When the Sandwich Generation Gets Sick

When the Sandwich Generation Gets Sick

By Julie Sacks, Director, APDA National Young Onset Center

As our population ages, we are hearing more than ever about the “sandwich generation,” a term generally used to describe a middle-aged generation squeezed between the simultaneous demands of caring for their aging parents and supporting their dependent children.

The size of the sandwich generation depends on how one defines it. According to one AARP report, 44 percent of 45- to 55-year-olds had at least one parent or in-law and one child under age 21 for whom they were responsible. Sandwich generation caregivers often provide those who depend on them with some combination of physical, psychological, and financial support.

As anyone who has ever done it can attest, being a caregiver is a 24/7 job, one that many assume in addition to regular full- or part-time employment. Whether working outside of the home or not, caregivers typically have a more than full plate. What, then, does it mean for the family when the caregiver (i.e., “sandwicher”) gets sick?

Surprisingly, there is relatively little written on the subject. Those articles that do refer to caregivers getting sick typically focus on temporary illness (i.e., cold or flu), and tend to cite the well-known caregiver mantra, “Take care of yourself,” as the prescription for preventing future illness. What do you do, however, when the illness you have is not preventable or curable, and it’s not going to go away? How do you take care of yourself and others when you have a chronic illness like young onset Parkinson’s disease (YOPD) which can limit mobility, stamina, even the ability to multi-task (perhaps the most frequently relied upon skill in most well caregivers’ arsenal)?
Care giving is hard, and it is made more difficult when the caregiver is “sandwiched” between the needs of younger and older family members, or when the caregiver him/herself has health concerns. As a guest blogger on www.invisibleillness.com states, “We can live with [chronic] illness for twenty years, and suddenly wake up finding ourselves being ‘the health-IER one’ … the person who has to pick up the pieces of the family when the chaos of [another family member’s] illness sets in.”

The “sandwicher” I recently spoke with is a prime example. She’s at risk for diabetes and, according to her doctor, must “take better care of herself” (there it is again). She says there’s simply no time to worry about her own health, to diet and exercise. She works full time, and also takes care of ALL of her family’s needs, the cooking, grocery shopping, bill paying, etc. She is currently caring for: her husband (who is temporarily on disability), her adult son (who has YOPD), her two other adult children (who live at home because they cannot afford to live on their own), and her 90 year-old mother (whom she drives two hours twice a month to visit). This may sound like an unusual situation, but it is not. As our parents live longer, and our children remain dependent on us for more years than in any previous generation, this kind of family situation will increasingly become the norm.
Ultimately, each family must consider their options when it comes to care giving, especially multi-generational care giving, and decide what will work best for them. For those caregivers who themselves have a chronic illness, and who are at the same time trying to take care of others, flexibility and creativity are key. Consider incorporating some of the following into your family’s plan: 

Flextime

Flextime refers to a variable work schedule. In general, employees are able to adjust the standard 9am to 5pm work day to a start/end time that allows them to be more available during key periods (i.e., mornings or after school) for those at home who are depending on them. According to a recent Career Builder survey, nearly one-third of employers say they’ll offer flexible work arrangements this year, 48% will permit telecommuting.
Flexible Spending Accounts (FSA)
Flexible spending accounts are available through most employers for medical care and dependent care and are funded by pre-tax payroll deductions, resulting in a tax savings for the employee. FSAs allow employees to put money aside for use on medical expenses as well as child or elder care. Employees should check with their human resources department to determine if their employer offers this type of benefit.

Backup Family Care

Inevitably there will be times in which even the best care plans are disrupted. What will you do about work if your family member’s caregiver is on vacation or your child is mildly ill and cannot attend your traditional daycare? In order to reduce absenteeism related to care giving, some employers are now contracting with in-home child- and elder-care agencies in order to offer employees referrals for and discounts on what is being referred to as “backup family care.” If your company does not offer this benefit, consider developing your own backup care plan. Some child day care or adult day care facilities have “drop-in” options which make them particularly appropriate for serving this kind of emergency need.

Rotating Chores

Make a list of ALL household chores/responsibilities in a given week and post it on a large board in a central place, such as on the refrigerator. Ask each family member to sign up for the task(s) he or she feels capable of completing. This can change on a daily or weekly basis, whichever makes the most sense for your family. Rotating responsibilities keeps any one person from having to do too much and recognizes that, despite limitations, we are all able to contribute to our own, and our family’s, care.

Low-cost or no-cost services

APDA and many of the other condition-specific organizations provide support services at little or no cost. Whether you are in need of low-cost or subsidized respite care, a support group for the caregiver or patient (or both), contacting these organizations is usually a good idea. Many of these organizations maintain resource/referral lists and may be able to help you with finding a physician, a reputable home healthcare service, and other professionals who, like APDA, are there to help “ease the burden” of living with illness.

The sandwich generation is one that somewhere along the line adopted a “must-do-it-all” attitude. Trying to meet the needs of several generations requires time, patience, and energy, and trying to do it when your own health is compromised makes it even more difficult. For the caregiver who is also a patient, heeding the age old advice to “Take care of yourself” is even more important, yet more elusive, than ever before.

We must begin to admit to ourselves and one another that we cannot, in fact, do it all alone. Begin to include others in your care plan whenever possible. Talk about what you’re going through and ask for help or resources. When a friend, neighbor or family member ask if they can help you, say “Yes!” and have a list prepared of the ways someone could be helpful (ie: mow the lawn, stay with your kids while you attend to your own needs, take someone to the doctor, cook a dinner, etc). Set limits/boundaries when necessary. Check out the availability of financial assistant for respite so you can pay someone to take over the care giving for awhile and give you a break. Your APDA I&R Center can help you find the places that offer these resources.
If you are a “sandwicher” with YOPD or a “sandwicher” with a chronic illness caring for two generations of dependents, including someone with YOPD, we would like to hear from you. Tell us your story and let us know what services you need that would make your life easier. If you have found helpful resources, please share them with us so we can pass them on to other caregivers to help lighten their load.

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