A Caregiver's Story
- Written by Janis Merrell
“It is so relaxing! We're all in a space where we are understood, where what we are experiencing is understood. It's also fun--singing, making flower arrangements, hearing music or poetry, talking casually--all this in a space where we don't have to explain our situation or the situation of the person we are caring for. Having others take care of us, the caregivers—food, clean up, entertainment—it just about brings tears to my eyes! The food is healthy and varied and terrific, and that's no small thing. It's a friendly, caring environment, and I very much look forward to it each month.”
This is Cynthia Snow’s description of the West County Memory Cafe, which meets the third Friday of the month from 12 p.m. to 1:30 p.m. at the Shelburne Senior Center. Cynthia’s father was diagnosed with Alzheimer’s about 5 years ago. Soon after he moved closer to Cynthia’s home in Shelburne, they started attending the Memory Cafe.
The Memory Cafe is co-facilitated by social worker Dianna Young and Shelburne Senior Center Outreach Coordinator Leanne Dowd, who is also a social worker. According to Dianna, “We keep an eye towards something people are able to do,” including musical performances (recently via ukulele and Beatles on the violin), simple crafts, an upcoming visit by comfort dogs, and a planned trip to the Connecticut River.
According to Leanne, the lunch offered at the Memory Cafe is “amazing,” with produce from local farms and options such as bread with cheese and fresh tomatoes. There are always plenty of leftovers to send home with participants, which means a caregiver may need to make one less meal.
“Caregivers get to come with care recipients with dementia and everybody understands the difficulty someone might be having. Someone will bring up an issue and others will have ideas—it’s lovely,” states Dianna. “People feel safe, heard, and understood.”
The Shelburne Senior Center also offers the West County Caregiver Support Group the first Monday of each month from 2 p.m. - 3:30 p.m.
Lauri Marder, of Shelburne Falls, who has been providing more and more care for her mother and has attended the support group for over a year, states, “There is so much that is valuable about the group. Any group that sets about trying to help people who desperately need advice, help, encouragement, and information has to be led by intelligent, engaged, knowledgeable people, and the leaders of this group are that. I learn so much every time I go. The principal things that keep me coming back are the stories that the other caregivers tell. It inspires humility and courage to hear the things other people go through and face, often with the greatest grace and strength and love. We would not have a way to experience any of this without the good basic structure of the group, and the attention that is given by the leaders. It feels like a safe place and a good way to learn how to go ahead on each of our separate but connected paths; we all have so much in common despite having such different challenges.”
One important aspect of the caregiver support group is that volunteers offer supervision and activities for the caregivers’ loved ones while the caregivers attend the group. These activities are tailored to the loved ones’ interests, such as reading out loud or going for ice cream. According to caregiver support group attendee Carolyn Smith, “I couldn't have come without that kind of support when I was caring for my friend.”
Carolyn, who lives in Ashfield, has attended the group for close to four years. She became interested in it when she began caring for her friend of thirty-five years after her friend was diagnosed with Alzheimer’s. According to Carolyn, “As her disease progressed it became evident to me that I needed more information, and support to be a good caregiver, thus I joined the group.”
Carolyn states, “The group has been a wonderful combination of sharing information and personal stories, plus has provided a safe, confidential place to go deeper into the frustrations, and the frightening ‘unknowns’ of Alzheimer’s, and to be able to share our own feelings of inadequacy as we all struggle to do our best to care for our loved ones. There is a saying that ‘if you've met one person with Alzheimer's, you've met one person with Alzheimer's.’ There is truth to that but there are enough similarities in our experiences that there always seems to be someone at each meeting who can relate to, and advise you, when you're feeling very alone. Deep listening happens in this group. Encouragement to look for ways to care for yourself while you are caregiving for another is emphasized. The leaders, Leanne and Dianna, are both skilled and compassionate, and are instrumental in creating this safe space, plus bringing us the latest resources and research to help us understand and cope with our caregiving work.”
Carolyn continued attending the group when her friend’s condition worsened and her family made other arrangements for her care. According to Carolyn, this change left her “dealing with the sudden loss of my long-time companion, and my daily caregiving responsibilities.” Carolyn kept attending the caregivers support group, explaining, “I continue to go to the group for support and encouragement, for my own healing and to find encouragement as I discover new ways to do ‘caregiving’ for Irene via phone calls, short notes which include photos of our life and travels together, and an occasional weekend visit. I can't say enough good things about the blessing this support group has been to me!”
