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Caregiving Champions

There are so many 'caregiving champions' who demonstrate compassion, grit and perseverance. We honor three of them: Pauline Boss, Dr. Jessica Zitter and Mary Daniel.

By Kathy Ritchie
A photo collage of an older caregiver, a grandchild and an older man sitting in a wheelchair. Next Avenue Influencers in Aging

The last 20 months or so have shined a bright spotlight on the struggles endured by both family caregivers and paid caregivers throughout the pandemic. Last year, nursing homes restricted access to family members, who often support paid caregivers by helping with activities of daily living, like dressing and eating. Sadly, many residents endured countless weeks and months of isolation and loneliness that resulted in a decline in health and even death.

Family caregivers fought hard to get back into nursing homes and see loved ones, including Jacksonville, Fla.-based Mary Daniel. This Influencer in Aging founded Caregivers for Compromise, a Facebook group with more than 14,000 members, after being denied access to her husband who has Alzheimer's disease.

At the same time, we have witnessed an unprecedented loss in life.

So many Americans were unable to say their final goodbyes to those they cherished, because of pandemic-related restrictions. As a result, there has been a rise in complicated grief, which can dominate thoughts and feelings to the point that it's debilitating. Learning how to live with loss and joy will likely require guidance, and that's where Influencer in Aging Pauline Boss, professor emeritus at the University of Minnesota and author of the forthcoming "The Myth of Closure" comes in.

In her book, Boss, 87, shares her own grief journey, including the passing of her younger brother from polio and the loss of her beloved husband in 2020. 

Perhaps acting as a bridge between these two fearless champions is Dr. Jessica Zitter. This Influencer in Aging, a palliative care and hospice physician based in Northern California, recently produced a powerful documentary called "Caregiving: A Love Story." In it she, tells the story of a husband who is struggling to care for his dying wife.

Merriam-Webster defines a champion as "someone who fights or speaks publicly in support of a person, belief, cause, etc." All three of our Influencers in Aging are warriors in the caregiving space. They have borne witness to the relentless challenges facing caregivers and the suffering many endure at the end of life.

Pauline Boss

Pauline Boss first came to my attention in 2017 — three years after my mother died from frontotemporal degeneration (FTD). I was preparing for a live, sit-down interview when I first opened her book, "Loving Someone Who Has Dementia."

The book, about finding hope and meaning while caregiving for a loved one with dementia, was a revelation to me. Boss compassionately wrote about guilt, shame and anger. I learned that those feelings were actually quite normal for caregivers.

She wrote: "Perhaps one of the unstated burdens on caregivers is the judgment they receive from others — relatives as well as professionals. That caregivers are usually aware of these judgments only adds to their stress."

"Thinking [that] you will never suffer, you will never lose someone, you will never have someone you have to take care of, this ego wanting its own way."

That's something I had personally experienced and struggled with.

And she wrote about grieving the loss of a person who is still alive:"It is in itself a complication that will confuse you. Regardless of the dementia's source, your having to accept the loss and acknowledge the need to grieve while someone is still alive defies logic."

She also introduced me to both/and thinking —"that is understanding that two contradictory ideas can both be true." In other words, it was OK and totally normal for me to wish that my mother's dementia was both over and still want my mother to keep on living. 

I poured over her book, underlining passages and jotting down notes. If only I had had it while still on the caregiving journey — there was so much conflicting emotion that I grappled with.

Still, in reading Boss' book, even after my mother's passing, her work did something for me that no one else had: she gave me the power of language: "ambiguous loss," "both/and thinking," "complicated grief vs. normal grief" — concepts I had never heard until I opened her book.

In some ways, it set me free.

And I was not alone. Boss had given — and continues to give — countless caregivers the vocabulary they desperately need to lean into the ambiguity, let go of the uncertainty and tolerate the relentless grind that is dementia.

A Society That Refuses to Grieve

In a recent interview with Boss, I asked her about our society's desire to ignore or minimize that which is uncomfortable, such as death or suffering.

"I believe we're a society of high mastery orientation in this country," she said. "And what that means is that we want things our own way. We want to straighten the rivers, we want to clear the plains, we want to build where nobody ever built before."

