Photo by Getty Images
I’m in what should be the prime of my life: 44 years old, good health, good marriage, good job, (mostly) good kids. But this phase of life—my turn to be in the middle of the “sandwich generation”—feels far from easy. While my children no longer need diapers or permission slips, they do have harder math homework and driver’s licenses and big-kid problems. Then there are my parents: They’re still independent and managing their own care, but over the past few years, the physical, emotional and mental signs of their aging have become undeniable.
Watching my parents grow older and more fragile has been harder than I ever imagined. And now, as I begin to face the questions and issues that come with that, I realize I need help. If you, like me, are caught between driving around your aging parents and teaching your kids how to drive, you might find this expert advice helpful too.
How can I support my parents if I don’t live near them?
Technology can bridge the miles when you can’t, says Jenni Levy, MD, an advance-planning and end-of-life care advisor in Allentown, PA.
The key, she explains, is to use it to actually see your parents on a regular, scheduled basis using whatever app or device works best for them. This could be something like Skype or FaceTime on a smartphone or tablet. But be prepared: Even after they get the hang of it, approximately 85% of your conversations might be on the topic of “the FaceTime,” “the Skype” or the evils of newfangled technology. You also run the risk that your parents might learn Facebook too well and send you cat videos all day.
But your patience will be rewarded. According to Levy, actually laying eyes on your parents will give you a better view of what’s going on with them in ways a regular phone call can’t. “Does your dad have a black eye? Maybe he fell and didn’t tell you,” she says. “Ask them how dinner was that evening—the answer will reveal whether they ate or not.”
And though Levy has seen patients as old as 92 use the latest tablets with all the high-tech bells and whistles, she notes that there are simpler and easier-to-use devices available for less tech-savvy members of the older generation.
The Asus VivoTab, for instance, has a bright display screen, big buttons and a touchscreen. The GrandPad, a tablet made specifically for seniors, simplifies the tablet so they can easily connect with their family members, share photos and even request rides around town with a touch of a button.
How often you check in on your parents depends on their situation. If they’re hale and hearty, once a week or less often might work, but if you have any concerns about their safety, touch base every day. “It doesn’t have to be a 45-minute call. Just a quick check-in will do,” says Levy.
Is this normal forgetfulness or something worse?
If you begin to notice your parents forgetting things, don’t panic, says Lisa Halpern, a geriatric nurse practitioner in Hartford, CT, who has been caring for patients with dementia and their families for 12 years. Halpern often tells families that much of the time, forgetfulness is probably normal. “I remind them that when they were in their teens, they forgot things, and it was just chalked up to being flaky, disorganized teenagers. Later, when they were adults and had kids, it was ‘mommy or daddy brain,’ ” she says.
“Then, as people get older, they start to panic, worrying that any forgetting is dementia or an early sign of Alzheimer’s disease, when most of the time it’s just a combination of normal aging and the fact that people are simply forgetful,” Halpern says. “You’ve been forgetful your entire life, but now it’s a scary thing.”
If you do begin to notice changes in your parents’ memory that worry you—whether little things, like losing their keys, or big things, like forgetting how to get home from the grocery store—the best place to start is with their primary care doctor.
He or she can rule out alternative conditions that might mimic the symptoms of dementia, such as untreated thyroid issues, depression, insomnia, sleep apnea or medications that adversely affect the brain. Fortunately, these are all treatable and reversible diagnoses, and patients typically improve once they are resolved.
If your fears turn out to be well founded and your parents really are suffering from dementia or Alzheimer’s, the faster they receive a diagnosis, the faster they can begin the proper treatments.
I’m emotionally and physically burned out as caregiver—what do I do?
Get help. You don’t have to face this alone, says Levy. The first place to look for support is your local Area Agency on Aging, part of a national network dedicated to supporting and advocating for both seniors and their caregivers. Individual agency websites can provide lists of local support and respite resources.
That respite might include utilizing assisted living or nursing homes that offer temporary care for seniors at their facilities for two to four days a week if you need a break and a safe place for your loved one to stay. You don’t need to have an existing relationship with a nursing home for your parent to stay there now and then. “It costs money, and insurance almost never covers it,” warns Levy, “but it may be money very well spent.”
Another option: Whether you live far away from your parents or just down the street, hiring a geriatric care manager to coordinate all aspects of their care, from medications to doctors’ appointments to housekeeping, can be helpful. Geriatric care managers are expensive, but with advance financial planning and insurance, they might be affordable—and worth it.
You can also find caregiving help on the website of your local Area Agency on Aging or through companies like Granny Nannies and Care.com. And don’t forget to reach out to your community. “Maybe someone from church can sit with Dad for a few hours so you can take some time for yourself,” says Levy.
