I’ve been a bit MIA since launching this website and blog. I left my corporate job at the end of March, and had planned on taking the month of April off. The plan was to use that time to get to know myself better and start working on my own projects and business ideas in May. It would be the first time I would stop working for someone else and start working for myself, and the first time I could afford to stop collecting a paycheck since I started working over a decade ago. I’m still in awe of the amount of privilege I have, for this to be my plan in general, and to have a comfortable home and space to stay in throughout shelter-in-place.
Well, as the saying goes, even the best-laid plans can go wrong.
At the end of April, I was out running errands when I missed a call from my older cousin in California. She followed up with a text saying my dad was in the hospital. When I got home and saw her message, I immediately called back.
She said her mom and our other aunt hadn’t heard from my dad in a few days, so they had asked her to check on him. It was the weekend and Dad’s building was only staffed on weekdays, so my cousin called the building’s main number until she got a maintenance man on the line and asked him to check on Dad. When the maintenance man got into Dad’s apartment, he found Dad laying on the floor and dialed 911. It took the EMTs and paramedics 5 minutes to get there, and Dad was at the hospital thirty minutes after that.
My cousin’s initial guess was that he’d had a stroke, and she told me they were taking him to Hospital #1 (there are multiple hospitals involved in this saga). As we were talking, I got another call. Caller ID said it was Hospital #1, so I told her, hung up and quickly switched lines. It was an ER nurse telling me that they would be admitting Dad and that since he was unable to consent and I was next of kin, I would need to consent to treatment for him.
Before I go any further, some background: Dad was diagnosed with Parkinson’s Disease (PD) in 2013/2014, and my parents got a divorce shortly thereafter. It wasn’t exactly what I would call an amicable split. Since Dad moved to California, I’d been going with him to his neurology appointments when possible (which were a nightmare to get to, but that’s more a complaint about public transit in the Bay Area than anything else), so I had learned most of his medical history. After leaving California, my plan was to come back and check on him regularly and to time those visits with his appointments. We were well aware of the risks and progression of PD, but Dad was still pretty independent and was managing his PD symptoms. He lived on his own and in the before times, he even drove his own car to the senior center to meet up with his friends and play ping pong.
As the eldest child of Taiwanese immigrant parents, no one ever tells you that this, parenting your parents and being their caregiver, will be your job one day. You just kind of assume it’s going to happen based on social and cultural norms. Having divorced parents complicates things, because normally the next of kin would be a spouse, not a child.
Anyways, back to the story. The ER nurse asked me for Dad’s medical history and I gave her what I knew from memory and started pulling records of his prescriptions and doctors visits to share with her. I told her that the last time I had talked to him was a week ago, when we’d talked for 45 minutes on the phone about what I was doing and how Dad was worried I wouldn’t find a job (he hadn’t gotten onboard with the “I’m going to start my own business” plan, yet). I also told her that Dad’s sisters hadn’t heard from him in a few days, so that’s why my cousin had called the maintenance man who found Dad. Basically, I was wracking my brain for any detail or piece of information that might be helpful for them. The nurse thanked me and said they’d be in touch.
I hung up and called my sister. Not realizing how serious things were, I foolishly decided to stick to taking a networking call I had previously set up. Halfway through, an ER doctor called for consent to run some more tests. This doctor sounded very confused and in the span of one phone call, he speculated that Dad had meningitis or a heart attack. The rest of the night was full of anxiety, phone calls back and forth to the hospital, a bottle of wine and a lot of crying.
Perhaps the lowest point of this emotional roller coaster was calling the ER before I went to bed and being told that Dad had been transferred to the ICU. I basically lost it and sobbed into the phone when an ICU nurse picked up, and I asked for an update. Needless to say, I didn’t sleep well that night.
The good news is Dad didn’t have COVID-19, and he was downgraded out of the ICU after a week. He stayed at Hospital #1 for a few more weeks, was discharged to a skilled nursing facility (SNF) before being sent back and forth between the SNF and Hospitals #2 and #3 in the weeks that followed. We still don’t know what caused him to fall, and he still has a slow and hard journey to recovery, but I’m optimistic.
Throughout this experience, I’ve realized that there are a lot of things I wish I had known about parenting a parent and what to do when your parent is hospitalized. Some of my learnings are specific to COVID-19 and the inability of hospitals to allow visitors inside at this time, and some of them are just about navigating the American healthcare system. I sincerely hope you never have to go through what I went through, but just in case you do, here’s what you should know:
Every hospital is organized slightly differently and uses slightly different names for their departments, but the important ones to know are:
Due to COVID-19, most hospitals are still closed to visitors, so it can be confusing to navigate all of these wards and departments, and their acronyms, without actually being there physically. If it’s helpful to you, you can see if your hospital has posted a map or list of their departments online.
Most departments (ER, ICU, PCU, TCU) will have a main nursing station, and then numbered or lettered stations (eg. Station 1). Patient beds or rooms are split up so that Station 1 oversees the care of a certain number of patients, Station 2 oversees the next group of patients, and so on and so forth. When you get a patient’s room number, they may be in a shared room, so their room number may be followed by a letter, usually A or B.
If you are a smartphone addicted millennial like me and hate picking up the phone, I’m sorry to tell you that a hospital’s primary mode of communication is a good old fashioned phone call. You will be receiving and making a lot of phone calls, especially since you can’t go inside most hospitals right now. If you usually keep your phone on silent or vibrate, make sure you turn up the volume and have a ring tone that will get your attention (and even wake you up in the middle of the night).
When you start getting phone calls from the hospital, save each incoming phone call’s number in your contacts to help identify future callers. That being said, some doctors like to call patient families from their own cell phones and use the Restricted/Caller ID block feature to make sure you don’t see their personal number. If you receive a call from a Restricted number, don’t automatically assume it’s spam!
