Joanne Rubano is the mom to our very own editor, Julia. And with more than thirty years’ experience in the healthcare system—from ICU nurse to home healthcare business owner, to case manager—she’s seen every piece of the patientcare puzzle. But it wasn’t until her own father fell ill at age 95 that she realized: the learning is never truly done.
Rajiv: What is your caregiving experience, right now and in the past?
Joanne: My earliest caregiving experience came when I was in my early 20s. They found a lump in my mother’s breast. It was the mid-70s and no one knew too much about what that could mean yet. But as we soon found out, the lump meant breast cancer.
My mom was a particularly strong person, and she dealt with a lot of her illness herself. She made a personal plan that looked something like: go to the surgeon, have the lump removed, return to status quo. But of course that’s not what happened. It wasn’t just a lump, it was metastatic cancer. She’d pass away a few years later, when I was just 28.
All those years leading up to her actually passing were very difficult. When I graduated college, I lived very close to my parents. So you could almost say that due to proximity, I was extremely present in the caretaking process. That and, of course, I was close with my mom. Additionally, my dad really put his entire life on hold during this time. While my mom was going through chemo, he took on all of the household responsibilities that she previously had claimed as her own. Again, it was the 70s, and that type of ‘responsibility bearing’ for the male in the household was uncommon, to say the least. I mean, the guy had barely ever stepped into a grocery store! He cooked, cleaned, chauffeured my mom to appointments, and did all of this while working full time.
I’m from a very traditional Polish family. I was born in Warsaw and when we moved to the States, we came to an extremely Polish-centric town in Connecticut. It was a challenge for us to assimilate to the American culture in general, but add trying to understand the smaller idiosyncrasies of the medical world … it proved difficult to really understand what was going on with my mom. I was in school learning to be a nurse, ironically, and suddenly I went from learning about how to be a nurse in the classroom, to basically becoming my mother’s caretaker. I think we were handling it pretty well, despite really changing our lives to help and cope in any way possible. But things got worse when her tumor spread. It wrapped around her trachea, which meant she needed a trach, or breathing tube that’s placed through a hole in the neck. It goes directly into the windpipe to help you breathe. My mother was a very proud person. Dignified. So this was a disfiguring experience … I use that word in much more than just the physical sense here. As hard as it was to see this happen to my mother, it was harder to watch her go through it.
My father remarried within 10 months of my mother passing away. It’s standard in the Polish community for a widower’s friends to find him a new wife. So they did. After over thirty years of marriage to my father, about a year ago, my stepmother became ill. She actually moved back to Poland where her biological children are. She wanted to be closer to her daughters while ill, in much the same way I’d been alongside my mom during a similar time. My father was 94 at this time. He was ambulatory … drove and grocery shopped. All of that, but it wasn’t realistic for her to stay, and she knew she had better care elsewhere.
Not long after my stepmother left, my dad started to feel poorly. He wasn’t doing very well living on his own. So I started having to go up to his house for every appointment. Despite the fact that he was relatively healthy, he couldn’t communicate and was extremely hard of hearing. So I was with him a lot. I mean, 94 years old is not young, no matter how good your overall health is. He had his 95th birthday on Valentine’s Day, and a few days later he went into the hospital. His heart went into atrial fibrillation. He hated being hospitalized and on all the meds they were giving him. He was sent home, where he didn’t do well, and was re-hospitalized a few days later. It all happened very quickly. He passed away four days after the re-hospitalization. I wasn’t expecting it, and to be frank, I was completely unprepared for his decline. That is an ironic statement, really, given my profession. I really should have known what was coming as I saw it barreling towards me. And in a way, I guess I did. I didn’t want to let go, even though it was clear that he did. But it’s different when it’s your own family. No amount of experience can prepare you for that.
What is your professional background? Your field of expertise?
I got my bachelor’s degree in nursing at the University of Connecticut. I started in home healthcare and did clinical work, which is rather unusual because most nurses start in a hospital … you’re encouraged to go into a more institutional setting to start. But I’m glad I did it the way I did. The experience made me realize that there was a great deal I didn’t know.
I then went to work in various hospital settings, mostly the Intensive Care Unit. Not long after I started doing that, my husband and I had the opportunity to own our own home healthcare business, which we had for about five years. That was such a fascinating experience because I got to do a little of everything, from hiring to HR to marketing to payroll, Medicare and Medicaid … it was a lot! And I was so young, in my early thirties. When we sold the business I decided to get my MBA. So I did things a little backwards, you might say.
I continued in homecare through different types of agencies and in various administrative positions. That’s when I went into case management. My job as a case manager is to help patients transition from the hospital to wherever they need to go post-facto. Whether that’s to a nursing home, to their own home, to hospice … you name it. It calls on all of my nursing and home healthcare skills pretty much every day. I use my nursing background and medical knowledge to ensure that we close any gaps and barriers in our treatment or discharge plan. A big part of my position is also counseling patients’ families in preparation for discharge. It’s a lot of research and end-to-end work. I’ve been at Yale New Haven Hospital for nearly a decade and a half, since 2004.
How have your professional skills and perspectives influenced or impacted your caregiving efforts?
I’m very lucky to still have a great deal of elderly family. But of course, with age comes illness. It’s just a fact of life. I’ve found that a lot of my caretaking now is spent sharing knowledge. For instance, I’ve found that generally, people who don’t work in the hospital system are not super knowledgeable about the process of passing away, and how sometimes it comes quickly, and other times, it takes months, or years. For some, one minute they’re here, and the next they calmly close their eyes and they’re gone. I’ve found that my role familially is to exhibit that oftentimes, this long, slow decline is just how it is. In a way, that’s the real ‘caregiving’ aspect of my job that’s bled into my family reality. Let’s just say, dying isn’t really how they portray it on TV or in the movies.
I’m a big believer in sharing your knowledge when it’s appropriate and helpful, and I’m glad I can be of service to my family while so many of our elderly loved ones are reaching their later years. I’ve found that caregiving doesn’t always mean “hands on.” Setting up expectations, helping them understand what’s going on and what which test means … explaining why there might be multiple hospitalizations, that there will be a decline, choices to me made; it’s all part of the process, which is very specific to the individual.
How has your caregiving experience informed your professional life?
I think that my experience, both personal and professional, has really helped me to develop that very wide breadth of knowledge that enables me do my job well. It was striking how different the experience was with my dad; being on the other side, sitting next to him, not standing over the bed. It was paralyzing at times to make decisions, though it was really important to me to keep his wishes at front-of-mind. That was probably the hardest part … knowing that I wanted to keep him alive, when in fact, he was ready.
I think I’ve always been pretty privy to how hard it can be for families when they’re dealing with an ill loved one. Hospitals are their own animals, after all, and the system has barricades to keep us from feeling too much as caretakers. But dealing with my father’s decline definitely made me a lot more sensitive to the experiences of others. It’s going to be hard, and different every time.
What one piece of advice would you give someone who found themselves in similar caregiving situations?
Communication for case managers is critical. Listening to the direction that the patient wants to go in, and that the family wants to go in, not necessarily anticipating what they’re going to say, but rather listening to them. Being patient with them, empathizing, trying your best not to use hospital jargon (that’s a big one, oddly enough). Making them feel at home when they know they are not; keeping it real without sugarcoating. It’s a hard gig and a fine line to walk, but treating people with respect and dignity throughout is paramount. It’s what we all deserve.
Interviewed: 24 September 2018, by Rajiv Mehta; edited by Julia Rubano
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