Cecily O'Connor
RedwoodAge.com

Phrases such as "time heals all wounds" and "this too shall pass" were no consolation to Ellen Schultz when her stepfather, who suffered from Alzheimer's disease, passed away last year. 

"Hearing that 'he's better off' is infuriating," said the 51-year-old, whose parents moved from Florida into her New York City home in 2004 as her stepfather's condition worsened. 

Carol O'Dell and her mother.

While her stepfather was initially resistant to relocating, he eventually warmed up to the situation under Schultz's constant care. She dramatically scaled back her accounting and bookkeeping clientele to tend to her stepfather, as well as focus on her own breast cancer diagnosis in 2005.  

"We became extremely close in a way I have never experienced with another individual," said Schultz, who'd known her stepfather since she was 15. "The Alzheimer's sort of took down the barriers he may have had to expressing himself because he changed. He spoke to me and told me lots of things that he held privately. When he died, I was devastated... it was sad. It was really sad."

While caregivers can spend years watching a loved one deteriorate, many still feel helpless when their elderly parent or family member passes away. They already had endured a series of stressful moments - from diagnosis to decisions about nursing homes to handling financial arrangements - but the actual death is incredibly painful. 

A caregiver's grief manifests itself in a range of emotions, from guilt and despair to anger and possible relief. So working through this emotional stress - and trying to pick up the pieces - can send some caregivers into a tailspin. Many have trouble finding and asking for support. 

"There is nothing that prepares you for that moment when they don't breathe again," said Dr. Susan Brace, a psychologist in Evergreen, Colo. 

Carol O'Dell, an Amelia Island, Fla., boomer whose mother died five years ago compared the loss to feeling "like someone unhinged your arms, and they are dangling at your side and you don't know what to do with them."

Rabbit Holes
Initially, caregivers are prone to fall through "rabbit holes" when a memory, song or smell about their loved one is triggered, Brace said. "You can expect a lot of rabbit holes that first year as you're trying to sew this wound together."

Some caregivers' seams are bursting, too, due to multiple factors, including: physical exhaustion, heightened tensions with siblings over the care of parents, strained relationships with children, spouses and friends, as well as career derailment and subsequent financial hardships. 

"It depends on how much of your life you had to give up to be a caregiver," said Donna Schempp, program director at Family Caregiver Alliance in San Francisco. "You may find yourself very alone and may have to do some reaching out ... to reestablish a social life."

Grieving
Nearly one in five caregivers provide more than 40 hours of care per week, according to the National Alliance for Caregiving. That trend affects many boomers who are juggling full-time jobs and/or raising their own children while tending to aging parents. 

Regardless of demands, psychological health is a big aspect of the family caregiver's life that is most affected by providing care. That's true whether a loved one lives with the caregiver, or in a special care facility.

Depression is a common psychological byproduct of careviging, with 20 percent to 50 percent of caregivers reporting depressive disorders or symptoms, according to Family Caregiver Alliance. 

Depression also happens to be the fourth out of five stages of grief caregivers will likely experience. The first is denial and isolation, followed by anger, bargaining, and, later, acceptance. 

Some caregivers like Schultz also have to face ongoing care needs for their other living parent, which can add additional layers of emotional stress. And everyone has to confront a multitude of paperwork to settle a loved one's estate. 

"Give yourself three to six months to go through all the 'what next?' stages," Schempp said. "You're ending one phase and figuring out the next."

An Urge to 'Do Something'
"Part of grieving is a type of mania that comes over you," added O'Dell, who wrote about the experience of looking after a mother suffering from Alzheimer's and Parkinson's in "Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir."

Caregivers experience the realization that "everyone will die," followed by an urgency to "do something with your life," she added.

To recover from her stepfather's death, Schultz said she has spoken frequently with a psychotherapist, e-mailed with friends, started a walking regime and improved her diet. "We don't really have family anymore, and when you're busy caring, you start to lose your relationships, so I still don't have contact with many people," Schultz said. 

Additionally, she said she was unhappy with her family's experience with Hospice of New York, and subsequently declined its invitations to bereavement groups. 

"I feel angry because although I did sort of dropped the ball in some way, I didn't see anybody running after me to pick it up," she said. "I would have liked to hear (someone say) 'I'm here for you.'"

To be sure, each caregiver experiences varying levels of support. For her part, O'Dell found comfort in her "understanding" husband and three daughters "who were 15, 18 and 20 when my mom died, and just incredible young women."

Support Networks
After losing a loved one, support groups can be an integral part in the grieving and healing process.

Trade groups such as the Alzheimer's Association and National Cancer Society  provide support networks and counseling. For it's part, the Alzheimer's Association has a 24-house support hotline to help "when you think about things at 3 a.m." said Jill Center, communications director of the Alzheimer's Association Northern California & Northern Nevada chapter.

Churches, too, are often a natural place for some caregivers to turn, Brace said. She also noted that some mortuaries have support groups, and she recommended that individuals turn to their hospitals' hospice program. 

"Every hospital has a social worker, and they have information about what's going on in the community," Brace said. 

However, "there's no one formula that explains how individuals go through this loss," she added. 

Many individuals avail themselves to websites such as Griefnet.org or GriefShare.org, O'Dell said. Blogs also offer caregivers a forum with which to sound off in a very public forum.

Still "you need to get out of the house," O'Dell said. "By getting out and meeting others in your circumstance, you're going to touch people at their point of need and find a friend to go through this journey together. While you're out you may stop at the store or Starbucks to get on with your life."

While out walking, Schutlz said she has been making plans for the future, and has decided to start a website, Caring For Your Parents, with resources for adults. She said working on the site had made her want to go forward.

"I have become passionate about this," she said. " I see elderly people in my neighborhood wandering around and my heart is broken for them."