There are about 10 million people in the U.S. -- mostly women – who have chosen to take care of a loved one with Alzheimer’s disease. It’s a grueling job in itself, but many aren’t only caregiving. They’re also raising kids of their own -- and maybe working – at the same time.
“You’re already a parent to your children, and then suddenly you have to become a caregiver to your parent,” says Donna Schempp, LCSW, program director at the Family Caregiver Alliance in San Francisco. “It’s very hard to be constantly flipping between those different roles.”
For anyone in the sandwich generation, squeezed between the responsibilities of parent and caregiver, days are spent packing lunches and meting out medications, checking homework and filling out insurance forms. It’s not easy, and a caregiver’s marriage, family, career, and health will be tested.
But by learning about Alzheimer’s disease and doing some planning, you can make life easier -- though never easy -- for your loved one, your family, and yourself. If you’ve recently joined the ranks of the sandwich generation, here are some things you need to know.
Face It: You’re a Alzheimer’s Caregiver Now
So if you’re a person with a job, and a family, and a parent with Alzheimer’s, what’s the first thing you need to do? Accept that you’re not just a parent and worker -- you’re a caregiver too.
That might not sound like you. It might seem a little grandiose. You’re just taking your mom grocery shopping or dragging her trash cans to the curb once a week. That’s not really caregiving, is it? But experts say it is.
“Caregiving doesn’t just mean taking care of a loved one 24 hours a day,” Schempp tells WebMD. “If you’re helping a parent out with the basics of living, you’re a caregiver. If your visits have stopped being social and become a necessity, you’re a caregiver.”
Alzheimer’s Caregiver: 7 Things You Need to Know
Experts say that the sooner you accept your new caregiving role, the better. You and your family have a lot to prepare for. For instance, will your loved one move in with you? Do you have the finances to support care in a nursing facility? Here are seven things you need to accept about your future as a caregiver.
- Your loved one may live for many years. The life expectancy of someone with Alzheimer’s depends on the age of diagnosis. Many people with Alzheimer’s disease live eight, 10, or more years. Becoming a caregiver is a serious, long-term commitment.
- The demands of Alzheimer’s caregiving will increase. As the disease progresses, your loved one will need more and more help. “In the early stages of the disease, caregivers spend about 14 hours a week on average caring for the person,” says Guy S. Eakin, PhD, from the Alzheimer's Disease Research program at the American Health Assistance Foundation. “In the advanced stages, it’s literally a fulltime job -- 40 hours a week.”
- Caregiving will affect your job. According to Beth Kallmyer, MSW, of the Alzheimer's Association, about 50% of caregivers continue to work full or part-time. Two-thirds of them say that their caregiving had a significant impact on their career.
- Being an Alzheimer’s caregiver will affect your family. You may hope to shield your kids from your loved one’s disease and the responsibilities of caregiving. But in the long-run, you can’t. That doesn’t have to be a bad thing. There may be ways to get your children involved that will not only give you, the caregiver, support, but will benefit your loved one and the kids themselves.
- Caregiving will affect your finances. “Estimates for the average financial impact on a family for caregiving ranges from $16,000 to $70,000 a year,” Eakin tells WebMD. The range depends on whether the estimate includes the indirect costs, he says, like a caregiver going on leave from a job without pay.
- You can’t be an Alzheimer’s caregiver alone. Taking care of someone with Alzheimer’s is too much for one person, especially if you’re raising kids too. You’ll need caregiver support from your spouse, siblings, doctors, local and national organizations – and of anyone else who offers it.
- Caregiving requires skills. Caring for someone with Alzheimer’s disease doesn’t come naturally any more than piloting a submarine or lecturing on physics comes naturally. “Caregiving for someone with dementia isn’t intuitive,” says Schempp. “Sometimes the logical, natural thing to do is the wrong thing.” You need to learn about the disease, its treatment, and the legal and financial issues. Consult good Alzheimer’s disease web sites, books, healthcare professionals, counselors, and other caregivers. Don’t try to muddle through on your own.
Alzheimer’s Caregiving: Family Issues
It’s not easy to balance the needs of your kids and your loved one with Alzheimer’s. Here are some suggestions and things to consider.
- Explain the situation to your kids. Odds are, your kids have already noticed that something is off. So explain that it’s a disease that’s making your loved one behave strangely -- and that it’s not contagious. Stress that you will still be there for your kids, even if you’ll be spending more time caregiving.
- Involve your kids. According to a survey by the Alzheimer’s Foundation of American, 60% of the children of sandwich generation caregivers help out in the caregiving. Young kids can provide entertainment; older kids could help out by doing more chores around the house or driving your loved one to appointments. Of course, not all kids will be receptive to this. You might just hate the idea of burdening your kids with caregiving responsibilities. But sometimes circumstances give you little choice. And if the household functions better as a result of their help, everybody benefits.
