Anne Biederman had what she calls a bit of an awakening when she was 24 years old.
While in a master’s program in Boston and pursuing a career in writing and editing, Biederman got the news that her mother had suffered a stroke. Around the same time, she reconnected with a childhood friend who had contracted HIV.
Biederman had a good job at Harvard that she found hard to leave, but she headed back to Ohio to care for her loved ones.
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The Family Caregiver Support Program of South Snohomish County offers the following free services to unpaid family caregivers in Snohomish County:
For more information call 425-338-2400, ext. 5501.
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The time spent caring for her mother and her friend started a journey that brought Biederman, who’s 44 and now a social worker, to Washington. She works for Senior Services of Seattle, King County, and helps to provide outreach to family caregivers in Snohomish County.
Feelings of hopelessness and being overwhelmed are common for those taking care of loved ones at home. Families are often spread out and there might not be anyone to give relief to those who need a break. Subsequently, caregivers could find themselves at risk, becoming vulnerable to chronic conditions themselves.
“What we know, both through recent studies and anecdotal observation, is that caregivers, particularly those who are caring for six or more months at a time, are at increased risk for depression, social isolation and are at much higher risk for neglecting their own health care needs,” Biederman said.
Partners and loved ones have to make changes to their lives to take care of a sick person. For some couples, the investment in planning their future together, perhaps retirement and traveling, has not paid off. It’s a sad pattern that Biederman hears a lot from caregivers.
“As a couple they have been working toward that time in life when neither of them would have to work,” she said. “An unexpected condition or disease moves in and everything is changed.”
When one person becomes ill, that future changes and hopes and dreams fade, sometimes leaving the caregiver angry and frustrated.
“It has affected our lives,” said Jackie Nash of Edmonds. “There is a power shift.”
Nash, 63, has become the breadwinner and the one making decisions for her house and family.
“You are really alone,” she said. “You pray that what you are saying and doing is the best thing.”
Lou Nash was only 55 years old when he had a debilitating stroke in March 1993. The following month he had another one. His subsequent heart attack and triple bypass couldn’t prevent Lou Nash from getting on with his life.
“He’s a fighter,” said Jackie Nash. “You just can’t keep him down.”
Lou Nash left the hospital after his stroke walking without a cane. He became involved with a support group for those with brain injuries.
But the roles in their marriage had changed, and when the strain was troubling his wife, Lou Nash handed her a booklet.
“He dug it out and said ‘Jackie, I think you need to make a phone call,’” Jackie Nash said.
That call led her to Biederman and a caregiver support group.
“She helped me so much,” Jackie Nash said. “She just really gets it.”
Biederman and the group members help Jackie Nash to say what she feels in a comfortable, confidential setting.
“It takes nothing away from the person you love,” Nash said. “Sometimes you just have to let it rip.”
Among the groups Biederman facilitates is one that Susan and John Allen of Lynnwood attend.
The Allens took a class through The Family Caregiver Support Program of South Snohomish County called “Powerful Tools for Caregiving.” During that class they heard about a caregiver support group.
“Everybody needs a support group,” Susan Allen, 53, said. “You can touch bases with other people in the same boat.”
Susan Allen’s situation is like that of many others. There’s no help for her and her husband to relieve their stress when trying to cope 24 hour a day, seven days a week, taking care of her 88-year-old mother who has dementia.
“We change her diapers, she roams around the house, loses track of time,” Susan Allen said. She bathes her mother and also takes care of her mother’s friend. She drives to the friend’s home, cooks, shops for groceries and does laundry. The friend also suffers from dementia and has no family.
“It’s a full-time job,” Susan Allen said.
Having the caregivers support group makes the load a lot lighter for Susan Allen. She can get ideas from others in the same situation, help them through tough times, and talk about how she worries about where her mother will go if something should happen to her.
As in many other similar situations, there are no friends or relatives willing to lend a hand. “Not a one,” Susan Allen said. “They all disappear.”
From helping a loved one recover from surgery to constant care for those who might have Alzheimer’s, Parkinson’s or other debilitating diseases, Biederman points out that about 85 percent of in-home care is provided by family and friends.
Members of the Lynnwood support group reassure people that they are walking into a safe, supportive and confidential environment where others in the group have likely had some of the same challenges and frustrations.
Biederman said it is important for individuals to have an identity beyond that of caregiver. People enter into care-giving work expecting that things will become more settled and less intense.
“Somewhere in the midst of it all it gets harder instead of easier,” Biederman said.
Biederman believes the cumulative effects of being a caregiver mean that people sacrifice not only what gives them a personal sense of identity, but also what may refresh them, keep them going and give them a hope and inspiration. In the groups, Biederman and others try to get caregivers reconnected with those parts of themselves.
“Whatever those qualities are that have been valued for them specifically,” Biederman said. “That’s the kinds of things that are going to get them through.”
Reporter Christina Harper: 425-339-3491 or harper@heraldnet.com.
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