Welcome to today’s episode of Caregiver Secrets, where we share practical advice, research, emotional support and resources for caregivers of loved ones. Hi, my name is Reginald Reglus and I am glad you are here today. I am a fellow caregiver. I have been serving my mom for about 10 years after she was diagnosed with dementia. As usual let me remind you that I say that to impress upon you that I personally understand the challenges of caregiving.
But before we go any further, it is important to note that this is not medical, financial or health advice. Please seek out a proper professional for any matter you are dealing with. My goal is to inform you as best I can, but you and you alone are totally responsible for doing your own research and taking the appropriate action.
Today we’re tackling one of the most important—and sometimes overwhelming—topics that every caregiver will face at some point: how to advocate for yourself and your loved one when navigating the healthcare system and accessing social services.
Being a caregiver is hard enough without having to figure out the maze of healthcare, insurance, and social services that seem designed to confuse and frustrate. It’s so easy to feel powerless when you're trying to secure the best care for your loved one while also managing your own well-being. It can feel like the system is working against you and your loved one. But here’s the truth: you have more power than you think. And today, we’re going to discuss practical strategies to help you advocate for both your loved one and yourself, because you matter too.
Let’s start by talking about the importance of preparation. When you're advocating for someone else, knowledge is your best weapon. That means knowing the medical history of the person you're caring for, inside and out. It means keeping records of every diagnosis, treatment, medication, and procedure. I carry a notebook with me to doctors appointments of my mom’s eating habits, blood pressure readings, poop schedule, medicine regimen and more. I suggest you keep such a journal for your loved-one and for yourself. This information will help you make informed decisions and communicate effectively with doctors, nurses, and other healthcare professionals. I have also found that when medical professionals see you referring to notes, they take you more seriously, especially when you also write down what they say to you.
But it’s not just about knowing the details—it’s about asking the right questions. Don’t be afraid to ask for clarification or more information. For example, if a doctor suggests a new treatment or medication, ask about the benefits, potential side effects, and whether there are alternative options. Also, ask why they have come to that conclusion. This is important because many times they are making decisions based on what they think they heard you say. Sometimes, however, they have misheard or misunderstood what you said and they end up leading you down the wrong path. Also, if you’re unsure about a diagnosis, ask for a second opinion and even a third or fourth opinion. I often check with several different and unrelated sources to see if I get a similar answer. Remember, you’re not just a passive participant in your loved one’s care—you’re their voice and advocate.
Now, let's talk about navigating healthcare appointments. Many caregivers find these appointments stressful because of time constraints and the pressure to absorb a lot of information quickly. One great strategy that we already mentioned is to bring a notebook, or use your phone to take notes during appointments. This way, you can review the information later when you’re not feeling rushed. Better yet, if possible, bring a friend or family member with you. Having a second set of ears can be invaluable. They might catch something you missed or help ask follow-up questions.
Ok this is also very important. Please do not forget about self-advocacy. Yes, you’re advocating for your loved one, but as a caregiver, you also need to speak up for yourself. One of the most common issues caregivers face is burnout, and it’s often because they feel like they have to do everything themselves. But you don’t. Well, let’s face it, sometimes you do for a while, but you can’t do that for long. If you feel overwhelmed, don’t hesitate to ask the healthcare team about respite care options or social services that can help lighten the load. You are not failing by asking for help—you’re being smart and ensuring you can provide the best care possible.
This brings us to the often complicated world of social services. If you’re not sure where to start, contact your local Area Agency on Aging or similar organizations in your area. They can connect you with resources like meal programs, transportation assistance, and even financial aid, depending on your situation. Many caregivers are surprised to learn about the variety of services available. These agencies can also help with paperwork and legal matters related to caregiving, so you don’t have to navigate these challenges alone. I have personally had a hit and miss track record with social services. As of 2024, in some states, a lot of services require you to be eligible for Medicaid and my loved one is over the income threshold, so no go for me there. However, the key is to apply for everything and see what you get approved for. You need all the help you can get.
Let’s now briefly touch on insurance and medical bills. When dealing with insurance and medical bills, it’s crucial to be proactive. Insurance can feel like an endless pit of paperwork, but staying organized is key. Keep copies of everything—every bill, explanation of benefits, and payment receipt. If you receive a denial for a treatment or service that your loved one needs, don’t accept it at face value. Call the insurance company, ask why the claim was denied, and request an appeal. Persistence is often required, but in many cases, denials can be overturned if you have the right information and are willing to fight for it.
I want to emphasize the importance of knowing your loved one’s rights, especially when dealing with healthcare facilities. If your loved one is in a hospital or long-term care facility, they have the right to be involved in their care decisions. You, as their advocate, have the right to ask for care meetings, to participate in discussions about treatments, and to challenge decisions that don’t seem to be in their best interest. Don’t be afraid to push for what’s best, even if it means being persistent.
Lastly, let’s talk about building relationships with healthcare professionals. Healthcare providers are more likely to listen and respond to someone they know and respect. By being courteous, prepared, and respectful during your interactions, you build goodwill that can make future conversations easier. However, if you ever feel like your concerns are being dismissed, don’t hesitate to escalate the situation. I have had to do that many times and on at least 2 occasions it saved my mom’s life. I had to fight for her to live. Also, you can ask to speak with a patient advocate or ombudsman, especially if you’re in a hospital or facility setting. These individuals are there to ensure patients receive fair and appropriate care, and they can be your allies.
To wrap up, being an advocate isn’t easy. It takes energy, persistence, and sometimes a lot of patience. But remember, you are your loved one’s most powerful advocate, and you have every right to question, push for better care, and seek support when needed. Advocating for yourself is just as crucial—by doing so, you ensure that you can continue to provide the best care possible without burning out.
Remember, you don’t have to do this alone—there are resources, support networks, and strategies to help you along the way. Reach out and get help. Well that’s it for today’s episode of Caregiving secrets. This is Reginald Reglus and I trust you will join me and tell a friend about our podcast, Caregiving secrets. Spread the word!
Until next time, take care of your loved ones, but don’t forget to take care of yourself. Talk to you soon.
