Jennifer Reeder, LCSW
Jennifer Reeder, LCSW is the Director of Education and Social Services at the Alzheimer’s Foundation of America, based in New York. alzfdn.org.
Caring for yourself is the first step to caring for a loved one with dementia.
Caregiving for a partner with Alzheimer’s disease or another form of dementia is one of the greatest expressions of love, but it is also one of the most challenging. All too often, all of a caregiver’s energy is focused on their loved one, with none left over for the self-care that will keep them healthy and strong. Here are ways to put yourself back into the equation.
Ask for help. Take a fresh look at what your loved one needs and what you need, and then be realistic about what you can accomplish. It’s just not possible to do everything yourself. Prioritize, set practical goals, do your best to achieve them, and take things one day at a time. Ask close relatives or your adult children to help out so you can have some “me time” (be specific about what you need and when you need it). It may be time to hire a home health aide if you haven’t already.
Cultivate acceptance. If you often feel uptight, aggravate easily, or try to fight a situation you can’t win, find ways to relax and go with the flow. This is important because your attitude influences both your and your loved one’s stress levels. Some things, like the progress of dementia, are totally out of your control, but you can control how you respond to these changes. Explore mind-body relaxation practices that relieve stress, offer a gentle workout, and incorporate the concept of acceptance. Yoga, tai chi and meditating are great examples.
Stop neglecting yourself. A poor diet, a lack of exercise, and lack of sleep can all exacerbate stress (and cause health problems). Make it a priority to get sleep, eat right, drink plenty of water, and find ways to be active. Self-care is not selfish: It’s essential and it benefits both you and your loved one.
“Compassion fatigue” often affects therapists and other mental health providers, but family caregivers experience it as well. The term is often a more accurate description of how you feel than “burnout” because it stems from a place of caring and reflects not only your own experience, but also the emotions and the experience of the person you’re caring for because you take them on as well. Compassion fatigue shows up in many different ways:
Problems meeting responsibilities. If you work outside the home, your job performance may be suffering because you can’t get your work done or you’re missing a lot of workdays or arriving late. At home, you may be having a hard time keeping up with the household demands, from cleaning to paying bills.
Emotional distress. You may become more anxious or irritable. You may feel that you’re not doing enough or that what you’re doing isn’t the kind of support you want to provide to your loved one. This can escalate to feelings of guilt or depression: You may start to withdraw from the things that you always enjoyed doing because you don’t have the time or the motivation.
You may stop seeing your loved one as a human being who needs your help, but rather as a set of tasks that need to get done or as a source of stress. Your patience may wear thin, you may not be emotionally available for your loved one, or you may start to feel resentment toward them. You may misuse substances. For example, maybe you used to enjoy a couple of glasses of wine, but now you’re drinking a full bottle of wine every night.
Health problems of your own. You may get sick more often, not get enough sleep, or find yourself tired all the time. You may stop taking care of yourself and fail to keep regular medical appointments.
Doing nothing is not an option. There’s a reason airplane safety guidelines tell you to put on your mask first: You need to take care of yourself in order to provide the best possible care for your loved one, and often that means tapping into outside resources for help.
Reach out. Don’t keep stress bottled up inside—that only makes it worse. Whether it’s with a friend, a family member, therapist or social worker, talking to someone about what you’re going through will help you de-stress and find solutions to the caregiving challenges that are taking their toll on you. This is especially important if you’re in a place of deep anxiety or distress and need to make serious decisions, like getting a higher level of care for your loved one.
Realize that it’s O.K. to pick up the phone and ask for help. It’s not a sign of weakness or failure. The Alzheimer’s Foundation of America (AFA) helpline is staffed with licensed social workers trained in dementia care who are available to offer guidance and support or even just listen. Many people initially call for practical help with a problem and, as they share what they’re going through, it organically turns into a moment of counseling, and they start to realize how helpful that is.
Tap into community resources. Though these vary from state to state and town and town, you may have access to transportation to doctor visits, Meals on Wheels, adult daycare for your loved one (to give you a rest), and other benefits. Start with your local Area Agency on Aging. Find yours at eldercare.acl.gov. The AFA can also connect you to resources, including how to find different medical specialists, long-term care facilities or assisted living communities, and support groups in your area.
Know your baseline. It can be very helpful to assess how well you and your loved one are doing and highlight your strengths. Today, for instance, you might mark down that food is being bought, bills are being paid, and the house is being cleaned. If you start to see a dip in any way from that baseline, you know it’s time to problem solve. The answer may be as simple as hiring a home health aide for a few hours a week to help with chores so that you can focus on more important things.
Develop practical ways to address sundowning and wandering. These are two of the more challenging behaviors you’re likely to face. If your loved one is starting to show signs of sundowning, such as aggression, agitation, or irritability in the late afternoon or early evening, try engaging them at that time with a favorite activity, playing soothing music, or watching movies to ease their mood and behaviors.
Problem-solving around wandering could involve doing physical activities together. Wandering is really the act of walking: Your loved one needs to be able to walk and get physical, social, and mental stimulation, so ensure that he or she is able to safely go for walks outside or even within the home. It’s all a question of how to frame the behavior or the symptoms that you’re seeing and focus on the root cause for solutions.
When wandering is a problem, create a safety plan of concrete steps to take. Some of these might be low-tech—asking neighbors to contact you if they see your loved one walking alone and creating a list of places they’re likely to go, such as previous homes and past places of employment. Others are high-tech, like door alarms that let you know if your loved one is trying to leave, and having them wear a GPS device so that you can find them as soon as possible if they do walk away.
Your plan should remind you to tell 911 operators about your loved one’s dementia and behavior traits so that emergency personnel respond appropriately if he or she is agitated or aggressive.
Find out if your community works with Project Lifesaver (projectlifesaver.org), a program that provides technology to quickly locate a person with dementia if they go missing.
Schedule a home assessment. It’s not always easy to acknowledge when you can’t realistically continue taking care of your loved one on your own. One natural way caregivers try to compensate is by lowering their expectations of their loved one. This helps them feel like they’re still on track and that the person is doing well at home. It takes a specialist, like a geriatric care manager or a dementia care coordinator, to objectively evaluate the situation and help identify what isn’t working well for your loved one or you. There may be physical needs, like lifting your loved one on and off the bed, that may be too hard for you, or you may need higher-level strategies for sundowning and wandering, for instance.
Recognize your needs when it’s time for a change in living arrangements. Considering a memory care residence or assisted living community for your loved one involves complex decision-making. Some partners made the decision years earlier that if one needed such care, they were both going to go. But that’s not the only option. Be honest about your feelings. If you really want to stay in your home, giving it up could lead to resentment. There is strength in acknowledging that what might be safe and comfortable for you is different from what’s safe and comfortable for your partner.
Also, the change for your partner can be empowering for the relationship because many tasks that you had to do for him or her will be done by the long-term care staff. You can re-engage in your role as life partner once you’re not the caregiver. That’s why you want to choose a care setting that offers opportunities for what you want to do as a couple, whether that’s privacy for intimacy or the ability to continue with art or fitness activities you like. Really think about what’s important in your relationship so that the help you get supports it.
The AFA is a nonprofit nationwide organization whose mission is to provide support, services and education to individuals, families and caregivers affected by Alzheimer’s disease and related dementias. The AFA also funds research for better treatment and a cure. Its services include a helpline available seven days a week by phone at (866) 232-8484, text message at (646) 586-5283, and web chat at www.alzfdn.org. It’s staffed entirely by licensed social workers who are specifically trained in dementia care who can provide information about caregiver support groups, educational programs, and publications for caregivers.
