Cancer Survivor as Mentor

Someone who serves as a trusted counselor or coach to someone less experienced is called a mentor. In the worlds of business, academics and science, professional mentors serve as practical guides or tutors to those entering the field. Adult mentors serve as engaged role models to children in clubs and organizations.

There’s a lesser known yet highly valued kind of mentor: one cancer survivor supporting another.

Cindy Sheridan Murphy is a cancer survivor and volunteer for CHD Cancer House of Hope in West Springfield. “I’ve been a cancer survivor for three years,” she said. “It’s my second bout with cancer and the first time I never sought out any support services, but I learned that no matter what stage you’re in, it’s important to seek that support. And, in my case, to provide it.”

Cindy facilitates the Breast Cancer Support Group at Cancer House of Hope. “It’s predominantly women,” she explained, “including those with a new diagnosis, some who recently finished their treatment, and quite a few who are three years out or even seven years out and feel they need the support. When people first come to Support Group with a cancer diagnosis, they walk in looking like a deer in headlights. When they see that it’s warm and inviting, they calm down a bit.”

Especially with first time participants, Cindy tries be both to comforting and realistic. “I want to welcome people and reassure them that it’s good they decided to come, but I’m not going to sugar coat it. Cancer stinks. If you’re going through treatment, the next six months to year are going to be tough. But you’ll get through it, and we will help you get through it.”

People who have finished their cancer treatment come to Support Group, too. “They may look good on the outside,” Cindy explained, “but they still may have aches and pains and some anxiety. In my role as facilitator, I get people to open up so we can share experiences, insights and resources. Cancer House of Hope has wonderful resources that help people cope and relax, and they’re all free for people with cancer.”

For many participants, Breast Cancer Support Group feels like family—if their family understood what it’s like to be living with cancer. But for some participants, Cindy’s involvement goes a step further. To some people, Cindy is a mentor.

Paula Horenstein of East Longmeadow is breast cancer survivor. “I went through 16 rounds of chemotherapy and 30 rounds of radiation,” Paula explained. “It was a long journey to say the least. When I finished treatments, I wondered what was next. My oncologist told me to just go out and live my life, but how do you live a life after so much has changed? I lost a good year from my cancer diagnosis to the end of my cancer treatments. I didn’t feel like the same person, and I didn’t have anyone close enough to me that had been through the journey that I was going through. I found myself looking for something, but I didn’t know what it was.”

Like most people, Paula learned about Cancer House of Hope by word of mouth. “Someone I worked with said a friend of hers had gone through cancer and had gone to the House for Support Group,” Paula explained. “At the time, there was a pilot program being offered called Living a New Day. I was out of my comfort zone when I arrived at the first meeting, but within half an hour I was completely comfortable being with half a dozen people I hadn’t met before, discussing our journey.”

Paula continued attending the program and gained much from the experience. “This wasn’t something offered by my oncologist or primary care physician,” she said. “They release you and say we’ll see you in a few months. That’s it. But Cindy understands that some people need more. She’s been there, she gets it and she makes everyone in that room so comfortable. I knew this one program was just for a short time, and half way through I started to get concerned. What am I going to do when it ends? I look forward to each meeting, to seeing the others. In a short time, these people became an important part of my life, like family. I needed someone who could help me keep moving forward.”

She needed a cancer survivor mentor—and Cindy was the one.

“Paula came to the pilot group I offered about life after cancer, and she has found the continuing support to be really helpful,” said Cindy. “Since I have been in the position these women are in now, I can share my knowledge and experience to help them work through the emotions and physical changes they are feeling. I try to help them become more comfortable talking about their cancer and living their lives.”

Paula explained some of the ways Cindy mentors her. “Cindy has a way for presenting information that most people would find difficult to talk about.  If she sees an article she thinks I might be interested in, she emails it to me. She sends texts to check in with me. She sends messages through our Facebook group. She’s always available if I have a question or if I just need to talk, and she responds quickly. I know people who are going through the cancer journey, and I try to remind them that your treatment will eventually end, but it’s not ever really over for you. At some point, you’re going to need something else. That something else is Cindy Sheridan Murphy.”

CHD Cancer House of Hope works to enhance the lives of people with cancer and those who care about them by providing emotional, educational, social and spiritual support. The House provides a range of cancer support services and relaxation programs at no cost to those who face this devastating disease. Each year, CHD Cancer House of Hope serves 500 guests, right here in our community. Every penny of every dollar donated to the House directly impacts programming and the people served.

VFW Post 6714 and VVMA Donate to CHD’s Early Intervention

Members from West Springfield’s VFW Post 6714 came to CHD’s home office in Springfield just before Christmas to deliver toys and a generous donation to help families in CHD’s Early Intervention program. The money will be used to purchase strollers, toys, diapers, and other things families need for their children. Vietnam Veterans of MA, Inc. also contributed a generous donation to help the families.

