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Game Plan

By Mark Morris

James Ferry, certified aging life care manager at Coaching Caregivers Inc.

James Ferry, certified aging life care manager at Coaching Caregivers Inc.

Many adults take on the role of caregiver for an aging parent, but few are prepared for what’s actually involved in taking on that all-important assignment.

What starts out as a trip to the grocery store or a ride to the doctor’s office can, and very often does, become overwhelming when the parent has a medical crisis or other event where their needs suddenly change.

“It often begins with a hospitalization,” said James Ferry, who manages Coaching Caregivers Inc. in Northampton. “Let’s say your mom is admitted for a urinary-tract infection. After a short stay at a skilled-nursing facility, your family is told that she can no longer stay home alone.”

If the family is local, he went on, an adult child, usually a daughter, typically tries to be the caregiver. But as she tries to balance her mother’s care needs with holding down a job and taking care of her own family, burnout inevitably sets in.

And that, unfortunately, is the time when many families usually reach out for help.

“They come to me when they’re exasperated,” said Ferry, a certified aging life care manager with more than 25 years of experience and an advanced degree in social work. He sees his role as someone who helps navigate the complexities of elder care to relieve the family’s burden and develop a course of action that provides a quality life for the elder parent.

He’d rather get involved before people become exasperated, but human nature often precludes that from happening. Regardless of when he does get involved, the goal is the same — to come up with a care plan that works for both the elder parent and the caregiver.

It’s an art and a science, he says, that brings many rewards.

The Big Picture

In order to develop a plan, Ferry starts by doing an assessment.

“I’ll visit the elder in their home and ask them to tell me their family story,” he explained. “At the same time, I’m listening for what’s going on emotionally and with their mental processing. Then we might take a tour around the home to see how they maneuver in that environment, how safe it is, and how realistic is it for them to remain in the home.”

After the assessment, Ferry develops a care plan to best meet the elder’s needs. The plan can range from a few basic services on an as-needed basis to a more substantial plan that provides daily services.

Arranging for help with even simple tasks can provide great relief for the family, he added. “There’s a big difference between having nothing and having a person in place for grocery shopping, doctor’s appointments, or just to walk the dog.”

For more intensive needs, Ferry will often recommend a plan that functions like assisted living, but takes place in the person’s home and still allows for family to be involved.

He refers to this type of plan as a “split-shift approach” in which a caregiver arrives in the morning around 8 a.m. to help the elder client with bathing, getting dressed, and eating breakfast. Then the caregiver will make lunch, clean up after lunch, and leave. The client has the afternoon to themselves to watch TV, catch up with friends, or take a nap. The elder can be alone during this time because they will have a lifeline-type device in the event of an emergency.

A second caregiver arrives around 5 p.m. to prepare dinner, do the cleanup afterward, and help get the client get ready for bed.

“With a plan like this, you can cover the whole day with only seven or eight hours of care,” he explained. “This approach is much less expensive than an assisted-living facility and provides a much higher quality of life for the client.”

This type of plan reflects the current trend of ‘aging in place,’ where services that were once provided in a facility are now delivered in the home. In recent years, home-healthcare agencies have seen strong growth because their services can cost much less than an admission to a long-term-care facility. In addition, studies have shown that people enjoy better quality of life when they can stay in their home and follow their own schedule.

In addition to health concerns, caring for an aging parent also involves financial, legal, and other issues. During this time, family dynamics can bring out a whole new level of stress. “If a family member has a resource agenda, such as the parent’s house or some cash, they could potentially subvert a plan of care because they see it as less going to them.”

Ferry’s role in these situations, he explained, is to be a facilitator who helps the family reach common ground and remind everyone of what’s best for their parent.

Age-old Concerns

The need for the services provided by Coaching Caregivers and similar businesses is sure to increase as more people than ever before are living longer in retirement. According to the U.S. Census Bureau, a 65-year-old couple has a 50% chance of one of them living to age 93, and a 20% chance that one of them will reach age 97.

