This blog post is Part 2 of a series, click here for Parenting your Parents: What to do when your parent is hospitalized - Part 1.
I’m back with another post about what to do when your parent is hospitalized, and today I’m going to talk about communication. When your parent is hospitalized, clear communication is key to advocating for their care, understanding what’s needed from you, and sorting through mountains of paperwork.
As a primary caregiver, I was (and still am) responsible for communicating with all of Dad’s medical team and insurance, as well as my extended family. As a millennial, there was a huge learning curve I had to battle here, so I hope sharing some of my findings helps you navigate the healthcare system more smoothly:
Finding out that American hospitals still primarily rely on fax machines and phone calls for communication was shocking. It’s 2020 after all, the internet has been around for a while. But as it turns out, even though technology has progressed, a lot of factors built into the American healthcare system have disincentivized information sharing between hospitals, facilities and even patients.
Case in point, I requested Dad’s medical records from his first hospital stay, which was a couple weeks long, and I called the hospital’s medical records department to ask about the process. They advised that I had to either fax or mail in a request form. On the form, I indicated that I would like to receive the records by email, since that was an option, and a few weeks later I got a couple of emails, with no subject line, from one of the hospital’s fax machines. Each email had an attachment: a couple-hundred page long PDF of Dad’s records. Imagine if I had picked the other option, mail.
If you’re going to need to request records, send records between facilities, providers or insurance companies, I highly recommend signing up for an online fax service. You can claim a fax number, upload documents and fax them directly. Some services even help you automatically generate a fax cover letter for your sends. The service I ended up using is called SRFax. I can scan and upload multiple files into a single fax, and it’s much easier than trying to find a fax machine every time I need to send or receive a fax. In my opinion, it’s also much safer than relying on some free fax options out there.
Having a fax service has really sped up the process of receiving signed paperwork back from Dad’s facility, too. Healthcare facilities are not allowed to send unsecured emails out, but they are allowed to send faxes. And faxes are a lot easier for staff to send than logging into their facility’s secure email system (if they have one) and sending you a note, which you have to then log into the secure email system to view.
While we’re on the topic of faxes, you might want to buy a printer as well. I never really used our home printer, since I prefer to do a lot of paperwork digitally and to be honest, I always had access to free printing at work. This year, having a printer has been a lifesaver when I’ve had to print and sign forms for Dad.
Finally, phone calls. I am not a big caller and I generally prefer to text or use messaging apps. But, I’ve learned to get more comfortable with picking up my phone multiple times a day in order to give consent for procedures, get updates on Dad’s health, chase folks for updates on him, and deal with all of the administrative work of being a caregiver. Phone calls are the fastest way for healthcare providers to reach a family directly, so I’ve gotten in the habit of keeping my phone’s ringtone volume turned up and having my phone nearby just in case I get a call.
I’ve also gotten used to repeating myself a million times on the phone because sometimes providers don’t communicate with each other, and you, as a caregiver, need to be on top of it. You might find an error someone overlooked because they were busy or realize that two facilities are telling you two different stories, and you’re probably the only one who can advocate for what’s right.
Also, I know most people’s instinct nowadays is to ignore any number we don’t know, but if your family member is in the hospital, it’s worth saving the hospital’s number and any extensions from that number in your contacts so you know who’s calling and who’s potentially a spam caller. I have had some medical professionals call me on their personal lines and restrict the numbers (missed those, oops), and I’ve also had some give me their personal numbers with the implicit trust that I would not abuse it or call them at all hours. Your mileage may vary.
One last thing about phone calls, if you miss a call, it’s not the end of the world. It probably feels very stressful, but more than likely, if it was important, they will leave a voicemail. Get in the habit of checking your voicemails!
This will probably be controversial, but it needs to be said. If you’re a primary caregiver, you are the decision maker. You don’t need to oblige your extended family or well-intentioned friends, you have enough on your plate. You are allowed to set boundaries and stick to them.
I have a very large extended family on both sides. So, as you can imagine, there are a lot of personalities. Since my cousin made the call to Dad’s building that led them to finding him on the floor, she was involved from the beginning, which also meant her elderly parents (Dad’s older sister and brother-in-law) were too. Dad’s younger sister and her children (my two older cousins) also got involved, and even cousins in Taiwan started messaging for updates and to weigh in on things. Honestly, most of it is unproductive and unhelpful commentary. There, I said it. It bothered me at the beginning, but I have now accepted that this is their way of “contributing”.
