Hope for Holidays...and beyond

For the more than 44 million Americans who provide more than 37 billion hours of unpaid, “informal” care to their aging family members, a caregiver’s work is rewarding, but not without stress, exhaustion, and sometimes even a little bit of guilt. Known formerly as the “Sandwich Generation,” a generation of adults in their 50s and 60s who are caring for their own children and their adult aging parents at the same time, as well as holding down a job and household responsibilities, the name has been changed more recently to the Club Sandwich Generation, in order to now include the responsibilities of boomerang children, adult children in their 30s and 40s who have returned home due to job loss or financial instability, health issues or other concerns, and their children’s children; grandchildren who often come along with their parents or in some instances, without them. Adding in a condition such as Alzheimer’s can make the caregiver’s job more complicated because the loved one they are caring for needs supervision and assistance at all times.

At Hope Alzheimer’s Center in Cranston, there is hope for caregivers who are responsible for an adult family member with Alzheimer’s and other progressive memory disorders. The center provides daytime adult care for patients with memory loss, five days a week, and has been doing so for more than two decades. Caregivers can drop their loved ones off in the morning and head off to work or other responsibilities, knowing that there are high standards of care, safe, fun activities and meals throughout the day.

Now, however, thanks to a partnership between Hope Alzheimer’s Center, Catholic Social Services of RI and the State Division of Elderly Affairs, Hope Alzheimer’s Center can offer families additional help. Their free “First Sunday” respite care program is in full swing and opens the center six Sundays a year for afternoon care on the first weekend of the month. Program coordinators hope weekend care will help during the coming weeks as the holidays approach and caregivers have additional responsibilities and preparations to take care of. For many, the hours of adult care provided during the week allows the caregiver to go to work, but not take time for self-care or errands.

“This is a wonderful opportunity for caregivers,” said Ellen Grizzetti, president and CEO at Hope. “Previously, caregivers had asked us about Sunday care so they could do things like go to the market or to take a walk; simply to take a break. Our programs were limited to Monday through Friday, and sometimes we have some limited programming on Saturdays. When Kathy McKeon [supervisor at the Diocese of Providence’s Office of Community Services & Catholic Charities] approached me with this great idea to offer care on occasional Sundays, I was thrilled, and the staff jumped on it. The program piloted last year and was so successful, it’s being continued again this year.”

According the McKeon, funding for the program is provided by Catholic Social Services of RI under a grant from the Division of Elderly Affairs.

“One Sunday a month, folks arrive at 1 p.m. in the afternoon and drop off their loved one for an afternoon of safe, supervised fun. They can pick them back up at 4:30 p.m.,” Grizzetti said. “A nurse is here to ensure safety, two CNAs are here, along with a case manager and myself. The people who take advantage of our First Sunday programs don’t necessarily utilize our facility Monday through Friday, so having a case manager here is great. They are able to spend time sitting and talking to the caregivers to let them know what’s available to them for respite care. So many people don’t know we exist here, what services we can help with, although we are now 22 years in existence.”

In addition to the Hope staff who are present for the First Sunday programs, Grizzetti said that there are often several volunteers on hand, helping to staff the event.

“We have a service here once a month provided by the pastor St. David’s on the Hill Episcopal Church and a group of volunteers from their parish, and some of them have come to volunteer with the First Sunday Program. We have also had some students from Hendricken come to volunteer who have been able to use the time towards their community service hours,” Grizzetti said. “It’s a really nice collaboration between the community volunteers and our staff.”

Those who wish to join in on the fun of First Sunday don’t need to go through a lot of red tape or jump through a lot of hoops, according to Grizzetti. The program is offered free of charge. Most times pre-registration can be done over the phone with even as little as a day’s notice, and no long-term commitment is required.

“We do need some information on hand about the guests in case there is an emergency, such as contact information, and we do take information about their dietary needs, but there is really not a lot of work that needs to be done in order to participate,” she said.

Once there, the participants in First Sunday programming enjoy games, discussions, guest performers, and a snack, having a grand time while their caregivers can use the time to their advantage.

“I would love to see caregivers using the December First Sunday time to do something for the holidays, whether it’s Christmas shopping, seeing ‘A Christmas Carol’ or going to LaSalette to see the lights. It offers the opportunity to do something spontaneous,” said McKeon.

In October, Grizzetti said the program had eight people in attendance, but that there is room for many more to join in.

“We can accommodate up to 25 people, and we would love to see the program grow,” she said. “The most we have had at one time was ten participants, and some have returned to us again. The people who come have such a great time, it’s such a pleasurable experience for them, their caregivers know that they are safe and having a good time, and the day’s schedule is just the perfect amount of time.”

First Sunday is a cost-efficient way to provide a respite break for several families at one time, as direct care agencies often find it difficult to staff in-home care for one family at a time.

“The need for respite care is a statewide issue. There are fewer and fewer agencies that provide respite care and there are fewer and fewer available employees to staff facilities. The salary range for CNAs is not competitive and often doesn’t include benefits, so someone could go and work at a place like Target for $15 an hour versus working as a CNA for $11 an hour. Meanwhile, over 100,000 people over 60 are providing varying levels of care to their loved ones at home,” said McKeon.

The Hope Alzheimer’s Center is centrally located and convenient to shopping and for transporting to and from the center, according to Grizzetti.

“It’s a social opportunity for the person coming, and the caregiver has relief knowing they are providing an opportunity for their loved one,” she said. “It’s really a double positive, and all of the staff that are here for the program are here because their heart is here. We love what we do and our staff here is phenomenal. The whole thing is a great team effort.”

According to McKeon, many of the initial details from the pilot program have worked out seamlessly.

“By piloting the program, we have found the time of year that works well, the day of the week that works well, and we’d really like to see this program grow,” she said. “We would love at some point to be able to offer a second Sunday. There are so many people who are on wait lists for our Carebreaks program at the Diocese, which provides respite care for those unpaid caregivers who are caring for adults or children with disabilities or for a loved one who is elderly. There are so many people out there doing it all on their own, and they just really need a break, just to take a breath. If we can expand this program, rather than being able to help just eight or ten people, if we could help 20 or 25 people at the same time, that would be even better. I’d love for the program to reach its maximum capacity, to hear Ellen say, ‘We can’t take any more.’”

The First Sunday program at Hope Alzheimer’s Center is free and open to anyone in the state with memory issues whose caregiver is in need of respite care. The December program will take place on Sunday, December 4 from 1 p.m. to 4:30 p.m. Jorene Lange, a country music vocalist, will be the featured entertainer for the afternoon, in addition to other structured activities. To pre-register or for more information, contact the center at 946-9220 or visit www.hopealzheimerscenter.org.

PHOTOS AND CUTLINES

First Sunday 1:

ENTERTAINING THE GUESTS: Singer Lady D provided first-class entertainment for Novembers First Sunday. (Photos courtesy of Hope Alzheimer’s Center)

First Sunday 2:

The audience enjoys the soulful songs of Lady D.

First Sunday 3 & 4:

EVERYBODY DANCE NOW: CNA Jamie Fournier encourages folks to move to the music.