“I work with a lot of people in their 90s who need some help, but clearly do not need a nursing home,” Ferry said, noting that, 25 years ago, far fewer people lived past age 90.

When an aging parent is living a vital and independent life, it’s easy to avoid an elder-care discussion, but he said that’s the time to do it. As difficult as it is to start the conversation with a healthy parent, Ferry said it’s much easier than waiting for a crisis when significant decisions about care must be made under stress.

“When people are desperate for help, they don’t have the capacity to shop around. Instead, they listen to the first person who can offer a solution,” he noted, which may not be in the elder’s best interest.

Ferry counsels people to ask many questions before selecting a caregiver. “Try to get a sense of their reputation. Are they looking out for your parent, or are they steering you to the business they are in?”

There are many professionals who consider themselves care managers, he added, but may represent the interests of an agency or an insurance company. His advice, simply put, is to look for someone who will objectively represent the client’s interests. Once a care plan is in place, he explained, he then takes on the role of ‘consumer advocate’ for the client to make sure they get the services they were promised.

“Professionals like me have no bias for a particular course of action,” he told BusinessWest. “I have relationships with many home-care and assisted-living agencies, as well as other professionals I can recommend. My only interest is what’s best for my individual client.”

Business of Aging

One Step at a Time

Scenes like this one — from the 20th Rays of Hope Walk five years ago — are played out each October in Forest Park.

Scenes like this one — from the 20th Rays of Hope Walk five years ago — are played out each October in Forest Park.

Lucy Giuggio Carvalho is a tough person to say no to, as Kathy Tobin found out one afternoon 25 years ago.

“I was a health reporter for WGGB, and I was in the lobby of Baystate Medical Center to do a story,” Tobin told BusinessWest. “And this little petite thing comes walking across the lobby, points at me, and says, ‘I had a dream about you, and you’re going to help me.’ And that’s how I met Lucy.”

Carvalho — then a nurse at Baystate — had been diagnosed with breast cancer some time earlier, and, inspired by an AIDS fund-raising walk she had recently participated in, had a vision to bring something like that to Western Mass. to raise money and awareness around the cause of breast-cancer research and treatment.

A quarter-century later, it’s safe to say that Carvalho’s creation — known as the Rays of Hope Walk & Run Toward the Cure of Breast Cancer — has done just that, and a whole lot more.

As it turned out, Tobin did help her; WGGB became the media sponsor of the first Rays of Hope walk in 1994, and Tobin spearheaded a half-hour documentary special to bring attention to the cause.

“She had this overwhelming desire, not just to do this walk, but to change the way we treat breast cancer,” said Tobin, who has come full circle since then, now serving as director of Annual Giving and Events for Baystate Health, which has long overseen the Rays of Hope organization.

The first Rays of Hope event attracted some 500 walkers and raised $50,000. Today, it has raised more than $14.2 million and attracts about 24,000 walkers and runners each October. This year’s annual fundraiser, slated for Oct. 21, will once again step off from Temple Beth El on Dickinson Street in Springfield and wind through and around Forest Park.

As usual, all money raised remains local, administered by the Baystate Health Foundation to assist patients and their families affected by breast cancer. Funds support research, treatment, breast-health programs, outreach and education, and the purchase of state-of-the art equipment, as well as providing grants to various community programs throughout Western Mass. 

“Sometimes I can’t believe all that’s been accomplished,” Carvalho said. “I never would have believed we could raise the amount of money we raised; $14.2 million over the last 25 years is a lot of money, and we can do a lot of things with it — and we have. I’m really proud of Rays of Hope and all we’ve accomplished.”

It wouldn’t have happened, she added, without the continuing, loyal support from the community. “We’ve mostly accomplished what we have through individual walkers and local organizations that have supported Rays of Hope from the beginning. Most of the agencies that got involved in the early years are still involved, as well as the walkers; they come back year after year.”

Carvalho said she created Rays of Hope with a very specific vision.

