“We talked about love, about anger, about blaming ourselves"

 

Over Tova Stein’s many years as a caregiver, attending Yad Sarah’s Support Group for Family Caregivers was one of the only things she did for herself. It was incredibly hard for her to leave her husband once a week, but she knew how valuable it was to go—and how vital.

Since the onset of her husband’s illness, the Sterns’ home in Jerusalem has been equipped with a hospital bed, a patient hoist, and more—all borrowed from the Yad Sarah Lending Center. Two years ago, when the support group was formed, volunteers identified family caregivers like Tova and invited them to join.

“I said: I will go to see what it is, I don’t know if I will stay,” Tova remembered.  “But I stayed. The group at Yad Sarah helped me survive.”

When her husband got sick, Tova’s friends and relatives urged her to move him to a nursing facility, knowing the demands his care would require. She was determined to keep him at home. Despite her husband’s severe dementia, she said, “he knew he was at home, with me, with his family. It gave him more life, and that life had more quality.”

“Caring for your husband is a 24-hour project,” she said. “When your husband can’t walk, can’t talk, can do nothing, it’s all on you. The target of the group at Yad Sarah was to take care of myself. Just to have that awareness of myself and what I needed, that helped me.”

When someone with physical limitations is living at home, it often means that the household includes a family caregiver, and the burden can often be overwhelming.  Because Yad Sarah is committed to helping people remain at home, volunteers include family caregivers in their focus.

Some clients choose respite at the Time Out Club, where they gather to have a break from their responsibilities, enjoying talk, food, and activities with other caregivers. In additional to the Time Out Club, there are two support groups for spouses, led by a professional therapist, which enable clients like Tova to share experiences and emotions in a safe place.

“We talked about love, about anger, about blaming ourselves, about desperation and death. We talked about what it was like to be with someone with dementia and delusions. We talked about how we had no life of our own,” she said.

“The life of family caregivers is so complex and difficult and stressful,” said Noa Talshir, Director of Caregiver Support Services at Yad Sarah. “It’s a mix of an emotional and physical demand, and caregivers usually neglect their own needs and put their loved ones first.”

The evolving program, in partnership with Eshel, now offers home visits from a trained volunteer, phone support, and classes for practical problem solving. The program collaborates with other Yad Sarah services, insuring that families are able to benefit from the full spectrum of support services.

If a client needs legal help, she’s referred to Yad Riva; if the volunteers are concerned about domestic abuse, they involve the Family Center. Clients tour the Guidance and Exhibition Center to choose the appropriate equipment for their partners—the right kind of wheelchair, the right kind of commode—as well as the tools that can help a caregiver with his own difficult tasks, like lifting his wife or getting her into a car. And at the Lending Center, Yad Sarah’s most fundamental service, scores of caregivers are passing through every day, borrowing equipment to bring home.

“For good or bad, people take longer to age now,” said Noa. “There are a lot of caregivers under a lot of stress.”

The slow deterioration of a spouse’s or parent’s health can leave family members with a seemingly endless commitment. Ester Puld, a volunteer social worker at Yad Sarah, talked about how desperate caregivers are to connect with people outside of their homes. “I came into work this week and had four messages from the same client. She didn’t have anything different to say, but she kept looking for another reason to call.”

“Caregivers are dealing with feelings of loss, while continuing this constant work with daily needs,” said Noa. “They take on more and more tasks and don’t take care of themselves. They don’t have the tools they need to not burn out.”

By providing those tools, along with practical resources and emotional support, Yad Sarah deeply impacts the lives of primary caregivers.  “Caregivers think they can’t be needy,” said Ester. “The message that they can, is liberating.”

Tova Stein can now share with authority the survival skills she learned in her group: “You can’t change the situation, but you can change your attitude. Then you can function and get through the day, and you won’t lose yourself.”

Another client emphasized that, although no one from the group is going to come to her house and bathe her husband, feed him, or change his soiled clothing, she can get through the week “as long as I know I am going to my meeting on Monday.”

The Yad Sarah support group, she said, “is a life-saver.”