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Editor’s note: This post was originally published in March 2016. It has been updated and republished in August 2019.
Stress, depression, and management of side effects during cancer treatment are the main reasons that many cancer patients opt for home care service when recovering at home.
They prefer the safety of their own homes where they can enjoy the comfort of familiar surroundings as well as the support of family and friends. When a patient chooses to recover at home, the team that cares for them consists of case managers, nurses, physical therapists, doctors, and the patient’s family.
Although home care may be emotionally worthwhile for patients, it can be draining – both physically and mentally – on family and friends.
The strain of caring for a chronically ill patient has been shown to result in major depression, severe anxiety, and even post-traumatic stress disorder (PTSD). Some patients will recover during the course of home care, while others may continue to decline. Family members must cope with many drastic changes related to the disease. However, bonds with the patient can also be strengthened.
Home care staff will utilize on-site medical equipment, assist during visits from other medical personnel – such as physical therapists, prepare patient meals, oversee personal hygiene, and administer prescribed medication.
Types of Home Care Service
1. Acute Home Care: The goal of this service is to teach the patient and family about essential care until the patient is able to manage their recovery independently.
2. Long-Term Home Health Agency: This type of agency monitors the patient for a fixed number of hours per week. They assist with any changes or side effects of cancer treatments as well as other health issues.
Insurance and Financial Concerns to Consider
Even if you possess health insurance, home care can quickly become a financial burden.
There may be agencies that can assist with financial relief from a private or public source. The government-sponsored health programs such as Medicaid, Older American Act, and Medicare may provide financial support to cover home care service if the cancer patient is qualified.
Financial stress is one of the top causes of family strife when caring for a loved one. Unfortunately, insurance and government programs may not cover all expenses. One way you can prepare for the possibility of home care (or any major medical expense) is by saving. You can do this on your own, or sometimes through your employer. Many employers will match your savings up to a certain amount.
Medicare is under the Centers for Medicare & Medicaid Services (CMS) and provides support for the disabled and elderly. If the cancer patient is qualified, Medicare may cover or reimburse some or all of the expenses related to home care service. Medicaid also supports cancer patients but coverage of the everyday expenditures differs from state to state. Consult your insurance provider to determine if they carry partial or full coverage for home care.
Since there are many home healthcare agencies, you need to gather as much information as possible to find the right provider for you.
A private caregiver is another option for the patient who wishes to recover at home. If it is a person you know and trust, you should still put a contract in place to protect all parties.
Hiring an individual you do not know and who is not recommended by a doctor or healthcare agency should be approached with caution. Applicable screening – including a criminal background check – should be done. You may have to purchase additional insurance and pay their employment taxes.
When it comes to private care, you are literally putting your loved one’s life into someone else’s hands. It can be appealing to hire a neighbor or student when the price tag is so much lower. Unfortunately, this is often a mistake. While many of the tasks required are simple, even those with good intentions can quickly get in over their heads. Here are a few questions you should ask:
- Is this person trained in CPR? First Aid?
- Is this person physically capable of assisting your loved one in the event of a fall or other event?
- Is this person qualified to administer medication?
- Is this person trained to deal with the patient’s specific ailment? (dementia patients require different care than those recovering from surgery)
- Does this person have a support system in the event of an emergency?
In addition to technical requirements, it’s important that you find someone who truly cares for the patient. If your loved one is uncomfortable with the caregiver, it may be prudent to find a new one, even if the caregiver is friendly and qualified. Some patients, however, are resistant to care. Mid- to late-stage dementia patients may believe that the caregiver is causing trouble even when they aren’t. In these cases, you may need to make the executive decision that’s in the patient’s best interest.
It’s also important to avoid fatigue. No single caregiver should be on their own full-time. If the caregiver does not take care of their own needs, they’ll be unable to properly care for the patient. Make sure that anyone you bring on has adequate time off. Often, patients will receive care from a team of caregivers. This ensures that no one gets burned out. It also ensures that you have alternate options in case one caregiver is unable to fulfill their commitment.
Cancer patients need all the support possible to endure cancer treatments, remain positive about their recovery, and beat the disease. For many, being at home among family could greatly affect the welfare – and eventual outcome – of their specific case.
Patients and family considering home care must ask questions for a full understanding of what this option entails. The patient’s healthcare provider should be able to provide information regarding what is best for the well-being of the patient as well as a list of reputable home care organizations. Details of the patient’s specific case may make this option impossible.
The Family Dynamic During Home Care
Illness or injury requiring home care can create a huge burden on the whole family. In addition to stress and fatigue, members of your family may develop resentment for one another. This can arise because family members disagree on care decisions, or because some members feel unsupported by others. The only way to truly avoid this scenario is to clearly set roles and expectations.
These are quite different. Responsibilities are the jobs that each person is assigned. Role has to do with how you are seen and what is expected of you. Taking on new responsibilities may mean that someone new is responsible for balancing the checkbook and making meals, while roles can require a more difficult transition.
When a loved one is sick or injured, make sure you know who is in charge of making decisions. Assigning Power of Attorney is a step in the right direction. This doesn’t mean that you can’t discuss options as a family, but it is good to know who has the final say. Additionally, make you commitment to responsibilities clear. If one or two family members carry the brunt of the responsibility, they can quickly become angry with those who have been less involved.
It is unlikely that each family member will agree on the division of responsibility. Communicating what you are willing and able to do (and sticking to it) is extremely important. But the work of the family goes beyond arranging care and managing the household. The emotional toll – on both the patients and the family – can be enormous. Someone who’s spouse requires care may feel that they have no one to talk to. The primary caregiver may feel alone and overwhelmed. Social visits, calls to check in, or offering to “take the reigns” for awhile can be immensely helpful.
No matter what the expected duration, it’s important that home care is a unified effort by everyone involved. Reach out to professionals to find the best quality, affordable care, and don’t settle for someone who is unqualified. Communicate with your family about roles and responsibility so that you can have clear expectations and minimize the chances of resentment.
Finally, communicate with the person who will be receiving care. Depending on their condition, they may or may not be fit to make decisions or arrangements for themselves. This doesn’t mean that their feelings and wishes should not be considered. The most important thing you can provide for any patient is love and support, so make sure they feel those things to make the transition as smooth as possible.
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Stress, depression, and management of side effects during cancer treatment are the main reasons that many cancer patients opt for at home care.
The strain of caring for a chronically ill patient has been shown to result in major depression, severe anxiety, and even post-traumatic stress disorder (PTSD).
Types of Home Care Service:
- Acute Home Care
- Long-Term Home Health Agency
- A private caregiver
It’s also important to avoid fatigue. No single caregiver should be on their own full-time.
Remember to communicate with the person who will be receiving care and respect their feelings and wishes.
Silvia Logan says
When my mother was dying from cancer 10 years ago, my mother did not want any doctors nor nurses coming to the house and taking care of her. I was the one doing all the chores and cooking and it was putting a lot of emotional strain on me because my father would not help. My mother was too sick to do any of the work.