Changing Roles & Relationships

You are a mother or a father, a son or a daughter, an employee or a homemaker. These roles and relationships are such a part of us that we seldom give them much thought. We simply accept them – until mild to moderate Alzheimer's disease causes them to change. And with this condition, certain changes in roles and relationships are to be expected. A once-independent spouse or parent may have to accept help for the first time in his or her life. A child may have to support the parent who has always supported him or her. These adjustments can be difficult to make, especially at first. But you can make adjustments that benefit both of you if you keep your partnership in mind.

The changing relationship between the person with mild to moderate Alzheimer's disease and the caregiver is a lot like the relationship between two ballroom dancers. When a couple dances, one person is the leader and the other is the follower.

In your relationship now, the caregiver may have to do a little more leading and less following. And the person with mild to moderate Alzheimer's disease may need to find a way to follow that is comfortable.

Fortunately, Alzheimer's disease usually progresses slowly, and in most cases you can shift your roles little by little. Being flexible is required. That is usually true for successful relationships. So, if you can stay flexible, you are likely to find ways to be close to each other. And that is staying connected.

The mild and moderate stages of Alzheimer's disease will bring changes in overall functioning. These changes can alter accustomed roles for both of you. You may need to adjust your relationships, both with each other and with others in your life. If you work together, you will find that there are many steps you can take to cope with these changes.

Issues to Think About - Steps You Can Take

People at this stage of Alzheimer's disease may be able to continue in some of their most important roles. Relationships may change because of changing abilities.

Issues the Person with Mild Alzheimer's Disease May Face:

• Changes in communicating may make it difficult to express your thoughts and feelings. This may lead to feeling angry, frustrated, or lonely
• Sharing the diagnosis with others may cause you to worry that they will act differently with you
• Hiding the diagnosis or not telling it to others may cause fear that your symptoms will be discovered. This can lead to social isolation and being depressed

Issues the Caregiver May Face:

• Changing abilities may require the caregiver to take over some unfamiliar tasks, such as paying bills, cooking meals, or driving
• Communication difficulties that cause the person with Alzheimer's disease to feel lonely can create the same feelings for you

Steps the Person with Mild Alzheimer's Disease and the Caregiver Can Take:

• Determine whom you will tell about the diagnosis, and how you will do so. See below for things to consider
• Get support for your feelings. Talk with each other, or talk with friends, family, or professionals
• Continue to do familiar things that help you feel connected to each other, such as preparing meals, or visiting family
• Address your needs on a spiritual level by attending religious services or reading special passages together

Issues to Think About - Steps You Can Take

People at this stage may have more difficulty taking care of themselves, which may require bigger changes in roles and relationships. Finding a comfortable balance between independence and increased assistance will require flexibility from both of you.

Issues the Person with Moderate Alzheimer's Disease May Face:

• Having to let go of some responsibilities, such as cooking meals for the family or paying bills
• Feeling lonely or isolated as a result of giving up all or part of their important roles and responsibilities

Issues the Caregiver May Face:

• Feeling more alone in having to manage daily tasks and responsibilities
• Feeling uncertain about making decisions without input or guidance from the person with moderate Alzheimer's disease
• Feeling uncomfortable doing some of the personal tasks in helping with daily care, such as bathing or dressing

Steps the Person with Moderate Alzheimer's Disease Can Take:

• Share your feelings using words or gestures, such as a hug or smile
• Ask others to help you find ways to keep doing things that you enjoy
• Allow others to assist you when you need help

Steps the Caregiver Can Take:

• Ask family members or friends for help. Perhaps someone can assist you or take on responsibilities that you find challenging

Telling Others About the Diagnosis. Things to Consider:

• In some instances, the person with moderate Alzheimer's disease may not have been told his or her diagnosis. Consider talking about it with him or her, even if you use words such as "memory problems" instead of "Alzheimer's disease." Talking about the diagnosis allows for involvement in future plans
• Consider sharing the diagnosis with others, even if you are reluctant at first. Doing so will help you to gain support from others. It also relieves both of you of having to pretend that everything is OK
• Talk about how you will tell others. You may want to tell select friends and relatives one on one. Or you may want to write a letter, as President Reagan did when he received his diagnosis
• Expect that some people may not believe the diagnosis at first. Alzheimer's disease is in many ways "invisible," particularly in its early stages. Often, those who have it appear healthy. The symptoms are not always apparent
• Be prepared for the possibility that lack of understanding about the disease may cause some friends and family members not to know how to respond to your news
• Let people know that calls, cards, letters, and visits are welcome. Tell people what the best times for visits would be
• Be ready with a list of suggestions for those who ask how they can help