Caregiver Speaker, Elaine K Sanchez, incorporates real-life caregiving stories with practical, applicable strategies for managing the emotional stress of caregiving. In the following article, she describes how to start difficult conversations about mortality and end-of-life care. 

How to Start Difficult Conversations and Plan for Incapacity and Death 

The only thing worse than talking about incapacity and death with a loved one is what happens to a family when people don’t talk about it or make plans to prepare.

Suppose you think it’s possible that, at some point, you will need to take over the management of someone else’s health care and finances. In that case, you will need to push past your discomfort and start the conversation, so you will know what they want if and when you have to make decisions on their behalf.

Tips for Approaching the Topic:

Understand that your care receiver may have two conflicting needs: 

• The need for independence 
• The need for assistance

They may not want to admit that they need assistance, and no one likes to be told what to do, so when you start the conversation, be aware that you may already have two strikes against you. 

If they are capable of making their own decisions, your primary goal should be to find out what their wishes are regarding end-of-life care, including life support and tube feeding, and how they want their money and property distributed after their death.  

If they cannot make good decisions, your primary goal should be to keep them safe and prevent them from hurting themselves or others.

Three Steps to Starting a Difficult Conversation:  

1. State the Issue: “I am concerned that there may come a time when you will need help managing your affairs. It would make me feel a lot more comfortable if I knew what you wanted us to do if you got sick or had an accident and suddenly could no longer make decisions about your healthcare or finances. We kids would like to do the right thing, but we might have very different ideas. If you tell us what you want, we will follow your directions. If you don’t tell us what you want, we could spend a lot of time and energy arguing about what each of us thinks is the right thing to do.
2. Ask for permission: Would you be willing to have a discussion and let us know what you would like for us to do?” 
3. Ask open-ended questions: (These are questions that cannot be answered with a “yes” or “no.”)

Example: 

• • How do you feel about__________? 
  • Who could help us with ____________? 
  • What would you like to do about_________?

The following section may help you understand the documents you must have in place if it’s important to you to follow your care receiver’s wishes and keep peace within the family. 

Q: What are the “Must Have” end-of-life planning documents, and why do I need them? 

A: At the very least, every person needs a Will or a Trust, a Durable Power of Attorney, and an Advance Directive. These documents allow you to: 

• Control what happens to your money, business interests, and possessions upon incapacity and death.
• Make decisions about your health care, including life support and tube feeding.

Q: What if I don’t have these documents and become incapacitated? 

A: If you become incapacitated and cannot manage your health care or financial affairs, a judge will appoint a representative to visit you to determine your physical and mental state. 

Suppose that individual decides that you cannot care for themselves. In that case, the court will appoint a Guardian to manage your personal affairs and a Conservator to manage your financial affairs.  This can be expensive, cumbersome, and embarrassing for the incapacitated person; but most importantly, when this happens, you cede all control to the court.  

Q: What happens if I die without a Will or a Trust?

A: If you don’t have a will or a trust, your estate will go into Probate.  According to your state’s law, a judge will determine what happens to your property. Generally, it will go to your spouse and children.  If you have no living relatives to inherit your property, it will go to the state. The court will also determine who gets custody if you have minor children. 

Q: What is the difference between a Will and a Trust?

A: A trust is similar to a will in that it allows you to determine what happens to your property upon your death. The big difference is that property left in a trust doesn’t have to go through probate court, which is generally a lengthy and expensive process. With a trust, you assign a trustee to pay your debts and distribute your property upon death.  A well-designed trust can help you avoid estate taxes and legal fees. A trust can be settled in weeks. Going through probate court can take months and cost thousands of dollars. 

Q: What is a Durable Power of Attorney?  (This title can vary by state.)  

A: A Durable Power of Attorney is a legal document that grants specific powers to another person to make financial decisions on your behalf. It takes effect immediately upon signing and terminates upon your death. You can grant general authority, giving that person the right to spend your money just as you would. Your Durable Power of Attorney can pay your bills, buy and sell real estate, make gifts, access your safety deposit box, etc. Or you can limit the scope of their authority. It is up to you to determine how much control you want that person to have. 