Cindy Napoli, OT, Program Supervisor for the program, was responsible for bringing it all together: “I was talking with a few members of the VFW about how a few families in our program needed a stroller and some other things.  Norm (VFW 6714 Post Commander) not only offered to help with a donation and some toys, but also recommended we reach out to the VVMA. It’s a nice thing for members of our community to help each other out, especially this time of year. The donations were spent on fulfilling wishes of strollers, high chairs, and toys for families with specific needs. This is also really great exposure for our Early Intervention Movers and Shakers Infant and Toddler program. Not a lot of people know that it’s a free playgroup for members of the community who aren’t in our program and hopefully this donation helps to spread the word. Anyone with a child 8 to 20 months can come in as long as they have all their shots.”

About CHD’s Early Intervention

Each child is unique and grows at his or her own pace. But sometimes a child needs help. CHD’s Early Intervention Program can help. We work with infants and children from birth to 3 years of age who have or are at risk for developmental delays. A CHD team can assess your child’s abilities and, if indicated, will develop an individualized plan to promote development of play, movement, social behavior, communication, and self-care skills. We work with children and their families in their environment – no need to come to the office.

Common Concerns

Parents often contact early intervention because they are concerned about possible speech delays, or delays in walking or crawling. Our experienced team can assess the possibility of a delay and work with you and your child to help them catch up, if that’s what’s needed. Early Intervention also commonly works with babies with torticollis (tightness of the neck muscle). This condition causes babies to be tilted to one side and can cause a decreased range of motion and a flat spot on the head. We also work with children on the autism spectrum, providing sensory integration therapy and working to help them tolerate their environment. Feeding concerns are also common. In all cases, we work with families to connect them with other community services that might be helpful.

For information on CHD’s Early Intervention including FAQ’s, or for contact information, please click here

Jim and Dawn- A Story of Shared Living

Jim is an easy-going, 54-year-old man who loves to play games, especially dominoes. He pays attention to details and makes deliberate plays after careful consideration. Jim really likes to win, but he’s never a sore loser if things don’t go his way. His sense of humor adds to the fun.

Dawn loves to play games, whether that means board games at the dining room table or yard games like croquet out back. She’s also a recent empty nester who has room for an adult with cognitive or intellectual disabilities in need of a permanent, caring home.

Someone like Jim.

Since last July, Jim has lived in Dawn’s home as a member of her family. The two were connected through a CHD program called Shared Living, which helps people add an adult to their family through a process similar to adoption but with elements of match-making. The goal is to make the client (Jim) a part of the daily life of the provider (Dawn) to enrich the lives of everyone involved.

The idea behind Shared Living is to offer an alternative to the 24-hour group home for individuals receiving services through the Massachusetts Department of Developmental Services (DDS). Shared Living providers welcome a client into their stable and caring home environment while providing an appropriate level of care. Providers earn tax-free income based on the level of care the client requires, and respite care coverage is included.

Jim is fairly independent and previously lived on his own, but a medical condition requires him to eat a strict diet and he wasn’t sticking to it. Since his health depends on eating right, he went to a 24-hour group home, but he didn’t like the environment, which was very structured. After living on his own for many years it simply wasn’t what Jim wanted.

At the time, Kimberly M. Puffer, Assistant Program Director for CHD Meadows Homes, was leading a team developing the Shared Living program. She knew Jim from his participation in day programs, understood he wasn’t happy in a group home, and thought he’d be an ideal candidate for Shared Living. She just needed to find him the right match.

Dawn had been working as an office administrator for about 10 years, but prior to that she worked in direct care for abused and neglected children in residential homes. That gave her some experience working with people in need of special care. She also had some experience with respite care for a developmentally disabled adult.

“My brother has a developmentally disabled gentleman who lives with him, and my mother was providing vetted respite care,” said Dawn. “The more times she did that, the more I thought about doing something similar. With my adult sons away at school or working, there was room in my home, and also in my heart, so I started looking into what would be involved. My initial contacts with a placement agency didn’t work out as I’d hoped, I think mostly because the match wasn’t there. That match is so important.”

Not easily discouraged, Dawn continued her search and connected with Kim Puffer at CHD. “I had met Kim when she dropped off the gentleman for respite care with my mother,” said Dawn. “As it happens, he is served by CHD. I had heard such wonderful things about the support and good management of the agency, that I decided to seek out opportunities there. This was right about the time that CHD was starting their new Shared Living program, so I was connected with Kim. The timing almost felt like divine intervention when Kim called and said, ‘I have the right individual for you.’ When Jim and I met, we both knew right away. I almost had to pinch myself because it worked out so perfectly.”

