5 Steps to Being a Truly Helpful Patient Advocate
One of the weird things about getting sick for me has been that I’ve actually had a lot of practice being on the other end of the hospital bed. I was my mom’s advocate while she was in the hospital off and on for five years before she passed away. It wasn’t anything official – there was no cape, no mask, and no compensation (I mean, except for her hospital food, and OMG, hospital cafeterias make great burgers, but I digress) – but she wanted help and she wanted it from me. She went from being a very in charge, dominant personality who ran her own life as well as ours to…the exact same person, except her body wouldn’t work properly every few months and it would be back to the ER (long medical story short, she had obstruction after obstruction after surgery for peripheral arterial disease (PAD), complicated by emphysema). As the person who went with her on these ER trips and was there just about every day of the inevitable hospital stay that followed, I learned what it was to be someone’s advocate. Over the years, I figured out just what that meant, and I want to share what I learned.
1. You are an extension of the patient. There were many, many times when I didn’t agree with my mother. We would have loud fights or I would leave the hospital angry only to return or I would field calls from family and friends that would go something like this:
“Tina, your mom needs to do such-and-such!”
“I know…I know…I know…”
It gets to be really frustrating – feeling like you know better, that your loved one should just listen to the doctors – but here’s the thing: as with any situation in life, if you want to truly help someone who’s sick, you need to be prepared to help them the way they want to be helped. Some sick people are going to be scared and will want you to make decisions. Some people, like me or my mom, already know what they want and just need you to be there to insist on things for them, make the doctors listen to and respect them and sometimes just get them an ice cold iced tea with a straw in it. My mom’s doctors did a lot of painful stuff to/for her, and there were several times towards the end of her life when I would have wanted her to make different choices, to let them do certain procedures, but she eventually had had enough and said no. I learned that if I really loved her, and wanted to make her, the actual sick person, feel supported, I needed to stop telling her what she needed to do and start just saying, “OK Mom, what do you want me to do?” To try and tell her what she should say yes or no to, or to try and convince her that everyone knew better what she should do with her body, was to take away what little power she had left. Her illness had already done that; she didn’t need more. A true advocate is a good listener, an assistant.
2. Present a united front to the doctors. This is really more of a continuation of the first thing. My mom was a…let’s call her a strong personality. She said what she thought and was so often in horrifying pain, which doesn’t make people more diminutive. So there were times when she would fight the doctors, fight me, fight anyone who told her she should get another tube down her throat, another surgery – you get the idea. During one such argument I remember her saying that I wasn’t on her side, so I made her a promise. I told her it was her body, her sickness and I would never fight with her in front of the doctors. Being in the hands of doctors, no matter how good they are, is terrifying, especially when you’re sometimes on meds that make you feel out of it or if you’re in the hospital alone, particularly at night. It will mean the world to the patient in your life if they know the doctors and nurses taking care of her know there is someone out there who has their back 100 percent; so no, you do not fight with them in front of the doctors. I fought my mom tooth and nail over things in private, but her healthcare team only ever saw me as someone who believed in my mom and, more importantly, respected her as a smart, informed person, capable of making smart choices for herself. Be their teammate, not their boss.
3. Don’t forget that the patient is human. When I am at my worst, pain-wise, or in the depths of self-pity and I go to my best friend about it, he usually says something like, “Oh put it away….just stop it.” (Let me stop and say though that this does not mean he lacks in empathy or love – I am totally certain he would kill a wild animal with his bare hands if that animal were threatening my family, and then because he is smart and weirdly skilled, he’d probably make an amazing coat out of its hide and… I’m getting off track.)
The point is, he doesn’t ever treat me like I’m so sick that I’m no longer me: sarcastic, punny, softie Tina. I can be and have been at the height of my pain, and my friend can make me laugh by saying, “Come on, let’s gooooo!” when I’m inching down the street like an old lady. When my mom was in her hospital bed and I was going through a break-up, I still cried my eyes out on her shoulder and made her listen to my woes by the hour because she was still first and foremost Mom – not just a weak, sad shell of her. Treat your patient like the person they’ve always been – just with an extra dose of understanding when adjustments have to be made. Like how my father-in-law almost never starts the car until I’m all the way in the car, Stan. (It was one time by accident but, I mean, it’s been so long since the last time I brought it up!)
4. Get an awesome memory. Or, like, a notepad. If your loved one is chronically ill, there’s only ever going to be more to learn and remember over time, and it’s up to you to remember it. The patient will often be too rattled, too sick or too busy being poked and prodded and injected to take in all the information, medications, symptoms, etc., that are happening/being given to them. You will be performing a huge service by being the one to know all of that stuff; there may even be times when it saves their lives. What meds gave them a bad reaction? What meds help them relax before scary procedures? What is the actual timeline of their disease? I cannot count the number of times I detailed Mom’s medical journey for ER doctors which gave them what they needed in a matter of minutes so they could start helping her instead of having to wait for her to be OK enough to help them help her.
5. Finally (and I know this is on every single list about this kind of thing but it’s worth repeating so I hope you’re still reading), make time for yourself. This is not a light suggestion. Taking care of a loved one long-term is incredibly draining physically, emotionally and mentally. You cannot take care of anyone if you are falling apart. You cannot truly be present for someone whose life might be in your hands if you’re too tired, sick, sad or hungry. Let your friends drag you to a movie sometimes. Get your nails done. I remember helping my mom clean up in the hospital once and catching a glimpse of my newly blown-out hair out of the corner of my eye, and even in the midst of what was happening, I had a moment of feeling good, pretty and human. It matters, guys. Even if they don’t say so or even realize it at the time, your loved one will want that for you too. I don’t mean stay away for days at a time, leaving them languishing and needing help. There will be days when all you have time for is grabbing a nice, fancy coffee on your way in instead of regular hospital coffee. Do that. There will be nights when your significant other wants you to Netflix and chill after a nice dinner. Do that too. And watch Criminal Minds. Anyway. Even if your first thought reading this is “I can’t do that; it’s not fair to my mom/wife/boyfriend/etc.,” think about it like this: if your loved one was getting a CAT scan, would you want it to be done by a machine that didn’t take clear pictures? Would you want them operated on by a drunk surgeon? No, and if you are demanding that their healthcare team be top of the line, you need to make sure that you, their advocate, their lifeline to the outside world, are also top of the line and in tip-top shape.
At the end of the day, what really matters is that your heart is really in it. That you want to do the right thing by your person and that you put the love you have for them into the way you care for them. I didn’t want my mom be alone, and from the moment I ended up in the ER with my mother-in-law telling me, the doctors, and my fiancé what to do from my bedside, I knew I would never be alone either. I’m lucky; I have several advocates, all of whom are there for me in slightly different ways. It will never hurt you to be there for someone who is sick, so long as you can do it the “right way.” In a broad sense, that means a lot of different things, but hopefully this will at least highlight the big stuff. Good night, and good luck.
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