Caregiving Should Be A Team Sport

Last week, Working Daughter founder, Liz O’Donnell, had the honor of keynoting the REAL Services Age of Excellence awards. Real Services is a non-profit organization committed to helping seniors and people with disabilities in northern Indiana. The awards celebrated the individuals and organizations that have made a significant impact on the lives of older adults and low-income populations. Supporting older adults takes a team. REAL Services helps put that team in place and that’s what Liz talked about in her comments. Here they are as written:

Good afternoon. Let me take you back to one day in July of 2014. That morning, I walked into Traditions of Dedham, a senior living facility, about a mile and a half from my home. My father had moved in two weeks prior and had a room in the 15 person locked memory unit on the first floor. My mother had moved in just a week before and was on the second floor in an assisted living apartment. Neither one knew the other one was there.  When I visited my father, I had to park in the back and enter through the kitchen so my mother wouldn’t see me out her apartment window. But when I visited her, I could use the front door, as my father’s window faced the back.

Two terminal diagnosis in one day

They had both just been diagnosed with terminal illnesses – on the same day in fact. On July 1, I met with my father’s medical team at then Quincy Hospital where they told me he had Alzheimer’s and could never go home. Before I had even left the parking lot after that meeting, my cell phone rang. It was a doctor at Boston’s Brigham and Women’s Hospital. My mother had been sent there the day before with stomach pain. That doctor told me my mother had stage 4 ovarian cancer and asked how soon I could get to that hospital so we could tell her together. And for reasons to complicated to get into today, my mother had decided she was going to live the last months of her life as a single woman. Hence my sneaking around.

Back to this particular day in July: I was going to interview a hospice agency and I was admittedly in a very bad mood. My life since the diagnoses had been sheer hell. I was sorting through pills and bills and wills and talking to elder law attorneys and insurance companies and doctors to try to understand the diagnoses. I had moved both of my parents into the facility near me, and an hour from their home. My father was overcoming a UTI and the effects of Haldol, a powerful, antipsychotic drug that he was given when I foolishly took him to the emergency room for an evaluation, and he was not happy about being locked up. My mother had just been told she was going to die. And I was dealing with all of it and  trying to balance a new job – I was the sole breadwinner in our family –  plus manage my life as a wife and a mother to two kids ages 8 and 10.

I remember the hospice nurse, Bev, swooped into the apartment very large and in charge. She carried a roll of paper towels and she put one on the seat before she sat down and one on the floor where she put down her purse, and then she proceeded to tell us how things were going to be once my mother started hospice. She explained to us that in assisted-living all of the medication‘s come prepackaged and that any PRN, or as needed, medications had to be administered by a family member. That family member was me. She talked about how, as my mother got sicker, I would be there to give her comfort medication’s round the clock.  I quickly realized that the scenario Bev was painting didn’t factor in my having job, let alone a father downstairs, or a family. So I  asked Bev if I could talk to her in private.

table at luncheon with Working Daughter book on the seats

Traditions has little seating areas set up in the hallways and so Bev and I sat down to talk. I told her, “I do not appreciate the fact that you just assumed that I can be at my mother’s side 24/7. I have a career, not just a job. I don’t make widgets; I do business development. I have a father downstairs who wants to know why he’s locked up and I have a husband and two kids at home who I have not seen in weeks. And quite frankly I don’t like you and I don’t want to work with you.” And then, I burst into tears.

Now you don’t know me very well but maybe you can take my word for it when I tell you I’m not usually that blunt or that rude. But I was at my breaking point that morning – or so I thought –and the words just came out of my mouth. Bev pulled her chair closer to me, a gesture I know now typically proceeds a compassionate conversation, and she said, “I get it. I’m a single mother of two teenage girls. I understand the challenges.”  She also said, “And, I’m an experienced hospice nurse and I can  tell you we’re looking at months for your mother. This disease is progressing quickly. I also know the qualities of a good family caregiver – intelligence, organizational skills and compassion – and you have what it takes to be great at this.  So, here’s what we’re going to do – your father you’re not going to worry about him.  He is being cared for by professionals downstairs and when you no longer need to focus on your mother, you can focus on him. Your job, we can’t mess with that, so I’m going to going to come up with a new plan for the pain medications. And your husband and kids, don’t worry about them. Right now, you are showing them what unconditional love looks like and that is far more important than being home for dinner or making it to their basketball games. That’s what they’re going to remember.”

Feeling seen and supported

Almost 10 years later, and I still can’t tell that story without getting choked up because it meant so much to me in that moment to be seen as a daughter, who had no warning, no planning, no training, no idea what she was doing or how she was going to move forward. And truth be told, up until that point  I hadn’t even wanted to move forward. I’m the youngest of three daughters.  It wasn’t supposed to be me! But Bev said it was and I believed her. In that moment, sitting there, I realized that there was no avoiding what I had to do. There was no going above, around, under, or  sidestepping the situation. To paraphrase Robert Frost, the only way through was through.  In that moment with Bev, I felt seen and I felt supported, I and in that moment, I was willing to accept my role as “the one” in our family.

