Chapter 8 Personal-care Agreements and Nursing Home Contracts

• Library: Alzheimer's and the Practice of Law: Counseling Clients with Dementia and Their Families (ABA) (2013 Ed.)

CHAPTER 8 PERSONAL-CARE AGREEMENTS AND NURSING HOME CONTRACTS

"Colicky Dementia" by Shay Jacobson

"Dementia" is a term that brings to mind a pleasantly confused, grandmotherly figure—sweet, gentle, and very compliant. But what happens when an already misfiring mind responds chaotically to the world around it, veering drastically from the peaceful path?

Dementia presents itself differently in different people. Untreated mental illness, undetected substance abuse, and personality disorders can all result in dementia presenting itself in a frenzied manner.

There is a very common condition among healthy babies called colic. Wiki-pedia defines colic as "a condition in a healthy baby in which it shows periods of intense, unexplained fussing/crying lasting more than three hours a day, more than three days a week, for more than three weeks."¹ Let us consider a person suffering from dementia that manifests itself in a colic-like condition. For explanatory purposes, I have coined the phrase "Colicky Dementia."

Colicky Dementia is unpredictable, inconsolable, and results in disproportionate behavior reactions to the reality of the individual's environment, inner health, and caretaking. The individual exhibits a chronic state of anxiety, panic, and circular thinking that lasts for periods exceeding three hours a day, more than three days a week, for more than three weeks.

This condition ensnarls the individual in a continuous fight-or-flight response with their caregivers and environment. Individuals react with fear and panic when they feel unsafe, uneasy, or not in control. Since they cannot communicate normally with those who care for them, they react with escalating and circular panic. They resort to undesirable behaviors such as shouting, biting, crying, and hitting.

This is more than a nuisance to the caregiver, as it leads to serious caretaker stress. Caregivers dealing with individuals suffering from this condition are faced with an unrelenting assault upon their own mental health. The resulting impact on caregivers includes depression, exhaustion, anger, major illness, isolation, and chronic health problems.

Someone calls a lawyer and asks for a "simple contract" because an adult child is going to be compensated for providing in-home care for a frail parent. Most of the time, neither the caller nor the lawyer can imagine the powerful, invisible forces arrayed against this agreement—cultural and religious tradition, judicial bias, elder abuse statutes, and the state Medicaid department.

The lawyer's role in serving clients and their families is most often determined by the care needs of the family member affected by Alzheimer's disease (the "affected loved one"). One of the key challenges of serving as the lawyer is the difficulty in understanding who the client is and how best to serve that client. It is important for the lawyer to carefully define whether the client is the affected loved one or one of the healthier members of the family. Nonetheless, the lawyer will be faced with carefully representing the client within the context of a disease that is impacting an entire family unit.

Millions of people are currently providing in-home caregiving services for a loved one. Providing those services is done at great personal cost and sacrifice.

People on the Alzheimer's care journey often progress through a trajectory as follows (covered in more detail in chapter 1):

• memory loss ignored
• memory loss masked/denied
• unsafe alone
• aid needed, but fights back
• assisted living required
• nursing home required
• hospice care required/death

As the affected loved one's care needs increase, the lawyer needs to understand how best to draft personal-care agreements and how to review assisted-living facility and nursing home contracts (referred to hereinafter as "nursing home contracts"). This chapter will focus on revealing the invisible obstacles that confront lawyers and their clients when drafting a personal-care agreement among family members and the hidden traps within many standard nursing home contracts.

The first stage of this journey, "memory loss ignored," does not mean that loved ones are ignoring the senior's memory loss. The person affected, as well as the loved ones, may be dismissing the memory loss as part of the aging process. An individual in the early stages of Alzheimer's is often in good physical health, which makes it much easier to dismiss the occasional lapses in memory. The person feels good, looks good, and makes perfect sense most of the time.