“I wanted to help people that were going through breast-cancer treatment, to help them navigate the healthcare system,” she explained. “I’d found it difficult, and it was my motivation to make it easier for other people, seeing that I had such a hard time. And I wanted the money to stay local, too. That was really important for me.”

Beyond the critical funding, however, she has long recognized the importance of Rays of Hope as a bonding agent for individuals facing one of life’s most daunting challenges, and the people who love them.

Lucy Carvalho (left) and Kathy Tobin at the first Rays of Hope walk in 1994.

Lucy Carvalho (left) and Kathy Tobin at the first Rays of Hope walk in 1994.

“I think the event is very unique in that, when you’re there, it feels like there’s a big hug all around you, and that people really care about you. It’s just uplifting to be involved, and it’s something to look forward to, something that has become a tradition.”

Tobin also compared the event to a massive hug — one with a great deal of feeling behind it. “We have such a support system in place. It’s like a sorority — but I shouldn’t say sorority, because men are diagnosed, too. It’s just a network of people who care.”

Changing Times

Dr. Grace Makari-Judson has witnessed the evolution of Rays of Hope from a clinical standpoint; she was appointed medical director of Baystate’s breast program at the same time Carvalho was organizing her first walk.

“Lucy’s initial mission for Rays of Hope was not only helping breast-cancer research, but trying to provide coordinated care … a holistic approach,” Makari-Judson said — in other words, to make the journey easier for others than it was for her.

“Thinking back, it’s amazing how much we’ve been able to do with addressing those goals,” Makari-Judson went on. “Twenty-five years ago, women were having mammograms in the hospital, sharing the same waiting room with people who needed X-rays or had pneumonia. Biopsies were done in the operating room, and women got unnecessary scars.

“Today,” she went on, “we have a dedicated breast center where women go for mammograms and other breast imaging. We have needle core biopsy, which is done at the breast center and is a less invasive approach, so women go home with a Band-Aid instead of a scar. That’s the minimally invasive approach started in the mid-’90s and has since become the standard of care. It’s the whole philosophy of less is more.”

Other examples are sentinel node biopsy, introduced at Baystate in 1996, and radiactive seed localization, started in 2010. Both are minimally invasive procedures that Baystate pioneered in the region that have since become national standards of care, Makari-Judson said — and both benefited from Rays of Hope funding.

Meanwhile, Carvalho’s vision of more coordinated care has become reality as well, the doctor said.

Dr. Grace Makari-Judson

Dr. Grace Makari-Judson

“Twenty-five years ago, physicians were seeing patients all in a row — the surgeon, then the medical oncologist, then a radiation oncologist,” she explained. “And sometimes that would leave women with conflicting information. In today’s approach, we have something called a multi-disciplinary breast conference, where we get all the experts together to review radiology images and pathologist slides and come to a consensus recommendation. That has had a positive impact on care and really enhances our mission.”

It’s a model, she said, that started to coalesce around the time Rays of Hope was being launched, and it eventually spread to all Baystate hospitals and eventually became the model of care regionally and nationally.

“Everything about cancer has come such a long way,” Tobin agreed. “Women don’t have to wait days for biopsy results; they don’t necessarily have to have drastic surgeries. Everything about treatment has changed.”

“Twenty-five years ago, women were having mammograms in the hospital, sharing the same waiting room with people who needed X-rays or had pneumonia. Biopsies were done in the operating room, and women got unnecessary scars.”

Then there’s the Rays of Hope Center for Breast Cancer Research, launched in 2011 with the help of a $1.5 million Rays of Hope grant. The center brings together a group of scientists with diverse areas of expertise who work toward reducing the impact of breast cancer — for instance, understanding how obesity, diabetes, and environmental exposures interact to alter breast-cancer risk and prognosis.

It’s important work, and not something to be taken for granted, Tobin said, adding that many events like Rays of Hope eventually peter out — Avon’s national fundraiser for breast cancer isn’t continuing this year, for example — and such events require a lot of work and diligence to thrive and grow.

