There are few responsibilities more emotionally and physically taxing than taking care of a loved one with Alzheimer's disease. These tasks include bathing and feeding them, keeping them safe, performing household chores, paying bills and communicating with other family members and the medical community. Most caregivers take on this responsibility out of a deep sense of love, duty and devotion, but the daily tasks can be so consuming that they often leave one critical task undone: taking care of the caregivers' own physical and emotional needs. This oversight can cause caregivers to become "secondary patients" of Alzheimer's, which puts them at higher risk for developing high-blood pressure, cardiovascular disease, metabolic syndrome and reduced immune function.
If caregivers hope to provide effective care to a loved one with Alzheimer's, they must put their own basic needs first. It's analogous to the directive flight attendants give to parents in the event of a sudden decrease in cabin pressure: put your own oxygen mask on first. If you attend to your child first, you may pass out before you complete the task, leaving both of you doomed. Here are four strategies that can help caregivers help themselves:
1. Seek support. Attend a support group for Alzheimer's caregivers as soon as possible after diagnosis and then as often as you can. Now this suggestion may seem like adding one more time-consuming task to your already teeming schedule, but this is a resource that provides the kind of practical tips, knowledge, insight and psychological support that will benefit both you and your loved one in immeasurable ways. You'll learn how others deal with problems associated with caregiving; gain a better understanding of Alzheimer's and how it progresses and affects those with the disease; obtain information about available health and social services, as well as financial and legal resources; learn how to ask for help and better take care of yourself; and safely share feelings of guilt and frustration. What's more, you'll have an expanded network of people who understand and share your experience and are available to you whenever you need advice or someone to listen. With a little research or by asking your loved one's healthcare provider for a referral, you should have no trouble finding a group that meets your needs.
2. Assess yourself. Caregivers are so often focused on others that they tend to lose touch with their own needs. To become more aware of what is necessary to effectively care for yourself, take a quiet moment to sit down and write a list of the activities and interests that have always helped you feel energized and thrive. For most people, that means getting at least eight hours of sleep, good nutrition, regular exercise and some time to themselves. However, you might be someone who needs at least 9 hours of uninterrupted sleep, or you might need to spend time each day outside or at the gym. Or maybe your emotional vigor is contingent on daily prayer and church each Sunday morning. Also, consider the various tasks and responsibilities involved in caretaking and determine where you are strongest and weakest, and what you enjoy most and what you don't enjoy at all. You might be especially effective at nurturing your loved one and providing physical care but get stressed out over financial matters or dealing with doctors. Maybe you feel like you've got everything under control except when it comes time to shop for groceries. Perhaps your workload leaves you little time to cook nutritious meals or exercise. Making this type of list will arm you with the information you need to figure out what help and resources you need to meet your needs and more effectively care for your loved one-- and decide what tasks could be turned over to others.
3. Enlist help. To effectively provide care for someone with Alzheimer's, you must spread out the workload. Reach out to family, church members, neighbors and friends and ask them to help in areas that you can't handle. Not everyone is good at -- or comfortable with -- physically caring for a person with dementia, but most people are more than willing to support you in other ways. A brother-in-law, for example, might be able to take care of the bills and other financial matters. Ask church members or neighbors to bring nutritious meals, shop for groceries or pick up medications. A friend employed within the healthcare industry can help you fill out necessary paperwork or talk with healthcare professionals. Ask a neighbor or family member to sit with your loved one for an hour in the morning so you can take a walk or a nap. If your loved one's wanderings at night make it difficult for you to get adequate sleep, ask a family member to stay over one or two nights each week. And if suitable, talk to your employer about changing your hours or allowing you to participate in telework or flextime.
4. Take a break. When stress levels get too high or you're reaching your physical limits, consider professional help. There are a variety of new choices available. For example, there's respite care, a program that allows your loved one to stay in an assisted living community for a weekend or even a multi-week stay so you can take a break. Another option is adult day stay, a program available through assisted living communities or non-profit organizations that takes care of seniors during traditional business hours and can be utilized on a full- or part-time basis or just occasionally. Or you can simply hire someone to come in on a regular basis to provide some extra personal care for your loved one or to simply help with housecleaning and other daily chores.
Choosing to personally care for a loved one with Alzheimer's can be a noble responsibility to take on, but it is also one that requires a marathoner's mentality. If you try to do this at a sprint without the requisite support and personal care you need, you won't be able to complete the journey -- or you'll end up limping along while suffering both emotional and physical pain. Find ways to take care of yourself along the way. You and your loved one will both be better off for your efforts.
Dwayne J. Clark is the founder and CEO of Aegis Living, a community of 28 living facilities in Washington, California, and Nevada, and the author of My Mother, My Son: A true story of love, determination, and memories...lost (2012, www.mymothermyson.com).