13 Things You Should Know Before Becoming a Caregiver
Caring for loved ones
Every year, an estimated 43.5 million adults in the U.S.—about 60% of them women—act as caregivers in some way to a loved one. Half the time, they're taking care of one of their relatives, and most often it's an aging parent or parent in-law. It's a responsibility that won't always be easy, but it can be rewarding. Really. But before you jump (or are thrust) into the situation, it helps to know what to expect.
Call a family meeting
First things first: Assemble your caregiving team. That can include immediate relatives, extended family, or even close friends and neighbors, says Leah Eskanzi, a spokesperson for the Family Caregiver Alliance. Anyone who may be helping out with the responsibilities should be invited to this initial conversation—including your care recipient, assuming they are physically or mentally able participate. This is especially important if the person is in the very early stages of an illness like dementia, says Eskanzi. You want to involve them in any kind of estate planning while they can still make decisions. "You may also want to call in a third-party mediator or social worker to help run the conversation, particularly if you think there might be any disagreements," she says.
Make a plan
Unfortunately, this is something that many families avoid until it's too late. "The number one thing I've learned with family caregivers is that no one really plans," says Eskanzi. "We're such an independent society and we don't want to think about our loved ones getting a debilitating disease." Eskanzi's organization provides tons of caregiver resources for people who are just getting started—including this super-helpful Where to Find My Important Papers checklist, which can help families assemble (and locate) all the documents they'll need to take care of their relative.
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Think about whether you want to be compensated
When a family member falls ill, the responsibility of caregiving usually falls to the adult daughter, says Lisa Fredman, Ph.D., an epidemiologist at Boston University who has researched this subject. And since women often end up taking on the caregiving duties, their income and career may suffer. One survey found that about 60% of all caregivers have to adjust their work schedule around their new responsibilities, either by cutting back on their hours, taking a leave of absence, or more. You may not want to accept money for taking care of a relative, but if you do, consider setting up what's called a personal caregiver agreement. It doesn't have to be drafted by a lawyer, but this contract will need to be in writing and should contain a detailed description of your expected tasks and payments. You may need the money: Another survey found that the average cost of caregiving is $5,531 a year. Yes, a contract may sound clinical, but it may also spare your family from some inevitable fighting in the future—and that can be worth a lot more than money.
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Consider hiring some help
You might not be able to do it all. And that's okay. " Caregivers often feel guilty that they aren't doing enough," says Eskanzi. "They have an idealized image of what [the job] entails." That's where some in-home help can make all the difference. Whether you recruit an aide from an agency or hire a private worker, it's helpful to make a list of tasks that you'd like to delegate. (If it's possible, your relative should have a say in this as well.) About 40% of caregivers say that dealing with incontinence or diapers is one of their most difficult tasks; about 30% of them say helping their relative shower and use the bathroom are hard as well. Would you prefer if a non-family member tackled the bathing and dressing? Or if a professional managed all the medications and doctors' appointments? A little strategic help can make the whole experience seem easier.
Know the law
It's that subject no one wants to talk about. But if you're the primary caregiver, especially of a person who's suffering from an illness that causes memory loss, you might want to look into a document called power of attorney. (And yes, it's as serious as it sounds.) It's a legal authority that can allow you to make financial decisions on behalf of your loved one. The laws concerning power of attorney vary by state, so it can be a good idea to consult an elder law attorney—find one here—to prepare any documents. In addition, you should discuss advance directives, including a living will, which spells out the type of care your loved one wants at the end of life, and a health care power of attorney, which allows you to make health care decisions too.
Protect your back
Caregiving can be hard on the body. The constant bending and lifting can leave you with chronic back pain or other injuries. Hospital workers are trained to lift and move patients, and you should consider training too. Ask a physical therapist for back stretches and exercises to help prevent back injury and prevent problems before they get started. Also, get the right equipment to make your job easier, whether it's walker, hospital bed, or handgrips in the bathroom. Medicare will often cover the cost of renting "durable medical equipment," such as a wheelchairs.