“Sometimes the fundraising becomes secondary,” she added. “After a while, people want to be a part of it, but they don’t remember the fundraising piece, and that’s critical to our survival. We’re trying to drive home the point that, yes, we need your involvement, but we also need your fundraising, because that’s what makes the programs happen.”

And it’s not just Baystate programs that benefit, Tobin added. Other local organizations, like Cancer House of Hope, also rely on support from Rays of Hope.

“We’re always getting new people involved,” Carvalho said. “Unfortunately, it’s often because they have breast cancer or someone close to them has breast cancer — but that passion keeps us going, and keeps us a vibrant organization. I think we’re always going to walk until there’s a cure, and we don’t need to walk anymore.”

Personal Impact

Denise Jordan was first introduced to Rays of Hope by her late friend, Tracy Whitley, and she joined its advisory board in 2008. A decade later, she’s chairing the 25th interation of the event, dedicating her service to Whitley, who succumbed to the disease last year.

Jordan calls herself an ambassador for Rays of Hope, making public and media appearances and encouraging people to take part in the Oct. 21 walk. She hasn’t found it to be a hard sell.

“I think, as long as people are affected by breast cancer, there will always be a willingness to participate in an initiative whose main focus is finding a cure,” she told BusinessWest. “Also, unlike a lot of organizations, when you give money to Rays of Hope, you can actually say, ‘the money I gave went to this person or that person; I know that because all the money stays right here in the region.’”

During her time as chief of staff for the city of Springfield, Jordan helped establish Pink & Denim Days, when city employees took up that dress code in exchange for donations to Rays of Hope. “It was really an easy ask,” she said. “Folks were very enthusiastic.”

Rays of Hope has proven to be a meaningful event for both survivors and supporters, as well as an educational experience for all ages.

Rays of Hope has proven to be a meaningful event for both survivors and supporters, as well as an educational experience for all ages.

So was Jordan, when she was asked to chair the event this year, even though she had some reservations about the time commitment. But when she thought about her Whitley, and the way she not only battled cancer but became a strong advocate for survivors, it wasn’t a hard decision.

“There’s going to be some special things happening that day,” she said of this year’s walk. “I’m pushing to get more people involved. We’ve had participants in the past who have missed a couple walks, but, this being the 25th anniversary, we’re hoping to bring a lot of folks back to the walk.”

Tobin agreed. “We’re adding some exciting elements. We’re going to tell the story of the progress we’ve made and celebrate some joyous stories of beating the disease — and remember those we’ve lost. I think there will be some special moments.”

Having been active in the walk for 25 years, Tobin has lots of stories, but likes to recount one from the event’s first year. Her 4-year-old son attended and took in the speeches, and as he settled into his car seat for the ride home, he said, ‘I’m so glad I’m not a girl.’

“My feminist self practically slammed on the brakes,” she laughed. But when she asked why, “he said, ‘because I can never get breast cancer.’

“The earnestness of this little boy took my breath away,” she continued. “I realized in that moment the impact this walk was having, and could have, if someone that young understood the seriousness of breast cancer.”

The fact that he assumed it was a girl’s disease isn’t odd; many adults think the same thing, and Rays of Hope has created plenty of teaching moments around that misconception as well.

In short, it’s hard to overestimate the impact this 25-year tradition has had on breast-cancer treatment, research, awareness, education — not to mention the giant hug of support that so many women (and men) need.

“Lucy had certainly given us a gift,” Tobin said. “She had done something incredible in that parking lot that day, and $14.2 million later, we’ve seen a lot of profound moments.”

Added Carvalho, “there’s a spirit at Rays of Hope, and I don’t know exactly how it came to be, but it’s real, and it’s powerful, and it’s heartwarming. That’s what I’m proud of — how the community has come together to make a difference.”

Joseph Bednar can be reached at [email protected]

Business of Aging

The Dream and the Journey

Officials take up ceremonial shovels during the groundbreaking for Hillside Residence on May 18.

Officials take up ceremonial shovels during the groundbreaking for Hillside Residence on May 18.