Bev was right about my mom – she died just a few months later. And for a few years, my father and I got into a nice routine. I was able to convince Traditions to move him into an assisted living apartment where he was happy and made friends and I could bring him to school plays and soccer games and back to his home on Cape Cod sometimes. Until eventually, his dementia advanced and then I was back in a cycle of missing work for doctor’s appointments, and ER visits – my dad’s dementia made him violent and he was taken into custody, if you will, several times and sent to the psych ward. And it was a nightmare. Eventually I had to move him to a nursing home where I met Bill, the night nurse. Bill made a promise to me that he wouldn’t call the cops if my Dad got aggressive, and I made a promise Bill that I would never wake my Dad up if he was sleeping when I came to visit. Bill needed his breaks from Joe O’Donnell after all! And sometimes, if my father was sleeping, Bill and I would sit and talk and he would tell me about the stress he was under as a working son, caring for his aging parents and balancing his job.

Emcee Terry McFadden and keynote Liz O'Donnell at Age of Excellence luncheon

You know… I Googled this luncheon over the weekend and I saw that a Notre Dame football coach spoke here a few years ago and I got really intimidated. I mean first, aren’t football coaches like gods in Indiana? And second, inspiring speeches are their business.  And so, I really stated to panic about coming here and I deleted all the notes I had prepared.  And then I thought, well  if you can’t beat ‘em, join ‘em. And I really can’t beat ‘em, because even though I’m from New England, the only thing I know about football is that Tom Brady is really, really  … good looking.  

But you know, the coach and I could probably agree on something and that’s the importance of team. And that’s why I told you about Bev and Bill – they were part of my team. So was Nurse Jim who brought me a muffin one morning after I had spent the night sleeping in a chair in the ER waiting room. And  the lady who worked for the phone company. I called to turn off my mother’s phone when we moved her from Traditions to a hospice home and I begged this customer service rep not to put me on hold because I was sad that my mother was dying and the hold music made me cry – and she didn’t. I could hear her through the phone yelling to her coworkers, “Do not put the lady on line 6 on hold whatever you do! She’s sad!” There was the EMT who recognized me as a frequent flyer in our local emergency room and always stopped to ask about my parents,  Flora one of the aides at Traditions who treated my father like family and let him sit outside until after midnight so he could look at the stars, Debbie who was my mother’s home health aide before she got sick and became a close friend, my cousin who took my kids shopping for funeral clothes so I wouldn’t have to, Dr. Schlechter, the oncologist, who treated me like an equal member of my husband’s care team, when oh yeah, I became his caregiver too. Oh! and Jonathan – my coworker who went to my boss and said, “Liz needs back up right now. Let me be that for her.” I built a great team over the years.

You see caregiving is supposed to be a team sport. It thas to be. I live not far from MIT where they have this wonderful Age Lab which is focused on improving the quality of life of older people and the people who care for them.  It’s run by Dr. Joe Coughlin who wrote a book called The Longevity Economy and in it he talks about the fact that people are living longer and that we, as a society, aren’t prepared for it – we haven’t figured out how to support someone for a century. And so, what happens is family members are left trying to fulfill all of the needs for one person – the medical, legal, financial, housing, food, social and emotional. Who can do that?! Not even Beyonce.

What caregiving and football have in common

No seriously. You know that saying, that we all have the same 24 hours in a day as Beyonce – the implication being why aren’t we all living our best lives? Well, it’s actually not true. Seriously, I did the math. Using data from the U.S. Census Bureau’s American Time Use Survey, I added up a typical day for a working daughter in the sandwich generation. And guess what? Her list of daily tasks from commuting and showering and caring for family and working and everything she does – adds up to 25.5 hours. And I would imagine if those of you who work in the industry did the same exercise, it would be more than 24 hours a day for all you do too. But just wait Queen Bey. As former First Lady Rosalyn Carter said, there are 4 types of people in the world: those are caregivers, those who were caregivers, those who will need caregivers, and those who will be caregivers. Just wait.

But too often, people are going it alone. They don’t have a team – or at least they don’t know how to find one. I hear from working daughters and sons every single day who are going it alone and they are struggling! I hear from paid caregivers and senior community managers and they are struggling too. Staffing shortages, low wages, high demand – we all know the statistics in this room – 10,000 people turning 65 every single day. Every day. Family caregivers doing a collective 36 BILLION hours of unpaid care. Alone, we can all do great things but together, we can change the system.

We are the team

So, the people in this room – we’re the team. We are the team. Not just the hospice workers. Not just the senior living administrators. Not just the caregivers. Not just the volunteers. All of us. The business leaders. We need you to make it possible to care for someone and earn a living. Cause let me tell you, it’s not easy. Not right now. But it’s possible. And the elected officials. We need you to be our representative voice for fair wages, for paid leave policies, for social supports for seniors and veterans and caregivers. Any customer service reps if you’re here today – your compassion can make a big difference in someone’s life.

We live in a rapidly aging society and we all have a lot of work still to do to ensure quality of life for all. And like Bev showed me – the only way though is through. And the people who are being honored here today, you’re doing what any good coach would ask of his team. You’re leaving it all on the field. Thank you for that.  It’s an honor to be here with you.


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