A sudden hospitalization
What are you supposed to do when your parent ends up in the hospital?
My father was hospitalized so many times throughout my life that I lost count. The first time was when I was in kindergarten. I remember my friend’s mom meeting us as we got off the school bus and telling me I would go to her house until my parents got home. I remember hearing the word “tachycardia.” I remember feeling scared he would die.
When I was in high school, he was hospitalized again. This time, I mostly remember being so self-centered that I wanted to use the moment call my crush and leverage some sympathy into affection.
The next time I remember clearly. My parents were living in Nevada, and a snowstorm canceled my flight home from college for winter break. I got on one to San Francisco instead, and my parents—who had lived in Florida for decades—paid someone off the highway $50 to put snow chains on their tires to drive across Donner Pass to pick me up. In the elevator on the way to baggage claim, my mom whispered, “I want you to drive on the way back. Your father’s just had a heart procedure and I don’t want him driving so far again.”
A heart procedure? That no one told me about? I was apoplectic.
After that, there was a long stretch where he stayed out of the hospital, until he hit his 70s. Most caregivers of older parents will tell you that hospital trips become so frequent they are almost routine.
About five years before he died, just days after I was with him at a doctor’s appointment, my dad called 911 because he felt too weak to stand.
At the hospital, he was diagnosed with congestive heart failure and stage 4 kidney disease. He was in the hospital that time for about three weeks. I was there so often, I knew the names of the nurses, the vegetarian options available in the cafeteria, and the quietest spots to take a phone call.
The first time he was hospitalized after I stepped into (couldn’t help but fall into) the role of caregiver, I was clueless. My mom had handled every previous visit, of course, but she was gone. I felt hopelessly out of my depth.
Here are some things I wish I had known.
Don’t be afraid to ask questions.
I’m a hopeless people-pleaser and I hate to feel stupid. When someone in authority tells me something, it can be hard for me to question it. Eventually, when my dad was hospitalized, I started saying things like, “I’m sorry, I’m a writer, not at all good with medical stuff. Can you explain it to me more simply?” or “I want to write that down. Can you say it one more time?”
Here are some key questions to ask:
How long will that [procedure/recovery/progression] take?
What does the end-stage of that diagnosis look like?
What happens if we don’t do that procedure?
What are the side effects of that?
What does that medicine do? How long should they take it? Is it safe to take with their other medications?
Should we follow up with a specialist? Can you give me a referral?
It’s important to my parent to [stay at home/get back to work/be active]. How do you see that happening?
How common is this [surgery/diagnosis/medication]?
What are the next steps after discharge?
Avoid it.
If you can avoid your elderly parent going to the hospital, that’s honestly ideal. What would be a quick surgery or a short hospital stay in your 30s or 40s can cause all sorts of problems when you’re older. Older bodies just don’t bounce back as quickly after experiencing inactivity, disorientation, dehydration, and injury, as they once did.
Plan for it ahead of time.
Your parent hasn’t been in the hospital since that broken wrist four years ago? Great, you have time to plan for this. We’ll talk about advanced directives in a future newsletter, but if you are already having conversations about the end of their life, be sure to talk explicitly about what procedures they do or do not want. CPR? A ventilator? Intubation? Feeding tube? Being clear about what your parent wants will save you from having to make tough choices that are just guessing at what they would have wanted.
Be ready to make phone calls.
I know the stereotype about millennials and using the phone. But this is one situation in which the phone will be your primary tool, especially if you don’t live close by. If your parent was taken to the hospital by ambulance from their home or assisted living facility, you can call the hospital and ask if your parent is there. Lots of hospitals are run by corporations that run many hospitals, and if you call one, they will search their whole hospital system and tell you whether your parent is in any of their hospitals.
When you call, first you will talk to an operator. Ask for your parent’s room number, and then ask to be transferred to the nurse caring for your parent. Once you talk to that person, ask them to note your number and call you with any updates. If they forget, you can just call back. You can also ask to be transferred directly to the landline in your parent’s room, but in my experience, this rarely works out. The phone is too far away, your parent doesn’t hear it, or they’re busy with a clinician, doing physical therapy, or sleeping. Do not wait for your parent to call you.
Avoid texting your parent.
If your parent is the type of person who always has their phone on them, you might be tempted to simply call or text them and wait for them to respond. Don’t do this if your parent is hospitalized. Your parent might not have their phone when they’re in the hospital, even if they’re normally good about texting back. They may not have their charger. They may not be awake. You will lose valuable time if you simply wait for them to get back to you on their cell phone.
Visit in person if possible.
During one of my dad’s longest hospital stays, I was lucky enough to have a job that let me work from his hospital room. Propping my laptop on my legs, trying not to make mistakes while distractedly poking around in Drupal, dropping everything when a doctor or nurse walked in, I wasn’t the best employee. But being in the room is invaluable, because you’ll be able to ask questions of the nurses, see when doctors come by each day, and observe for yourself how your parent is doing.
Advocate for your parent.
Even if your parent is normally communicative and lucid, being in the hospital can be intimidating. My dad was never shy in asking for what he needed, but in the hospital, he always seemed to forget he could make his own decisions. The hospital will default to a goal of keeping your parent alive as long as possible, so if you have different goals, or if your parent does, be sure to keep those in mind as you weigh the pros and cons of various treatments.