Dawn went through thorough screening as required by CHD and the DDS. In addition to a background check on the prospective provider and family, DDS conducts a detailed house inspection, everything from water temperature regulations to fire extinguishers and escape routes in case of fire. There is also confirmation of required training in areas such as first aid, CPR and medication supervision. Because the goal is to find a long-term match, screening also takes into account shared interests and lifestyles.

Shared Living providers are expected to help the individual with transportation to medical appointments, provide medication supervision as needed, and assist with financial transactions. The Shared Living provider may also need to assist with meal preparation and other care tasks. It’s possible for a Shared Living provider to work regular hours during the week since many clients participate in activities or have a paid job during the day. Some higher functioning clients may be able to be dropped off in the afternoon and stay at home for a couple hours until a provider gets home from work.

Shared Living providers receive a stipend, determined in collaboration with the DDS, to cover costs such as housing, food and transportation. For a client who is lower functioning and needs more intensive care, support and service, the stipend would reflect that required level of care. For a higher functioning client with few medical needs, the stipend would be less. The stipend does not pay the client’s personal or recreational expenses, which can be paid for by the client with earnings from a job or benefits such as Social Security. Respite services are also available when a provider needs to be away or for an occasional break.

A new Shared Living arrangement doesn’t always fall together as quickly as it did for Jim and Dawn, and it wasn’t long before Jim moved into his new home. Initially Kim stopped by twice a month to see how Jim and Dawn were getting on. Those visits are now monthly, though Kim calls regularly to check in.

Living with Dawn, Jim can do his own thing a great deal of the time. CHD provides direct care staff who comes to see Jim on Mondays and Wednesdays. The staff supports Jim in a variety of ways, including taking him for appointments or to stores that aren’t open outside of Dawn’s work hours. The direct care staff, who is supervised on an ongoing basis, was hired by Kim specifically to fit Jim’s personality and interests.

“Jim is independent,” said Dawn. “He can be home for periods of time on his own. Not every person in Shared Living can do that. I do more for him than he probably needs, but that’s likely because I’m a recent empty nester. He’s neater than my kids were!”
Outside of work hours, Jim and Dawn do the same sorts of things any family does, from picking up groceries to going to the movies to going on vacation. Her sons and other relatives all welcome Jim as family. “Jim loves to play games, just like I do,” said Dawn, sitting at the dining room table as she and Jim turned all the dominoes blank side up to start a new game. “We’ve been known to play this until 11:00 or midnight. Jim played dominoes before he came to live here and sometimes I think he didn’t want us to think he was as good as he was.” Dawn laughed as Jim tried to hide a smile.

Dawn recalled a recent weekend when her two adult sons were home. “We all went to see Stephen King’s IT at the movies,” Dawn said. “Jim laughed and I screamed! Then the next day Jim came with us to our annual family picnic. There were about 30 family members there and Jim met them all. He played cornhole and had a blast. For Shared Living to work, you need to find a match with someone who will become part of your life and how you live, and Jim enjoys the same things that we do. He’s not a complainer and he goes with the flow. He’s great to have in the family.”

Now that she has several months of experience as a Shared Living provider, what would Dawn say to someone who wonders about opening their home to a developmentally disabled adult? “If you’ve never been involved at any level caring for a developmentally disabled person, start by providing respite care. Get a feel for it and find your strengths. When you fill out the screening paperwork, be specific. Kim and her staff can only be as good as the information you give them. When they ask what you want, honesty is so important. There’s no judgment; they want a match.”

Kim said that CHD’s Shared Living program is open to families of all types and sizes. “Whether you own a home, or rent a house or apartment, the most important requirement is that you are welcoming. Shared Living is successful and growing largely due to word of mouth arising from the good relationships that providers and clients form by sharing life, as a family.”

To learn more, visit chd.org (search “Shared Living”), call a CHD Home Finder at 413-333-5093 or email sharedliving@CHD.org.

HAPPY FALL from CHD’s Diversion, Shelter and Housing!

Moms, kiddos and CHD Staff all enjoyed a wonderful time at Fletcher Farm in Southampton.  Farmer Fletcher drove his big tractor safely through the cornfields on our hayride, while we enjoyed the beautiful fall colors.  We got to meet all their animals, pet the goats, baby calves, and a mama pig with her babies. The adventure continued on, we went into the pumpkin patch to find our own perfect pumpkins!  We had so much fun it was a beautiful fall day in New England.  Mr. and Mrs. Farmer Fletcher were wonderful to us!

CHD would like to Thank Fletcher Farm for always supporting us! 

 

CHD’s Diversion, Shelter, and Housing program recognizes that people are individuals, with different needs; CHD operates several specialized programs within its Homelessness Services program. These programs are designed to help families facing specific obstacles, or unique situations learn to live successfully. To learn more about these programs, please click here