Family Heroes

Jammed between two caretaker roles, the Sandwich Generation tries not to spread itself too thin

By Tracey Meloni / Photography by Jonathan Timmes

Kathleen jumpstarts her day with a 5 a.m. run, her personal stress-management prescription. At 6:25 a.m. the 46-year-old is mobilizing kids for school, organizing her workday and making certain Jacques’ Alzheimer-related needs are covered. She has a driving and errand helper three days a week, but not until 5 p.m. Kathleen meets school buses, cheers the kids on at soccer practice, makes dinner, does laundry and manages the family company books in the evening. “I get to bed when I can,” she says.

Kathleen is a member of the Sandwich Generation, a term Merriam-Webster officially added to the dictionary in July 2006. Originally intended to describe those simultaneously caring for children and parents, the sandwich definitions have expanded. There’s the more familiar “club sandwich” generation, caring for grown children and grandchildren, or perhaps grandparents, parents and children. Lesser known is the “open-faced sandwich” caregiver, often caught completely off guard.

Open-Faced Sandwich
Kathleen Lockhart credits her pre-dawn run with “keeping me sane.” Daughters Maddy, 13, and Jillian, 8, come next, then she must tackle what they all know is “the Alzheimer’s elephant.” The once-athletic Jacques Benjoar enjoys his daily walks, but misses the softball team he played with for years, and avid golfing has been replaced by occasional trips to the driving range. Jacques doesn’t drive a car anymore, nor can he perform household tasks involving tools and ladders.

He is not Kathleen’s father—he is her husband, diagnosed with Young Onset Alzheimer’s disease.

“I have been progressively becoming a caregiver for two years,” Kathleen says. “My husband is not [yet] 55 and has been showing symptoms since he was 53. The level of things that I do for him, and in turn for the kids since he used to do for/with them has very slowly increased. I guess I’m just now considering myself a caregiver.”

Kathleen, too, looks for the upside, and being more connected to her family is one reward. “I now know everything going on, where he used to be that guy.” On the flip side, Kathleen finds “I can’t ever turn my brain off. I have to constantly be ahead of what’s coming next and be prepared. It’s hard staying in today without getting overwhelmed with prep and projections for tomorrow.”

Kathleen’s brothers-in-law and their kids provide respite. “I don’t call on them too often but when I do it’s a great break to know I can leave for a day or two and leave it all in their capable hands.”

Traditional Sandwich
Elegant and impeccably dressed, 87-year-old Jacqui maintains her independence and enjoys many varied interests thanks to her daughter, Libby Anne Russler, 53, of Falls Church. Like her mother, Russler manages life’s unexpected surprises with a wry sense of humor and strong appreciation for life.

“Mom has arthritis and uses a walker, but she has no ‘diagnosis’ apart from being 87,” says Russler. “She moved to Northwest D.C. after my Dad died in 1985 and has remained very active, but she does need some help.” Russler is raising a 5-year-old son and says she has challenging moments “when I am solo, and each one needs me, one in Fairfax, one in N.W.” Being the family communication coordinator for three sisters also can be challenging.

Libby’s best help comes from the agency Home Instead Senior Care, which provides a wide range of services to seniors wishing and able to remain in their own homes. In the case of Russler’s mother, Home Instead visits three times each week (more when Jacqui has an accident or medical problem), providing help with groceries, driving to doctors’ appointments, household tasks, cooking and companionship. The agency “takes a burden off me, and keeps Mom from being alone.”

Russler keeps herself positive through modern technology. “I play solitaire on my computer and surf the web for research, entertainment and connection. The DVR allows me to watch ‘my’ shows when I can.”

“Bridging the space between preschool and Elderhostel, taking wisdom from one to another” is another plus, she says. Sharing the antics of the young and hearing the older one laugh also keep her smiling.

Becoming an Advocate
While she prefers to stay out of the spotlight, Heather Davies, 45, of Annandale, believes so strongly in the value of Fairfax County’s Adult Day Health Care Programs that she felt compelled to present testimony before the Human Services Commission when budget cuts loomed. Davies, married and the mother of three sons aged 8, 10 and 14, has cared for her 82-year-old mother, Peggy Stone, for 12 years. Stone, who suffers from dementia, attends the Braddock Glen Center five days a week.

“I have examined 17 different care settings over the last 12 years,” Davies says. “I have been serially disappointed by the care provided. Imagine paying $60,000 a year for assisted living and still finding that you have to spend at least four hours a week there to do the showering, room cleaning and putting away of clothes yourself.”

By contrast, the Fairfax County Adult Day Health Care program “has been a God-send, an answered prayer. We supplement this with private care for late afternoons and weekends, for a total monthly cost of $4,500. The quality that this program delivers to our seniors is at least on par with that which Fairfax County Schools gives to our children. It is a national model and it needs to be expanded, not dismantled.”

Heather and fellow champions of the adult day care centers “have stepped up to the plate,” says Doris Ray, advocacy and outreach coordinator with ENDependence Center of Northern Virginia, a community-based resource center managed by and for people with disabilities. Davies and a group of other families with loved ones at Braddock Glenn have pledged money to keep adult day care centers open.

