A support group in Palo Alto is helping local caregivers cope with the physical and emotional burdens that often come along with taking care of an ill spouse.
Operated by the senior services agency Avenidas, the weekly Caregiver Support Group provides those caring for a spouse or partner -- who in many cases has dementia -- the opportunity to vent and lament.
While the support group is part of a larger network of classes and services at Avenidas aimed at assisting caregivers and their loved ones, it's the only program that focuses solely on the needs of caregivers.
Participants often find comfort in discovering that they are not alone in their job of caring for a loved one who no longer seems like the person they married.
"My husband and I are backing our way down the ages," said the wife of a retired physician in a support meeting several months ago. Her fellow group members nodded in understanding. "I've got somebody who's about two years old at the moment, maybe two and a half, maybe 18 months," she said.
Local statistics on people caring for adult family members are not available, but the numbers are believed to be growing due to the aging of the population. "The numbers are going up of folks with dementia with the aging of Baby Boomers," said Tom Pamilla, who directs the Avenidas Rose Kleiner Center in Mountain View, an adult day-care program. "It wasn't such a big issue before because people didn't live to be 70, 80, 90, 100 as they do now."
Attendance at Monday support-group sessions has more than doubled in the past three years from six or eight to 20, said Avenidas social work manager Paula Wolfson. "I used to do two sessions a month, and now I do six," Wolfson said.
Nationally, at least 17.7 million individuals are caring for family members 65 and older, according to a report issued in September by the National Academy of Sciences, Engineering and Medicine. By 2030, more than one in five U.S. residents will be 65 or older, the makings of one of the "most significant overlooked challenges facing the U.S. population, their families and society," the report warned.
In Wolfson's Palo Alto support groups, newcomers are welcomed with encouragement and advice.
"I need a group like this because I need to know where I'm going," said a newcomer to a recent group meeting whose husband is suffering from memory loss but so far refuses to see his doctor about it. "I think he's a little scared and doesn't want to face it," she said.
Others chimed in with their own stories of responding and adapting to early signs of their spouse's memory lapses, including one who said her husband checked in and made the co-pay for a neurology appointment but fled the waiting room before his turn came up.
Another newcomer said he was surprised at the level of anger and helplessness he felt. "Seeing the person you've spent more than half your life with go downhill is devastating," he said, prompting a discussion of how others had wrestled with the same feeling.
Caregiving, said Wolfson, "involves a constant cycle of moving from one crisis point to a place of confidence -- until the next transition or crisis takes place.
"For some, the experience is a joy, a blessing and a chance to give back," she said. "For others, it is a stressful, unwanted burden. For most of us, it is both."
The full range of those emotions came out in several recent support group meetings.
One participant said she found it heartbreaking that she was unable to comfort her husband, who was constantly disoriented as to time and place and could not remember that they were married and had lived in the same house for decades. Though they have a comfortable retirement income, she said he constantly felt financially stressed because he no longer goes to work.
"We're both very clever people with standards, and it pains me that we've come to a point in our lives where we're watching "Jeopardy" and "Wheel of Fortune" during dinner," she said. "It offends me."
Another spoke of "yearning to have a real conversation" with her husband, who now displays "a sort of blankness" as they sit down to dinner.
Several said that humor or simply playing along had helped them cope. One spoke of her husband's delight when she began reciting a nursery rhyme, leading to laughter.
Another spoke of "sometimes hating" her husband of many decades. "It's a grieving process, yet they're still here and we care about them," she said. "There's this weird thing of missing the person but having him there and needing to do something to make it OK. Being a widow, but not. Conversation, which was the soul of our relationship, is totally gone."
One caregiver said she felt "bolstered" by going to the farmers market and preparing healthy meals for her husband, even though he wouldn't know the difference if she gave him the same dinner every night. "I've come to realize that I don't want this relationship to end," she said. "I want to prepare dinner for two. It gives me something to do with him. We have supper together."
Caregiver Support Group sessions are held 11:30 a.m.-1 p.m., Mondays in the Garden Room at Avenidas, 450 Bryant St., Palo Alto. For more information, call Paula Wolfson, LCSW, at 650-289-5438.
'Crisis to Confidence' caregiver conference set for Oct. 22
Each fall, Avenidas sponsors a full-day conference on caregiving for spouses and family members who, often unexpectedly, find themselves in the situation of having to take care of a loved one.
The group's 13th annual caregiver conference, "From Crisis to Confidence," will be held from 8:30 a.m. to 3 p.m., Saturday, Oct. 22 at the Mountain View Senor Center, 266 Escuela Ave., Mountain View.
Topics include coping with cognitive decline, communication techniques, making the most of medical appointments, mindfulness-based caregiving and technology's impact on caregiving.
Keynote speaker Lisa Krieger, a San Jose Mercury News reporter who wrote about her father's decline and death in a high-tech setting, will discuss the "slow medicine movement," including legislative and policy efforts to improve caregiving and palliative medicine in the final years.
General admission is $40 (advance) or $50 (door). For more details and to register, go to avenidas.org.
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