Hospitals also have different phone lines and extensions for each department. So, in order to get to the right people, and minimize the amount of time you spend getting transferred or on hold, you need to know where to call. When you call a hospital’s general line (the number provided on their website), you will be directed to an automated phone tree or human operator. If you know the extension or the name of the department you’re looking for, you can ask to be transferred there directly. Someone at the nursing station will likely pick up and be able to direct your call. If you don’t know the extension or the name of the department you’re looking for, you can ask the operator to look up where the patient is or ask to be transferred to admissions.
While your parent is in the hospital, you will end up talking to a lot of people with a lot of different names. I suggest getting in the habit of taking notes, starting with the caller’s name and the date/time of the call, each time you pick up or place a call. I started out by taking notes on a sticky pad and then transferring them to one long-running Google Doc that I share with my sister.
In most cases, you will be calling a nurse for any updates or for help FaceTiming your parent (if possible and allowed by the hospital, more on that in a future post). Unit-specific nurses, the ones assigned to a specific department and nursing station, are in contact with patients the most: they are assigned to a certain set of patients at the beginning of their shift, and hand off this set of patients at the end of their shift. There are nurses present 24 hours a day and many nursing shifts follow some sort of day and night routine. Nurses are responsible for monitoring patients, taking their vitals, administering medicine, cleaning patients, adjusting and moving patients, and much much more. They spend a lot of time with patients, and I found that it was always helpful to share more about Dad, his personality and likes/dislikes, with each of his nurses, so they could get to know him a bit better.
I’ve found that it helps to ask these nurses when their shift change is because it varies by hospital and by department, and that you should avoid calling in the hour before and hour after shift change. This is when they’re handing off patients to the next shift’s nurse and the next shift’s nurse is getting caught up. These nurses are also extremely busy juggling the needs of multiple patients, if you don’t reach them, make sure you leave a message with your name, the patient’s name and room number, and your phone number so they can call you back when they are free. Don’t be offended if they forget or it takes a while, they’re busy, and you can always try to call them again later.
You will likely talk to fewer physicians assistants (PAs) and doctors than nurses. PAs and doctors are assigned to departments or by specialty (eg. gastroenterology). Like nurses, they will take on patients when they arrive for their shift, and hand off patients before they leave at the end of their shift. The difference is that there is usually also a supervising doctor who is primarily responsible for the patient’s overall care during the duration of their stay in a particular department (eg. internist), and specialist doctors who will weigh in on any specific issues a patient is having (eg. neurologist). Before a patient has any procedure, a PA or doctor will brief the patient, or you, on the risks and benefits and ask if you have any questions.
If your parent needs a procedure or special consent for something like an MRI, another nurse or PA may call. They will ask you questions to verify your identity, your relationship to the patient and then confirm that you understand the risks and benefits of whatever they are asking for consent for. They may have you do this once and have you on speakerphone for the charge nurse (the nurse in charge of a department) to hear, or they may call you, verify your identity and hand the phone off to the charge nurse. This process can be tedious, especially if you need to consent to multiple things in a day, but it’s built-in to help check that informed consent is being obtained for the right patient.
At some point during your parent’s hospital stay, you will also get a call from a case manager and/or social worker. Case managers are responsible for making sure patients have an effective plan of care and usually call you to help coordinate discharge plans. Oftentimes, they can have nursing or clinical backgrounds, but this varies. Depending on your parent’s hospital, case managers may work onsite or offsite through an agency. They will either be assigned to a patient until that patient is discharged, or they may cycle through patients as tasks related to a patient's care arise. The worst case managers don’t have the latest information, are just working off of a doctor’s orders, and can be cagey or downright condescending over the phone (yes, I experienced this multiple times). You are allowed to push back on a bad case manager. For example, if they are not finding a post-discharge facility that meets your requirements, you can give them more requirements (eg. location). The best case managers are thoughtful and proactive, and can provide you with resources like lists of local rehab centers or home health aide services.
Social workers occupy a similar, but slightly different role, in a hospital setting. They are available to help you and your parent navigate the healthcare system and services inside the hospital and after discharge. They can also provide support when making difficult decisions, or help you request paperwork like a doctors note.
In addition to these professionals, there are also nursing assistants (CNAs), physical therapists, speech therapists, occupational therapists and so many other people at the hospital, too. If you get a call from any of them, you are allowed to ask what part of your parent's care they are responsible for, and for any clarification needed.
Remember, as a caregiver, you’re allowed to call and ask to talk to anyone involved in your parent’s care. Whenever you’re speaking with someone at the hospital, you should feel empowered to ask questions. There will be a lot of acronyms, abbreviations and long words with weird spellings, and it’s easiest to ask questions while you have someone on the phone instead of trying to google it later. If you don’t understand something, back track and ask for an explanation in plain English. If you feel pressured or confused, say so. The only way you can be an effective caregiver and advocate for your parent is if you understand everything that is going on.
That being said, being a caregiver is hard. It’s especially hard when you can’t physically be in the hospital with your parent, and you’re doing everything remotely. It’s time-consuming and emotionally draining, and unfortunately you can’t really delegate being someone’s next of kin to someone else. If you have family, friends or colleagues who can support you, ask them to share the load with housework, childcare, or other responsibilities. In my case, I’m lucky to have my sister - we sound similar on the phone, so there were times when I asked her to call the nurses station or send an update to the rest of our extended family.
Like I said at the beginning, this was a saga and I have many more thoughts and tips to share. Read Parenting your Parents: What to do when your parent is hospitalized - Part 2.