- DR. MARION'S METHOD
- CAREGIVER TRAINING
10 Things You Don't Know About Caregiving
Insider tips for planning ahead and helping your parent stay well—without too much stress or family drama for you
1. Start talking ahead of time
Let’s face it: Nobody wants to sit down and chat about illness and getting older—especially with aging parents. Just thinking about it can give you that uncomfortable, tempting-fate feeling. But the truth is that the most respectful thing you can do for your parents is talk with them about their vision for their lives as they get older. There’s a good chance that they’ve thought about this themselves but don’t want to scare or worry you by bringing it up.
“Have these conversations early, when everyone’s healthy—so you don’t wait until your parent’s Alzheimer’s is advancing and you have to say, ‘Wait, we need a plan,’” says Linda Mauger, program director of the Ohio State University Office of Geriatrics and Gerontology.
Find a gentle way to start the conversation. See an ad for a new assisted living facility? Ask Mom if she’d ever want to live in a place like that. Did a family friend recently have a stroke? Ask Dad whom he’d like to help him through recovery were that to happen to him. If possible, have these conversations with all of your siblings around so everyone is informed and no one feels left out. And rehash the conversations as your parents age or as health issues arise. Their feelings and answers might change over time.
2. Your parents may need help for awhile
Playing a caregiving role lasts 4.6 years, on average, according to a report from the National Alliance for Caregiving (NAC). But about 15% of people spend 10 or more years helping out. Mauger, who spent a total of 30 years looking after her parents, was among them. First it was her mother with Alzheimer’s who needed help. Then, after her death, Mauger spent 10 more years caring for her father.
“It used to be that a loved one had a heart attack, was ill for a bit, and either recovered or died,” Mauger says. “But conditions like Alzheimer’s and Parkinson’s are long-term, slow, and progressive. Caregiving in those situations gets more complicated as you go along.” Old age and Alzheimer’s disease are the top reasons loved ones require care.
In fact, some people end up hiring their children to take care of them instead of contracting the services of a health aide. This both gives comfort to the parent, who is cared for by an adult child instead of a stranger, and also helps replace some lost income if a child has to cut back on work to help out. If you go this route, make sure the arrangement is documented in writing, says Boston-area elder law attorney Harry S. Margolis and founder of elderlawanswers.com. Make a list of your duties and how much you’ll be paid, and make sure both you and Mom sign it. Otherwise, if she later needs nursing home care, Medicaid may characterize the payments as gifts and impose 5 years of ineligibility for nursing home coverage.
3. Older adults don't just fork over car keys
Giving up your independence is not easy—so it’s understandable that many older adults are loath to forfeit the habits that define it, like driving or managing their money and paying bills. When the day comes that Mom should no longer be driving, balancing her checkbook, or even living on her own, don’t focus the conversation on her faculties. Instead, make it about you, says elder care expert Marion Somers, PhD. Tell your parent, “I am so worried about you—and the thought of you driving or making a mistake that could hurt you upsets me greatly. Even your grandkids worry about your well-being!”
“You have to tell them how it’s affecting you because they’re so involved in what’s happening with them,” says Somers. “But when you talk about it from the ‘I’ perspective, it takes them out of themselves. They’re looking at you, probably for the first time, and thinking, ‘Oh, I never thought about that angle before.’”
4. Living with you may not be the answer
Let’s say your parent does need a new living arrangement, but maybe you don’t have a spare bedroom, or your split-level house isn’t conducive to Dad’s bad knees and cane. Or perhaps Mom refuses to move away from the neighborhood she’s lived in for the last 50 years. Whatever the reason, don’t feel bad if your parents’ condition doesn’t make you want to swing your front door wide open—or if they don’t want to live with you either.
Fortunately, other good options exist. If Mom just needs help with activities of daily living—cooking, shopping, bathing, and dressing—consider hiring an in-home caregiver. Your local Area Agency on Aging can help you find a reputable hiring service that does background checks. The median salary for home health aides is $9.22 an hour, according to the Bureau of Labor Statistics.
If more serious health problems mean your parent needs 24-hour help, an assisted living or retirement community might be best. The median rent for a one-bedroom apartment is $2,575 per month, according to the Assisted Living Federation of America. Medicare only covers skilled nursing home care, not long-term housing. But if your parent meets certain low-income guidelines, Medicaid might assist with payment, although most assisted living facilities are paid for with private funds, either from the resident’s savings, sale of his home, a reverse mortgage, or help from adult children. To find an assisted living community near you, visit the ALFA Web site.
5. You may need a lawyer to help
Formalizing end-of-life planning, through living wills and powers of attorney, is the best way to ensure your mom and dad’s final wishes are fulfilled, according to a University of Michigan study. This is especially important when you consider that more than 25% of elderly people won’t be capable of making their end-of-life decisions, such as whether to sign a Do Not Resuscitate order.
So where do you start? An elder law attorney can help, not just by making sure you have all the right documents, but by being an impartial third party during conversations between family members. It’s a good idea to make sure your parents do this when they are still healthy, as part of those planning ahead conversations.
There are several important financial documents to have: first, a durable power of attorney that puts a family member in charge of financial matters; second, a revocable trust that designates how Mom and Dad’s assets should be used if they become incapacitated (such as to pay for nursing home expenses) and sets specific rules as to how the estate should be divided after their death. Since it’s revocable, it can be changed as life circumstances require.
