According to AARP’s report Caregiving in the US 2020, there are an estimated 53 million adults in the US who are caregivers. Of those, 41.8 percent provide care for a person aged 50 or older. Twenty-four percent of caregivers are caring for more than one care recipient. Being a caregiver throws us into many situations we have not encountered before. It forces us to take on roles that push us outside of our comfort zone and require us to learn new skills. When you are a caregiver, whether you like it or not, you become responsible for the health and well-being of another. One who may need assistance, not just with day to day life things, but with advocating for themselves as well. One of the most significant roles a caregiver plays is that of an advocate for their loved one. I’ll hit the highlights for you here, but to get all the details listen to episode 29 or keep scrolling to the bottom of the page for a full transcript.
According to Miriam Webster, the word advocate, which can serve as a noun or a verb, is defined as one who pleads the cause of another or to plead in favor of.
To take that one step further then, advocacy is the act or process of supporting a cause or proposal. For the purposes of caregiving then, advocacy is the things that you do to ensure that your loved one receives the best of care and services from the entire care team that you have in place. You are their voice.
Foundation for Being a Good Advocate
Being an advocate is an important job and is best accomplished by having some basic foundational pieces in place.
- Establish a Care Team You Have Confidence In – this includes medical professionals, other service providers, family & friends, and anyone else who assists you in delivering care to your loved one.
- Get Organized –Having the right information and tools readily available is key. Create a medical binder, financial/legal binder, and helper contact list. You’ll also want to assess your own skillset and seek education and/or support for the skills you lack.
- Know what they want – Do your homework. If you want to be an effective advocate, you need to know what your loved one’s wishes and goals are.
- Take Care of the Legalities – It is important for you to have certain documents in place if you want to be given access to medical information and to have the ability to manage finances and conduct business on your loved one’s behalf. (Learn more about this in episode 10 – Estate Planning)
- Observe and Question – Observe everything and question when necessary! Observe your loved one for subtle changes in habits or behavior. Observe members of the care team and hold them accountable for their responsibilities and actions. Observe the total environment and speak up when something needs to change.
- Communicate – This is a cornerstone of being a good advocate. Good communication with your loved one and care team is a vital component of effective advocacy.
- Trust Yourself – You’ve done your homework, you’ve had the tough conversations. When it’s time to make a big decision trust your gut and have confidence that your knowledge, love, and care will be enough to guide you to the answers
- Practice Self-Care – A burnt-out, run-down, unwell caregiver can’t deliver good care and advocacy. Take care of yourself and recognize that doing so IS NOT a selfish act, but the best gift you can give to those you care for.
Links and Resources Mentioned
- AARP’s report Caregiving in the US 2020
- Sage Aging Elder Law Series – five episodes covering Elder Law topics
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Being a Great Advocate for Your Aging Loved One
Recorded Mon, 10/19/20
caregiver, loved, aging, advocate, care, binder, important, advocacy, medical providers, good, caregiving, medical, include, questions, place, team, episode, loved ones, create, sage
Liz Craven 00:00
Thank you for listening to the sage aging podcast. This episode is brought to you by Polk elder care guide, your guide to all things senior care and resources available in both English and Spanish. You can find the guide at Polkeldercare.com
Liz Craven 00:26
Welcome to the sage aging podcast. I’m your host Liz Craven. The mission of sage aging is to help you connect to information and resources that will empower you to master the aging and caregiving journey. Weekly, I’ll bring you great conversations with industry professionals and others to shed some light on topics of aging and to empower you to take charge of your journey. So grab a cup of coffee, or maybe a cool glass of lemonade, and sit back and relax as we chat. Are you ready? Hit subscribe now and let’s get started.
Liz Craven 01:04
Hello and welcome. This is Episode 29 of the sage aging podcast. According to AARP report, caregiving in the US 2020 There are an estimated 53 million adults in the US who are caregivers. Of those 41.8% provide care for a person aged 50 or older. 24% of caregivers are caring for more than one care recipient. Being a caregiver throws us into many situations we’ve not encountered before. It forces us to take on roles that push us outside our comfort zone and require us to learn new skills. When you’re a caregiver, whether you like it or not, you become responsible for the health and well being of another one who may need assistance not with just the day to day life things but with advocating for themselves as well. I think sometimes when we talk about a caregivers role, we tend to think just of the physical assistance that caregivers give, you know the the hands on things, the basic caregiving, but that’s just the tip of the iceberg. And as if that weren’t enough, caregiving requires much, much more than that.
