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Taking Charge of the Dementia Journey

Being a self-empowered daughter of dementia is about more than just feeling in control; it's about taking appropriate control of your own life and responses, despite the challenges of a dementia journey. 

In this blog post, we will explore six key characteristics that define self-empowered daughters of dementia. By cultivating these traits, you can navigate the journey with confidence, make informed decisions, and positively impact your life and the lives of your loved ones or parents with dementia.

What do you mean by taking appropriate control?

It isn't just feeling that you could take control if you needed to in helping your parent with dementia, it's literally taking back control of your own life and your own responses- despite a dementia journey. 

When people who are dealing with dementia are not dealing well with dementia, those people are literally just responding to their dementia journey. They are "along for the ride", but they don't have their GPS with them.

They have not given much, if any thought to how their dementia journey is going to unfold. 

Truth be told about dementia is that it is a journey. It is like a long, hard flight that will ultimately result in one outcome, and one outcome only. 

But that is life, isn’t it? 

Like the old saying attributed to Benjamin Franklin, who famously said, “In this world, nothing can be said to be certain, except death and taxes.” When we stop and think about a dementia journey, it really is no different to any other life process, except that it is.

And we know it. 

When you find out a parent, or a loved one has dementia, nobody really tells you what to expect. And much of what happens thereafter is a slow, slippery slope of just dealing with the changes (and the drama) as they come. 

Nobody tells you to stop, dear daughter of dementia, and make a plan.

But empowered daughters of dementia all have this characteristic in common: They have made some sort of plan. Even if it isn’t a perfect plan, even if the plan changes, they have made a plan. 

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Being an empowered daughter of dementia requires you to set a direction for your dementia journey, one where you know what you are willing and not willing to do to help your parents with dementia.

Once you identify what you truly are willing to do, you become empowered. And it requires you to take action on the back of your plan in a bid to actively achieve your ultimate goal of your dementia journey.

And as a result, you will have an impact on yourself, your life, and the way you respond to dementia. People who lack self-empowerment don't have any sense of control over what they experience, and are blown around by the slightest challenge in dementia.

They sit back and allow others to make their decisions, or they let the circumstances dictate their actions. They typically have low levels of confidence, and they frequently live in react mode. When I was living there, it was a terrible place to be. 

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The Characteristics of Self-Empowered Daughters of Dementia

  1. Self-Belief: Overcoming Dementia's Challenges

Self-belief can be hard, especially when it feels like dementia is dealing you blow after blow and you feel like you're always being knocked down and are just constantly reacting to what is happening. 

But self-belief is one of the key characteristics of a self-empowered individual.

And you can cultivate that by believing in your ability to be able to take care of each challenge, as it comes. The Bible teaches us that God uses all things for our good and his glory. And this also means a dementia process. 

It's believing that no matter what dementia throws at you, you are capable of getting through it, because you are a resilient daughter of dementia and a daughter of the King of Kings and Lord of Lords.

  1. Decision-Maker: Focusing on Your Sphere of Control

We all are seeking to exert control – the problem is that most people don't recognize that their sphere of control is limited. So, rather than focusing on what they can control, they expend energy trying to control everything else. You only have a limited sphere of control and within that sphere is your decision-making process.

Self-empowered people feel confident making decisions. They assess the available information and make a decision they're comfortable with. When people have deep insecurities they seek to control everything and everyone, to no avail

When you focus on your sphere of control and making the best decisions for your life, that's the hallmark of a self-empowered person.

And when dealing with dementia, that sometimes means making decisions that other people are not going to like. It also may mean making decisions that your parents are not going to like. 

But that is the nature of helping a person living with dementia. 

All you can do is do is make the best decisions you can with the information you have in hand, and keep moving forward towards your ultimate goal, whatever that might be for you and your family member with dementia. 

  1. Boundary Setter: Establishing and Reinforcing Boundaries

Empowered people know where their boundaries are because they have a deep understanding of their values, priorities, and sense of self. 

Empowered daughters of dementia know where their boundaries are, because before the crisis happens, they have sat down and thought through what I call the “if this…., then that…” parts of a dementia journey. 


What does that look like, you might be asking? 

For example, in my life: My husband and I have decided that we are willing to help my parents as they are getting older and needing more help. But we have decided within that decision, we are not willing to live with them, for various reasons. That means our “if this…, then that…” looks like this:

  • “If they need 24 hour supervision, then they move into the other side of the duplex.”

