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Easing the Burden: How Advance Directives Can Empower Family Caregivers. National Healthcare Decisions Day April 16th.

Apr 15, 2024



Feeling Your All is Still Not Enough? 



Mikki is looking after her 84-year-old mom, who struggles with hip pain from arthritis and a fall last year. She is also starting to show signs of early dementia. Her mom has been living alone ever since her husband—Mikki’s stepfather—passed away four years ago.

Every day, Mikki tries to balance caring for her mom with her own personal and professional life. It’s becoming really overwhelming.

She’s constantly plagued by doubts about whether she’s making the right choices or doing enough for her mom. These worries keep her up at night, leaving her exhausted and afraid that she might be missing something crucial in her caregiving.

Plus, she’s unsure how to even start discussing her mom’s healthcare wishes or who to turn to for advice. It’s a tough and isolating situation, but Mikki doesn’t have to go through it alone. 


Sound familiar? Do you feel burdened with more on your plate than you can handle and unsure of where to turn? 

Here are three ideas that can get you started. 



Idea #1 - You Are Not Alone: 3 Reasons for Caregiver Guilt 



Many family caregivers share these struggles, burdened by similar fears and uncertainties. Let's explore three common reasons you might feel overwhelmed and guilty: 

1. Uncertainty and Confusion About Medical Decisions

Without concrete guidance or medical knowledge, making decisions about a loved one’s health can feel like too much to deal with. The worry that you might not be choosing the best option can lead to deep-seated feelings of guilt.

2. Fear of Not Respecting Their Loved One's Wishes

When you're not sure what your loved one would want for life-saving treatments or other important healthcare choices, to think you might not be honoring their wishes can lead to some sleepless nights. This fear can really add to your guilt.

3. Emotional and Physical Burdens of Caregiving

Caregiving can take so much time and emotional energy that caregivers often end up ignoring their own health and wellbeing. This kind of sacrifice can make you feel guilty for not doing enough, even though you're running on empty yourself.



Idea #2 - An Advance Directive Will Help


An advance directive is a tool that can help you address much of the stress and uncertainty in your caregiving.

National Healthcare Decisions Day is on April 16th.

It's about helping family caregivers get ready for future healthcare choices. This means setting up an advance directive (like a living will), picking someone to make medical decisions for you if you can't, and talking about these plans with your family to make sure your wishes are followed.

Here’s how an advance directive addresses the challenges mentioned:

1. Uncertainty and Confusion About Medical Decisions

An advance directive spells out what kind of treatment and end-of-life care your loved one wants. Having this clear plan can really take the pressure off when you have to make those big decisions, especially during stressful times.

2. Fear of Not Respecting Their Loved One's Wishes

This legal document clearly lays out your loved one’s wishes for different situations. Knowing that you’re honoring their values and & carrying out their choices can help ease any guilt you might feel. The advance directive also gives you authority and protects your ability to carry out your loved one’s wishes when others try to force their wishes instead. 



Idea #3 - Share It



Creating an advance directive sets clear guidelines and expectations, which not only helps you make informed decisions but also helps manage many overwhelming aspects of caregiving. Sharing it gives you more clarity and understanding about the decisions themselves and lets you process how you and your loved one feel about what these decisions mean. Plus, it opens up opportunities for other family members and concerned persons to get on the same page and learn how they can support you. 

3. Emotional and Physical Burdens of Caregiving 

By clarifying roles and expectations, an advance directive can help streamline care processes and decisions. This potentially decreases the all-consuming nature of caregiving, allowing you to manage your time better and take care of your own physical and emotional health. 

Setting up an advance directive helps clarify roles and expectations - clear up who does what and what to expect. This makes it easier for you to handle care decisions. Caregiving becomes less overwhelming, and it frees up some of your time to look after your health and emotional needs.



A Structured Plan for Peace of Mind


During lunch one day, Mikki learned her coworker, Gladys, had taken care of her father until he died two years before. She was familiar with Mikki’s struggles and feelings, for she had experienced them herself.

Gladys recommended several helpful resources that a friend of hers had recommended to her. These were “The Conversation Project” on starting family end-of-life conversations, AARP Family Caregiver Guides, and the book “The 36-Hour Day”. These, Gladys explained, became her lifeline.

"The Conversation Project" helped Mikki understand that talking with her mother and other family members about what was important not only in terms of medical treatment and procedures, but, more importantly, what makes her feel truly cared for. This reduced Mikki’s stress, helped her feel more in control and confident.

She now had clarity about the kind of treatment and end-of-life care her mother preferred. This helped her feel less fearful about making mistakes, and more confident in knowing she was honoring her mother’s values and carrying out her choices.

The 36-Hour Day” helped Mikki to understand the symptoms of dementia, what to expect and how to prepare. Likewise, the AARP Family Caregiver Guides helped her grasp the range and complexity of the daily challenges she faces, and how to access the knowledge and skills to address them.

Sharing the advance directives increased her clarity about care decisions and helped other family members learn how they could support her. This gave Mikki more room to manage her time and take care of her own health and emotional needs. 

An advance directive lays out a clear plan that takes some of the decision-making pressure off caregivers, makes sure the patient's wishes are met, and helps handle emotions better. This important tool can change your caregiving experience from feeling uncertain and guilty to being more confident and fulfilled. 



Resources to bring you up to speed 


Advance care planning conversations and documenting wishes


 Resources for Creating Your Loved One’s Advance Directive

You can obtain advance directives forms from your doctor or medical center. 

The Conversation Project:  "Our free Conversation Guides can help you have conversations with the important people in your life about your – or their – wishes for care through the end of life. " Starter Guide Free

Five Wishes:  "The nation’s only national advance care planning program. Providing peace-of-mind for more than 25 years." $5.00

The African-American Spiritual and Ethical Guide to End-of-Life Care – What Y'all Gon Do With Me?: “A culturally sensitive resource for African Americans to use as a way to talk about advance care planning options and end-of-life issues with their loved ones.” $9.95

NOTE: Advance care planning documents - power of attorney and living will - requirements and provisions vary by state, so be sure to speak with an informed professional in your area when choosing your form. 




AARP Family Caregiver Guides

The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss 


Take Action

Are you ready to take control and ease your caregiving burden? Visit Caregiver Quiz to take our caregiver quiz and discover more empowering tools and resources that can guide you through your caregiving journey. Don’t wait; start transforming your caregiving today!