And while there are advantages to mastery-oriented society in terms of innovation — think of the tremendous effort to land on the moon — she told me that it can significantly damage a person.

"We certainly don't like ambiguity. We don't like losses that are not clear, it drives us crazy."

"Which means that if someone is sick, we should get over it. If someone dies, we shouldn't grieve — maybe three days, and that's about it. We should get over it," lamented Boss. "And it's doing the human beings in our society harm to have this pressure of getting over things; of having things go away; of not suffering in front of other people because it makes them uncomfortable."

And that's not really healthy — or normal. After all, suffering is a part of life, said Boss. "Thinking [that] you will never suffer, you will never lose someone, you will never have someone you have to take care of, this ego wanting its own way," she told me.

It can also make accepting what we cannot control — like becoming a caregiver or living through a global pandemic — very difficult. 

"We certainly don't like ambiguity. We don't like losses that are not clear, it drives us crazy," she said. And, Boss noted, we saw that play out throughout the coronavirus pandemic, "which was full of uncertainties and ambiguities. But I think we will become a stronger society, if we can acknowledge when we are facing something that is so unclear and we can learn how to cope with it and not always need to have our own way."

Boss reminded me that life has both joy and suffering — even in the face of a global pandemic which has killed millions worldwide. 

"Life doesn't always go our way," she noted. "And the best way to cope with that is to do that both/and thinking that I've written about. You say life has both been really good and there have been some losses that really hurt. So, you balance the joy and the pain."

The Myth of Closure

In the preface of her latest book, "The Myth of Closure," due out December 14, Boss wrote that, "Continuing to use the world 'closure' perpetuates the myth that losses and grief have a prescribed time for ending — or never starting — and that it's emotionally healthier to close the door on suffering than face it and learn to live with it."

In this book, Boss wrote about the death of her husband, Dudley Riggs, last year from a stroke and that of her little brother, Eddie, decades earlier from "another plague" — polio. 

"Find a purpose. A purpose of some sort, that honors the person you lost, or a purpose to prevent that loss from happening to other people."

"And I wrote about that because it reminded me of what was happening right now," she said, talking about the pandemic. "We did not have a vaccine, but the scientists were working on it. My brother Eddie died the summer before the Salk vaccine came out. So had there been a vaccine, he wouldn't have died."

Boss, along with her family, was devastated by his death. Eddie was only 13.

"Our entire family immediately got vaccines as soon as they were available," she said. "And after Eddie died, we found meaning by going door-to-door for the March of Dimes, and collecting dimes to help the scientists." 

It was their way of finding meaning in his death. "Find a purpose," Boss said. "A purpose of some sort that honors the person you lost or a purpose to prevent that loss from happening to other people."

Because, as Boss wrote in her new book, "There is purpose in the telling. We pass on our narratives about the paradox of absence and presence, of loss and resilience, because we don't want closure."

And she's right, at least in my case. Finding meaning in the mess that was our caregiving journey has helped me process what was a prolonged and devastating loss.

Her books are a reminder that it's OK to hold my mother close — I do this by keeping photos nearby and sitting in the rocking chair she once used to rock me as an infant. I am grateful to Pauline Boss for reminding me that there is no wrong way to grieve and there is no need to close the door on my life with my mother.

Two Questions About Aging for Pauline Boss

If you could change one thing about aging in America, what would it be?

It would be to lessen the isolation of the aged. For frail elders, loneliness pervades no matter the income. While most have a strong desire to age at home, adequate home care with social contact is rarely possible. Freeing family caregivers for social time would help.

How has the COVID-19 pandemic changed your perspective on aging?

At 87, I see now how precious each year is. The pandemic has taken away nearly two years, very dear to someone whose lifespan is shortened by age. Yet, I have found ways to value each day despite the restricted freedoms. I have found renewed purpose in writing.

Dr. Jessica Zitter

Talk to Dr. Jessica Zitter about the word palliative, as in palliative care, and you'll get a brief lesson in Latin. "To palliate means to cloak," she said. " It's from the Latin, palliare." And that's what Zitter does. She cloaks people from suffering. As the attending physician at a public hospital in Northern California, she practices intensive care and palliative care medicine.