Paradigm Shift
Raising a 3-year-old son while caring for a husband with frontotemporal dementia may not seem like a formula for positive thinking, but Herndon resident Lee B., 44, is determined to make things as upbeat as possible. Her husband was diagnosed in September 2006. Lee also has a 10-year-old daughter and says, “I think I manage [to stay positive] because I have committed to taking good care of myself, and I am living in the here and now in a way I never have in my life before … it’s a true paradigm shift. “

Lee attends monthly meetings of the Alzheimer’s and Related Dementias Association. “The support group is a bittersweet experience. I come away grateful that my husband is likely less disabled at this point than the loved ones of the other caregivers attending the group; it’s important to be grateful, and I am,” Lee says. “The downside is that I get an over-the-horizon view of what is coming.”

“I can’t teach my kids how to be happy in spite of their dad’s illness and all its devastation unless I model that for them. My husband lacks insight into his impairment and the impact it has on our family, so it’s very isolating and lonely. The foregoing strategies for coping were borne of the need to survive emotionally,” she adds.

She hires babysitters to come to the house when needed. “I tell them that their job is to be the 911 person.” 

What Care, When and Where?
Sharon Lynn, assistant director of the Fairfax Area Agency on Aging, cautions that sandwich caregivers face a constant balancing act. “You’re always balancing the needs of children, work, home and care giving.”

Lynn urges caregivers to appreciate the rewards, saying this becomes a time when “the relationship between adult child and parent becomes more intimate than they may have had for years. It’s a time to give back. And it’s possible that you are instilling a sense of family in your children.”

In many families, one child carries more of the caregiving load. “The loss is to the child/children not there,” Lynn points out.

Should the person needing care live with the caregiver? Each case is unique. “In some situations the tension of living in would be too great, perhaps if there were small children,” says Lynn, urging caregivers to “promote as much independence as possible,” whether that involves the aging parent’s own apartment, day care, an assisted living facility or living in.

When is it time to consider more care for your relative?

“When the caregiver is no longer able to safely provide needed care, or when more skilled care is needed than can be accomplished,” Lynn says. She adds that cost may also be a consideration and may become a burden on the caregiver, but stresses that safety should always take priority.

Lynn urges consulting the Long-Term Care Ombudsman program before selecting a care facility. The Ombudsman assists the consumer in making an informed decision about long-term care providers (nursing facilities, assisted living facilities, adult day programs and home care agencies) by offering information regarding providers’ available services, the complaint track record, Virginia Department of Health Licensure Inspection Survey Reports, checklists of typical questions concerning placement and what to expect from the admissions process.

Care for the Caregiver
Lynn prompts caregivers to build self-care into their schedules as an important part of the balancing act.

She names exercise and a day out with a friend as ways the caregiver can take the time to put themselves first. “The caregiver needs to be confident that the respite care provided to the patient is safe and reliable.” Lynn says the care could be adult day care. In cases of a longer absence by the caregiver, such as a hospital stay or time away, “many facilities permit short-term stays for the aging parent.”

Brenda Clarkson, executive director of the Virginia Association for Hospices, agrees. “So often family members put the needs of the hospice patients at the top of their list when in reality the caregiver should take care of him/ herself first in order to provide optimal service to the hospice patient.”

Olivia Mellan, a D.C.-based psychotherapist, money coach and business consultant, was the keynote speaker at Fairfax County’s 2007 symposium, “Mothering Our Mothers, Mothering Ourselves.” Her message to caregivers is clear: “Put yourselves on the radar screen—make sure your emotional bank account is not empty.”

Smart Sandwich Building
1 Build in Respite: Caregivers need regular recharge time.
2 Routine is Important: Seniors in care don’t take well to abrupt change
3 Honor Thy Father: Adult kids will always be “kids” no matter what they accomplish or how much they are in charge.
4 Maintain Independence: Empower the person in care as much as possible.
5 Talk Money and Planning: Find out about resources, power of attorney, living wills and medical directives.
6 Long-Term Care Insurance: Learn from care giving experience and look into long-term care coverage.
7 Stay Fit: If exercise is not the respite plan, make it another outlet.

Resources
The Fairfax Area Agency on Aging supports caregivers of older adults in a number of ways. Twice a year they sponsor caregiving seminars; see www.fairfaxcounty.gov/aaa for the current schedule.

E-newsletter for caregivers
www.fairfaxcounty.gov/aaa/cconline.htm

Brochure
www.fairfaxcounty.gov/dfs/pdf/adultaging/aaabrochure_eng.pdf 

ElderLink care management program
www.fairfaxcounty.gov/dfs/pdf/elderlink_card.pdf

Services for caregivers
www.fairfaxcounty.gov/dfs/webdocs/adults/caregiver_resources

Fairfax County is currently implementing the 50+ Action Plan
www.fairfaxcounty.gov/olderadults/plan.htm, a countywide plan to ensure that Fairfax County is “aging-friendly.”

Other Agencies on Aging:
Alexandria: 703-838-0920

Arlington area: 703-228-1700

Fairfax area: 703-324-5411

Loudoun area: 703-777-0257

Prince William area: 703-792-6400

Northern Virginia Long-Term Care Ombudsman Program (Serving Alexandria, and the counties of Arlington, Fairfax, Loudoun and Prince William through Area Agencies on Aging): 703-324-5861

(August 2009)

Tags: caregiver, Sandwich Generation, seniors