How to be someone's Health Advocate (also... this is only very loosely hair related... stick with me)

December 4, 2017

4 Dec 2017

OK, so all three of my blog viewers have surely noticed that I haven’t posted anything in the last month. Wow, a couple of weeks in, and I’ve already blown my posting goals to smithereens. As promised, though…. this blog is gonna be real talk, all the time. And sometimes, life throws you some curve balls, and you must VERY QUICKLY re-prioritize. I don’t mean to say that this project is any less important…. far from it: while I was away, I did do some work on a couple of blog ideas. I just couldn’t post. Family always comes first for me. And my poppa needed me.

Many of you know that my Poppa is in a battle royale with cancer. We had a little setback the week before Thanksgiving, where he ended up in the hospital. My amazing step-mom and I tag teamed to provide round the clock assistance for him, as well as care for their adorable pup. That provided the catalyst for this blog post: some tips to be an effective and useful Health Advocate.

But first…. the only way I can even loosely tie this into having anything whatsoever to do with a beauty blog is this: acknowledging and thanking those wonderful clients who were so gracious and accommodating to a suddenly chaotic situation where I wasn’t able to provide the level of service I’ve come to be known for. Also to some peers who stepped up to help me accommodate clients during the busiest part of the hair season, when I had to step away from my business, you have my unending thanks…. you know who you are. Many clients suffered through me not getting sleep for 3 days, but still trying to think coherently and schedule people. And reschedule. And reschedule again. Because my brain just was NOT working, and I wouldn’t just give it over to my wonderful business partner, Gina, who WANTED to help. I may have been struggling to just have a modicum of control over SOMETHING in my immediate sphere of influence. So, thanks to my clients, and thanks to Gina, for finally insisting that I stop and let her take over rescheduling everyone. I can’t tell you how grateful I am for giving me the space and love to care for my Poppa and JoAnn when they needed me.

