Difficult Conversations: Legal Affairs
Among the many difficult aspects of being a family caregiver for a loved one with Alzheimer’s disease is observing the decline in their ability to care for themselves. The unfortunate end-result of this decline comes when they are no longer capable of independently making decisions about their care or personal possessions. This incompetence requires someone else to be assigned to advocate, speak, and make decisions on their behalf.
As difficult as this topic is, it is often one of the easier topics to discuss. Many loved ones are upset and saddened by the thought of becoming a burden to their family. By creating an “estate plan” that consists of a Last Will and Testament and Advance Directives they can significantly relieve the burden. Typically, the Last Will and Testament are well known to people and discussing them doesn’t lead to significant distress. Tackling that conversation first is a good idea, before moving to the more delicate issue of Advance Directives.
If possible, you want to help your loved one understand the need for and benefit of having someone they appoint to represent their interests and protect their rights. They get to choose and name that person in their Advance Directive. It is best to ask them to name two people — one who is the primary representative, and one who is a back up. It is NOT advised to have two people in the role at the same time.
Strategies to Start the Conversation
“What if” questions and the resulting conversation that follows are often a good strategy to use to open discussion about challenging topics. “Dad, if you were sick and couldn’t speak for yourself, the doctors would need to know who they should talk to about your care. With mom gone, who would you like that person to be?
The “Me too” strategy suggests that you encourage your parents to join in as you complete an Advance Directive. The 5 Wishes document has a clear set of key points to use in a conversation about this topic.
Talking about “your friend” whose father was healthy and then had an unexpected illness and no one knew how to pay the bills. This is like the “What if” questions, but sometimes it is more successful through this type of story, which is sometimes known as “lying with love.” Some family caregivers are not comfortable with this, but in my experience, it is often the more compassionate approach to protecting your Loved One’s interests.
Tips for a Successful Conversation
Plan Ahead
What is your Goal? What do you need to get out of the conversation?
Choose the best time of day and best location.
Do you need anyone else in the conversation?
Assume the Best
Assume everyone involved is doing their best and has no ill will
Keep it positive and assume you will get to a positive outcome, at some point. (It may not be at the first conversation!)
Plan (and Practice) your Opening Comments
Sometimes getting started is the hardest part! Write out your thoughts and craft the most succinct version you can. Keep in mind your loved one’s abilities. You may need to adjust to that as well. Consider written materials if appropriate.
Plan for Bumps in the Road
You likely know some of the rebuttals or push-back you might receive. Plan your reply.
If they throw something unexpected in, that’s ok! Now you know. Use that information to help you address their concerns.
Plan for the Next Conversation
Even if you didn’t reach your goal with the first try, if you’ve kept a positive and respectful tone, you will probably get another chance.
Keep track of the concerns raised and seek out advice to work around it
Additional Information for Family Caregivers about the Guardianship Process
(In many cases this information does not need to be discussed in detail with a loved one unless you feel they can understand it fully and will not be emotionally burdened by it.)
If for any reason the individuals identified by an individual cannot or will not fulfill the role of healthcare surrogate/power of attorney for healthcare, a court will be petitioned for a Guardian. The Guardianship process exists to protect and exercise the legal rights of individuals whose cognitive and functional limitations prevent them from making their own decisions AND who did not make an advance directive determination, or their chosen representative cannot fill the role.
Who can be a Guardian?
In some cases, a family caregiver or other family member will be named the Guardian.
Professional Guardianship: A list of registered professional guardians is available on the Department of Elder Affairs Statewide Guardianship Office webpage: elderaffairs.state.fl.us These Guardians are typically paid from the resources of the loved one.
Public Guardian: A public guardian is appointed when a person who is incapacitated has limited financial means and no willing family member or friend to serve as a Guardian.
Veterans’ Guardianship: Is designed to protect veterans and other persons who are entitled to benefits, compensation, and other monies, from the United States Department of Veteran Affairs, as a result of military service in the Armed Forces of the United States.
Voluntary Guardianship: This form of guardianship can only happen early in the course of Alzheimer’s disease when the individual has full decision-making capacity. This type of guardianship is created without an adjudication of incapacity. A certificate by a licensed physician is required asserting that the petitioner has been examined and that he or she understands the nature of guardianship. The petitioner for the voluntary guardianship designates the guardian at the time the petition is filed. This is often used by individuals in early-stage Alzheimer’s disease who know they do not or anticipate they will not have family that can fill the role when needed.