Liz Craven 02:23
One of the most significant roles that a caregiver plays is that of an advocate for their loved one. This is the piece we’ll focus on today because truly, if you can be an effective advocate for your loved one, and for yourself as a caregiver, you will have a far less bumpy road. Well, you know me, I like to start from the beginning. So let’s first start by defining the word advocate. According to Merriam Webster, the word advocate which can serve as a noun and a verb is defined as one who pleads the cause of another or to plead in favor of to take that one step further, then, advocacy is The act or process of supporting a cause or proposal for the purposes of caregiving. advocacy is the things that you do to ensure that your loved one receives the best of care and services from the entire care team that you’ve put in place, you are their voice. Before we go further, let’s talk about the care team. This is the team of people that you create to assist you in providing the best care possible for your loved one. So who should be a part of the care team? Well, it can look different for each family. But basically, the care team is made up of all of the people who contribute to the safety and well being of a person with lots of moving parts. Your care team is something that will evolve and change over time as your loved ones needs change. And as a primary caregiver, you’re the leader of the team, and you’re responsible for creating a team that you have confidence in. So a little side note here, do yourself a favor and spend some time understanding this and putting your team together. I promise you it will make a difference and I promise you it will be worth the effort. The components of a care team are the caregiver, you medical providers and other professionals and family and friends. Also probably some extra volunteers and volunteer organizations, nonprofits could be thrown into that group as well. So let’s break this down. After Of course, the caregiver, that’s the most important component. The next component of the care team is medical providers and other professionals and this may include your loved ones, doctors Primary and specialists, pharmacists, a homecare agency, adult daycare, social worker, an elder law attorney, financial advisor, and insurance advisor. Because we all know that it’s really good to have some assistance when you’re choosing Medicare or Medicaid options and VA, lots of things to break down there. So an insurance advisor is important. an aging life care manager might be a part of your care team. Those are also known as geriatric care managers. community service providers, like Meals on Wheels are other organizations that may provide socialization meals, minor home repairs, transportation, you may or may not have all of these pieces in place. But that’s okay. Because like I said before, every care team is going to look a little bit different. The next component of your care team is your family, friends and volunteers. Now, this might include adult children and grandchildren, significant others neighbors, close friends, clergy, and church members and other volunteers. And by the way, there are a lot of community resources available to help you fill in the gap. They can be a bit difficult to uncover sometimes, but a great place to begin is with your local area agency on aging. I’ll leave a link in the show notes and in the blog post to a locator so you can find your local agency, you can also listen to Episode 21. To learn all about what Area Agencies on Aging do. We covered that in quite a bit of detail. And that will be a very helpful episode if you’re looking to fill in the gap on resources and support. So establishing a care team could be an episode all on its own. And maybe we should look at putting one of those together. But for today’s purposes, I think that’ll give you a good overview. And now let’s get back to the topic of advocating for your loved one. As you can see, and if you’re a caregiver, currently, you’re living this. So I know I’m preaching to the choir. But a care team has a lot of moving parts. And making it run smoothly can be a challenge because each person on your care team has a different focus and a different process for achieving the desired result. Everybody is well meaning and everybody is doing what they believe to be in the best interest of your loved one. But someone needs to take charge and make sure that everyone stays on the same page to keep things moving in a positive direction. And that’s you. It’s kind of like assembling a big jigsaw puzzle. If this feels intimidating to you, I get it. But take a deep breath and keep listening because having an understanding of this will be helpful. And you probably already have a lot of the skills you need to be a good advocate for your loved one. I mentioned this earlier that an aging life care manager might be a part of a care team. And they can serve the advocate role if this is something that you just aren’t comfortable with. So go back to episode eight if you want to learn more about what an aging life care or geriatric care manager does, because that might be somebody that you need to add to your care team if this is something that is just not in your wheelhouse.