So. Back to business. What, exactly, is a Health Advocate, you ask? Simply, someone who is present during a medical situation who is responsible for helping to guide the situation. In my case, my dad was very confused, agitated and disoriented, in addition to being physically ill. It wasn’t safe, or even practical, to leave him to guide his own medical care, let alone leave him unattended. However, you do not need to be in such dire situations to find a Health Advocate a useful tool. Sometimes, even just having someone present during your regular appointments can be helpful. I’ve had quite a few talks with my dads’ medical care team, as well as my partner, who is in hospital administration, and come up with a list of suggestions that may make the role easier to understand and participate in.
1. First and foremost, a Health Advocate is responsible for helping to LISTEN, and help distill information. When you are in a health crisis, or even just at your regular yearly physical, you might find yourself being bombarded with a bunch of medical terminology, or a plethora of different suggestions for medications, tests, exams, etc. When YOU are the patient…. chances are you are not in the best frame of mind to keep all that straight. A Health Advocate should be there to take notes, ask questions on your behalf that you might be too freaked out to think of, to help keep track of your medication schedule, and help track what tests have been done or yet to be done. The patient, most likely, isn’t in the best frame of mind to attend to those things. Also, even in the BEST of healthcare facilities, staff are likely stretched to their limit with resources. I’m by no means advocating you take over medical duties, but a Health Advocate CAN help by being an extra set of ears, to keep track by taking accurate notes, and helping to facilitate communication between patient and medical staff.
2. To that end, my stepmom and I took copious notes on everything from when my dad ate, used the restroom, received medications (including which medication, what dose, and what time), how often we took him for walks around the nurse station, was bathed, when the room was sanitized, who the current staff was, and any questions my dad had. Most importantly, every time we changed places, we gave each other report, just like the medical staff does, and shared a notebook with all our notes in it. I can’t stress how handy this was for staying on the same page. I also can’t stress enough how hard we tried to be vigilant WITHOUT alienating the staff. Feedback that I got was that while every person on the medical team thought we were doing a great job and were helpful, they’ve all experienced family members who just got in the way by being an obstacle to care. The medical staff I spoke to stressed how important it is for a patient to have loved ones there to help with care, as it eased the patients fears and made them feel more comfortable, but that it is very possible to hinder care by being a nuisance.
3. It is ok…. even VITAL, to asking for help. Neither myself nor my stepmom would have been able to do this 24-7 without the other. You simply can’t be an effective Health Advocate, if you are incoherent because you’re exhausted. We learned this through hard learned experience. Those first couple of days were rough, until we got into a routine. Ask for help, but keep in mind, that the patient has ultimate say in many cases about who they will accept help from. Many times, they will be in a vulnerable position, so ask people that they will be comfortable accepting such intimate help from. Every person on the team must get adequate rest, away from the hospital or sickroom, just to decompress and reset emotionally. Self-care is just as important as patient care. It may be hard to step away, but if you don’t find a way to rest, and recharge your own batteries, you’ll be next to useless when it comes to being a Health Advocate.
4. As a Health Advocate, you may be in a situation where you must provide intimate care for someone who can’t care for themselves. This may include hygiene tasks. In our case, my Poppa was real unsteady on his feet, and very confused, but he was still able to perform his daily hygiene tasks, albeit with help. To maintain a sense of dignity for him, I helped hold him up, and was present so he was safe, but I made sure he knew I was looking away, so he could have privacy. What you don’t want is to draw unnecessary attention to the potential embarrassing situation. Acknowledge the fact quickly, tell them you’re just there for safety sake, and that you’re providing as much privacy as possible, and that you’ll try to hurry and just get the task over with.
5. There are resources you can turn to, both in the hospital, and in the home, if you feel that you need more help. It usually starts with asking for help from the medical care team. In our case, we didn’t feel that my father received enough attention the first night he was admitted. As his Health Advocates, we knew that he hadn’t received any of his medications since early in the day, and was very overdue for medications that couldn’t be late. I had to have a somewhat uncomfortable confrontation with the charge nurse because I didn’t feel the staff nurse was listening and responding efficiently. The charge nurse heard me, and immediately addressed the situation, and then assigned us a new nurse. I made sure that later, I had a chance to smooth things over with the original nurse, so there would be no hard feelings. It’s important to keep your loved one’s safety in mind first and foremost, but try to not alienate the medical staff. Always, always, start with reaching out to the medical staff with your concerns. They may suggest additional staff make a visit, like a social worker, or a home health care professional, who can make suggestions about how best to care for the patient. They can start you down the process of receiving all the care you need. Also, keep in mind that the patient may have additional resources available to them through their insurance provider, but that in most cases, you will need to have a medical power of attorney to request them on the patients’ behalf, unless the hospital staff gets involved with that process through a medical order. Ultimately, though, you must not be afraid to speak up with any concerns about the quality of care the patients is receiving, if you feel that it is lacking. Be professional, but firm, and escalate the situation as needed, up the chain of command, while always maintaining your control and calm demeanor. I think my parents were a little surprised by how…effectively… I nipped our little situation in the bud (While I’ve never avoided a confrontation in my life, I’m usually the peacemaker… at least until I perceive you standing in the way of the care of my loved ones. Then, I’m a lion on the hunt.).
6. As a Health Advocate, your hands may be full helping to care for your loved one. It’s easy to let your own life fall to pieces. I found my partner to be absolutely essential in this regard. Not only did he provide me a safe space emotionally to talk about my fears, but he really took over the running of our house so that I could concentrate everything I have to caring for my Poppa. My circle of friends (who all know and love my family) all reached out to offer encouragement and help with whatever I needed. You may find it similarly helpful to reach out to someone you trust to handle things like paying your bills, watering your plants, caring for your animals, sprucing up your house, etc. You would be staggered by how helpful it is to NOT have to worry about mundane life stuff like that. Worrying about your own life falling apart is not a great way to be an effective Health Advocate. Everyone I talked to stressed how important it is to reach out for help when you need it, and that people who love you WANT to help you, and sometimes the only way they can is to take over everyday tasks like that.

While caring for someone you deeply love in this kind of situation is a seemingly impossible task, it’s also one of the most treasured honors I’ve ever been given. That my Poppa and step-mom would trust me enough to let me help, after everything they’ve done for me in my life, was truly humbling. I’m so grateful for everyone who helped me help my Poppa. Words fail me, in that regard. I’m just so thankful that we were able to pull him through this rough patch, and get him back on track to continue fighting his fight. He’s the strongest man I know, and the most giving, loving father I could ever ask for.

And if anyone is actually reading this: PLEASE…. if you have any experience being a Health Advocate, and you see anything I may have missed, please add a comment with your suggestion! This post really needs to be a community effort if it’s going to be thorough! Let’s start a helpful conversation, for anyone else who finds themselves with questions about this!

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