Code of Ethics for Family Caregivers
Family caregiving is not a real profession. You are not an employee on the payroll. Your choice to care for an elder family member is not motivated by a monetary reward or ego. You are doing this out of love, respect, and affection for your family member.
Note that there is no standard or legal code of ethics for informal or family caregivers residing in the US. Professional caregivers and nurses indeed have a code of ethics that they have to follow. And there are legal implications if they fail to do so. Such is not the case with you— an informal/family caregiver.
In this post, I share the code of ethics that I personally follow as a caregiver. The points I make may not resonate with you. But my goal is to offer you a general guide to help you make better caregiving decisions. This is not an official or legal document. I am simply sharing my personal views on this subject.
The following are the code of ethics for family caregivers
1. Respect their individual rights
Every person has the right to make life decisions. As a family caregiver, you must inform the person you are caring for about their rights as a US citizen.
Knowing individual rights will help them choose the right course of action as they get older. Needless to mention, you will have to intervene from time to time, but make sure to respect their choices.
The United States Declaration of Independence gives them the right to choose their religion, speak freely, etc. Talk to them about their current religious beliefs. Drive them to the place of worship if they wish to pray.
Lastly, I know this one is really difficult but let them speak their mind. A dementia-affected person can be mean sometimes. But do not take it personally when they use harsh words. But be helpful whenever needed.
2. Involve them in decision making
An elderly person can feel helpless when their caregiver is making all decisions for them. As you already might know, dementia leads to progressive deterioration of the mind.
The person can function well in the early stages of the condition— some can live a decent life in the middle stages. It is the later stages when you as a caregiver have to make all the decisions for them.
In the early and middle stages make sure you do not treat the dementia-affected person like a child. Involve them in both important and less important decisions. Keep them in the loop. Ask them questions and opinions.
Furthermore, a person with dementia (in all stages) must be able to function autonomously. A family caregiver is there to assist them with the activities of daily living— and sometimes in decision making.
3. Do good for the person you are caring for, do not harm them in any way
This is an obvious one, but I had to add it to the list.
Caregiving is not easy. It comes with a ton of challenges. Although you have chosen to care for a loved one, there will be times when you will feel frustrated, angry, and disappointed with the circumstances.
In these tough moments, you must recall good memories you had with your loved ones in the past. Do not let the current circumstances affect your thinking. Do not lash out at them, do not hurt their feelings. Stay calm, and wait for the difficult moments to pass.
Also, note that other family members may find it hard to invest time caring for an elder in need. They may want to focus exclusively on their career, school, or other commitments. Allow them their freedom, but make sure they have the key details related to the dementia-affected person’s condition.
4. Be committed, do not neglect or abandon them
It is no secret that families who function based on trust, commitment, and accountability experience a greater degree of togetherness in the long run. Some family values may vary based on certain factors but the aforementioned ones are universal.
Keeping a committed relationship is vital if you are a son, daughter, or spouse to a dementia-affected person. Without you, they may have nobody willing to make major self-sacrifice. This is what makes family caregiving a challenging task.
You must also acknowledge the loss of mutual accountability when you are caring for a dementia-affected spouse. You must accept the fact that you are the one doing most of the work in a relationship. And you will continue to do so out of love for your spouse.
I get that everyone has their own opinions on this subject. I don’t want to sound preachy. But I feel when you marry someone you are prepared for both good and bad times. I would recommend you stay committed to this relationship.
Summary
I wish there was a standard code of ethics for family caregivers. But since there isn’t, it is us caregivers who must come up with one that benefits the dementia-affected person. The code must act as a reminder during difficult times when we are struggling to think clearly.
I personally feel newbie caregivers should bring up this topic during their weekly caregiver support group meetings. The correct code of ethics for family caregivers is developed with time and experience. Your fellow caregivers you meet on weekly meetups will have a lot to share.