"This is a new subspecialty," she explained. "It's probably one of the most recent ones to join the American Board of Internal Medicine. In 2008 was really when we started really calling it an official subspecialty."

Really, the main goal of this particular specialty, she said, is to bring an interprofessional team — which includes a doctor, a nurse, social worker and chaplain — to help support patients and alleviate suffering, which we typically think of as pain.

"There's all sorts of other types of suffering," explained Zitter. "There's other types of non-pain, medical symptoms, like shortness of breath and itching and nausea. But there's also emotional suffering." 

"I want people to want to sit by my bedside, I want people to put their hand on my shoulders or to hold my hand. I don't want to be seen as an object."

Such as anxiety, depression, even social isolation, which can come with serious, end-of-life illness. There's also spiritual suffering, said Zitter, and that is another component of suffering that needs tending to.

"The spirit is in some ways, and it's hard to imagine an ICU doctor saying this, but I think the spirit is often even more important than the corporeal body," Zitter told me.

Even though there is a percentage of people who don't believe in a God, she said, they still describe themselves as spiritual beings. And that idea, that belief that we are more than just our physical body, is what perhaps sets Zitter apart in terms of how she views her work.

Caring for the Soul Body

For the last 12 years, Zitter has been mentored by a chaplain at the hospital where she works. Zitter said the work she's done with her mentor "has made me realize how incredibly important it is for us to understand what each person's spiritual composition is, to understand what's spiritually most meaningful and important to an individual person, so that we can start to honor it and witness it and acknowledge it."

Because, she said, every patient with an end-of-life illness endures some degree of spiritual suffering. But when the spirit is tended to, Zitter said, she has witnessed a profoundly improved sense of well-being.

"I feel that I have really learned more and more how to be the doctor, the healer, that I that I came here to be."

The work Zitter does requires empathy and introspection.

"It's like anything: Do unto others: What would I want when I'm reaching my final days? I want people to really see me as a human being not just as a dying body," she said. "I want people to want to sit by my bedside. I want people to put their hand on my shoulders or to hold my hand. I don't want to be seen as an object."

Those realizations, however, were nurtured over time — even Zitter acknowledged that in her early days as an ICU doctor, she saw people as "collections of organs and  procedures." And perhaps that's how some in the medical field survive. 

But over time, Zitter felt compelled to sit with, and really be present with, the terminally ill and dying — and remember that her patients are human beings.

"And in thinking that, and behaving differently towards my patients and really being curious about them as people and showing them that I care, and [that] I don't want them to suffer, I feel that I have really learned more and more how to be the doctor, the healer, that I that I came here to be," she said.

Caregiver: A Love Story

Recently, Zitter's work has shifted to the family caregivers who often make tremendous sacrifices to tend to their dying loved ones. It's a facet of death and dying that Zitter beautifully illustrated in her latest documentary, "Caregiver: A Love Story.

The film follows Bambi and her husband Rick. Bambi decides to forgo further treatment for her cancer and chooses to die at home. Rick leaves his job to become her primary caregiver while also caring for his very young granddaughter.

"I thought [Bambi's] husband Rick would be a secondary character — the guy who opens the door for the hospice nurse," Zitter explained. "I didn't realize that it was his story that would be the more important one to tell. And the fact that a palliative care doctor was not aware of the acuity of this crisis speaks volumes about this silent epidemic."

"We don't want to believe that death is going to happen. And we certainly don't want to believe that death is going to be hard."

Sadly, Rick's story is not unique. Many family caregivers take on the responsibility of providing hands-on caregiving only to find the work exhausting, spiritually gut-wrenching and physically grueling.

And like Rick, caregivers often leave their jobs to provide this kind of care, leaving them financially vulnerable.

Zitter said we need to start talking more about this stage of life. "We don't want to believe that death is going to happen," she noted. "And we certainly don't want to believe that death is going to be hard. And as you now know, death can be very hard and it can be very hard for the patient, and it can be very, very hard for the family members who are there to support them."

It's why so many people are on what she calls "the end of life conveyor belt, which is this constant addition of more and more machinery to support the organs as they fail, you have to have thought this through in advance."

Zitter views it as a rising public health crisis. "That's why there are more and more people in long-term acute care facilities attached to machines and dying on machines," she said.