During their long and sometimes frustrating quest to secure funding for what would eventually be Hillside Residence, the Sisters of Providence never stopped believing the project’s model — blending healthcare and affordable senior housing — was worth fighting for. Now that the development is under way, they are even firmer in that conviction.

As she talked about the long and persistently frustrating quest to secure funding for the project that would come to be called Hillside Residence, Sister Kathleen Popko summed things up by recalling sentiments she expressed at the time — words that blended diplomacy, poignancy, and even a little sarcasm.

“I would tell people, ‘though our progress is slow … I’m making a lot of friends locally, regionally, and nationally,’” she recalled, with a phrase that hinted broadly at how many doors, in a proverbial sense, were knocked on by the Sisters of Providence, which Popko leads as president, as they sought to take a dream off the drawing board.

And also at how important it was to be making those friends.

Indeed, while making all those introductions, Sr. Popko and the other Sisters of Providence were gaining even more resolve as well. And it stemmed from the firm conviction that their unique model for Hillside Residence — the intersection of healthcare and affordable elder housing, if you will — was worth fighting for.

And fight they did, for the better part of eight years, a struggle that was ultimately successful and celebrated, as much as the project itself was, at an elabotate groundbreaking ceremony on May 18.

Fittingly, Sr. Popko, during her turn at the podium that morning, borrowed from St. Francis of Assisi to convey what it took to make that moment a reality.

“The journey is essential to the dream,” she said, invoking St. Francis’s famous quote. “With hindsight, I can see the truth and wisdom in that statement. Our eight-year journey to this moment expanded and sharpened our vision, tested our determination, enlarged our circle of friends, and committed supporters to this initiative. Let us work now to realize the dream.”

That dream, as noted, is to bring innovative, health-integrated, affordable elder housing to a region, and a city (West Springfield) where there is an acknowledged need for it, said Popko.

Elaborating, she said Hillside Residence, a demonstration project, will create 36 affordable rental units to frail elders, who will receive healthcare services from the Mercy LIFE PACE program (program for all-inclusive care for the elderly). Both programs are situated on the same 27-acre campus that was formerly home to Brightside for Families and Children.

And the expectation is that this $10 million project will demonstrate that this is an effective model for bringing needed services to what has historically been an underserved segment of the population, she told BusinessWest, adding that there have attempts to create affordable senior housing, but not in the same, holistic environment that Hillside Residence will create.

“This is innovative in that it will keep frail elders independent,” she explained. “They’ll live in an independent-living facility, but they’ll be supported in a way, on the same campus, that they can access a tremendous array of services and at the same time go home and live independently.”

For this issue, BusinessWest looks at both the dream and the journey that made Hillside Residence a reality — and why both are worth celebrating.

The Big Picture

When Brightside’s closing was announced in 2009, it left the Sisters of Providence with what amounted to a 27-acre canvas that could be filled in any number of ways, said Sr. Popko.

An architect’s rendering of Hillside Residence.

An architect’s rendering of Hillside Residence.

What made the most sense, she said, was to use the land and existing buildings, part of what’s known collectively as the Hillside at Providence, to help create a broad array of senior-living and senior-care facilities that would complement each other and meet recognized needs within the community.

This was a process that actually started with the conversion of the former Sisters of Providence Mother House into an independent-living and retirement community known as Providence Place in 1999, and it continued with the creation of Mary’s Meadow at Providence, a complex on the Providence Place campus comprised of 10-person houses designed to give elders a place to live in comfort equal to that of a private home. This was the first ‘small-home’ facility, as they have come to be called, in the Bay State.

The process of filling in the canvas at Brightside was accelerated with the creation of Mercy LIFE, a PACE program operated by Mercy Medical Center that provides tightly coordinated care and support designed to help seniors continue to live safely at home and avoid moving into a nursing home, she said.

The 25,000-square-foot facility, located within what was the main administration building for Brightside, includes everything from a medical clinic to a rehab gym to gathering places.

Meanwhile, the remainder of that 78,000-square-foot administration building has been devoted to reuses ranging from hospice care to a home for elder-focused programs administered by the Center for Human Development.