Liz Craven 08:29
So now that we’ve set the stage and have all the definitions out of the way, let’s talk about what to do. How do you advocate for someone? Where do you begin? Well, the first thing you need to do is to get organized. Being an advocate is easier when you know what you’re advocating for. So here are some things that you can do to get and stay organized. The first thing you want to do is to create and maintain a medical binder. By keeping all of the information in one place, you can help your loved ones doctors to do a better job. In this binder, there are a number of things that you need to have. You need a table of contents, a place for your insurance card or cards and a copy of your policy summaries. Your health history summary, a current health summary including copies of lab results and any other pertinent information, a list of current medical providers including contact information. You also want to include portal login information and what your loved one is seeing that practitioner for a list of current medications and the pharmacy that you use to fill your prescriptions. And if you use multiple just include all of that in there. A copy of relevant legal documents, things like Advanced Directives living wills, durable power of attorney DNR, you’ll want to include any health trackers that you use, whether those are Food and Nutrition trackers, mental health trackers, anything that you want to track that might be helpful to your loved ones doctors, that’s a good thing to put in there. You could also include a caregiver report or journal, a place where you might jot down notes about things that you’re observing caregiver communication log in case you have someone come in to give you some extra help, it might be family or friends, or it might be a homecare agency, providing a caregiver, if you have a space for them to leave their observations that can also be helpful, too. Now, if you do a Google search on medical binders, you’re gonna find so many tutorials and printables that you can use. And there are even some packages that you can purchase from companies who do this. If you’d like to go that route, they don’t seem to be too expensive. I don’t have specific ones that I have to recommend to you. But I did see an awful lot in there. And if you’ll just google medical binder, you’ll find everything that you need.
Liz Craven 11:01
The next thing you’re going to want to do is to create and maintain a financial and legal binder. And just like the medical binder, this is a place where you can keep all of the important information that you need to have access to to effectively advocate for your loved one. So in this binder, you’ll want to keep things like estate planning documents, a list of all bank accounts, investment accounts, insurance policies, and be sure to include contact information, any portal login information that you might have for all service providers. Now this binder, you’ll want to keep in a safe secure place separate from your Mac medical binder, you want it locked, preferably, in our home, we use a lot fire safe box, and that works really well for us. But you definitely want to keep all of that information secure. The next thing you want to do is to kind of evaluate your own skill set, as a new caregiver, are there things that you can see that you don’t have the skills for that you’ll need. Even as a caregiver who has experienced as your loved one getting to a place where new things need to be done that haven’t been done before, and you’re uncomfortable doing those on your own? Well, you have two choices, you can access the education and training you need to acquire those skills, or you can supplement by bringing others into assist with that. And based on your situation, you’ll know what the right thing is to do. But once you determine those and decide if you’re going to acquire the skills or bring someone in or a combination of both, that will put you in a great situation to succeed.
Liz Craven 12:48
And the last thing you want to put together is a helper contact list. So make a list of all of the people who volunteered to help you include their phone number, their email address, and details about how they’ve committed to help keep this handy and use it because they’ll tell you people, I think really do want to help. And if someone offers that help, don’t just say thank you and walk away, take a little bit deeper and find out what their skill sets are. Find out if maybe they’d be interested in coming in sitting for 30 minutes and hanging out with your loved ones so that you have time for a bubble bath or to read a book or to run to the grocery store. Identify the tasks that you could use assistance with, that others might be able to help you out with and then use that task list and ask others for the help when it’s necessary. You don’t have to do this alone. And I’ll tell you that if you can get good at creating, maintaining and using your helper contact list, your life will be better. Okay, so now that you’re all organized, you’ve got all of those pieces in place. That’s a lot of work. And I know that’s a lot of work. I’m proud of you for getting that done.
Liz Craven 14:05
Now what the next thing you need to be really solid about is knowing what your loved one wants. So do your homework, and a lot of the process we just went through previously in getting all of the documents and all of this stuff together. Some of this probably has already lent itself to knowing this part, but do your homework. If you want to be an effective advocate. You need to know what your loved ones wishes and goals are. If you’ve engaged in estate planning, you probably have discussed the medical and financial pieces already. If not refer back to episodes 10 to 14. That’s a five part series on elder law. And even when there are just a few assets, having some basic documents in place is really important. But there’s more to consider than just physical health and money. You need to ask about their social, spiritual and mental health. needs as well. What does that look like as it relates to the living environment? Are they interested in assisted living at some point? Or do they have a desire to age in place, and have help from other caregivers and other service providers? if that’s possible? do their assets match their wishes? If not, how can we get there? What adjustments can we make to the list of wants? These are some tough conversations, but so necessary. And as soon as possible. These are conversations that really should happen long before a need arises. But sometimes that’s not the case. So as soon as possible, sit down and have the tough conversations with your loved one. And it’ll help you get on the road to good solid, effective advocacy.