So advance care planning around end-of-life preferences is critical.

Of course, that means talking about dying and death — more than once or twice. Rather, it should be an ongoing conversation because as viewers of Zitter's film learn, there are very few safety nets, even with programs like hospice in place.

"The fact is, there are still things that need to be thought about and planned for; specifically, the caregiver is going to get exhausted," she explained. "You know, the average caregiver is doing this for four-and-a-half years. Rick, in the film, only did it for nine weeks, and he became financially depleted and physically exhausted. He had so many responsibilities and he couldn't keep up. This is a very common phenomenon in our country."

Solutions aren't easy, but as the film achingly illustrates, something will have to give. Caregiving can be deadly, and yet our society relies heavily on the free labor of family caregivers, even if it comes at the expense of their physical, financial and spiritual well-being.

Two Questions About Aging for Dr. Jessica Zitter

If you could change one thing about aging in America, what would it be?

As our population ages and families shrink, fewer and fewer people are around to care for the rising number of elders who need care. These caregivers are doing one of the hardest jobs without pay, training or support. It's not sustainable. I believe it's past time to honor our elders by supporting those who are doing the important work of caring for them. 

How has the COVID-19 pandemic changed your perspective on aging?

COVID has shown us the urgency of putting a social safety net in place to support the family caregivers who are struggling to care for their loved ones at home. Every one of us will be impacted by the rising public health crisis of family caregiver burden, and this pandemic has made it crystal clear that we have no choice but to solve it.

Mary Daniel

Before March 11, 2020, Mary Daniel faithfully visited her husband, Steve, every day at his assisted living facility in Florida. Steve was living with Alzheimer's disease. Then, one day, Daniel found herself, along with thousands of family caregivers across the country, shut out of her husband's facility due to the coronavirus pandemic.

Unable to visit Steve, she started making noise. Lots of it.

"And I started reaching out to the governor and anybody else who would listen. I got some local news coverage in Jacksonville about the isolation story and what it was doing for dementia patients, like Steve," she explained. "It got the attention of the corporate office of my husband's facility and they offered me a part-time job so that I could get into the facility. I started my first shift on July 3rd as a part-time dishwasher at his facility. I was able to see him that day after a hundred and fourteen days."

A person wearing a face mask and gloves standing in a dish pit doing dishes. Next Avenue
Mary Daniel, founder of Caregivers for Compromise, wants to make sure families and loved ones in long-term care never have to endure another shutdown  |  Credit: Courtesy of Mary Daniel

After that, Daniel started getting calls and emails from people across the country who were prevented from visiting their loved ones. 

"And I realized very quickly that I needed to find a way to bring us together so that we could all support each other and work together for change," she explained. "Within forty-eight hours of me starting my first shift, we started working on Caregivers for Compromise."

Caregivers for Compromise is a Facebook group with more than 14,000 members. 

Daniel created state-specific Facebook groups so caregivers struggling to gain access to their loved ones could connect and come up with solutions to what was quickly becoming a devastating crisis. In 2020, COVID-19 killed roughly a third of nursing home residents. Many of those residents died alone due to the lockdown. 

It was a fear that plagued Daniel.

"I just knew that my husband needed me. And I knew that I had to be there for him. I told him on the the day that the doctor said 'you have Alzheimer's,' I promised him on that day that I would never leave him alone, that I would walk with him every step of the way," she recalled.

Her promise has inspired Daniel to create an army of caregivers. 

She talked to Next Avenue about her journey and how she is teaching caregivers to find their voice so they can advocate for their loved ones in long term care:

A lot of people are intimidated to speak up, call their local lawmakers or simply say 'no.' Talk to me about the importance of learning how to become an advocate in order to push back against a long-term care system that can be confusing and overwhelming.

I use the term 'boldly advocate,' that's been our number one lesson to teach caregivers: Don't be afraid.

You have the right to have a voice, you have a right to have that voice heard. And when you are an educated, well-spoken person who understands what's happening, it's really about the personal stories.

And that's one of the things that we stress: When we speak to politicians, we want them to see and hear our stories. We want them to see pictures, we want them to see exactly what this has looked like — and in so many instances, it has not been pretty. 