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Reach out to your community
About 1 in 3 caregivers don't receive any help, either from paid workers or unpaid volunteers. But you'd be surprised at how many Good Samaritans are willing to lend a hand. Churches, synagogues, or schools often provide meals for elders and Meals on Wheels will deliver food to your door. Another resource is Eldercare Locator, which connects older people and their caregivers with local aging organizations; it's one of the best resources caregivers can have, says Cindi Hounsell, the president of Wiser Women, a nonprofit organization that helps women plan for retirement.
Don't underestimate the responsibility
On average, caregivers have been helping out their loved ones for 4 years. (And about 1 in 4 of them have been in that role for 5 or more years.) "In the beginning, you might think of yourself as 'just helping out,'" says Eskanzi. "But as the illness proceeds, the demands can keep growing." Not only that, but new health problems can crop up unexpectedly. Almost 40% of all people who are receiving care have more than one illness or health problem. You won't be able to predict everything the future holds, says Fredman. But you can ask for help and give yourself the occasional breather.
Don't beat yourself up about mood swings
They're normal. "It's common for caregivers to feel conflicting emotions," says Fredman, who points out that although these feelings can range the positive to the negative, it's the latter that really makes people feel guilty. Once you start taking care of a parent or relative, it's possible for anger, frustration, and resentment to creep in. All perfectly understandable. Consider some facts: About 50% of all caregivers feel as if they were forced into their role, 38% say they're emotionally stressed, and around 40% are performing medical or nursing tasks without ever being trained, according to a 2015 survey. Um, that's a lot of pressure. So forgive yourself for the times you lose your temper (and know that you aren't alone).
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Be patient with your other family members
It can be hard enough dealing with a brother or sister under normal circumstances—throw in the long-term care of a parent, and things can get ugly, quickly. "The experience can bring up unresolved issues," says Eskanzi. "And the caregiving can reflect the family dynamics." In other words, if you were the eldest or "responsible" sibling, your brothers or sisters may assume that you'll handle most of the logistics. On the other hand, if you're one of the younger children, your older siblings might not think you can handle the responsibility. Not only that, says Leah, "but siblings have different types of relationships with their parents—not everyone has been treated the same." Communication is key, but keep it healthy—don't try and guilt anyone or assume you know how they're feeling.
Take care of yourself
It sounds cheesy, right? But it's actually one of the most important things you'll do for the person you are caring for. Think about it: If you're healthy, you'll have more energy, strength, and a stronger immune system, says Laura Rice-Oeschger, LMSW, a wellness coordinator at the University of Michigan. Problem is, it's hard to pay attention to yourself when you're so focused on someone else. The guilt factor also enters into our consciousness: "We equate self-care with self-indulgence," she says. Caregivers experience more stress and are more susceptible to panic and anxiety disorders than their non-caregiving counterparts, according to one 2014 study from the United Kingdom. You'll have to be proactive. Mindfulness can help—research has found that caregivers who practiced this stress reduction technique were able to lower their anxiety levels by the end of the 8-week study. "Take 30-second breaks throughout the day and pay attention to all your senses, your posture, and your breathing," says Rice-Oeschgner.
Watch the video: A Meditation to De-Stress
Don't forget to get out once in a while
Taking care of a relative can crowd out your social life. Suddenly you find yourself spending more time at home and less time with your friends. That all adds up, which is why researchers caution that caregivers find themselves isolated from others—which then increases their stress levels. But not only should you try to maintain your old friendships, you should also try to seek out new ones, at, say a local caregiver support group, says Rice-Oeschgner. "Bonding is important for a healthy caregiving experience," she says.
Remember: This is a good thing
There has been a lot of talk about the negatives of caregiving. But for years, researchers have known that there are also benefits to looking after a loved one, too. "It's psychologically gratifying," says Fredman, whose research has found that caregivers actually live longer than non-caregivers. (This could be because people who are taking care of someone else tend to be healthy in general, but it's also true that altruism and volunteering is linked to longevity too.) In fact, one study found that caregivers receive a lot satisfaction from caring for a loved one—that it, in fact, "gave sense to their lives." Makes a lot of sense to us.