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Legal To Do List for Caregivers

Updated: Jan 17, 2023

More than 1.6 million Pennsylvanians care for older parents, spouses or other loved ones, helping them to live independently in their own homes. These family caregivers have a huge responsibility. Caregivers who go into a caregiving arrangement prepared for the legal issues they’ll face are less likely to experience significant stress and other financial repercussions. Below is our “to-do” list of legal issues and tasks for family caregivers to address before or early on after accepting caregiving duties.

Taking Time Off of Work

Being a caregiver is a demanding job, and often requires workers to take time off from their own jobs to provide care. Fortunately, there are a number of laws that provide protection for caregivers. The Family and Medical Leave Act, for example, provides up to 12 weeks of unpaid leave for workers who need to care for a family member with a serious health condition.

The effects of the FMLA on employees’ financial stability can be detrimental. While your employer may be required to give you time off work, you are not entitled to get your salary during the time off. So make sure that it’s worth any potential loss by carefully examining whether taking advantage of the FMLA is really necessary before acting.

Other laws, such as the Americans with Disabilities Act and the Older Americans Act, provide protections for caregivers who have disabilities or who are caring for elderly family members. These laws ensure that caregivers have the time they need to do their job without fear of losing their own job.

Legal Documents

Clearly written legal documents that outline your loved one's wishes and decisions are essential. These documents can authorize someone, including the caregiver, to make health care and financial decisions for your loved one, including plans for long-term care. If the person being cared for has the legal capacity — the level of mental functioning necessary to sign official documents — they should actively participate in legal planning.

To give your loved one the best care possible, obtain legal advice and services from an attorney. If the person you're caring for is age 65 or older, consider hiring an attorney who practices elder law, a specialized area of law focusing on issues that typically affect older adults. As you plan for the future, ask the attorney about the following documents:

Power Of Attorney

This document gives a person (known as the principal) an opportunity to authorize an agent (usually a trusted family member or friend) to make legal decisions when the principal is no longer competent. There is no standard power of attorney (avoid the DIY power of attorney); thus, each one must be drafted for an individual's situation. It is important for the caregiver to be very familiar with the terms of the power of attorney because it spells out what authority the caregiver does and does not have. The agent should make multiple copies of the document and give one to each organization or company with which the principal does business.

Durable Power Of Attorney For Healthcare

This document appoints an agent to make all decisions regarding health care. These decisions include those regarding health care providers, medical treatment, and—in the later stages of the disease—end-of-life care. A durable power of attorney for health care allows the agent to authorize or refuse any medical treatment for the principal. This power only goes into effect once the principal is unable to make decisions for himself or herself and is activated by the principal's attending doctor.

Living Will

A living will allows a person to state, in advance, what kind of medical care they desire to receive and what life-support procedures he or she would like to withhold. This document is used if a person becomes terminally ill and unable to make their wishes known. A terminal illness is defined as one from which a person's doctor believes there is no chance of recovery. A living also can be used if a person becomes permanently unconscious. To be considered permanently unconscious, a patient must be viewed as having no reasonable possibility of regaining consciousness or decision-making ability. Two doctors must make this determination. Laws on living wills vary from state to state.

Living (or Revocable) T rust

This document enables a person (called a grantor or settlor) to create a trust and appoint a trustee to carefully invest and manage trust assets once the grantor is no longer able to manage finances. A person can appoint another individual or a financial institution to be the trustee. Once the grantor passes away, the provisions of the trust provide for the management of the grantor’s estate, avoiding the costs and delays that are often associated with probate.


A will is a document created by an individual that names an executor (the person who will manage the estate) and beneficiaries (those who will receive the estate at the time of the person's death).

Include Family in the Conversation Early

A stressful conversation for any family is what happens to the money when a parent becomes ill, and who will serve as the primary caregiver. One method for discussing difficult topics is holding a family meeting. The caregiving team meets in a comfortable place, seated around a table with room to spread out documents under discussion. (Using technology such as Zoom may help to include family members who live far away.) A well-organized meeting can provide the family members with shared support and a better understanding of the decisions to be made.

