Caregiver’s Guide

As a caregiver, you provide for the needs of someone who is ill or disabled. Most often, you become a caregiver when someone is injured, or has an illness such as cancer, Alzheimer’s disease, or schizophrenia. You may not feel prepared to take care of things, but you feel that it’s the right thing to do.

Caregiving can be very hard work. There are often a lot of needs to be met and decisions to be made. It is a lot of responsibility. It can feel as if the person’s life depends upon you, and this may very well be true.

Caregiving can be stressful, physically, mentally, and emotionally. There may be times when it seems like too much for you. It’s important to also take care of yourself. It’s okay to say that you need a break or need help. Here are some ideas to help you and the person you care for.

Know what to expect

  • Learn about the person’s condition. This can help you better understand what the person can and can’t do, what symptoms to expect, and what kinds of things you will need to do.
  • Plan ahead. Make a list of things that you may need help with. For example:
    • Personal care, such as bathing, dressing, and helping the person use the toilet
    • Housework and yard work, such as cleaning, laundry, shoveling snow, and mowing the lawn
    • Meals, including a special diet or ways to prepare food (such as liquid diets or tube feeding)
    • Medicines, such as filling prescriptions, setting up pill boxes, and learning about side effects
    • Getting supplies, such as clothing, groceries, and medical equipment
    • Getting the person to appointments, including van services, getting a wheelchair or walker in and out of your car, and whether you can manage the person by yourself or will need someone to help you
    • Nursing care, such as changing a bandage, taking care of breathing tubes, emptying bags that collect urine or bowel movements, or giving shots
    • Making changes in the home, such as removing rugs that might cause falls, putting safety bars in the bathroom, or making a bedroom on the first floor
    • Financial matters, such as paying the person’s bills, understanding insurance coverage, and finding out about government or private programs that might be able to help
    • Legal matters, such as knowing if the person has a Durable Power of Attorney, living will, or an attorney.
    • Knowing who to call in various situations. When should you call the person’s healthcare provider and when should you call 911? What number should you call if medical equipment stops working? Who can you call if you need help with insurance?

    Once you have your list, think of people who can help with these things. Being the primary caregiver does not mean you have to do everything yourself. You probably know people who would be willing to help by getting groceries, shoveling sidewalks, or driving. Think of family, friends, neighbors, church members, and social workers or case managers who can help. Asking for help is not always easy, but it can keep you from being exhausted and stressed.

  • Accept that goals and needs for care can change from day to day. It can be less frustrating if you don’t expect things to always go smoothly.
  • If the person you are caring for cannot control what he or she says or does, remind yourself that the behavior may be a symptom of the disease. Don’t take it personally. Do not try to argue or explain.

Take care of yourself

Pay attention to your own physical, mental, and emotional health. If you are on duty 24 hours a day, there may be little or no time to care for yourself. This can lead to illness or burnout if you do not take steps to prevent it. When you take care of yourself, it helps you and your loved one.

  • Accept your own limitations and those of the person you are caring for, and ask for help. Sometimes people want to help but don’t know what they could do. Suggest something they can do that would help. Even if others don’t do things just the way you would, as long as they are helping, let them do it.
    • You might ask someone to sit with the person being cared for and watch TV or read to the person so that you can take some time for yourself.
    • Ask someone to stay overnight and take care of the person so that you can get a good night’s sleep.
    • If the person you are caring for is a veteran, contact the local Veterans Affairs office and ask what they can do to help. Your loved one may be eligible for financial benefits, or enjoy talking about memories of military service with another veteran.
    • If you need a break or need to go away for several days, contact local nursing facilities. They may offer respite care for your loved one for up to 2 weeks. You may need a referral from your healthcare provider, and insurance may or may not cover the person’s stay if it is not for medical reasons.
    • Check with churches and other organizations that may have volunteers who can drive the person to appointments or help with cooking or shopping.
    • Contact state agencies about counseling, social work services, and home care services. Home health agencies may have certified nursing assistants to help with bathing, changing bedding, and checking blood pressure, temperature, and pulse.
    • Call the National Eldercare Locator hotline (1-800-677-1116) for help finding community resources for seniors and their caregivers. This may include benefit issues, nursing facilities, transportation, and activities for older adults.
    • You might want to contract with a geriatric care manager. Geriatric care managers can assess needs, arrange for services in the home, help with financial management, and even take the person to medical appointments for you. They are experts about the services available in the community. No services are provided that you do not agree to. You can use their services one time, for a short time, or on an ongoing basis. The local Agency on Aging or Eldercare Locator can help you find geriatric care managers.
  • Take care of your emotional health.
    • It’s normal to have strong emotions when caring for someone for a long time. You may have times when you feel upset and frustrated or angry. These are common and normal emotions. It may seem like you can’t “take it anymore” or feel like you are “at the end of your rope.” It helps to take the time to think about things and not make any decisions while you are upset. It may help you to sort out your feelings by talking about them with a family member, friend, or counselor.
    • Lots of different things can bring on anger when you are a caregiver. This may include problems with the medical system or the demands of the person you are caring for. Anger is normal, but it is important not to show it in a harmful way. It may help to take a “time out” and leave the room for a short time. Deep breathing for a minute or two can help calm you down. Get professional help if you think your anger may cause you to hurt yourself or others.
    • Try keeping a journal. Write down your thoughts, frustrations, and anger. Journaling can be a good way to relieve stress. Also write down funny stories and good things that happen. Your notes can be a great source of comfort and joy.
    • Sometimes your loved one may attract attention when out in public. It’s normal and common to have feelings of shame or embarrassment because of this. Remember that it’s the disease and not the person that is the problem.
    • Think about your reasons for caregiving. Caregiving may be a way to help someone you care about. It may be a way to thank them for what they have done for you in the past.
    • Find ways to relax, for example, take up a hobby, listen to music, watch movies, take walks, or get a massage. Try deep breathing exercises or meditation when you feel stressed. Get out and have some fun once in a while.
  • Get support.
    • Join a caregivers’ support group. Talking with others and sharing problems and solutions really helps. You are not alone in your concerns.
    • Have regular family meetings to share feelings and information and make plans. If possible, include the person being cared for in these meetings.
    • Talk things through with a friend who will let you express frustration, anger, and tears.
  • Take care of your physical health.
    • Try to get at least 7 to 9 hours of sleep each night. Eat a healthy diet. Limit caffeine. If you smoke, quit. Avoid alcohol and drugs. Exercise according to your healthcare provider’s instructions.
    • Consider placing your loved one in adult day care for a few hours each day or each week so that you can take care of your own health.

Realize that in time, the care that is needed may be more than you can do. The person may become too heavy for you to lift, or may become violent. You may have health problems yourself that keep you from taking care of someone else. At this time, moving the person you care for to a nursing facility may be the best thing you can do. It may be hard emotionally but still may be the best choice.

The caregiver’s role takes a lot of time and energy. But there can be great satisfaction and joy in knowing that you did all you could for your loved one. The key is keeping a balance between taking care of them while still taking caring of yourself.

Developed by RelayHealth.
Adult Advisor 2015.1 published by RelayHealth.
Last modified: 2014-04-18
Last reviewed: 2014-04-06
This content is reviewed periodically and is subject to change as new health information becomes available. The information is intended to inform and educate and is not a replacement for medical evaluation, advice, diagnosis or treatment by a healthcare professional.
Copyright ©1986-2015 McKesson Corporation and/or one of its subsidiaries. All rights reserved.

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