January 10, 2024

Caregiving 101: How To Be Your Own Caregiver Advocate

Caregiver Experience Caregiving for All Ages

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In most caregiving journeys, there will come a time when caregivers must advocate for themselves or for the person for whom they care. “Moments of advocacy may look different in every caregiving journey,” said Phuong (Diane) Slawson, a Care Management Lead at Careforth. “Situations can range from advocating for better educational services for a child with special needs, changing medical protocol, making an insurance claim, acquiring Social Security benefits for your loved one, or advocating for increased accessibility for someone with disabilities.”

To improve the outcome of your caregiver advocacy, there are a few things you can do to benefit both you and your loved one:

• Accurately document information – Maintaining good records and keeping track of your emails, documents, medical records, and phone calls, for example, can ensure that nothing slips through the cracks and can help you better advocate for your loved one.
• Contact the right people – To best advocate for yourself or someone else, connections are everything. By having the right people working with you towards your goal, you can increase the impact of your efforts.
• Use your resources and support network – Engage your family, friends, and caregiving support team in your efforts, and let them help you. They will not only help your loved one but also provide you with emotional support.

While family and friends can be a great resource, it’s important to be able to independently advocate for yourself or your loved one, in case the need arises. To be a better caregiver advocate, here are a few expert tips from our Careforth Care Team.

7 Tips for Being a Caregiver Advocate 

1. Identify the Problem

Start by clearly stating what the problem is, what your goal is, and what outcome you are seeking. Take time to put it in writing. This can help focus your efforts. By setting clear and achievable goals, you can be more effective in what steps you take to get there. After all, you don’t want to fall short or face unnecessary challenges because your goals were unclear or impossible to achieve.

2. Gather Information

Once the problem, goal, and desired outcome are identified, start gathering all relevant information in a safe place. Use a notebook to record all relevant phone calls, contacts, and other important information, along with an envelope or folder to keep all correspondence and transactions regarding the issue. This will help you stay organized, avoiding hours spent sifting through outdated files or digging through your entire inbox trying to find the one thing you need. This will also come in handy if you must appear before a committee, lawyer, or a board.

3. Keep Detailed Phone Records

Dedicate a section of your notebook to a phone log. For each relevant call, make sure to write down the following details: 

1. The date and time.
2. Who was contacted and by whom.
3. A description of what was said, to the best of your ability.

Careforth Tip: Always ask questions if something is unclear and avoid making assumptions. 

4. All important steps that you, or a third party, will need to take. To verify this, it’s helpful to repeat back the steps, along with the expected time frame or deadlines to the caller. Here are a few examples of clarifying statements that can help document conversations accurately:

• “You will have someone come out to fix the problem no later than Friday of next week, correct?”
• “I need to fill out the form, have it notarized, mail it in, and then I can expect to hear from you in writing within 48 hours. Am I missing anything?”
• “Is that 10 business days or calendar days from today?”

Careforth Tip: Try to avoid texting information to parties involved in the situation, as autocorrect can often misconstrue information. Emails, letters, meetings, and phone calls are often better modes of communication.

4. Save Copies of Mailed Information

For all mail-requested items, make sure to keep duplicates of any documents, filled-out forms, etc., keeping them stored in a folder specific to the matter. Depending upon the importance and timeliness of the issue, mailing information with a returned receipt guarantee may be worth the extra postage cost. 

Make sure all forms are filled out completely – incomplete forms can delay the process. If in doubt while filling out forms, call the appropriate organization and ask clarifying questions. And remember to never send original documents like passports, birth certificates, or driver’s licenses.

5. Seek Help from Professional Resources

For assistance with civil matters, contact your local, state, or federal legislators. Representatives and Senators have regional offices and generally have staff that specialize in helping constituents cut through any “red tape” they may encounter. You can also gain information from the internet, talk to others with similar experiences, and take advantage of word-of-mouth recommendations for people who can help you.

If a law has been broken or if there are legal concerns, the use of legal counsel may be your best option. Many lawyers don’t charge for the first consultation, and there is also legal aid available for citizens in need. The District Attorney for your jurisdiction can also be a great resource, depending on your situation.

6. Bring Support to In-Person Meetings

If you are required to attend a meeting as part of the advocacy process, a second pair of eyes and ears can ease the stress and help you remember the details of the meeting. This person can help you by quietly taking notes and providing moral support. During the meeting, encourage them to ask questions if anything is unclear, making sure the notes are as accurate as possible.

After the meeting, review the notes and make sure everything makes sense to avoid questions later. Keep these notes in your notebook or folder, and be sure to include the date, time, participant names, and roles of those involved in the meeting.

7. Find Caregiving Support to Help You Through the Process

As a caregiver, advocating for yourself or your loved one can take a lot of time and energy. To ensure that you’re still able to provide the best care to your loved one, it’s important to not stretch yourself too thin or try to do everything on your own. At Careforth, we connect caregivers with the tools and support they need to be better advocates and caregivers. Our care managers are also there to provide expert guidance through difficult caregiving situations. 

Careforth Supports Caregivers

We strive to provide you with the resources and connections that help you feel supported at every turn. Visit the How We Help page on our site to learn more about how Careforth supports caregivers or contact us for more information.

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