ask for help from people you know, as well as provide resources for seeking outside help.
Friends and family: How to ask for help
I made a group on Facebook and posted every few days about my husband’s status as well as requests for help. For example, I’d ask, ‘Could someone help me research this?’ and I’d get so much in return.
Although there are so many ways for people to keep in touch today, asking for help is difficult. In one study, researchers found that it was harder to ask for some types of help than others. For example, some caregivers were more easily able to ask for physical care for the patient than for “respite” care that could provide the caretaker with a break.i
I wish someone had offered to give me the night off. I would have loved to just go out to a movie with my daughter.
Ways to ask for help include:
- Make a list of people who have offered help. Then ask a friend or family member to act as a care coordinator. Choose someone you feel comfortable being honest with about your needs. You may need someone to stay with the patient while you run errands, take over a night shift, grocery shop, provide meals, even clean. This friend or family member can then match the offers of help with the help needed on an ongoing basis.
- Free websites such as Caring Bridge, Lotsa Helping Hands and My Life Line can help keep family and friends informed of a patient’s progress during illness, and have features to set up calendars and volunteer opportunities. You can also set up calendars and updates through Facebook, Google Calendars, and other social media.
- Be specific about what you need. The more specific you are, the more likely you will be able to check something off your list.
- Email a link to the ABTA’s web page explaining how friends and family can help. Ask the friend or family member what they would like to do.
Think about who you know and what they do best. Your most reserved friend might not be a good choice for “chief communicator,” but she could be someone who can spend time with the patient while you run errands or relax.
Other examples of tasks family and friends can help with include:
- Household tasks: grocery shopping, cooking, cleaning, laundry, small home repairs, walking the dog, taking out trash, mowing the lawn, pick up/drop off dry cleaning, pharmacy runs, or help with child care.
- Transportation for you, the patient or your children.
- Communication: informing family and friends about the patient’s status and other ways they can provide support and help.
- Organization: scheduling both medical and non-medical appointments, organizing insurance and medical paperwork – even helping to match EOBs with medical bills can be helpful or helping with your child’s school/activity schedule.
- Patient help: spending time with the patient so that you can run errands, get rest, walk the dog or spend time with friends. If they feel comfortable, help with patient hygiene such has washing their hair or doing their nails and helping you move the patient when needed.
Getting help from the outside
Many caregivers of brain tumor patients find that they need more help than they and their friends and family can provide. Sometimes they need more skilled care, or they need care so they can go to work or have a small break. Other times, they physically cannot perform the tasks the patient needs, such as wound care, moving the patient, or helping the patient with self-hygiene.
Understand your insurance policy
Before you begin looking for care, be familiar with your insurance policy by obtaining a copy through the mail or printing it out from the web. Insurance policies often specify the type of care that will be reimbursed, and whether that care is measured in dollars or in hours.
In addition, before you obtain outside care, you will most likely need approval from the patient’s physician. Discuss your needs with him or her to determine the best options.
ABTA’s list of day-to-day care options for brain tumor patients includes information about adult day care, home care, assisted living facilities and nursing homes.
There are many state, regional and community resources for those dealing with cancer. Some are specific to brain tumors and some are general caregiver or cancer resources. These can include services like adult daycare or in-home care.
Although many brain tumor patients are not technically “aging,” for adults with brain tumors, many resources for aging patients can be helpful.
The U.S. Administration on Aging lists community resources, as does the Alzheimer’s Association. You can also look for your local chapter of the Brain Injury Association of America (BIAA). Although the organization does not provide specific information on brain tumors, the cognitive difficulties of brain injury and brain tumor patients are similar, so resources listed on state web sites can be helpful. Your state may also provide home care, transportation or respite services for brain tumor patients through the Department of Rehabilitation Services. Each state is different. You can find out more by contacting your local Health and Human Services office for details.
You may run into some challenges finding adult day care or assisted living facilities for brain tumor patients. Some nursing homes have an age limit of 65 and older. Others have waiting lists or only accept certain insurance policies. Your hospital social worker can help you navigate these resources and provide you with recommendations. A professional at the patient’s clinic may also be able to help.
You should also ask detailed questions of any care facility you are considering, such as:
- Have you worked with brain tumor patients before?
- Can visitors drop by or do they need to call first?
- What is the daily schedule like?
- Which professionals are on staff at what times?
Home care options
When the patient’s care needs become constant, it may be time to consider having a trained professional help the patient in your home. There are a wide variety of home care options available, from people who can assist as a companion to the patient, to medical professionals who can provide more complex services. Your insurance company may be able to provide you with home care benefits that might be covered in your policy, and whether or not you need a referral from a physician to receive coverage for home care.
Home care options can include:
- Non-medical companion care, to provide help with supervising, visiting, or assisting with recreational activities for the patient.
- Hygiene/personal care assistance, such as bathing, dressing, toileting, exercising, etc.
- Household care, which can include grocery shopping services, meal preparation, house cleaning, etc.
- Skilled medical care, which is often performed by licensed medical professionals who can help with a wide variety of needs, ranging from wound care and administering injections to providing physical therapy. These services are typically ordered by the patient’s physician.
Finding the right home care
Referrals from friends, family and others who have cared for brain tumor patients are usually the best way to look for care. The Alzheimer’s Association offers an extensive section on finding and vetting home care services which is helpful whether your loved one is elderly or not. You can also ask for a recommendation from your health care provider.