Q: Who can serve as my Durable Power of Attorney?

A: That’s up to you. You can choose a relative, a close friend, or a professional, such as a CPA. Whoever you choose, do it carefully and make sure they are trustworthy because you are giving that person the “keys to your kingdom.”  Be sure that this individual has good judgment when it comes to money, has no financial difficulties of their own, and will put your needs and best interests above all else.

Q: What is an Advance Directive, and how does it work?

A: It is a state-specific legal document that allows you to give instructions about how you want your health care managed (if you cannot speak for yourself) and what your wishes are regarding tube feeding and life support.  

An Advance Directive contains two parts:

1. The first part appoints a healthcare representative (healthcare power of attorney) to make healthcare decisions on your behalf if you cannot do so.  This person must follow your directions. If you do not state your desires, your healthcare representative must try to act in your best interest.
2. The second part specifies personal health care instructions and end-of-life decisions.  

Q: Does an Advance Directive guarantee I won’t be kept alive if there is no hope for my improvement or recovery? 

A: Only if you expressly state your wishes in the document. You must determine if you want to be kept alive through tube feeding and other life support measures. 

You can choose to let your physician decide. You can give the authority to your health care representative (usually a relative or very close friend) and let them make the decision. If you are sure you do not want your life prolonged if you are suffering extreme pain, have no chance of recovery, or are in a permanent state of unconsciousness, you must specify your explicit wishes in the document. 

When your instructions are recorded in your Advance Directive, your physician and your health care representative(s) are obligated to obey your wishes. 

Q: Do I have to hire an attorney to complete these documents? 

A: No. It is possible to download these documents from the Internet and complete them yourself. (It is also possible that given the keys to your car, an owner’s manual, and a driver’s guide from the DMV, a teenager could figure out how to safely drive your vehicle. However, considering all potential areas for mistakes and misunderstandings, it’s probably not a great idea.)

Consider the emotional stress your family would experience if they had to make the decision about unplugging your life support. Imagine the potential hurt feelings and disagreements that could arise if you don’t leave clear instructions about how you want your money and personal possessions distributed after your death.    

☛Hint:  A very wise man had a sign over his desk that read: 

“Half of being smart knows what you’re dumb at.” 

Do what you do well, and hire professionals to protect you from making well-intentioned decisions that might have disastrous results. The money you invest with an attorney to create estate planning and end-of-life documents is minuscule compared with the emotional cost families pay when they have to appeal to the courts to get judgments on issues such as life support and distribution of money and possessions. 

You would be amazed at the innovative ideas and solutions that come from seeking advice from a good attorney, a CPA, a professional financial planner, and a trustworthy insurance agent.  

Facing our mortality can be difficult and depressing. But the truth is, none of us will get out of this life alive. Accepting that fact, discussing it with our loved ones, and taking the necessary steps to prepare for incapacity and death is one of the most generous gifts we will ever give to the people we love. 

***

People of all ages and stages of life become caregivers. Most of them are not prepared to manage the emotional stress of caring for individuals who are aging, disabled, or living with Alzheimer’s, Parkinson’s, Huntington’s, and other progressive and degenerative diseases. 

When caregivers have access to the CaregiverHelp Support Group Program, they will recognize that they are not alone, and they will develop strategies for caring for themselves while caring for others. 

The CaregiverHelp Support Group Program can be offered at live, in-person events. It can also be led on Zoom, as a hybrid model, or as a self-paced program. 

Organizations that provide employee support through their Caregiver ERG programs love being able to offer CaregiverHelp Support Group as a self-paced program. 

Also, as baby boomers age, most HR managers are becoming aware that many of their employees are caring for spouses and aging parents. These employees don’t know what to do or where to turn when they are faced with taking over the healthcare and finances of loved ones who can no longer care for themselves. When offered through an Employee Assistance Program, such as a Caregiver EAP, companies may see that their caregiving employees are experiencing reduced stress, which can lead to fewer absences and decreased turnover.  

CaregiverHelp Support Group Program will never make caregiving easy. However, it does provide people with the tools and support they need to make sound decisions, manage their stress, and care for themselves as they try to balance family responsibilities, work, and caregiving.