By Angela Hsu M.D.
Hsu is a board-certified geriatrician and internist with the Mid-Atlantic Permanente Medical Group. She sees patients at the Kaiser Permanente Tysons Corner Medical Center.
Imagine a loved one who has been a huge part of your life, such as a spouse, parent or sibling. Now imagine you must watch as the foundations of their identity fade away while you shoulder the immense financial and emotional burden of caring for them in their final years. This is the toll that Alzheimer’s disease takes on caregivers, and as a geriatrician, I see the impact every day. The strain can be enormous and, too often, invisible. Caregivers live with chronic stress, and as they focus their attention on their loved one, their own health often suffers.
In my practice, I see the stress impact caregivers in many ways. There is the emotional stress of watching your loved one decline, changing from vibrant person you once knew to someone who may not even recognize you. And there’s the financial burden. Many caregivers must contend with a loss of income as well as the added cost of paying for care. Most people receive their care at home from family, requiring caregivers to miss work or even leave their jobs. And if long-term care is eventually needed, the cost can be astronomical.
Family dynamics can also be a source of stress. Sometimes your spouse may resent the amount of time and energy you devote to caring for your mom or dad. Or you may feel angry that your siblings or children aren’t doing more to help and that you bear a disproportionate share of the load. It’s quite common for caregivers to struggle with guilt; you might worry you should be doing more for your loved one, or feel badly when you inevitably lose your patience or get angry. All this stress can have a massive physical and emotional impact, which is often exacerbated by a lack of sleep and exercise.
As a caregiver, it is vital to take care of your own health and well-being. Fortunately, there are concrete steps you can take and a variety of resources that can be helpful.
Understand What to Expect
First, I encourage the families I work with to educate themselves about the disease. Learn about how it progresses and the symptoms of various stages so that you are not surprised. Alzheimer’s is complicated, can change quickly and affects each person differently. While memory loss can be mild at first, sometimes it worsens almost overnight, making it impossible for your loved one to continue driving or handling the family finances. Some people with Alzheimer’s begin wandering, and others find themselves growing angry and combative. Coping with these changes requires vigilance, understanding and adaptation. And at some point, your loved one will probably require care beyond what you can provide on your own, so it’s important to learn about community resources and care options before a crisis occurs or you reach your breaking point. There is a plethora of information available on the Alzheimer’s Association’s website.
Establish a Support System
Establishing a support system, in whatever form works best for you, is also very important. Some caregivers bring close friends and family members to educational events. This helps the members of your support network learn what they can do to help you and your loved one.
I also strongly encourage families to become part of a support group. Sharing the ups and downs with people who are going through the same thing you are experiencing can help lighten your load and remind you that you’re not alone. Some caregivers I work with aren’t comfortable talking to others in person or may feel like they can’t leave home long enough to participate. Fortunately, there are online communities, such as the Alzheimer’s Association’s ALZConnected, that you can access from home. These communities can be tremendously helpful in easing some of the frustration, grief and self-doubt that so many caregivers experience. The Alzheimer’s Association and AARP also have a free Community Resource Finder that can connect you to available services nearby.
Find Time for Self-Care
Finding time to relax and exercise is also crucial, but it easily gets lost in the day-to-day struggle to meet the needs of your loved one with Alzheimer’s disease. Practicing meditation or mindfulness for a few minutes each day can help you find some level of calm—even when everything else feels out of control. There are many good apps available to help guide mindfulness techniques, or, if you can get out of the house, sign up for a course in yoga or meditation at your local community center or YMCA. Even something as simple as keeping a gratitude journal can help remind you that, even when things are at their darkest, there are bright spots in your life to cherish.
Keeping yourself healthy is vital, and that requires eating well and getting exercise. Aim for 30 minutes of exercise a day. If your loved one is still mobile, try a walk outside together in the fresh air, or a stroll around the mall. If you need to stick closer to home, pull out a yoga mat and do some stretching exercises, or hop on a stationary bike while your loved one watches TV or listens to music. Taking some time for yourself—even if just to go to the grocery store or to run errands—will improve your mood dramatically. If family members have offered to help, take them up on it and develop a schedule that gives you some time outside of the house each day.
Getting enough sleep is also important, so while it’s tempting to do housework when your loved one is napping, you might be better off grabbing a nap yourself at the same time. And don’t let your doctor’s appointments slide. When you do see your doctor, be sure to share what you’re going through since this could shape the treatment plan that he or she develops for you.
One thing that’s particularly heartbreaking about Alzheimer’s disease is that it changes aspects of our loved ones that we once viewed as core to who they were. Let yourself grieve for the person you are losing or have lost. It’s important to remember that if your own health suffers—if you do not give yourself the space you need to stay healthy and balanced —you cannot provide the care your loved one needs.
If you are a caregiver for a loved one with Alzheimer’s disease, find tips for relieving stress and anxiety on the website of The National Institute on Aging. To learn more about resources available, including support groups, visit the website of the Alzheimer’s Association.