To Do ... or Not To Do? Caregivers as Advocates

Caregivers are often faced with problems that do not have clear and simple solutions. It would be wonderful to have a Caregivers' Bible that would provide easy answers to any question or dilemma you might encounter in your role as caregiver. Since such a book does not, and possibly cannot exist, it sometimes helps to explore issues and address concerns that many caregivers face.

Ethical dilemmas seem to arise quite often in the caregiving situation, although the caregiver may not identify them as ethical issues. A caregiver may be asked to act on behalf of the older person. Many elders have a great fear that they will lose control of their own lives. It is important to allow our loved one to have as much control as they are capable of handling. Let's address some of the difficult issues that occur and explore a few suggestions to consider in your own life situation.

As caregivers, we need to differentiate between the roles of advocate and of decision-maker.

An advocate represents a person's best interests and value systems and does not take control of that person's life. An advocate has the ability to look at the world through the older person's eyes, is sensitive to how that person has lived, and acts accordingly. When you are acting as an advocate, remember that your loved one has the right to make his or her own decisions as long as he or she is mentally competent.

At times, the decisions made by the older person may seem unreasonable to you, or may even conflict with your own values. When faced with this dilemma, it is helpful to keep in mind the following questions: "How does this person live their life? Is their behavior and the decisions they make today similar to those they made in the past? What has been most important to them in their life?" Answering these questions may give you some insight into how the person reacts or makes decisions.

For example, a person may have always saved money during their entire life, always doing without. Their savings represents security for them. Now this individual needs help at home but refuses to pay. Not receiving the help they need may mean they will have to be placed in a care facility sooner than if they had accepted help to remain at home. Furthermore, you, the caregiver, have to pay the "cost" both physically and emotionally if you are expected to do these tasks. This is a typical but difficult situation the advocate must face. Remember, a person has the right to make poor decisions---even decisions that seem to conflict with what they say they want---as long as the decisions do not endanger them. On the other hand, the advocate's role may become difficult if the loved one becomes mentally impaired. Although we need to keep advocacy and personal autonomy in mind, there are times when someone needs to take charge, especially when the older person endangers him/herself or others. At this point, the advocate may have to become a decision-maker. You may no longer be able to consult with the older person about their wishes. Their wishes may be harmful or put extreme demands on you. This role transition requires careful examination and can be emotionally difficult for the caregiver.

In Our Next Issue of Family Ties... " Do I Act... Or Do I Wait?"
We will address some of the issues and situations that caregivers may face as decision-makers: (1) how to deal with a loved one when they have made a poor decision which may endanger them; (2) how much control should a caregiver take in decision making situations.

Written by the Lincoln LIFE Office.