Your Rights as a Caregiver

(American Health Assistance Foundation) In most cases, the primary caregiver of a person with Alzheimer’s disease will be a loved one, a spouse, adult child or close companion. Even in the early stages of the disease, caregiving is an extremely demanding, 24-hour-a-day task. Caregivers need to be flexible and understanding in dealing with changes in their loved one’s behavior and personality. They must also be able to communicate with family, friends and professionals about his or her condition.

Spouses who are caregivers are likely to be strongly affected by a diagnosis of Alzheimer’s, as they process the profound changes their future holds. Many times spouses have their own health problems. Further, husbands and wives often are required to reverse roles and take on unfamiliar tasks. Depending on their relationship, Alzheimer’s can bring couples closer together or it can alienate them. Finally, spouses need to accept that the person they have known and loved may change dramatically in personality and behavior, and there will almost without a doubt come a time when their loved one does not recognize them.

Adult children who are caregivers also need to adjust to the role reversal in caring for their parent. They may feel overwhelmed by the other responsibilities in their lives such as working within or outside the home and caring for their own children.

As distressing as an Alzheimer’s diagnosis can be, this is the time to begin to accept the future, build a support network, gather information to help alleviate fears and plan for the road ahead. Family members who do not live nearby should support the main caregiver and try to help with tasks that do not require them to be nearby.

Caregivers can greatly benefit from participation in support groups, some of which meet physically on a regular basis and others that interact virtually on the internet. Both offer advice, information, resources and comfort. Those in support groups have a common understanding of issues facing caregivers in similar situations. Many members become like family or close friends as they discuss common problems, coping strategies, and caring for oneself as well as the Alzheimer’s patient.

Or find a caregiver’s support group in your local area.

The encouragement and assistance of family and friends is especially important. Caregivers may appreciate getting together to discuss their feelings and may seek offers to help with various tasks. As much as possible, family members should be supportive of one another, offer assistance and respite to the primary caregiver, and stay up to date on the physical and emotional condition of the person with Alzheimer’s. Caregiver training and support groups can also be very helpful and are recommended. In some cases, professional counseling may be needed.

Your Rights

Caring for a person with Alzheimer’s disease is often a stressful and demanding ordeal. We need to remember that caregivers have human needs and emotions, and that they must care for themselves as well as their loved one. To help cope with the strain of caregiving, it is important to allow oneself to feel varying emotions, including negative ones, express them and deal with them.

Caregivers need to give themselves permission to be human. It is all right to:

  • BE ANGRY. Turn this energy into positive action. Clean a closet, take a walk, or talk with someone.
  • BE FRUSTRATED. Stop what you are doing, take a deep breath, and begin a different activity.
  • TAKE TIME OUT. Sit in a favorite chair in a quiet room, take a trip to the store, spend a few hours out with friends.
  • ASK FOR HELP. Explore family, friends, and local agencies for resource services. Many doctors’ offices and clergy provide referrals.
  • RECOGNIZE YOUR LIMITS. You are a valuable person. Take care of yourself, too!
  • MAKE MISTAKES. Because no one is perfect, and they help you learn.
  • GRIEVE. It is normal to be sad over the loss of the way things used to be.
  • LAUGH AND LOVE. Now more than ever it’s important to have meaningful connections.
  • HOPE. Tomorrow, the day may go smoother, a friend may call, and new treatments may be found.

Managing Caregiver Stress

Fulfilling and adapting to the changing needs of the person with Alzheimer’s, and dealing with unfamiliar behavior and practical matters takes a physical and emotional toll on caregivers. If these pressures are not periodically relieved, caregivers are susceptible to exhaustion, illness and depression. To avoid this, caregivers first need to recognize the signs of stress. Some warning signs include feelings of denial, depression, irritability, anger and anxiety, as well as physical signs such as trouble sleeping, exhaustion and health problems.

For many caregivers the more they learn about Alzheimer’s disease, the better they can cope. They learn to recognize the things that can be changed and accept those that cannot. They identify sources of help, let go of unrealistic expectations, adapt to their loved one’s changing needs and understand that a positive attitude can change a bad day into a better one.

There are many ways to reduce stress, some of which include: take time out to relax, engage in an enjoyable pastime, do one thing at a time, keep a list of tasks, write in a journal, maintain a sense of humor, eat right, exercise and get proper rest. Caregivers deserve to give themselves credit for doing the best they can in very trying circumstances.=

Resources for Caregivers

Many resources are available to those caring for loved ones with Alzheimer’s disease. These organizations and websites offer a wide variety of advice on:

  • Health, financial, and legal matters
  • Senior services and housing
  • Caregiving strategies and tips
  • Support and assistance for the caregiver

Many websites have databases to help find local services. See our list of Helpful Resources for contact information to organizations that offer caregiving support.


© 2000 – 2015 American Health Assistance Foundation.