I have two examples to share about setting boundaries, in hopes that they will inspire you to set boundaries of your own:
Example #1: Near the end of dad’s first hospitalization, the internists at the hospital were pressuring me to give them consent to insert a peg tube, since he still hadn’t (and still hasn’t) regained the ability to swallow and the NG tube they had inserted previously was never meant to be permanent or long-term. A peg tube is basically a feeding tube that goes straight into your stomach. The thing is, I know Dad loves food (the true highlight of our last trip together to Japan was the food), and he’d never communicated his wishes about something like this before. My sister and I went back and forth about this for a week, our gut feeling was that Dad wouldn’t want something like this, at least not permanently. We asked the GI physician’s assistant and Dad’s neurologist a ton of questions before deciding to consent to the procedure, since the human body needs nutrition to survive and heal and Dad had no other safe options for being fed.
I updated both family group chats in LINE (one is in English for the US-based family, one is in Chinese for the Taiwan-based family) about our decision. Immediately one of my cousins shot back and said, “But he wouldn’t want this!!! There needs to be another way!!!” At this point, I basically lost it because of course my sister and I had asked about other options, we’d been asking multiple doctors and nurses about alternatives to a peg tube for a week. My cousin clearly did not realize she was just being informed and not being asked for her opinion, so I told her as much. She shut up about it after that.
Example #2: The same cousin decided to introduce her church friend to my sister and I, saying that this friend had been a volunteer with the seniors of the church, including Dad, and that she was “concerned”. I’ve never met this woman in my life, but she seemed well-intentioned and my cousin insisted that I call her. When I did, she patronizingly tried to explain how we could bypass security requirements at Dad’s bank based on her personal experience at another bank. By the way, none of what she said was accurate or useful.
After this call, she proceeded to add me on LINE and create a group chat and demand updates that I was sending to our family group. I guess she thought my cousin, aunt and uncle were not telling her something? Then, what really caused me to set a hard boundary were her thinly veiled anti-Black statements about “avoiding protests” in the area. This was in late-May and June, when Black Lives Matter protests were happening around the country.
I tried to educate her about anti-Blackness in the Asian American community, but she refused to listen. Ironic for someone who kept preaching at me to “accept Jesus” in all her messages. I had had enough of her hypocritical preachy nature, told her off, and then told my cousin that I would prefer not to have direct contact with this “well-intentioned church auntie” ever again.
I have plenty more examples and quite honestly could write a novel about how ridiculous my extended family and their friends are.
Whether your parent stays in the hospital long-term or is discharged to rehab at a skilled nursing facility, there are some things you can bring them to make their stay more comfortable and to help them communicate with you. Nowadays, the easiest items to bring them are their phone and phone charger, if they’re awake and able to use it. This way, you can have a direct line of communication with them.
Some facilities will have their own iPads that will allow you to FaceTime with your parent, and will only use their own iPads for this. Others will let you drop off your own iPad or your parent’s iPad for them to use. If you are dropping off an iPad, make sure you have security features installed so you know where it is, know what the passcode is, and bring a charger, too. It’s a good idea to also provide a case and iPad stand (preferably one with a clamp to attach to a pole or hospital bed, like this one), too.
For any devices that you drop off, make sure the chargers you include are extra long (6 feet or longer) so they can be safely plugged in and still reach your parent’s bed. This is important because a dead iPad is an automatic 30-45 minute delay on your FaceTime, this is factoring in the time it requires a nurse or CNA to plug it in and then set it up once there's enough charge.
Depending on the facility, you should also ask if you’re allowed to bring your parent things like their own clothing, blankets, books or any other items from home. In Dad’s case, we were able to bring clothing for him to be changed into during the day.
Anything and everything you drop off should also be labeled very well. Make sure your parent’s name is plastered everywhere with a permanent marker or label. Keep your own inventory of what you’ve dropped off, so you can keep track of it later. The facility may or may not keep their own inventory list, too.
While you are spending a lot of time focused on your parent, it’s important to also treat this as an opportunity for you to get your shit together. And by that I mean your end-of-life plan.
If you already have one, make sure it’s updated. If you don’t have one, now is a good time to start thinking about it and talking about your wishes with your family. Honestly, if you felt like end-of-life planning was going to be a difficult conversation to have with your partner or family, having a parent in this situation is kind of a great segue because it's top of mind for everyone. You may not have enough time to find a lawyer or get paperwork sorted out while you are busy being a caregiver, but this is a good opportunity to start the conversation.
At the minimum, you should make sure your emergency contacts and details are all updated, and that if anything were to happen to you, a trusted person has access to the information needed to help you.
If you’ve made it this far, thank you for reading. I can’t promise when Part 3 of this series is coming, but just know I have many more thoughts to share on the topic.