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Audrey Larson, of Livingston, has served as LTCO Volunteer Advocate at Complete Care Summit Ridge for about 10 years. She looks back at her experience with the residents.
As a Physical Therapist I am familiar with many of the challenges residents face, so advocacy is a natural extension of my career. My goal is to elevate the quality of life of the residents and to include the staff in that endeavor, even if it means providing strawberry ice cream with every meal, as recently requested by someone near end-of-life.
Residents and families fear retribution if they complain. Especially during the extended period of COVID isolation, residents were completely dependent upon their caregivers. As a third party advocate, I was able to address some of their concerns, anonymously if needed. (The facility recently opened visitation following NJ Department of Health guidelines.)
Recently, the LTCO donated three iPads to my facility with the hope that residents could visually communicate more with families, each other, and myself.
I recognize that many residents do not have family at all, and rely for their socialization on those they befriend at their facility. When confined to their rooms, those residents were particularly isolated. My plan was use the iPads to connect those residents with their friends, as well as with me.
Two resident friends were able to resume playing chess, via FaceTime, using personal physical boards.
We have held monthly Resident Council meetings also by FaceTime, addressing each and every concern residents express, whether it be disputes about their Care Plan, getting an earlier breakfast or a desire for candy! There is always a solution when the residents trust me enough to speak frankly in a safe, confidential environment.
Over the years, I have developed strong working relationships with the staff at all levels, and they often assist in problem solving. We all have the same goal: to serve the residents.
I have also referred several residents to the Twilight Wish Foundation to fulfill whatever desires they could not accomplish alone. Each wish has been personal and has led to “one of the best days of my life,” as one person said.
One recipient was a former electrician for a traveling carnival. He wished to spend a day with his carnival company, seeing all the new LED lighting on the rides and eating a full menu of carnival food.
Another missed contact with animals and had a birthday visit to the Turtleback Zoo, personally led by a zoo educator with behind-the-scenes encounters with goats, wallabies and her favorite African penguin, Aurora. Her joy was immeasurable.
Over the last 10 years, residents and families have frequently expressed their gratitude. Hopefully, my time is well-spent, improving the lives of my residents, one at a time.
Karen Thompson has spent 12 years assisting hundreds of nursing home residents as a LTCO Volunteer Advocate at Courthouse Center in Cape May.
Like most Volunteer Advocates, she deals with complaints about food, or missing items, or residents feeling disrespected or dismissed by often overworked LTC staff.
In these instances, Karen is a fierce advocate for her residents.
This should come as no surprise, because Karen dedicated her entire professional career to helping vulnerable elderly citizens; first, as a certified nursing assistant in a nursing home and, later, as a home health aide.
Reflecting on her more than a decade experience as a Volunteer Advocate, some cases stand out in Karen’s memory.
A few years ago, she helped a veteran resident at Courthouse Center move to a veteran’s home. “He wanted a bed there…he would tell me this a lot,” she recalls. The management was resistant at first, but as an LTCO Volunteer Advocate, she persuaded them to fight on his behalf.
Sadly, she couldn’t be there the day he moved out: “He cried his head off when he left, because I wasn’t there to see it.”
While she missed this grateful resident’s last day, what brings her back year after year is seeing the satisfaction of residents who realize they are being taken seriously.
“When they just see me coming in the building, it makes a big difference. They get a big smile on their faces,” says Karen, herself a native of Cape May Courthouse. “They look for you. They know that you’re going to fight for them.”
In those early days, “I would sit down with the residents, talk to them and listen to their stories, learn about their life history. When they found out I was there to help them…when those problems started to get solved without retaliation from the management because of me, that’s when I started gaining their trust,” Karen says.
“They all have their different characters. They know what they want and what they don’t want.” Residents know that they can confide in her. She notes that when she attends a resident council meeting, someone will tell her “I want to talk to you before you leave.”
She fields the typical complaints from residents, for instance “No one’s answering my call bell.” “I don’t like the food.” “They’re short of help.” “I missed a shower one night because the aide didn’t show up.” They mention times where a nurse would raise her voice or talk inappropriately.
Karen works with the nursing home administration to address these concerns and doubles back with the resident on subsequent visits to ensure that any fixes that are put in place are sustained.
Residents with dementia or who are non-verbal pose a special challenge. “I try to just sit there with them and smile, hold their hand, just bring them some kind of comfort. If they look upset, I’ll talk to their aide about ways to make them more comfortable. You go back and you can see that staff followed your suggestions.”