Liz Craven 15:49
Just as important is taking care of all of the legalities. It’s important for you to have certain documents in place if you want to be given access to medical information. And if you want the ability to manage finances and conduct business on your loved one’s behalf. Again, if you have an estate plan in place, chances are you’ve already done this. If it’s been a while since your estate plan was created, it’s probably a good idea to consider a review and update with your elder law attorney. Some of the documents that you need in place to be a good advocate are one a health care proxy. This allows you to access medical information. And without it, HIPAA prevents doctors from giving you any information at all, that you’ll complete with each of your medical providers. so important to have that done before an emergent need arises a health care surrogate form. This allows your loved one to designate the person who will make medical decisions for them, should they become incapacitated, and that is part of an estate plan, a durable power of attorney. This grants an individual the legal capacity to manage someone’s finances when they’re unable to do it for themselves. Keep copies of these documents in the binders that I mentioned earlier. And you’ll be good to go. So now let’s move on to a little bit more of the actionable part of advocacy. Probably one of the most important components of advocacy is to observe and question. Now that’s kind of the background of the advocacy, isn’t it? Trying to understand what is happening in the environment? What is happening in your loved one’s life? How are they feeling? What is happening as it relates to the services that they’re receiving? So with your loved one, pay attention to subtle changes, day to day as it relates to eating, bathing, mood, mobility, anything that you notice that might be a change, changes can be a sign of a larger underlying problem. And by identifying these things early, it can make all of the difference. What could be causing the change? And when possible, ask your loved one What’s going on? And maybe they can communicate back to you what they’re feeling? Did the change coincide with a new medication being taken? Or did you have a change in the home environment, you’re the eyes and ears for the rest of the care team. And so your input is so important in providing the best care possible. If you have other caregivers in place, ask them to pay attention and speak up when they see changes as well. And if you go back to the medical journal that we were talking about earlier, in that binder, you can create a log page that any caregiver that comes in can jot some notes on their interactions that day with your loved one that can be really helpful with medical and other professional providers. You need to think about that. Are you satisfied with the providers on your care team? Does your elder law attorney take time to really listen to you? Does the homecare agency communicate with you in an effective manner is the lawn maintenance company doing a good job? There’s nothing wrong with asking for better service or making a change when you’re not happy. confrontation isn’t easy for everyone. But you know, they say the squeaky wheel gets the grease, so do it. Do it in a nice and professional manner, but squeak squeak squeak until that issue is fixed. And a side note here, details can easily slip past you. So I think it’s a great idea to keep a notebook handy to jot things down as you go. As you observe things as questions come to you write all of those down or you can even use your phone or any other mobile device to create some recorded memos for yourself so that when you get to a place where it’s appropriate to ask those questions, you’ve got a list of them right there.
Liz Craven 19:55
That brings us to the next component which is probably The most important and that is communicate. And what’s that you said lose, communicate. This is the cornerstone of being a good advocate. Do you remember the definition of advocate, one who pleads the cause of another? good communication skills are so helpful to accomplish this. The first important communication is with your loved one. And we already talked about that. So I won’t go into that again. But having the tough conversations is vital. And by the way, in case you missed it, we covered the tough conversation topic in Episode 27. So if you need some help with that, you may want to go run back there to Episode 27. And listen to that, or you can take a look at the blog post for that episode at Sage aging.us and read the transcript. Next, clear and regular communication with members of the care team is necessary. Now, obviously, not every member should be included in every conversation. But equip every person with the information that they need to best carry out there job was success, and it’ll make your job a lot easier. For example, if a neighbor comes over once a week to sit with your loved one while you go out, it’s important for them to know about mood changes that day, or things to look out for, or dietary restrictions and things like that, when seeing the doctor, pull out that notepad that we talked about a minute ago, and that you’ve been keeping your observations in and discuss what you see day to day, day to day observations can give your medical providers clues about things that they can do to improve quality of life. As it relates to medical providers, sometimes it’s necessary to be insistent when it comes to getting your questions answered. Now we’ve all been taught to respect authority growing up and so pushing the boundaries and questioning medical providers can be uncomfortable and a little bit sticky. Don’t be afraid of this. Remember, they see your loved one periodically, you see them much more and you see them in their natural environment. So ask for and insist on answers to your questions and solutions for real issues. There’s a difference between being forceful and ugly, though, so be sure to approach this in a professional manner. But by all means, get your questions answered.