Start your search by:
- Creating a list of care needs
- Deciding whether you would like to work with an agency or an individual – or research both
- Calling the provider to ensure they can meet your needs
- Interviewing the provider in your home, if possible. It can be helpful to have friend or family at this meeting to compare impressions
- Checking the references of the agency and/or the individuals who will be helping in your home
- Sharing information with others. When you find a service or company that you like, let others know in person or on Connections, the ABTA’s online brain tumor support community
For an agency, ask:
- 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 caregivers who join your agency as employees?
- Are background checks completed on caregivers before they are hired?
- Do any of your caregivers specialize in working with brain tumor patients?
Questions for individual caregivers can include:
- Do you have experience/are you trained in brain tumor care?
- Are you trained in first aid and CPR?
- What would you do in the case of a seizure? What about another emergency?
- What other training/experience/education do you have?
- Are you bonded? (This protects clients from potential losses caused by the employee)
- Can you provide references?
- Are you available at the times needed?
- Are you able to provide back-up care if you are sick or have an emergency?
- Can you manage the patient’s specific health and behavioral care needs?
When you find a provider, the more they know about the patient, the better care they can provide. This includes health information as well as personal history and preferences. Although personality and preferences may change during the course of the disease, this discussion will help the provider understand the patient as best he or she can.
You may want to consider palliative care when researching options for the brain tumor patient. While much of the treatment for the patient focuses on removing and reducing the brain tumor, palliative care is centered around improving the patient’s and his or her family’s quality of life during treatment.
Find more information and resources on palliative care in this section on palliative care for brain tumor patients.
Palliative care can help provide the patient with relief from symptoms and side effects as well as help the caregiver and family with disease information and physical and emotional support.
Palliative care can take place in or outside the home and usually involves a team of health care professionals ranging from oncologists and neurologists to psychiatrists, social workers and nutritionists.
Hospice care is a specialized approach to medical care, pain management and caregiver support for people facing a life-ending illness. The aim of hospice care is to reduce pain and provide dignity at the end of life. Hospice care is frequently misunderstood. It is not a way to speed up death nor is it a way to postpone it. The goal is to allow the patient’s condition to unfold as comfortably as possible without aggressive treatments that can make the patient very sick and unable to communicate with loved ones.
Hospice care is at least partially covered under most insurance plans if the patient is no longer receiving curative treatment and it has been determined by their doctor that they may have approximately 6 months or less to live. Often, the doctor will wait until death is very near before recommending hospice.
Learn more and find resources for hospice care for patients with brain tumors .
However, there may be a time when you feel stopping treatment and beginning hospice care may be in the best interest for the patient you are caring for. For example, you may decide to opt for hospice care if a new brain scan reveals that the patient’s brain tumor has become very aggressive or if a variety of new symptoms have cropped up all at once, such as hallucinations, speech problems, incontinence and excessive sleep. Talk to the patient’s doctor when you believe you are ready to consider this step.
Hospice care can take place in a hospice unit within a hospital, nursing home or extended care facility. More often though, hospice takes place in the home, where members of the hospice team make regular visits to assess the patient and provide additional care. These team members are available 24 hours a day, seven days a week.
Why financial help is important for brain tumor patients and their families
Even with insurance, a brain tumor diagnosis and treatment can add a significant financial burden to any family’s budget. In fact, a brain tumor is considered the most expensive of all cancers to treat.ii Since many treatments are extremely specialized, patients may have to travel for care. In addition to travel costs, there are costs for housing, childcare, as well as costs such as the loss of income from the person who is ill, or the person who takes on the role as primary caregiver.
For many patients, costs continue to grow as the disease progresses. Neurological and physical side effects of the brain tumor can lead to expenses such as additional services, specialists, medications and equipment.
Asking for help is difficult
Compounding the issue is the fact that talking about money is difficult. Many patients and caregivers are afraid that if they bring up financial issues while undergoing treatment it will impact the quality of care they get. They fear they could get a “cheaper” treatment, or not be treated at all.
Fortunately, this is not the case. Every health care team will treat the patient to the best of their ability despite the cost of care. In addition, there are many government and private sources available for financial help for those with brain tumors and their caregivers.
Finding the right financial assistance
- Talk to hospital social worker. The social worker assigned to the patient’s case is often highly familiar with both national and local resources you can tap for financial assistance as well as services, such as local transportation resources or discounted housing.
- Visit the ABTA financial help page. The ABTA continuously updates this page of resources, which covers everything from prescription and co-pay assistance, to more general financial help.
- Look into transportation and housing programs. Many organizations offer free or discounted housing and travel options for those who need to travel for treatment.
- Consider employee benefits. The Family Medical and Leave Act (FMLA) offers 12 work weeks of unpaid leave during any 12 month period. This applies to patients as well as caregivers who are immediate family members of the patient. You can legally keep your health insurance during this time. Your employer may also have other programs that can help make caring for your loved one easier.
- Maximize your health insurance. If it is not offered to you, ask your provider for a case manager for the patient. Many insurance companies now have this service for complex diagnoses, although some are more forthcoming about offering it than others. This will give you a single point of contact at the insurance company who will have extensive knowledge of your case and assist you in interpreting bills and making decisions that will be covered by your insurance. A financial counselor at the hospital can also help you work with your insurance company.
- Appeal insurance decisions. Although this can be time consuming, denials of payment by insurance companies or by entities such as Medicare or Medicaid can be overturned. Learn more about your options and how to appeal insurance decisions for brain tumor patients.
iSherwood P, Given B, Dorrenbos A. Forgotten voices: lessons from bereaved caregivers of persons with a brain tumour. International Journal of Palliative Nursing. 2004;10:69.