Karen volunteers for the required four hours a week, but she times her visits carefully. “I don’t go at lunch; if they start talking, they’re going to stop eating.”
“I love helping people who depend on you,” she explains, noting that elderly people are especially vulnerable.
One of the high points of her tenure came when a grateful son of a resident wrote a letter to Janet Khanlian, then-Volunteer Advocate Coordinator for the region including Cape May.
“There was some growing concerns I had about my Mother’s personal care. Her hair was smelling, her teeth were not being brushed…it was not until Ms. Thompson got involved that results were achieved and conditions changed,” he said.
“I am very grateful to Ms. Thompson – She spoke up for my own mother when I was fearful or reluctant!”
“That meant a lot to me,” Karen says simply.
“Life in a nursing home can be very lonely and isolating and for some, frightening. I know it gives many people comfort to have a friend and advocate,” she says. To volunteer in this valuable role, call the LTCO Volunteer Advocate Program at (609) 826-5053 and by visiting the Volunteer Advocate Program webpage for more information.
For one talented resident, Eileen’s friendship took the form of a cardboard cylinder. Eileen tells the story: “In 2012, the year I became a volunteer advocate, I met a resident who was profoundly unhappy. She had been living in the long-term care facility for eight years and spent most days just lying in bed. While she had a number of health and mobility issues, it soon became apparent to me that she was an intelligent and creative woman who had never adjusted to life in a nursing home. When I would arrive for my visits, she would spend the first few minutes …. letting me know how angry she was. Most of the time, I would just listen. She always felt better after having the opportunity to vent.
“The resident didn't participate in activities – and had no desire to – but she did some crafts on her own. One day, I found her weaving with colorful yarn, using an improvised loom that she had fashioned out of a large styrofoam cup and bobby pins. When I asked her what she was making, she said "string bags". These were essentially small knit pouches that could hold loose change and other small items. Unfortunately, the styrofoam cups kept breaking, forcing her to start over. She was clearly frustrated and I felt very badly for her.
“When I got home that day, I looked around my home to see if I could find something that resembled a styrofoam cup but was sturdier. When I saw a Quaker Oats Oatmeal canister in my cabinet, I felt confident that this would make a durable loom. I brought the oatmeal container to the resident and she tried it out immediately. Happily, it worked beautifully!
“On my next visit, the resident greeted me with a smile and started telling me about all the string bags that she was making for the staff and other residents. Once word got around about the "string bag" lady, people were coming to her to place their orders.
“Soon, the Director of Recreation . . . offered to supply her with yarn. She also [featured her in] the facility's next monthly newsletter. The resident was thrilled and couldn't wait to show me the article when it was published,” recalls Eileen, who uses her string bag to store her stockings.
“As volunteer advocates, we see suffering that we can do little to alleviate, and that can be disheartening. Still, there is no limit to the ways in which all of us can touch the lives of residents in long-term care facilities. And it is remarkable how little it takes sometimes to spark joy in someone's life. In my situation, all it took was an empty cardboard oatmeal container,” Eileen says.
Lahkeisha Leach recently marked her first anniversary with the NJ LTCO Volunteer Advocate Program (VAP), assigned to Jefferson Health Care Center in Gloucester. “And I am SO happy I stuck with it. It’s one of the most fulfilling things I’ve ever done,” says the U.S. Air Force veteran.
As a Volunteer Advocate, the Lindenwold resident advocates for them by investigating and resolving complaints made by them or by others on their behalf. “Last fall, there was an issue whereby some residents with dementia were going into other residents' rooms and removing items,” she says. “Working with the staff, we were able to come up with solutions that addressed the stealing while also honoring the dignity of those residents suffering from dementia.”
Leach said she’s been blessed with an LTCO VAP regional coordinator, Janet Khanlian, who cares for the residents as much as she does. “Janet shares her wisdom with me when I need to talk about losing a resident, which was harder than I thought it would be,” Ms Leach says. “She reminds me to feel good about what I do when I feel like it’s not enough.”
When the virus began to affect the residents and staff and extreme isolation measures were put in place in the spring, Volunteer Advocates were cut off from their weekly in-person visits. The VAP distributed letters to the facilities on behalf of each volunteer, reassuring residents that the VAs would continue to be there for them. They encouraged advocates to maintain their weekly contacts.
“My residents and I began having weekly Zoom meetings in order to keep the lines of communication open. Through them, I’ve been able to keep a finger on the daily pulse of what’s going on at my assigned facility, and how everyone was handling this unexpected isolation,” she recalls.