What emerged as a missing piece in the puzzle — and the next dream for the Sisters of Providence — was an affordable senior-living facility, one where the residents could take full advantage of the many programs and services at Mercy LIFE.

Talks for such a facility — and thus that ‘journey’ Sr. Popko described — began in 2011, she said, adding that it took the better of eight years (and work with four different mayors of West Springfield) to secure everything from the proper zoning to the needed funding.

And the latter part of the equation became more difficult when, in 2012, HUD, the U.S. Department of Housing and Urban Development, ceased funding for so-called ‘Section 202’ projects, those aimed at expanding the supply of affordable housing with supportive services for the elderly.

“So we had to take a step back and try to look for alternative sources of funding,” said Sr. Popko. “That included private sources and looking at federal grants and so forth.

“And they really weren’t forthcoming at the time,” she went on. “We visited many legislators and congressmen, and we brought in experts to come in and talk about some other concepts we were thinking about. We had people come out here, we visited state offices … we talked to so many people.”

State Elder Affairs Secretary Alice Bonner

State Elder Affairs Secretary Alice Bonner addresses those assembled at the May 18 groundbreaking for Hillside Residence.

Like she said, progress was slow, but she and others were making acquaintances.

“Everybody was very encouraging — they kept saying, ‘go ahead, yes, do this,’” she recalled, adding that the words of encouragement were not backed up with checks.

But the sisters pressed on. They succeeded in getting the property rezoned, and eventually started making progress on funding, thanks in part to a timely visit to Mary’s Meadow by state Elder Affairs Secretary Alice Bonner in April 2016.

“I said, ‘I just need minutes of your time,’” Sr. Popko recalled, adding that she used it to give the secretary a brief overview of the Hillside Residence project and hand her a concept paper of the proposal.

Bonner put the paper in her backpack, but eventually took it out, read it, and became sufficiently intrigued to call Sr. Popko and arrange a meeting to discuss the matter.

“We brainstormed about what could happen,” she recalled, “and also about how we could remove the silos between housing and health services and bring the two closer together.”

Eventually, the sisters were able to cobble funds together for a number of state and federal sources, including the Housing Stabilization Fund, the National Housing Trust Fund, the Housing Innovation Fund program, and the Mass. Rental Voucher Program. Also, private funding was provided by the Sisters of Providence and the Harry and Jeanette Weinberg Foundation, and the West Springfield Community Preservation Committee also chipped in toward the price tag, currently pegged at $9.65 million.

The project will focus on serving individuals who are 62 and older, with incomes at 50% of the area median income (AMI) or lower, and whose healthcare needs and housing instability can be optimally addressed by the program, said Sr. Popko, adding that, because the project has secured commitment of state rental subsidies, Hillside Residence participants’ housing costs will be capped at 30% of their income.

And while meeting an immediate need for those twin services — housing and healthcare — the project will be adding to the base of research on the efficiency and effectiveness of the integration of PACE and affordable elder housing.

“This data will assist policy makers, housing developers and managers, and healthcare providers better understand the benefits and operational challenges of an integrated PACE housing model,” said Sr. Popko.

The Next Chapter

As she talked about Hillside Residence, Sr. Popko noted that there is still more of the former Brightside canvas to be filled in.

Indeed, there are several cottages on the property that are roughly 9,000 square feet in size and could be transformed into more housing for the elderly.

“We could have another 50 units on this site, but it will be even more difficult to attain funding for that,” she said, adding that those cottages comprise what would be phase 3 of the work at the Hillside at Providence and the proverbial ‘next dream.’

As for the one currently coming to fruition, she said, again, that St. Francis of Assisi was right.

“Our journey of eight years was probably essential for realizing this dream,” she said in conclusion. “Because we’ve brought together people from the state level, we’ve brought together funders, legislators, and people within the community of West Springfield, to a point where they all want this to happen. That’s what has brought us to this moment.”

That, and a firm determination never to let the dream die.

George O’Brien can be reached at [email protected]

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