Carolyn describes the support group as “a diverse group of men and women, children caring for parents, partners caring for long-time partners, young and old.”
Dianna maintains contact with Memory Cafe and Caregiver Support Group participants by calling them a couple times per month to check in. According to Leanne, along with Dianna’s check-ins, “People know they can call Dianna or me. We talk people through things, people call at their wits’ end.”
While the Memory Cafe and Caregivers Support Group are held in West County at the Shelburne Senior Center, they are happy to have people from any area attend. The first step is to call Leanne at the Shelburne Senior Center at 413-625-2502. Leanne states calling is a good way to introduce herself and tell people a little about the group and the Cafe. She says “Anybody is welcome to call. I am very open to talking to people about what would work.”
If you are not near Shelburne, and are looking for caregiver support, call LifePath at 413-773-5555 or 978-544-2259.
- Written by Jessica Riel
Aging in place with dementia support services
Alan Bachrach lived with his wife Deb in Petersham, in a home filled with their love of animals and each other. “Alan was a veterinary ophthalmologist,” says Deb, “and, like most veterinarians, that was his life.”
Their restored 260-year-old home features outbuildings for the veterinary practice and their many animals, including dogs, cats, llamas, goats, and sheep. “A lot of our hobbies were based around animals,” says Deb.
While he was still practicing, Alan began to show signs of dementia. “The first sign that I noticed was that he was having trouble following a complex story,” says Deb, “and then I noticed when I would go over patient history in the office, he wasn't always paying attention. He wasn't able to follow. And then the next thing I noticed, he was having a really difficult time keeping up with notes.”
After initially working with Alan’s primary care physician, for a couple of years Alan was treated for depression, but eventually further evaluation led to a diagnosis of dementia with Lewy bodies. “He's a really, really bright, very well-educated person,” says Deb, “and I think that probably masked things for a long time.”
Deb sought help to be able to care for Alan, who needed 24/7 assistance, at home. In addition to support from the Visiting Nurse Association, Deb found her way to LifePath. “When I knew the organization as Franklin County Home Care,” says Deb, “I thought it was Meals on Wheels. As I looked further into LifePath, I realized just the array of services that were available.”
A case manager from LifePath met with the couple and offered assistance through dementia coaching and additional support services and resources for both Alan and Deb as his caregiver.
Deb had spent time caring for her mother, who had Alzheimer’s disease, but “caring for my mother is quite different than caring for a spouse,” says Deb. Dementia Coach Linda Puzan helped Deb to learn more about caring for someone with dementia with Lewy bodies in particular. “This is such a different disease that the tricks that we knew were helpful with my mom were not helpful with Alan.”
Linda helped Deb to think about ways to increase Alan’s safety, such as making the home safer with some dementia equipment such as door chimes, door locks, and stop signs for when he was walking around the house. “We did have a little bit of trouble with wandering,” says Deb. Ideas like these helped Deb to feel “more at ease” and less anxious while she went about her day.
Also helpful to Deb’s wellbeing as a caregiver was the Dementia Caregivers Support Group, available remotely and in-person through LifePath. “I think the nicest thing about support groups is you can share whatever you want to share,” says Deb. “And these are people that are having the same experiences. It's really tough for me to explain to our friends and some of our relatives because they're not in it. To be able to talk with someone who's in it, we can trade stories and things that work and things that don't work.”
Linda also recommended a way to help stimulate Alan’s mind and improve his mood.
At that time, Alan was speaking only in very short sentences and was having difficulty staying engaged at home. “Alan has always been known as the class clown,” says Deb, sharing photos of Alan dressed up in fun and creative costumes. “He used to read nonstop when he wasn't at work. He stopped reading, stopped listening to music. That was I think because he couldn't figure out how to turn the CD player on.”
Linda connected Deb and Alan to Peter Acker from the Alzheimer’s Music Project, which provides iPods loaded with customized playlists to people living with dementia. “I gave her genre-specific artists that I knew Alan would like to listen to. She then sent that list along to the folks at the Alzheimer's Music Project,” says Deb. “The night this thing arrived, at first, Alan was really apprehensive because anything electronic had really been throwing him lately. And he's never been a tech whiz at all; like, the simplest of simple is good for him. So he was really nervous about it.”
