Episode 34 – Caring and Advocating for Aging Parents as Faculty [Pt. 2]

Hi Professors,

How many of you are currently providing some form of care for your aging parents while also serving in your faculty position? And how many of you are also raising your own children at the same time? How are you holding up right now?

While I do not have children and cannot comprehend what it would be like to juggle my career with caring for both parents and children, I do now have experiences with being a full-time primary caregiver and advocate for my father during the past 2 years. 

I can’t say I’m exactly a member of the sandwich generation, meaning that people are caring for both aging parents and children. But I’m guess I’m more of like a tartine or an open-face sandwich.

In this 34^th episode of the Rise with Clarity Podcast, I’m going to be sharing with you a little bit about my journey as a patient advocate and caregiver for my father since 2023. This is Part II of a short series that I’m putting out on faculty caregiving. 

So please have a listen to Episode 33, “Caring for Aging Parents When You’re on the Tenure Track” if you haven’t checked that one out already.

Being a caregiver is a job that I never applied for or interviewed for. Yet, it is probably the most meaningful full-time job that I’ve ever held. It is also one of the most demanding jobs in terms of sheer hours, physical, and emotional labor. I truly believe the saying that you never really can understand what it’s like to be a caregiver until you become one yourself.

And there are different levels of care that you may be providing…from the more hands on assisting and support in the home to helping out remotely by making arrangements for doctor’s visits and medications and also dealing with US health insurance. Add in your regular job duties and taking care of children, and you can start to feel overwhelmed and burned out very quickly. 

Two years ago when I was still in my faculty position, I was thrust into the roles of patient advocate and primary caregiver in a pretty extreme way.

My Father’s Journey of Care Post-Stroke and Things I’ve Learned as a Patient Advocate

I’d like to share a few things that I’ve learned as a patient advocate and also from the time when my father was in the hospital the first time. Prior to that, I had no real experience with navigating the US healthcare system for a loved one. 

I’m sharing this in the hopes that some of this information may be helpful if you ever find yourself advocating for a loved one or aging parent in the hospital.

As I’ve mentioned before on this podcast, my father had a bilateral thalamic stroke in January 2023. The stroke was acute and also rare. Because of the rarity of this kind of stroke impacting the artery of Percheron, my father’s initial diagnosis was delayed in the ICU. He was in a coma for several days and also on life support. 

We were told by one doctor that he likely had 2 weeks to live, and that we should make our final preparations. And the neurologist who stopped in to check on my dad (usually after visiting hours and after the family left) would write in the notes on my dad’s chart: “Patient unresponsive.”

If one were to just read the notes on my dad’s chart and accept the doctor’s prognosis at face value, then things would have felt pretty inevitable. 

Yet, I had the hunch that there was something missing. 

And during visiting hours I began to witness my father moving his hands and feet even though he was not vocally responsive or able to open his eyes for several days. 

As it turns out, bilateral thalamic stroke survivors have symptoms that present differently than other stroke survivors in that they can present with hypersomnolence, third nerve palsy (which is a vision impairment), and cognitive deficits. 

So, I pushed back. 

Primarily because I sensed that the prognosis was somehow off and also because my father was unable to awaken and advocate for himself. I tried to read up on this particular kind of stroke, doing my own research, and I read all of the lab results and notes in his medical chart. 

I was also very fortunate to have been able to contact a grad school friend who is a neurologist who advised me on how to interpret the MRIs and also navigate the next steps after the ICU. His advice, I believe, really helped to prolong my father’s quality and length of life. And I’m so grateful to him.

My friend suggested the idea of speaking with the medical team and introducing a stimulant. This made a significant difference, in that my dad was able to be alert enough to pass a physical therapy evaluation. This one test then qualified him for insurance purposes to be placed into an acute inpatient rehab hospital upon discharge from the ICU. 

The stimulant proved to be critical in his rehabilitation—as he had to be awake and alert enough to participate in at least 3 hours of therapy per day – physical, occupational, and speech therapy. After one month of intensive inpatient rehabilitation, my father was discharged for home in March 2023. And thereafter, he required 24-hour care and assistance.

If I had followed the initial recommendations of the case worker and medical team at the first hospital, my father would have been discharged and set up with home hospice.

So, me pushing back was pretty annoying for the medical team and the social worker. But it likely led to a very different outcome for my father, who recently passed his 2-year survival milestone this January. And we’re so grateful for this extra time.

Advocating for a Loved One in the Hospital: 5 Suggestions

If you’re advocating for your loved one or aging parent in the hospital, here are 5 suggestions that could be helpful for you:

1. Figure out if your parent has an advanced directive, along with other important documents such as a health power of attorney. You can also ask where these documents are located in your parent’s house in the case that you need to retrieve them. 

I recently purchased a Nokbox (Next of Kin Box) that is a system that you and your loved ones can prepare in advance of any kind of emergency.

2. If your parent ends up being unable to check or access their online medical chart while in the hospital, ask them in advance if they will allow you to use their passwords. My father kept a physical notebook with all of his passwords, which allowed me to access his medical charts. 

This was absolutely indispensable during his hospitalization, since I was able to see his lab results come in and also the daily notes that were written by the medical team and various specialists.

3. If there is a possibility to advocate for acute inpatient rehabilitation following an ICU stay (and if your loved one is willing to participate in intensive therapy), then it may be worth it to fight for this. In the United States, there are other lower levels of rehabilitation or care such as long-term acute care facilities (LTACH) or skilled nursing facilities. 

But insurance policies (from what I understand) will not permit a patient to move from a skilled nursing facility up to an acute inpatient rehab hospital after they have been discharged from the ICU. I am glad that my father was able to have the highest level of care with rehabilitation immediately following his stay in the ICU. And this is even though insurance initially would not approve it because of his age and his underlying conditions and the hypersomnolence. This is something I really had to fight for.

4. Taking photos or videos of my dad’s progress in the hospital was helpful. When the medical team made their rounds in the morning, my father wasn’t always awake—which led some to believe that he was not improving and that he was continuing to be unresponsive. Showing videos of my dad squeezing my hand, playing with a ball or opening his eyes provided them with evidence that he was indeed responsive.

5. With just a few exceptions, most of the nurses we met during my father’s initial hospital stay were awesome. They’re often the ones that you see the most in the hospital room. And they can help you as a patient advocate. 

Since my mother and I were spending so much time at the hospital we were clearly noticed, many of them did go out of their ways to support our requests and to convey messages to the doctors. We were so grateful to have a supportive care team, especially at the rehab hospital, and we made sure to express that gratitude to them.

So I hope that some of this is useful information if you find yourself in a position where you are the sole advocate for your loved one. And do feel free to reach out to me if you’d ever like to chat about your situation. I’ve learned so much on my caregiving journey. And although I’m not an expert, I’d be happy to listen and also direct you to some of the resources that I’ve found and learned about along the way.

In the next episode in the faculty caregiving series, I’m going to share more details and resources on caregiving.