It is hard to face our mortality, to think about the time when we will no longer be here to experience life, spend time with family, love and be loved, but the truth is, there comes a point when our time on this earth will end. Whether that time is at the end of a long and fulfilled life or shortened by a terminal illness, people have a difficult time talking about death and end-of-life issues. One recent study showed that though 90% of individuals believe that talking to loved ones about end-of-life wishes is important, only 27% have done so¹.
For parents and caretakers of a person with a disability, facing end-of-life can be even more daunting. Not only does the caretaker have to face their own mortality, but they also worry about what will happen to their loved one once they can no longer be the caretaker. Thoughts flood their mind of who will take my place as the caretaker. Will the new caretaker know what to do and what is important to and for my loved one? Will they ensure my loved one has the opportunity to live their “best life”? For many parents, these concerns keep them awake at night, overwhelmed by wondering what to do. Planning for this life stage can bring peace during this difficult time.
Life Care Planning can help caretakers prepare for their future needs and the needs of their loved one with a disability. Life Care Planning is a process that sets up a plan to address the legal, financial, and personal care needs of a senior or person with a disability. Life Care Planning can help the caretaker determine end-of-life choices for healthcare, housing, support services, financial planning, and decision-making supports for their end-of-life. It enables the caretaker to set up a transition and long-term plan for the person with a disability when the caretaker is no longer able continue to serve as the caretaker. A Life Care Plan can give the caretaker and the family peace of mind knowing there is a plan in place to take care of their loved ones when that time comes.
When developing a Life Care Plan there are many things to consider and include in the plan for both the caretaker and the person with a disability. It is helpful to begin to think about and list the needs of each person. Getting help from an Elder Care Law attorney, Special Needs Law attorney, or someone who specializes in end-of-life planning can help with this process. Elder Care Law Attorneys specialize in understanding the legal, financial, and social service needs for end-of-life planning. Many Elder Care Law offices have benefits and care coordinators to help the family identify the needs and appropriate support services. Since each person’s needs are unique, each plan should be customized to the specific care needs of the caretaker and the person with a disability. Some of the needs to consider may include:
- Obtaining the appropriate legal documents, such as a: Will, Durable Power of Attorney, Health Care Directives, Conservatorship, Special Needs Trust, ABLE savings account, etc.
- Identifying the key supporters that will help carry out the wishes and duties listed in the plan.
- Listing contact information of family and friends
- Identifying the activities of daily Living (ADLs)
- Applying for and managing government services such as Medicaid, Medicare, Long Term Support (waiver) Services, Healthcare services
- Listing contact information for service providers, such as physicians, therapist, support providers, clergy, etc.
- Housing needs: residential, assisted living, nursing home care.
- Transportation: Can the senior or person with a disability drive? What mode of transportation do they use?
- Community engagement and social life
- Emergency and Safety planning
- End of life: Will, funeral, final moments wish, and more.
Once all the legal documents are obtained and the care plan is completed, it is important to store the care plan and supporting documents in a safe and accessible location. The key decision-making supporters will need to know how and where to access the plan and documents.
Creating a notebook to store the care plan, legal documents, and other valuable information can be helpful to ensure the future caretaker has all the necessary information to carry out the plan and wishes of the caretaker and person with a disability.
To learn more about end-of-life planning, you can contact the TN Center for Decision-Making Support to speak to one of our staff at ds@thearctn.org or (615) 248-5878, ext. 322.
¹Sorrell, Jeanne Ph.D., RN, FAAN, End-of-Life Conversations as a Legacy, Journal of Psychosocial Nursing and Mental Health Services, 2018:56 (1) 32-35, Published Online: January 22, 2021 End-of-Life Conversations as a Legacy | Journal of Psychosocial Nursing and Mental Health Services (healio.com)
Additional resources
TN Center for Decision-Making Support website: https://www.tndecisionmaking.org/
Arc US Center for Future Planning: https://futureplanning.thearc.org/
TN Commission on Aging: https://www.tn.gov/aging.html
McGinnis, Barbara & Adler, Bryan. A Life Care Plan: Helping You Navigate The Aging Journey, Charleston, Advantage Media Group, 2022
Best, Kimberly. How to Live Forever: A Guide to Writing the Final Chapter of Your Life Story, Bloomington, WestBrow Press 2019