“Revocable trusts allow people to avoid probate court,” Margolis says. “We find that clients try to do this in other ways. For example, a client will have six kids and name different ones the beneficiaries of different accounts. It becomes very uneven. But if it’s all in trust, you’ve got all the benefits of joint ownership. You keep it even and just say, ‘Divide it all by six.’”
You also might consider placing the elder’s home in an irrevocable (or “cannot be changed at all”) trust. This document essentially puts assets in a lock box that can’t be accessed by Medicaid. Why should this concern you? If Mom needs to go into a nursing home and qualifies for Medicaid coverage, an irrevocable trust shields her assets after her death. This makes it impossible for Medicaid to seek reimbursement from the proceeds of the sale of her home. In addition, if the family determines that it makes sense to sell the house after Mom moves to a nursing home, the proceeds of the sale will be protected.
6. Go to your parents' doctor with them
Have you ever asked your parent, “How did it go at the doctor’s?” only to hear more about how long the wait was than about any details of what the doctor said? If you really want to know what’s going on with your dad’s health, you need to be in the exam room with him. This will help both your parent and you better understand the medications, tests, and diagnoses your loved one is currently dealing with.
One survey found that over 70% of newly diagnosed Alzheimer’s patients don’t receive any drug treatment within the first year, when it may be most effective; patient denial may be one reason why. Bring a pad and paper and write things down. Don’t be afraid to ask questions, and don’t be shy about encouraging your parent to change doctors to see a geriatrician. The family doctor they’ve had for 30 years might not have the expertise your parents need now.
By meeting your parents’ physicians, you’ll also be at an advantage if an emergency strikes. At the doctor’s office, have Mom and Dad submit a list of all those they allow to inquire about their health status. Also give your doctor a copy of any living wills, health care proxies, or other end-of-life directives.
7. Sibling squabbles happen
In most families, siblings share an unequal caregiving load. Maybe you live closest to Mom and Dad, or you’re retired and your brother is still traveling a ton for work. Or perhaps Mom refuses to let anyone else but you help her with bathing and dressing.
Studies bear this out: While two-thirds of caregivers say that they share responsibilities with others, only 6% say that duties are split equally, according to the NAC report. To address this, Somers recommends sending out a list of everything your aging parent needs help with. Break it down into manageable jobs, such as “visit one Saturday morning a month” or “do the laundry,” and family members will feel less overwhelmed.
Don’t be a pushover either. “Some people would rather part with their money than their time,” says Somers. “So tell your brother to make a contribution, and then hire a cleaning lady to come in once a week.”
8. Distance is hard but not impossible
If Dad lives right down the street, running a hot meal over every night is pretty simple. But addressing daily needs is not so easy if he lives four states away. One in four caregivers lives more than 20 minutes away from his or her loved one, with 9% living more than 2 hours away. “If you’re doing this long distance, everything gets more complicated,” Somers says.
To make things easier, make a list of everything your parent needs help with. If in-home care is needed, check out www.eldercare.gov or www.seniordecision.com to check ratings for home health aide services and get referrals to programs that can help with nutrition, transportation, and housekeeping.
Technology can also help. Emergency response systems, such as Lifeline and MobileHelp, provide people with emergency care at the touch of a button. (Your parent wears a necklace with an emergency button; one push—if Dad falls, for example—calls a company dispatcher that can make sure he’s OK or send help). With Smart Home technology, you could install motion sensors to detect falls or a break in routine, such as the kitchen lights not turning on by a certain time each morning.
When you’re far away, it can be hard to gauge how well your parent is doing at managing daily needs. But there are clues you can pick up on by phone, Somers says. This includes retelling the same stories over and over, taking longer than usual to answer a question, and not socializing with friends. If you are concerned, talk to your parent’s doctor.
9. It's normal to feel burned out
You thought juggling work and a 3-month-old was tough? If you’re a caregiver, you know that’s nothing compared to balancing your job, your husband, multiple kids, and worrying whether Mom remembered her heart medication. As the to-do list gets longer and longer, the stress can be overwhelming.
Surviving all these demands requires that you ask for help, Mauger says. You’re not a failure if you need to hire a home health aide or cleaning service. The same goes for your home—ask your husband to pitch in more, and give teenagers some caregiving roles too. Something as simple as asking your daughter to make the afternoon phone call to Mom can not only knock an item off your list but help bring those two generations closer as well.
Also, don’t neglect the activities that nourish your soul. “Women have very little spare time even before they become caregivers,” Somers says. “And so the first thing to go are the activities that give you strength and energy, like having lunch with friends, going to the gym, to book club. But you need that support.”
As you do these things, don’t feel guilty that you’re choosing “you” time over “Mom” time. Nearly 20% of caregivers say that their role has affected their health. If you let the stress overwhelm you, you won’t be able to do all the things that you need to.
10. It's more rewarding than you think
Whether your time as a caregiver is a couple of months or several years, it provides a priceless opportunity to reconnect with your parents. Say to your mom, “I really want to know all the family stories. Tell me again how Grandma and Grandpa immigrated here and how you and Dad met.” Even if you think you’ve heard the tales a dozen times, you can take time now to ask questions or get details you wouldn’t have thought to when you were younger. Or have them walk you through old photo albums so you can share them with your kids and future generations of family.
These conversations aren’t just good for you—they’re beneficial for your parents too. It helps them recall good times and realize all the things they’ve accomplished in their lifetimes. Simply being around you and your family may help them feel content and proud of the legacy they’re leaving behind. And after all, what goes around comes around. If your kids see you taking care of your parents, you’re setting for them the ultimate example of how family helps each other out in time of need.
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