Prepare yourself beforehand.
When you call the nurses or speak to them before going into your parent’s room, ask what you’re going to see. Are they on a ventilator? Are they lucid? Do they have visible injuries?
Remember that they may not be themselves.
For elderly patients, delirium is a common side effect of a surgery or ICU visit. Your otherwise lucid parent might be suddenly confused or agitated. They might hallucinate or panic. Keeping your parent out of the hospital is the best prevention, but if it’s unavoidable, become educated about delirium and advocate for your parent. My dad experienced delirium as a result of a urinary tract infection, which is also common. When you notice that your parent is not making sense or doesn’t seem themselves, tell a nurse or doctor. They won’t know how your parent acts normally.
Remember that you can ask that your parent be sent to a particular hospital or even be moved.
If your parent is at an unfamiliar hospital, or if you don’t feel like they’re getting the best care, you can ask that your parent be moved to a different hospital. If they need surgery, assuming it isn’t an emergency, you can ask for a cost estimate and check with their insurance to see what the costs to your parent are expected to be. You might be surprised at the cost differences among hospitals. If you end up caregiving for your parent for many years, as I did, you will start to have a “favorite” hospital. You’ll figure out which one has the Starbucks or the easy parking or the great nurse practitioner who remembers to call you.
Take notes.
You will not remember everything that you are told by nurses, doctors, nurse practitioners, EMTs, and administrators if you don’t write it down. You will be given discharge instructions, but these will be incomplete at best. At your parent’s next appointment with a primary care doctor or specialist, it is helpful to have an accurate record of what happened and what you were told in the hospital. You will also want to find out if the hospital has a patient portal that your parent can access, so you can see each medication and treatment they were given.
Remember that the social worker works for the hospital.
Some of my best friends have been social workers, so when my dad was hospitalized, I naively thought the hospital social worker would be helpful. Maybe in some situations, they are. My dad was only ever hospitalized in my lifetime in Florida, so my experience is limited. But in my experience, the hospital social worker’s goal was always to get my dad out of the hospital and into a rehab facility as quickly as possible. It was not to make sure he was ready to leave, that he was safe, or that the rehab facility was high-quality. Those are your jobs. Your hospital social worker may be able to advise you on which facilities will take your parent’s insurance, but almost everything else is up to you.
Treat your parent as you would want to be treated.
If you were hospitalized, you’d want to be included in every discussion about your care. You’d want to fully understand your diagnoses, medications, procedures, and options. You wouldn’t want people talking about you as though you weren’t in the room. You’ll need to gauge your parent’s mental state and ability to participate in such discussions, but don’t completely take over if that isn’t necessary. It’s easy to slip right into manager mode, but, most of the time, your role is to support and advocate, not to control.
Remember you can fight or delay a discharge.
You can appeal a hospital discharge order, but it’s complicated. Hospitals have a financial incentive to discharge Medicare patients, so if you feel like your parent is not ready to be discharged, review your rights and consider appealing. On more than one occasion, my dad was discharged before I felt he was ready, but I didn’t know we could contest it. In many cases, pointedly asking questions might be enough to sway the doctor to delay a bit. My mom’s best friend was hospitalized several times recently, and she was suffering from temporary dementia due to a UTI. Waking up in a strange place would be disorienting, so her son smartly requested that she be transferred to rehab during daylight hours.
Be strategic about what you bring to the hospital.
You want to make sure your parent has everything they need, but also that they aren’t bringing things that are valuable or irreplaceable.
Here are some things to bring for your parent:
Copies of your parent’s legal documents (health care surrogate form, advanced directives, power of attorney)
Your parent’s hearing aids, glasses, dentures (and cleaner), toothbrush, hairbrush, and other necessities (what do they always have? ChapStick? Hand cream?)
A blanket, sweater, or robe (hospitals are cold!)
Health insurance information
Up-to-date medication list
Earplugs and a sleep mask (hospitals are loud and bright) and/or a white noise machine
Here are some things to avoid bringing:
Jewelry
Cash
Your parent’s full wallet/purse. They probably only need their health insurance card and maybe an ID, but you can bring those back with you after the staff have made their copies.
Lots of clothes and toiletries. Your parent is probably going to switch rooms one or many times at the hospital, and if they have many things there, something is going to be left behind.
And here are some suggestions of things to bring for yourself (take these home each day or store in your trunk):
Toiletries in case you stay overnight in your parent’s room
Sneakers and comfy clothes in case you can get in a walk or run
An extra phone charger for yourself (and your parent)
A book or e-reader (or download the Kindle app on your phone)
A way to take notes
Earplugs or a sleep mask if you think you’ll have to sleep there
In case you missed it:
Last week, I shared advice on how to know when you should step in and how to track your parent’s difficulties managing the activities of daily living. Hop over to that post for the list of questions you can ask to gauge your parent’s current abilities and to download the free tracker.
This is an incredibly helpful post. My mom is probably going to be having surgery next week and will be in the hospital for several days. I live several states away, and she keeps saying that I don't need to be there. And I keep telling her yes, I do.
As someone who has spent way too much time in the ER and hospital with aging parents over the past three years, I think you nailed it. The only thing I would add is trail mix or protein bars for your (the caregiver’s) bag in case you need a good quality snack when the cafeteria is closed.