When planning the family meeting, its important to include all necessary members. One question to consider is whether the person receiving care will attend. If your loved one has a cognitive condition (Alzheimer's disease or another dementia, for instance), consider whether or not they have the capacity to understand the discussion and whether its likely to be upsetting. Are there “hot-button” issues not to be discussed in their presence? How critical is it for them to participate in decisions made on their behalf? Attending all or part of the meeting may allow the care receiver to build trust in the caregiving team. This can help later with their cooperation when tougher decisions must be made.

Before the meeting, it’s best to set times and dates convenient (as much as possible) for everyone’s schedule, then create your meeting agenda. Here’s a suggested list of topics to keep the discussion on track:

  • Definition of the caregiver's role, with tasks clearly delineated

  • Compensation for caregiving, including how it will be paid (weekly, monthly, lump sum?)

  • Financial changes to the family estate (present and future impact)

  • Who holds Power of Attorney?

  • Who will serve as a backup should the caregiver become sick or need respite?

  • Are there Medicaid “spend down” or “look back” period considerations?

  • Is there a Health Care Power of Attorney?

  • Who among the family is entitled to medical or financial information about the care receiver?

  • How does the care receiver perceive their quality of life and independence?(What are their wishes?)

  • What is the plan if it becomes time for placement in a residential facility?

If possible, record the meeting or have someone take notes. You might distribute meeting notes to other family members for future reference. Include decisions that were made during the meeting as you many need to refer to them later when questions arise. Consider building a “caregiving” binder that contains necessary documentation. One person should facilitate the meeting to keep the discussion moving or to set boundaries if the discussion gets out of hand. Some families choose to use an outside facilitator, a social worker, clergy member, geriatric care manager, or another person without a vested interest in the meetings outcomes. More than one meeting may be necessary.

Ensure That All Records List The Main Caregiver’s Name and Contact Information

At every doctor’s appointment with an elderly family member or friend, check that the record lists your name and phone number, and ask that you be contacted in any kind of emergency.

Consider Limiting Access to Financial Information, Especially For Memory Care Patients

There are some individuals that may try and take advantage of a person suffering from dementia or the person themselves can put their own funds at risk. Consider giving limited access to the person to pay small bills while holding back access to larger funds such as retirement funds, stocks, etc. In some cases, banks have their own documents that need to be signed for this kind of money management. Again, put this in place as soon as possible so that the documents can be signed before they are unable.

You Should Be Given Access to Medical Records and Information.

Misunderstanding of the medical privacy act known as HIPAA (Health Insurance Portability and Accountability Act) is common and creates barriers to family caregivers getting information they need to oversee a loved one’s care. In fact, medical institutions are obligated to hand over information when an older adult has granted a caregiver a durable power of attorney for health care decisions or a HIPAA authorization specifying that they receive access to medical materials.

Pennsylvania’s CARE Act (Caregiver Advise, Record, Enable Act) enables an individual who is an in-patient in a hospital to designate a “lay caregiver” to receive medical information about the patient. Learn more about the CARE Act.

Accusation of Abuse or Neglect

As a caregiver, you are tasked with the important responsibility of providing care and support for another person. Unfortunately, this role can also come with certain legal risks. One of the most serious is the risk of being accused of abuse or neglect. Depending on the laws of your state, you may be required to report any suspicion of abuse or neglect to the authorities. You may also be required to participate in an APS investigation if one is opened.

If you are found to have committed abuse or neglect, you could face criminal charges and lose your job. It is therefore essential that you familiarize yourself with the legalities surrounding this issue. By doing so, you can protect yourself and the welfare of those in your care.

Here are some steps to take if you find yourself in this situation:

  • Seek legal advice from an experienced attorney.

  • Cooperate with any investigation that may be conducted by the authorities.

  • Be prepared to provide evidence to support your innocence.

  • Avoid contact with the alleged victim, their family members, or any other witnesses.

Abuse and neglect allegations are serious matters that should not be taken lightly. If you are facing such allegations, it is important to take the accusation seriously and seek legal counsel immediately.

We Can Help

Caring for an older relative can be extremely taxing and necessitates a significant amount of time away from work. Luckily, there are several laws that would protect you from being fired by your employer. Legal issues for caregivers include ensuring that the care recipient is receiving the best possible care, maintaining accurate records of care, and protecting the caregiver’s own legal rights.

Yet, the Caregiver legal issues are complex, and they differ from state to state, at and county to county. So, to be completely educated about your rights and duties, make sure you speak with one of the experienced elder law attorneys at Fiffik Law Group.


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