Peter went over instructions for how to operate the little iPod. “He put the earphones on, and Alan went from saying nothing to within a couple minutes singing along,” says Deb. “There's Alan with the headset on singing and smiling, just a completely different person.” Alan went from occasionally speaking in short sentences and mostly sleeping to listening and singing along to his favorite songs for hours on end.
After gaining a better understanding of dementia with Lewy bodies and feeling more supported in her role as a caregiver, Deb says she felt like things settled into a more supportive routine for herself, which in turn benefited Alan. “He had a remarkable little rally this summer,” says Deb, “and I am thankful for every second of it.” The home felt more relaxed again, and Alan started sleeping better. In May and June of this past summer, he began to have better days, common with dementia with Lewy bodies, with its symptoms that Deb says “wax and wane.” Alan and Deb were even able to go out to dinner.
Until the end, all of these services helped to keep Alan at home, where he wanted to be.
Alan Bachrach passed away at the end of the summer. He is missed by his family and many friends, animal and human alike.
- Written by Jessica Riel
Opening a home with love for a patchwork family
Jean Brisson moved with her family to Charlemont, Mass., nearly 20 years ago.
“I moved here because my father had sold his house in Northampton and relocated to this area,” says Jean, “and I had children and they were very close with my dad.” Now, Jean’s children are grown, and, though they still live close by, all but the youngest have moved out of the house and started families of their own.
Thanks to Jean’s work as a paid caregiver through the Adult Family Care (AFC) program at LifePath, her home is still a house filled to the brim with love.
“I'd be a lonely old lady in a seven-bedroom house if I didn’t have them,” says Jean. “Think about that! I'd have to sell my house and move away.”
It all started back in 2004, when a friend of Jean’s called. “[She] said, ‘Would you ever consider doing adult foster care?’ And I immediately said, ‘No. I have three kids.’ My boys were in high school, so she said, ‘Well, would you meet the young man? He's your twins' age, and they may know him. He goes to the same school.’ And so I met him and loved him the minute I met him.” Jean welcomed her first AFC client into her home that summer, and she’s been caring for folks of various ages ever since. “And then subsequently I would get a phone call saying, ‘Would you consider taking another person?’ And I would say, ‘I don't know. Let me meet them.’ So I would meet them and then we had another fellow move in.” That was Bill, who, says Jean, “stayed for a long, long time. And then we ended up with the three ladies that I have now.”
Those three ladies are Marcia, Jane, and Brenda. “Marcia, she was here first, of the three ladies,” says Jean, “and she tends to know everything the best, too, so she's really helpful and can be a little bit instructive with everybody. She is a tiny little thing. She's 74 years old.”
About six years ago, Jane joined the family. “Jane and Marcia are really, really, really good friends,” says Jean.
Brenda moved in after Bill passed away. “We have a brand new person that has moved in, and she immediately said to both Marcia and Jane, ‘Would you be my new sisters?’”
The women have a daily routine during the weekdays. “In the morning,” says Jean, “we get up around 5:30, and I come down first and get everybody's meds ready, set up the mornings, set up breakfast. So between running up and down stairs, it's a pretty full workout in the morning between 5:30 and 8:30.”
To receive care through AFC, a person must be an elder or have a disability and be over the age of 16 with daily personal or medical care needs. “It's not cookie cutter,” Jean says. Each of the ladies who live with Jean have their own level of activities that they can either manage on their own or manage with Jean’s help. “Marcia gets ready first, so I help Marcia shower. Then she comes down and gets her breakfast and her pill,” says Jean. “Then I wake Brenda and help her get ready and then do her breakfast routine. While she's eating breakfast, the other two girls leave by 7:30, and then Brenda leaves by 8:30.”
While Brenda, Jane, and Marcia are at their adult day health programs, Jean goes to work - sometimes from home and other times in the field - as a case manager with a company that serves residents of nursing homes. “Then everybody comes home by 3:30,” says Jean. “On nice days, Marcia and Jane walk the length of the driveway, because Marcia is really diligent about being healthy and having exercise and being skinny so she can go on vacation. And then the best part of the day is Judge Judy. So Marcia comes in, turns on the TV, and everybody watches Judge Judy.” Finally, the women have dinner together before getting ready for bed to rest and be ready for the next day.