“As with most facilities around the country, our residents were afraid and confused. Many were lonely, depressed, and even a bit angry.”
Leach became the most regular outside contact available to her resident council president and vice president. Neither of them have cell phones and cannot contact their families individually. Further, the facility has one tablet, which must be shared among residents for Zoom meetings.
Her relationship with her residents has only intensified during this time. “We’ve gone from only discussing residential issues to discussing life. Not only their fears and frustrations about the pandemic, but also life stories.”
“Most of my residents are talkers,” she laughed. “One resident named Pop used to talk about growing up in Philly as a baseball fan. He used to love seeing them play, and said the city was electric on game days. He passed in the fall. He was a super sweet guy and everyone loved him,” she says.
“Since I was a young child, I’ve always loved to sit at the feet of the elders in my family, listening to stories for hours. But I have no more living grandparents. So while my residents often tell me how grateful they are, I must say it’s been equally beneficial for me - even during this pandemic,” Leach says.
“They even give me advice about how to keep my dog and 4-year-old nephew occupied when I need to make a business call. Both dog and kiddo have made impromptu guest appearances during our meetings.”
Leach remembers asking her council president when she last got to speak with her family. “‘The last time I spoke with family was when you called,’ she answered. That was EVERYTHING for me because it meant that she no longer views me as just a volunteer, but rather as family.”
Ms. Leach is studying Addictions Counseling at Camden County College, with plans to study Psychology at Rutgers and eventually, to work with homeless female veterans. She was prompted to volunteer with the VAP after her young aunt died in 2016 from an aggressive form of cancer. Unhappy with the care she was receiving, Ms. Leach was searching the internet for patient advocates for people like her aunt. That’s how she found out about the LTCO and its need for volunteers.
At 39, I realize that I am one of the younger volunteers,” she said. “But I tell everyone about this program. I think if more people understood that this is not an obligation, but rather an opportunity, we would have many more volunteers. And from where I sit, I am just grateful to be one!”
When a nursing home resident approaches Volunteer Advocate Debbie McGowan needing help with a problem at County Arch nursing home in Pittstown, whether it be a food issue, need for physical therapy or being cold, she will involve them in the solution.
McGowan will say, "I appreciate you speaking to me. What would you like me to do: A, B or C? I don't do anything without your OK." She once asked a resident who presented hearing issues, "How would you like me to handle this? Can I ask someone about hearing aids?"
It's an approach she adopted as onetime supervisor of the Office of Victim Witness Advocacy, in the Somerset County Prosecutor's Office. She was drawn to the Volunteer Advocate job because "I love advocacy!" Her interest in older adults also reflects her experience caring for a mother with Alzheimer's. McGowan remembers reading about the LTCO Volunteer Advocate program and thinking this was something she'd like to do during retirement. The Whitehouse resident retired in February 2019, went for training in May 2019, and made her first VA visit that July 2019.
At County Arch (which saw 14 resident deaths and one staff death from COVID), she is able to visit two wings where residents can go into the hallways: the day room and the dining room. Besides the abovementioned problems, she will field concerns about dietary issues, noise concerns, leaky sinks, questions about treatment plans, and questions about residents' private funds. For the families she has spoken to, her service "has been a nice extra connection" between them and their loved ones.
During the lockdown, McGowan talked with residents via Zoom from last June through August. She met outdoors with them until it got too cold, at which point she returned to Zooming. She resumed indoor visits in December 2020 – and they readily came to her with their concerns.
"It was very difficult for them," McGowan said of the lockdown. "They were frightened. I remember one resident saying to me that she felt trapped. They were happy to have interaction with me once more, especially those that remembered me."
One gentlemen asked her about a friend on another wing of the facility. She checked with the activity director and was able to tell him that she was fine.
McGowan has participated in the LTCO office's Social Isolation Program iPad distribution, which has been going "wonderfully." The Activities Director uses two of the devices, and the Social Worker uses the third, mainly to conduct online meetings for residents with their families. Recently, the social worker and activities director took residents "shopping" virtually, via the iPads.
McGowan's outreach to local stores has yielded dividends. When the Office of the Long-Term Care Ombudsman donated three Tracfones and the original phone cards were used up, a local ShopRite donated three phone cards. She also approached the Kings Supermarket in Whitehouse when residents said they'd like to read recent newspapers. Since last June the store has donated two day-old papers every week.
"It's very rewarding and fun," she said of Volunteer Advocate work. "I enjoy the relationships I've built with residents and staff. It offers wonderful opportunities to make a difference."