- Meet as a family. Periodically, sit down with your spouse and kids to talk things over. How is the caregiving situation affecting the rest of the family? Things change. An arrangement that worked well for everyone a few years ago might not be working so well anymore. Meeting together with a professional -- like a case manager or a therapist -- can help, Schempp says.
- Sometimes, exclude grandma. A person with Alzheimer’s tends to become the center of attention, which can leave kids -- and other adults -- feeling overlooked. So although you might feel guilty about it, you need time away. Schempp suggests a weekly dinner out with just your spouse and kids to reconnect as a family.
Alzheimer’s Caregiving: Work Issues
Although half of caregivers keep working, Alzheimer’s caregiving is likely to diminish your performance and may sidetrack your career. Here are some things to think about.
- Evaluate your options. Even if your caregiving responsibilities aren’t overwhelming right now, start exploring what’s possible. How flexible is your employer? Could you shift to part-time if you needed to? Would working from home a few days a week be an option? What kind of eldercare coverage does your employer’s insurance offer? Learn what your options are before there’s a crisis.
- Look for a different job. If your current employer is inflexible, you may have to quit. That could sound like reckless advice, especially considering today’s economic climate. But you must accept the reality of your position. “Caregivers with demanding jobs who don’t own up to their situation just get increasingly stressed until they hit a breaking point and quit,” says Schempp. Better to plan for a job change than make it impulsively when you’re burnt out.
- Consider the benefits of a job beyond the paycheck. If you’re thinking about quitting, consider all the consequences. Eakin points out that if you stop working, you stop paying into social security; that means that you could be risking your own financial security later in life. Also, a job -- with responsibilities away from home and contact with coworkers -- can be a reprieve from the demands of caregiving. Losing that outside connection can be very hard.
Alzheimer’s Caregiving: Taking Care of Yourself
If you’re taking care of children and someone with Alzheimer’s disease, you need to take care of yourself too. You’ve probably heard that before. In fact, you’ve probably heard that a hundred times before.
And your natural reaction might be something like: “I have to take care of my mother, work a full-time job, and raise two kids who have school and dance lessons and soccer practice. I don’t have a spare minute in the day to take care of myself.”
But this isn’t fuzzy, touchy-feely advice. It’s a stark fact. If you want to keep taking care of your family and your loved one, you need to keep it together. To keep it together, you need to give yourself breaks. Here are some things to keep in mind.
- Caregiving has a toll on your health. Caregivers have a higher risk of depression, anxiety, other illnesses, and early death. But according to surveys, caregivers routinely underestimate the effect it has on their health. Look at it this way: being a caregiver is a risk factor for health problems, the equivalent of taking up a risky habit or job, like smoking or lion taming. You need to work extra hard to stay healthy, mentally and physically.
- Consider the consequences to your family. If you push yourself too hard, and get pneumonia or become seriously depressed, what would happen? If things seem bad now, just imagine how bad they’d be if you were out of commission in the hospital. Who could take care of your family then?
- Think of the benefits. Getting other people to help out doesn’t only help you. “If the person with Alzheimer’s is going to the day center, or spending time with someone else, it gives them a chance to engage with other people,” says Kallmyer. “That’s really important.”
So what are some ways of coping with stress when you’re an Alzheimer’s caregiver?
- Stay fit. It’s not easy when you’re stressed, but try to eat with moderation. Activity is key for physical and mental health. If you have the time, take a hike or a yoga class. If you can’t, just squeeze in 20 minute walks or an at-home exercise program.
- Get away. Spontaneous get-togethers with friends are great, but they may be hard to pull off. So, plan. Get someone to watch the kids and your loved one while you go out for lunch, a shopping trip, or a night at the movies.
- Create a sanctuary. Eakin suggests that you set aside a room in your house -- or some part of a room -- as a place to get away from the demands of your life for a few minutes every day.
- Get emotional support. On top of your caregiving chores, you may also feel terrible grief as you watch a loved one slip away from you. Don’t ignore those feelings. Talk to family and friends. Call a hotline or schedule an appointment with a therapist. Look into local support groups for caregivers.
Of course, getting time for yourself hinges on getting help from others. “I think Americans have trouble asking for help,” says Eric J. Hall, president and CEO of the Alzheimer's Foundation of America in New York City. “But you really cannot take care of your loved one by yourself.”
When you’re overwhelmed, it’s easy to get locked into your habits, to keep doing things the same way even if they’re not working. But try to keep some perspective and think of creative ways to get help. At the very least, reach out to some of local and national organizations for Alzheimer’s caregiver support.
Schempp says that sometimes it’s not so much an issue of asking for help, but accepting it. What’s her advice for overworked women and men in the sandwich generation? The next time you run into someone -- anyone – who politely offers to help, don’t assume the person doesn’t really mean it. Don’t modestly decline. “Just say yes,” she says.