Meyeroff, Wendy J.
Not long ago, caregiving responsibilities were generally short-term. A parent, elderly relative or spouse who had a stroke or heart failure, wouldn't be expected to linger more than a few years, and a sibling born with special needs often wouldn't live much past young adulthood. But as treatment of serious or life-threatening medical conditions has steadily improved, the number of years that caregivers can expect to carry out their responsibilities has steadily increased.
In some cases, the caregiving role may last a lifetime, or beyond. “Inherited” caregiving that is forced on someone is akin to “an offer you can't refuse” — for instance, a dying father asking a child to “Take care of Mom for me.” It's only natural to expect a child to pick up where you leave off, but experts say that you shouldn't automatically assume that he or she will.
Jo Ann Simons, MSW, President/CEO of Cardinal Cushing Center, a Boston-area complex that provides schools, vocational training and housing for people with special needs, has an adult son with Down syndrome. Her son was born with Tetralogy of Fallot, a heart problem related to Down, in which blood flow from the right ventricle of the heart to the lungs is restricted and a hole between the ventricles allows deoxygenated blood from the right ventricle to enter the left ventricle. While Simons always expected her daughter, who is now married, to be involved in her brother's care, “I never expected her to be his caregiver. I didn't want her to go into her adult life with that expectation.”
Simons is being realistic. “Assuming won't make it so,” says Judah Ronch, dean of the Erickson School at the University of Maryland in Baltimore, and an expert on the psychology of aging. “Besides, do you really want a reluctant caregiver?”
Some caregivers never get around to discussing a transition plan with their families, because they don't want anyone to feel burdened. “But if you don't prepare them, you're creating a burden anyway,” says David Tolleson, executive director of the National Down Syndrome Congress Center (NDSC) in Atlanta.
And when there are no immediate caregivers — for instance, someone to look after a great-aunt who never married or had children — distant relatives may be called upon. “Even when the person needing care is a relative stranger, refusing to be pressed into service can lead to terrible guilt,” says Rachel Selwyn, MSW, at Mathers Pavilion, an elder care facility in Evanston IL.
Some families simply cannot assume hands-on caregiving because both spouses work full-time and can't afford to cut back on their hours, or they've run through their financial resources and can no longer pay for home health aides to share the work load. “When people have to pass on caregiving for a reason others can see, like they're physically ill, outsiders seem more forgiving. But if it's something unseen, like emotional stresses or finances, caregivers tend to feel more judged,” says Ronch, leading to a form of guilt known as “failure to provide syndrome.”
Not acknowledging someone's inability to step into, or continue, the caregiving role can also have serious, sometimes tragic, consequences. Tolleson says that twice in the eight years he's been with NDSC a parent whose own health was declining, killed a special needs child.
SHARING THE CARING
Rather than handing off caregiving responsibilities to one — sometimes, disinclined — person, a better solution is to assemble a group that may include relatives, friends, clergy, a lawyer, a financial advisor and a family doctor, and task each of them with a specific aspect of your loved one's care. “Maybe Cousin Mary is very compassionate and an RN, so she might be in charge of health issues. Your son, the accountant, will handle finances,” says attorney Barbara Repa, who is senior editor of Caregiver.com. “But don't appoint co-trustees; they'll have to agree on everything and that can delay getting anything done.”
“I encourage people to think outside the box, making sure their loved one is acquainted with cousins, nieces, and friends, who are then more likely to step up and help later,” says Sue Joe, NDSC Affiliate Relations Director. Whenever possible, make the adult being cared for “the chairman of the board” who everyone talks to.
How do you start a discussion on future caregiving? “My favorite opening is, ‘Mom (Grandma, Uncle Al) you've done a great job all your life to stay independent. What would you like to see happen to make sure you stay that way in this period of your life?’” advises Linda Fodrini-Johnson, MFT, founder and executive director of Eldercare Services in Walnut Creek, CA, and president of the National Association of Professional Geriatric Care Managers. Repa suggests using relevant news items or movies you've seen together as the ice-breaker, and elder care or inheritance issues experienced by friends and neighbors to stimulate substantive conversation. For instance, leaving assets to a caregiver-in-waiting who will assume your current caregiving responsibilities isn't always a good idea. “What happens if that person has a bad marriage and the assets become part of the divorce settlement? What happens if they're seized because of a bad credit report?” asks Ronch.
Hiring a financial planning expert familiar with a special needs trust can sidestep such problems, as well as provide funds to cover the cost of health, medical and quality-of-life needs not covered under Medicaid or Social Security disability benefits without imperiling eligibility guidelines that are based on means-testing.
Before passing on caregiving responsibilities to your successor(s), Simons recommends writing a letter of intent that spells out in detail how you want your loved one cared for. While this document is not legally binding, courts will take it into consideration as an indication of the caregiver's wishes should it become necessary — and it will become a handbook to which future caregivers can refer.
Simons has written such a document titled, “Footprints for the Future,” a 37-page set of templates originally designed to protect her son. It offers obvious information, such as medical and financial contacts and a list of medications, but it also includes, “things that make your loved one come alive, being unique,” says Simons. For example, her son is afraid of the dark and sleeps with the lights on. Simons doesn't worry about it and doesn't want his caregivers to worry, either. “Footprints” is available in English and Spanish at www.theemarc.org/resources12.html.
Selwyn urges caregivers not to put off talking to potential designated pinch hitters. “I tell people early on, think of who would make the best decisions if you suddenly couldn't. And do it now.”
A list of organizations that can help you with your caregiving transition plan.
▪ Non-profit religious groups, like Catholic Charities and Jewish Family Services
▪ Veteran's Administration (inquire about benefits for both the vet and their spouse)
▪ ElderLaw: National Academy of Elder Law attorneys www.naela.org
▪ National Association Of Professional Geriatric Care Managers www.caremanager.org
▪ National Alliance for Caregiving http://www.caregiving.org/
▪ National Family Caregivers Association http://www.thefamilycaregiver.org/
▪ For more information about tetralogy of Fallot and other congenital heart disease, read “With Recent Scientific Advances, More Kids Can Live With Congenital Heart Disease” at http://tinyurl.com/HI-Congenital-Heart-Disease.
▪ For more information about setting up a special needs trust, read “Making Sense Out Of Government Assistance Programs” at http://tinyurl.com/HI-Special-Needs-Trust
© 2011 American Heart Association, Inc.