If one or both of your parents suffers from a chronic illness, you can also solicit support through umbrella organizations for those diseases. Groups like the American Cancer Society, Alzheimer’s Association and Parkinson’s Foundation offer low-cost practical and emotional resources for caregivers on their websites. The Alzheimer’s Association even has a Caregiver Stress Check evaluation available on their site.
When should I intervene if I think my parents should stop driving?
Levy says this question comes up all the time in her practice and when talking to caregivers. Navigating this situation is not easy, since it may require taking autonomy away from your parents before they feel ready.
When it comes to driving, ideally, caregivers should be able to report concerns to a primary care physician so the doctor can follow up and evaluate the patient’s status. This doesn’t always happen, she says, because sometimes doctors are uncomfortable making such assessments. “It’s a difficult conversation for anyone to have,” she adds.
In most states—including retirement havens like Florida and Arizona—caregivers can report questionable drivers to the local DMV and a representative will investigate. In some areas, the local AAA office can point you to independent mature driver evaluations to objectively assess vision, hearing, strength and reflexes and determine whether someone is still a safe driver.
No matter how the decision is made, you may still be put in the terrible position of deciding your parents can no longer safely drive. It’s even harder when the picture is not black and white, says Levy, and they are still able to drive competently at some times and to some destinations but not others.
Halpern gives families what she calls the “grandchild test”: Would you let your child—their grandchild—ride in the car while this person is driving? Would you want them playing on the sidewalk as this person drives by? If not, it’s probably time for your parent to stop.
Once you make the decision to take away the car or the keys, do it firmly and do not negotiate, says Levy. “They don’t have to agree with you. They will be mad at you,” she says. “You have to weigh that against how you would feel if they killed somebody while they were driving, and that’s a real possibility.” Luckily, says Levy, thanks to services like Uber and Lyft, this decision no longer means your parents have to rely on you or be confined to their home. Again, the local Area Agency on Aging can help you locate shuttles driven by volunteers and “find-a-ride” services for housebound seniors.
What do I do if my siblings don’t agree with me on how to care for our parents?
Focus on what you do agree on, says Levy, even if you have different ideas of how to achieve it. For example, one sibling might think Mom is OK living on her own while another doesn’t. “If I’m the sibling who thinks Mom needs more care, I would ask, ‘Tell me how you see Mom coping. What’s your understanding of her situation?’ ” she says.
Then, rather than trying to convince your sibling with information and reasoning, point out your common goal, Levy suggests. “I would say, ‘You really value Mom’s independence, and you’re concerned that if we put more care in place, she’ll decline. I want Mom to be as independent as possible, and I’m worried that if we don’t put more care in place, she’ll get hurt. We both want the best for her.’ ”
Levy recommends deciding ahead of time what you can live with and what you can’t. So if you really believe Mom isn’t competent and must be in care for her own safety but your sibling still doesn’t agree even after you’ve discussed it, you may have to decide whether to sacrifice the relationship with your sibling for your mother’s safety.
If it comes down to estrangement, you might want someone else involved. Levy suggests asking a professional—a care manager, a social worker in a local geriatrics program, a mediator from your faith community or someone recommended by the Area Agency on Aging—to facilitate a conversation if possible. “A third party can be very helpful in this situation,” she says.
And if you feel like you’re the only sibling doing the work of caring for your parents, you need to be extra vigilant about self-care, which often means finding respite, Levy says. But no matter how well you take care of yourself, it’s natural to feel resentment and anger toward your siblings if you don’t think they’re stepping up, she notes. “Make sure you’re being completely explicit about the need—a lot of people expect their siblings to ‘just know’ they should be contributing and don’t ask directly. That’s not fair and, more important, it’s not effective.”
Try sending an email—or even a good old-fashioned letter—with specific requests, for example: “Dad needs to have someone with him in the evenings now, because he gets more confused and can’t get himself ready for bed. Can one of you come over a couple of days a week and help? If not, can you pay for outside care? When I’m here every day, I get exhausted and I don’t see my own family, which is really stressful.”
Dividing and conquering might be your best bet, Levy says. “If your siblings can’t do hands-on care, can they manage your parents’ finances? Help with home maintenance? Do research about doctors or treatment? Order household supplies on Amazon every month so you don’t have to worry about running out of toilet paper? Do laundry? There are lots of tasks that don’t require direct care of the parent, and many people want to help even though they’re not comfortable being hands-on,” she said.
Remember that in these situations, there is no perfect solution. Be gentle with yourself and your siblings, says Levy. “Again, self-care,” she advises. “Whatever helps you move past the anger. Meditation, exercise, prayer, whatever.”