Case Study

Affected Loved Ones Are Often on a Similar Journey

A woman received a phone call from her grandmother asking her how to make spaghetti. The grandmother had been making spaghetti for more than 50 years, but now her memory was failing her in simple daily tasks. The woman visited her grandmother and was shocked to see the messy condition of the home and her grandmother's personal appearance.

Even more surprising was her grandfather's state of confusion. Clearly, both of them were in need of assistance, but neither one was willing to ask for help.

When memory loss is first detected, one of the authors refers to this as "smoke in the kitchen." In many cases, there literally is smoke in the kitchen because one of the most common dangers of memory loss is that the senior forgets and leaves a burner on or does not turn off the oven, and eventually starts a fire in the kitchen.

Often seniors will either ignore their memory loss or will attempt to hide the behavior. In many cases, they are aware of their worsening condition but are afraid of being put in a nursing home.

Once the memory loss has been detected by family or friends, the next stage is coming to the decision that the senior is "unsafe alone" and needs aid. It is not unusual for the senior to resist and fight to avoid assisted-living situations. While men seem to be more likely to fight back since control can be a bigger issue for a man facing Alzheimer's, it is not out of the norm for women to plant their feet and say, "I am not leaving my home."

On the Alzheimer's journey, the goal for many seniors and their families is to keep the seniors in their home (or in the home of an adult child) for as long as possible. This will necessitate the need for in-home care.

There are several hiring options when it comes to in-home care. The important thing to remember is that anyone hired directly usually creates an employer-employee relationship. It is critically important to examine the relationship in light of both federal and state labor and tax laws. Most often, if an individual is being hired who will perform services and be under the direction and control of another, an employer-employee relationship is created. Many individuals ignore this concern at their peril because they prefer to either pay cash to the caregiver or report the compensation paid on a Form 1099. While it is the preference of private individuals to avoid and even evade tax rules, lawyers are obligated to inform families of the employer-employee obligations inherent in this type of arrangement.

There are many companies that specialize in in-home care, but even among such companies there are different protocols. Many companies are the employer of the caregivers that they provide. Lawyers should check to be sure that their caregivers are insured and bonded. The client pays the company and the company pays the caregiver. From a legal standpoint, this is the simplest arrangement, since the client does not have to do any bookkeeping, employment law, and/or tax reporting.

Some companies that may appear to be employers of caregivers are actually in the business of merely placing freelance caregivers with families. These companies are being compensated by a finder's fee and sometimes by taking an override from the caregivers' compensation. The contract provided by this type of quasi-employment agency and in-home health-care provider clearly stipulates that the company is not the employer of the caregiver. The lawyer will need to make the legal determination as to whether or not the client has become the employer.

The majority of clients and their families do not have formal employer-employee contracts with their caregivers. Instead, most families prefer to handle these arrangements "below the radar." This means that by the time the lawyer gets a call, there are substantial issues of unpaid employment-related taxes, workers' compensation, and grossly inadequate bookkeeping.

Whenever the client employs a family member, neighbor, friend, or freelance caregiver, there needs to be an employment contract in place. This contract will need to be reviewed so that the client and the client's family understand all the provisions. (Caregiver contracts are discussed briefly in chapter 5 in the context of Medicaid qualifications.)

Practice Pointer:

Read the in-home care contract carefully. When hiring in-home care, people need to understand the finer points of the contract. One family was surprised to discover that the in-home care provider whom they thought they were paying $18 an hour got paid time and a half on Saturday, double time on Sunday, and double time on holidays.

They were shocked when they got a bill of $72 an hour for eight hours of care on Sunday, the Fourth of July—four times the rate that they thought they had agreed upon!

Adult Children Providing Care

Situations in which adult children provide care for their elderly parents often start out as very casual arrangements. Many times, the first stage involves the adult children picking up some groceries for the parents while doing their own shopping or driving the parents to an appointment. Maybe they start giving their parents some money, or maybe they are coming over and cooking and cleaning and checking in on their elderly parents.

Then, all of a sudden, a parent is diagnosed with Alzheimer's and the adult child has to quit his or her job or cut back hours because taking care of the...