Weekends are more laid-back. “We get to sleep a little bit later, like 7 o'clock, instead of 5:30. We'll do some activities. Marcia and Jane will go out with a companion sometimes. My daughter, who lives here also, she will do nail care, paint the girls' nails, or she and Marcia do scrapbooking sometimes, and Jane's puzzles.” Jane enjoys doing her puzzles upside down for an extra challenge.
“It's a family kind of atmosphere,” says Jean. “They're just part of our household. They're part of our family. We've been together so long that we just complement each other. It's just a natural flow for us.”
Jean, Marcia, and Jane all take a vacation together each year. “The first place we went was Disney, and Marcia loved it. Jane absolutely loved it, but Marcia, she will tell everybody about her Disney trip.” After a year away from Disney, when they took a vacation to the Poconos instead, the women have agreed to return to the Happiest Place on Earth, “because the Poconos are just not as cool,” says Jean.
In Jean’s home, love and care go hand-in-hand. “Having a family atmosphere really provides this other connection that you don't find in a group home, you don't find in a nursing home,” says Jean. “I have six grandchildren and they're all little. They're here almost every day. And so when they come in, they're like, ‘Hey, Grammy! Hi, Marcia! Hi, Jane! Hi, Brenda!’” The whirlwind of young energy is one way that living in Jean’s home is special for Jean, Marcia, and Brenda, who would be unlikely to see children very often if they were living in an institutional environment.
Recently, one of the men Jean cared for passed away, and his life and death had a big impact on the whole family. “We miss Bill so, so much,” says Jean. He had an especially close relationship with the children. “When Bill used to live here, the little one would run and he'd go sit on Bill's bed and watch TV with him and hang out with him.”
One of the boys would collect garden tools and bring them in for him and Bill to explore. “He took them out of the package and he handed them one by one to Bill and showed Bill,” says Jean. “And Bill was talking to him about how you use each thing. That was so empowering for this child, who was two at the time, but it was also this huge gift to Bill, because he just had this relationship.”
The children count everyone in Jean’s house as part of the family. “All the ladies have that kind of relationship with the kids, you know? And none of them leave without making the rounds: ‘Bye, Marcia! Bye, Jane! Bye, Brenda!’ Of course, Brenda would be like, ‘What?’ And they're like, ‘Bye, Brenda!’ She's like, ‘What? You're going?’ They're like, ‘Bye, Brenda!’ So it's hilarious, too. I mean, we have so many fun times and funny times.” And when that whirlwind of children gets too wild, they can send the little gusts of wind back out the door. “We send them home,” laughs Jean, “the girls and I send them home sometimes.”
The women have support from a team from AFC at LifePath in the form of a dedicated social worker and nurse. “I've had Carol and Tina on my team for a really, really long time,” says Jean, “and so it's nice, because they're very familiar with the ladies, and the ladies recognize them and they like to get a visit.”
If Jean has a question, she feels she can call on the AFC program for support at any time. “Not only are the social worker and the nurse available at the time of their visit, but I can call them with questions or just for support,” says Jean. “There are times when you just want to run your idea by somebody. The AFC program, they're a phone call away, and it's nice to just have a team. So I'm grateful for that.”
Jean is fortunate that she has a great relationship with each of the women in her care, and appreciates that “you're not isolated, and you're not alone, and you're not making all these decisions,” but she also knows that she would not be asked to continue caring for someone who was not a good fit. “You do have the option of recognizing if it's not a good fit or not a good match,” says Jean, “and the participant does, too.”
Jean has been fortunate to have long and lasting positive relationships with the people she has come to call family. “If you have the right relationship and you have a good match, then that person becomes a part of your life and you're a part of their life.”
Before Bill passed away, everyone in the family came to see him in the hospital. “I walked in on my daughter-in-law saying to Bill, ‘Bill, I just want to thank you because you have been such a great friend to my sons, and they love you. And we all love you. And I just want to thank you.’ That was it for me,” says Jean. “That is what AFC is about. It's just sharing your life with somebody and it's meaningful, and you love them and they love you.”
Jean feels she gets back more from her work as a caregiver than she gives. “So it doesn't feel like I'm doing this great big service to anybody at all. A lot of times people will say to me, ‘Oh, you're a saint.’ Well, I'm not a saint. It's self-serving, because I love them and they love me,” says Jean, “and it's not like a job or a chore to be with somebody that you love.”