Liz Craven 22:35
Next, you need to create solid communication with family, friends and other volunteers. This can get a bit sticky to it’s easy for someone who makes a quick visit, to tell you how you can do things better. I’d say it’s even easier for us to tell them where to put that advice. But please resist that temptation, at least to start with. Most family and friends and volunteers are really well meaning when they give you advice, but they have no idea what the day to day looks like. So if you create a monthly email update, or send a quick video from your phone once in a while, that might help keep people in the loop. More importantly, answer those offers of advice with a list of ways that they can help you in the care process and in improving that process. In previous episodes, you’ve probably heard me talk about keeping a running list of tasks and things that others can do to help you and I mentioned that a minute ago as well. But you know, things like doing a grocery run or doing some meal prep, or providing you an hour or two of respite, or helping with household chores. These are things that will free you up a bit. And once you have that list provide it to people who say, let me know how I can help or those well meaning family members who are only too eager to dispense advice. Of course there are times when family drama becomes an issue. Remember that emotions can run high. And sometimes families genuinely disagree about what the best thing is. In this situation, you may just need to stand your ground. If someone is toxic to you or your loved one, seek solutions to remedy that. And sometimes it may be necessary to seek professional or legal help if this becomes unmanageable. I hope that’s not the case for you. And I would say that probably most people that is not how it ends up but you are the advocate, you are the caregiver, you know what’s best and so do what you need to do to keep your environment a good one.
Liz Craven 24:44
Next, I’m going to encourage you to trust yourself. So by the time you get yourself organized, you’ve got your care team in place, you have a really clear roadmap. Trust your instincts when the decision needs to be made. Made trust that your knowledge, your love, and your care for your loved one will be enough to guide you to the right answers, be confident in your actions and in your advocacy for your loved one.
Liz Craven 25:14
Now, here’s a piece that I think most people put on the back burner, but I believe is so so, so important to being able to be a good caregiver and a good advocate. And that is to practice self care. Self Care is a part of the equation that simply can’t be ignored. It may feel indulgent, and it may feel selfish to take the time away for yourself, but I promise you, it’s not. If you allow yourself to become rundown, and something happens that strips you of your ability to be a caregiver and an advocate who will step in, who will care for you and be your caregiver and advocate. It’s very common for caregivers to end up in worse shape than those they care for. But it doesn’t have to be that way. take time for yourself and ask for help. advocate for yourself, as well as you advocate for those who care for you deserve it, and they deserve to have a healthy caregiver.
Liz Craven 26:14
Well, I think I’ve given you enough to chew on for today. The responsibility of caring for an aging loved one is a big one. It can be overwhelming at times, but it can also be one of the most rewarding things you’ll ever do. There’s certainly no one size fits all process for Caregiving, but equipping yourself with the right tools and surrounding yourself with the right people and resources will go a long way in helping you to be the best caregiver and advocate possible for your loved one. If you have questions or comments about today’s episode, or if you have topics you’d like to see covered, drop me a line at info at Sage aging.us. I love hearing from listeners and I’d love to connect with you on social media too. You can find Sage aging on Facebook, Instagram and Twitter. Or you can connect with me Liz Craven on LinkedIn, be sure to check the show notes or the blog post for any of the links that we mentioned today. And you can find the post for Episode 29 and much more at Sage aging.us. Thanks for listening, everyone. We’ll talk real soon.
As I’ve been preparing to launch this podcast I’ve enjoyed revisiting stages of my own life and reflecting on how this topic became such a passion for me. While I’ve built my career on helping older adults and their families connect to needed education and resources, my connection to the aging and care process goes much deeper.
Some of my earliest childhood memories are of my own multi-generational family living together in one home. I was 4 or 5 when my grandmother moved into our home to help care for my sisters and I while our parents worked. Soon after, her father and grandfather moved in as well. We had 5 generations living under one roof! That was a beautifully chaotic adventure and knowing what I know now, I have so much respect for what my parents and grandmother did.
Fast forward to age 24. Newly married and pregnant with our first child, I spent several months with my in-laws to help care for my husband’s grandmother who had Alzheimer’s. Fast forward again to about 2009 – Wes and I have two teenagers about to head to college and his mother is diagnosed with cancer. Several years later, my mother is diagnosed with cancer. Several years after that Wes’ stepdad is diagnosed with Alzheimer’s disease and his father is suffering from severe dementia. You can see where this is going right? For the better part of the last 10 years we have been the caregivers. We see it as an honor and privilege to have been able to do that for our parents.
The key to navigating our later years is being proactive about gathering information before we get there and staying engaged once we do. To be sage is to be wise. There is wisdom in taking the time to ask questions, seek solutions and know your options before the need arises.
Each week we will discuss relevant topics of aging with experts who can help us to understand and be better prepared for aging. We’ll also introduce you to some Sage Agers who are totally owning their journeys through life. No topic will be off limits and we will deliver open and honest conversation meant to educate and empower our listeners. Each episode will also be available in video and blog formats.
Whether you are proactively seeking to broaden your own knowledge, a caregiver for a loved one or a professional working in the aging care industry, this podcast is for you. We hope you will join us as we explore and celebrate Sage Aging.