  • “If something happens suddenly that they need immediate help, then one of us goes to sleep at their place until the crisis is finished”.

  • “If we want to go on vacation, then we need to coordinate with my sister so that she can come help”. 

The ability to recognize boundaries is vital to establishing those boundaries with others and maintaining them. When someone starts to push or cross their boundaries, they feel confident reinforcing them.

Self empowered people are less likely to reach the burnout stage because they feel confident saying no to things that would be pushing them to their edge. 

Taking Charge of the Dementia Journey
  1. Growth: Investing in Knowledge and Personal Development

A key characteristic of self-empowerment is the ability to grow, adapt, and change. 

More importantly, self-empowered people recognize when it's time to expand knowledge, upgrade their own skills, and develop themselves. (Overwhelmed people frequently don’t do more than look for free resources, free advice, and free Facebook groups.)

Self-empowered daughters of dementia aren't afraid to invest in getting the help they need to navigate their dementia journey. They know that to grow, you need to change, and that it is always easier if someone else shows you the way than if you forge the path yourself. 


  1. Communication Expert: Effective Communication in Dementia

Confident communication is essential for self-empowered daughters of dementia. Learn how to "speak dementia" and handle conflicts constructively, even if it may be challenging. Additionally, master the art of effectively expressing your wants, needs, and boundaries. Strong communication skills will enable you to navigate difficult conversations with empathy and assertiveness.

  1. Action Takers: Turning Plans into Reality

Ultimately, every characteristic of self-empowered people boils down to this final characteristic – they are action takers. A dementia journey can get hard, but there is always a way to get through it and succeed at the same time.

Self-empowered daughters of dementia find the way, they make a plan, and they take action. 

And why wouldn't they? They have the self-belief they need to navigate their dementia journey, they have a plan and they know what they want and they feel confident making decisions that align with their desires.

When faced with the situations that want to derail their plans, they reinforce their boundaries and focus on what matters- their parents with dementia, and what they have decided they are willing to do in their dementia journey. 

And if their “Imperfect” Perfect plan doesn't work or it's unfolding differently than planned, a self-empowered person knows how to adapt and change as necessary, making their journey successful.

Conclusion:

In conclusion, becoming a self-empowered daughter of dementia is a transformative journey that allows you to take control of your life and responses, despite the challenges that accompany caring for parents with dementia. By cultivating self-belief, embracing decision-making, setting boundaries, prioritizing personal growth, honing communication skills, and taking action, you can navigate the dementia journey with strength, resilience, and purpose.

Remember, you are not alone on this path. To further empower yourself and gain valuable insights, we invite you to join our free workshop titled "From Overwhelmed To Empowered: A Workshop For Daughters of Dementia".

In this workshop, you will discover practical strategies, receive expert guidance, and connect with a supportive community of individuals who share similar experiences. Don't miss this opportunity to equip yourself with the tools and knowledge necessary to make a positive impact on your loved ones and yourself.

Register for our free workshop on May 25, 2023 by clicking HERE. Take the first step towards embracing your power, finding solace in shared experiences, and creating a fulfilling and empowered caregiving journey. Together, let's navigate the challenges of dementia with strength, compassion, and unwavering determination.

Remember, as a self-empowered daughter of dementia, you possess the resilience and inner strength needed to face any obstacle that comes your way. Embrace your role, empower yourself, and make a lasting difference in the lives of your parents and yourself. You are capable, you are powerful, and you are not alone on this journey.

Read More:

One Mistake A Dementia Caregiver Makes By Not Traveling With Kathy Smith Shoaf

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About the author

“Think Different” Dementia’s owner, Lizette Cloete, OTR/L graduated as an Occupational Therapist from the University of Pretoria in South Africa in 1992. Lizette has almost 30 years of experience as an Occupational Therapist in a variety of settings, the latest being in the home health environment. She enjoys teaching on the topic of dementia, most recently presenting at a national conference on the topic “Dementia Made Simple”.

Disclaimer: These blogs, videos and any work done by Lizette Cloete OT, as a Member of Think Different Dementia, LLC, is given only as educational content and consulting work. This does not create an Occupational Therapist-Patient Relationship. The educational content and consulting work performed should not be considered medical treatment as an Occupational Therapist. The consulting work does not take the place of medical work normally performed by a licensed Occupational Therapist. Please consult a licensed Occupational Therapist for medical advice.

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