December 5, 2023

As you begin to navigate your personal Caregiving Journey, keep in mind that the road is long an winding and will be filled with so many unexpected changes.  Additionally, as a care partner, the role we hold in our relationships needs to adapt as our person goes through the stages of change from whatever physical, emotional or spiritual challenge they’re facing. Whether their change occurs simply as a function of age or worse, trauma or illness, the situation becomes complicated as things progress.

What’s more, if Dementia enters the picture, this transition intensifies because Dementia reshapes how someone perceives and interacts with the world.  As it progresses, caregivers slowly adapt to these changes.  Little by little, we find ourselves recognizing that we’re at the point where significant change in the health and well-being of the one we love has left them unable to safely function on their own without some assistance.

Now, understanding and adapting to these changes is not just a matter of responsibility; it’s a complicated dance of awareness, adjustment, compassion, strength, and commitment. Whew!  For this reason, I felt that providing a guide for families living with and managing dementia could help.

The Shift in Perspective
When health changes, so does our perspective. Our priorities shift.  And when dementia is part of the equation, our ability to both recognize and acknowledge the changes happening to us can be impaired or completely vanish.

This is called Anosognosia – a neurological condition whereby the patient has no awareness of their changes.  We assume our people are being stubborn, not acknowledging the changes, but the reality is, their brain has changed, no longer allowing them to recognize the changes happening to them.  In fact, the ability to empathize or see things from another’s point of view can also disappear. This transformation is very difficult for care partners to accept, especially when our person still seems to be functioning and communicating pretty well most of the time.

The reality is, less than half of the people living with Dementia can recognize that they are changing.  With this in mind, it’s crucial for families to recognize and understand that the way we communicate with our loved one needs to change.

Respecting Autonomy vs. Recognizing the Need for Help
When we love and respect someone we don’t want to overstep and cross that invisible line that defines some parameters of our relationship. In the desire to respect the autonomy of our loved ones, families let them lead their own way, even when the path leads to adverse consequences. The aftermath can be heavy, involving time, money, hospital stays, and emotional stress. The challenge lies in respecting their wishes while acknowledging the repeated signs of needing help – be it through falls, forgotten medications, the water left running, or unattended stoves.

When physical issues, hospital visits and side effects from medications not being taken properly are recurring, these incidents are not just accidents; they are silent pleas for assistance. You would be shocked to know how many times these glaring calls for help are unintentionally ignored. We are avoiding; we are wishing it wasn’t happening. Our goal of providing constant vigil (respect) can slowly fall into the unintended trap of neglect. This is where it gets hard.

Finding the Right Time to Step In So, when is it appropriate to step in? The answer lies in balancing safety and dignity. When safety becomes a consistent concern, it’s time to reassess and adapt. When safety is consistently absent from the daily routine, THAT is your impetus for change. This doesn’t have to be a subjective decision; often, the circumstances themselves indicate the necessity for change. You will feel justified in having a conversation to get the ball rolling, or more assertively move into the next gear.

Assessing the Situation
Take a moment to evaluate your family’s circumstances. What has changed? What’s causing worry or discomfort? How small or significant is the change and/or the risk? Do you ‘see’ options that can make the situation better? Can they be resolved in the home, or is a more significant change necessitated? Are you only holding back because of a commitment to respect a loved one’s independence or their dignity? Or is it because we just don’t know what exactly to do and where to start?Can you personally provide the safety net? The fix?  Is it possible to bring in support to assist and keep change to a minimum? Have you had a conversation finding out how your loved one feels about things? Are they aware, or not? Do others seeing the same things you are? Is it too late to proactively get some conversations out in the open and some safety nets in place before you need them? Can you scroll your memory to previous conversations that could give you some guidance if it’s too late to do that now?

Transforming the Caregiving Role
Adapting to a caregiving role for anyone aging or experiencing a chronic condition requires love, grace, understanding and commitment, as well as patience. Moving into that role with someone with dementia requires the commitment to change how you do things. Those of us with healthy brains will always remain the ones who can and must be the one to change, every day. We retain the ability to adapt and figure out how to meet our loved one where they are in the journey, today – now. We have the skills. They may not.

If you find yourself in a challenging situation and need guidance, remember that support is available. Reaching out for help is not a sign of weakness, but a step towards better care and a more balanced life for both you and your person. I help families to find that balance, learn how to have those conversations, create some boundaries, and transition to a safer, more appropriate situation.

ConclusionNavigating the complexities of dementia caregiving is a journey filled with challenges and learning opportunities. By understanding the changes, recognizing the signs of needed assistance, and knowing when to step in, you can provide compassionate care while maintaining your loved one’s dignity. Remember, you are not alone on this journey. Support and resources are available to help you provide the best care possible while managing your own well-being. You need self-care equally as importantly as your loved one needs your care. Don’t forget that step of the equation.

About the author 

Elaine Poker-Yount

Elaine lives with dementia both professionally and personally. She has worked with the senior and Boomer population for 25 years and is passionate about helping everyone be successful as they age. 

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