Adult Family Care is seeking more caregivers to enhance their income while opening their homes to enrich the lives of others. Learn more about becoming a paid caregiver with AFC.
- Written by Jessica Riel
An Adult Family Caregiver shares a story of love and enrichment
An inspirational caregiving relationship
Kerry Stone of Warwick is a mother of three and, after 25 years of teaching art to children, says Kerry, “I’ve been devoting my life to doing my own art.”
For several years now, Kerry has found artistic inspiration from Gail Spooner, Kerry’s 66-year-old-aunt, who has Down syndrome and with whom Kerry shares her home. Kerry and Gail both love creating art, and both have inspired each other with their art.
“Her mother was my favorite grandmother,” says Kerry. They had weekly dinners at her house, and Kerry grew up with Gail. “I love her. I feel very honored to be taking care of her.” Kerry thinks her grandmother would be proud of her for taking care of Gail.
Kerry Stone is a caregiver with LifePath's Adult Family Care (AFC) program. Kerry’s brother and his wife took care of Gail in their New Salem home for eleven years. When their children grew up, they were ready to move on with their lives. They asked Kerry to become Gail’s new caregiver. Kerry connected with LifePath and began taking care of Gail.
“I’ve grown from the experience. I feel like I’m more in tune with Gail – it took a little while. At first I was a little worried that I was giving up my freedom, but she’s really fit in well to our family.”
“It’s been a good match for my life because [as an artist] I’m home-based.” Kerry sees value in her preference for the home life: she likes to create a nice home, to cook and bake. She has a nice garden and involves Gail with gardening, encourages her to walk down the road and see the horses.
A good experience for the whole family – and community
Kerry’s children, now 25, 22, and 14, grew up sharing their home with Gail. “They knew Gail forever, but to live with her and have time to interact and be with her was a good experience.”
Kerry’s daughter, the 22-year-old, is a senior at St. Michaels in Vermont. She studies education and had a student in her kindergarten class with Down syndrome. “She’s very tuned in.” She spent five months in Chile during a 2014 semester abroad, working with children with Down syndrome, ages 6-12, who are not allowed to attend regular schools; she helped teach art and dance. The boys are also more sensitive people because of living with someone with Down syndrome.
“Gail has really enriched my community of Warwick,” says Kerry, who adds that Gail touches the lives of those she meets and educates children through exposure to someone with Down syndrome and by simply getting to know her.
The close family and community relationships have meant the world to Gail, too. “She continually tells us she’s very grateful. She loves being here, she loves being a part of the family. I think she knows she’s very lucky” not to be living in an institution, says Kerry. “She’s always leaving me notes [of appreciation]. She’s a sweetheart.”
Adult Family Care program provides meaningful support
Kerry has met inspiring people through the AFC program, other caregivers who have, she says, “enriched my life very much.”
Kerry says it’s been incredible to connect with each person who has filled the role of nurse or social worker in the AFC program. “For all the people that I’ve met over the years, each one really genuinely cares about Gail and her care.” For them, it’s not just a job, says Kerry. Gail touches their lives.
“I really love the support that I get from AFC,” says Kerry. “I think it’s a fantastic program. In any situation, I feel like I have this support team that’s there for me anytime.” Home visits, nurses, and social workers in the AFC program give Kerry confidence.
Kerry encourages others to become AFC caregivers. “There’s definitely a need.” Caregivers can include a participant’s family member (excluding spouse, parent of a minor, or legal guardian) or an unrelated individual wanting to enhance the life of a participant by caring for them in their home. Participants are people, age 16 and older, who cannot live alone safely because of medical, physical, cognitive, or mental health challenges.
It’s really nice to be able to take care of someone in your own home – especially a family member, says Kerry, and it’s service work – helping people have a rich life at home, getting them involved in your life and community. It’s a rewarding role for the families and individuals who open their homes to become AFC caregivers.
In addition to ongoing caregiver support and training, including a monthly visit by a social worker and/or nurse, AFC caregivers receive a tax-exempt monthly stipend.
Anyone who is interested in becoming an AFC caregiver should call LifePath at 413-773-5555 or 978-544-2259 or send an email.