"We are absolutely not finished, we have to get laws in place to be certain that this never happens again."

We're in the process of printing a book called 'Protecting Them to Death.' It's a book of stories from every single state. It is a hardback book that we will send and deliver to every single congressman [and] every single senator, again, so that they can [read] the personal stories [and see] the pictures of what's happening, not only across the United States, but more specifically in their state. 

What we're also then doing is turning to the state level: In Texas, for example, they had a very successful bid with a new bill that was just enacted September 1st. They actually have an amendment to their constitution that will be voted on November 2nd [voters approved that measure] that makes essential caregivers a part of the Constitution, meaning the law can never be rescinded.

An essential caregiver designation allows a friend or family member help with activities of daily living on a more frequent basis as long as they comply with screening and masking.

What would you tell someone who is starting out on this journey, in this climate of COVID. How would you guide them? 

Number one, my mantra has been for a very long time, educate yourself so that you can educate them. And "them" is the facilities, the doctors, the legislators that you may come in contact with. Know what the guidelines are, know what the rules are — and we provide that information.

There's not only us, The National Consumer Voice (an advocacy organization) has a great deal of resources available. We cite them on our website quite a bit, because [they have] such great information — take the time to educate yourself. 

The second thing that I would say, take this journey one day at a time. You can't look too far ahead. You certainly can't look back — all I can deal with is today. What can I do today to be with Steve, to help Steve, to be sure that Steve is taken care of? And when I do that today, I'll worry about tomorrow — but one step at a time. 

And I think the last, and a very important, thing to do is to be sure to take care of yourself. You can't pour from a cup that is empty.

"Isolation is not the answer. We know that COVID kills, but we know that isolation kills too. And we're just not going to let that happen again."

Although things have settled someone in terms of families being allowed back into facilities, what's next for you and for Caregivers for Compromise? After all, I imagine this is not the journey you thought you'd be on two years ago, but you are leading a movement.  

The first night I had a friend who was helping me start all the Facebook groups for each individual state and I got a little weepy. She said to me, and I'll never forget it, she said, 'Mary, God has placed you here for a reason.' And I believe it. I just truly believe that. I've really worked my whole career to be here too. I'm a patient advocate by trade, it's what I do for a living. I specialize in the medical billing world [and] learning not to take 'no' for an answer comes along with that. That has been extremely helpful for me, during this last year as we fought to get back into these facilities. 

We are absolutely not finished, we have to get laws in place to be certain that this never happens again. We understand why the lockdown happened, we understand that it was done with the best of intentions. But the fact is, it didn't work. It did not keep COVID out of the facilities, and it did not keep people from dying.

There was a better way and 'essential caregiver designation' is a better way than the lockdown. We follow all of the same guidelines as the staff. But isolation is not the answer. We know that COVID kills, but we know that isolation kills, too. And we're just not going to let that happen again. 

Edited for length and clarity.

Two Questions About Aging for Mary Daniel

If you could change one thing about aging in America, what would it be?

I would like to see more resources for families that are trying their best to provide care for a loved one. In-home care and long-term care can be so expensive that families' financial futures are ruined while taking care of a loved one. There needs to be some middle ground between all self-pay and full Medicaid coverage for services, so families don't have to go broke before they can get assistance. 

How has the COVID-19 pandemic changed your perspective on aging?

The isolation of our elderly population due to the COVID-19 pandemic has shown me that there are worse things for our aging than dying. Being left alone with no understanding of 'why,' is cruel and unnecessary. Families and long-term care facilities must work together to ensure that we never isolate and neglect our loved ones again.

Kathy Ritchie
Kathy Ritchiehas spent more than a decade talking about aging issues, first as a caregiver for her own mother who had frontotemporal degeneration; then as a reporter at the NPR-member station in Phoenix. She was the former Health and Caregiving editor at Next Avenue and, most recently, oversaw the series, "Aging with Disabilities in America." Kathy's personal experience has given her a professional purpose, and over the years she has reported on the myriad challenges and experiences of older Americans. Many of her stories have aired on NPR's national magazine show, Here & Now. She also produced a four-part podcast about life after dementia. Read More
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