The Challenges of Role Reversal in Caregiving

Jan 30

If you are a caregiver for a parent suffering from Alzheimer's disease, it can often be a jarring experience because of what is known as "role reversal" — when you find yourself in the role of a parent. Of course, you likely spent most of your life seeing your parent as a provider, protector, and decision-maker. Now, it is you who are in the role of being provider, protector, and decision-maker in your parent's life, working to ensure their dignity and uphold their wishes amid the trying circumstances of their declining abilities.

You May Be Grieving the Parent You Once Knew:
As your loved one’s Alzheimer’s progresses, you may feel that the parent you once knew is slipping away. Your loved one may not be able to recognize who you are, or recall events you both share. This slow decline may cause you to have feelings of grief even though your loved one is still alive.
You May Have Difficulty Accepting the Role Reversal:
This role reversal may be difficult to accept for both you and your loved one: As you find yourself in situations where you need to make decisions for your parent, it can be emotionally challenging to be the one making the routines, setting limits, and perhaps making life-altering decisions for your loved one. In turn, your parent may be unable or unwilling to accept the role reversal. Though it may be better for them, they may feel it takes away their independence.

You May Have Trouble Balancing New Responsibilities:
You may already be caring for a family and spouse, as well as balancing the demands of a career and your personal life. Taking on the new burden of managing the life of a parent could increase stress and potentially lead to caregiver burnout.
You May Begin Questioning Your Identity:
In many families the role of child and parent are a fundamental part of one’s identity, and when those roles flip, you may feel as though you are losing not only your parent, but also your sense of yourself. This change can be challenging, particularly if your parent was deeply involved in your life in the past..

As challenging as this shift may be, there can be growth opportunities in this change:

You May Find a Deeper Understanding and Compassion:
In your new role in caring for your loved one, you may come to see them with a new perspective, seeing them empathetically as a person, as well as a parent. You may find new appreciation for your moments together, and for traits and characteristics you previously overlooked or took for granted.
You May Find Joy in Forging a New Relationship:
The shift in roles may lay the groundwork for forging a new relationship with your parent, based on the new reality of your relationship. This may yield an opportunity to let go of previous disagreements and old grudges, and create a new environment that enables you to feel and express a greater gratitude for what your parent has done for you.

Here are some tips on how to navigate this changing relationship:

Think of Yourself as a Partner, Not a Parent
Make an effort to include your loved one in problem-solving and day-to-day challenges, as much as their illness and abilities will allow. Recognize their right as an adult to express opinions and where possible, let those opinions or expressed wishes guide your decisions, such as in creating, for example, an Advance Directive. Being included will give your loved one a sense of dignity. Remember, however, that as dementia progresses you may need to adjust their involvement. Over time, your loved one may be less able to participate in the decision-making process. For some loved ones, even in early stages, being asked to make a decision may be a trigger for anxiety.
Focus on Finding Success, Not on "Being Right":
Resist the urge to correct your loved one if they mis-remember an event or have difficulty with an activity. Instead, gently steer them towards a positive direction in the conversation, or find a simpler way to do the activity. Focus on things you can control, rather than on correcting things you can’t control.
Show Respect for Their Former Role:
Remember, even though your day-to-day roles have reversed, your relationship has not fundamentally changed. Your loved one is still your parent, and despite the impact of Alzheimer's disease, is an individual deserving of respect, caring, and loving support.

Related article: Caregiver Burnout: How to Cope