Staying Connected Through Change: Navigating the Emotional Journey of Loving Someone with Dementia
It’s incredibly challenging to see your loved one change as their disease progresses. The person you once knew may seem to slip away, leaving behind behaviors and characteristics that feel unfamiliar. It’s normal to experience a sense of loss or even frustration, but it’s also important to find ways to maintain a connection without feeling coldhearted. Here are some strategies to help you navigate these changes with compassion and understanding:
1. Focus on What Remains
While it may seem like you’re losing the person you once knew, certain aspects of their personality may still be present in subtle ways. Look for moments of connection, however small they may be—whether it’s a smile, a brief recognition, or a familiar gesture. These glimpses can help remind you that the person you love is still there, even if their behavior has changed.
2. Embrace the "New" Moments
Instead of solely mourning the loss of who they were, try to embrace who they are now, even if it’s different from before. Engage with your loved one in their current state, enjoying any moments of joy or calm they may experience. This doesn’t mean you have to forget the person they were, but it allows you to be present with them now and find meaning in new experiences together.
3. Practice Empathy by Understanding the Disease
Remind yourself that the changes in your loved one’s personality and behavior are due to the disease, not a choice. It can be helpful to learn more about how the disease affects the brain and behavior. Understanding that these changes are a symptom of their condition can help you respond with empathy rather than frustration.
4. Redefine Your Role
Your relationship with your loved one may feel different now, but you can still play a meaningful role in their life. Instead of seeing yourself as just a caregiver, think of yourself as their advocate, companion, and emotional anchor. This mindset shift can help you stay connected and caring, even as your loved one’s condition evolves.
5. Take Breaks and Seek Support
It’s normal to feel overwhelmed by these changes, so make sure to give yourself permission to take breaks. Respite care, adult daycare, or help from family members can give you the time to recharge. Support groups specifically for caregivers can also be incredibly valuable, providing a space to share feelings, receive advice, and hear from others who understand what you’re going through. This is a Must for everyone. Some studies say that % of Caregivers die before their loved one that is struggling with the disease.
6. Celebrate Small Wins and Moments of Joy
Even in the midst of change, there are often moments of joy or connection that can be celebrated. Whether it’s a good day where your loved one is more responsive, or a small interaction that feels like “old times,” acknowledging these moments can help you focus on the positive aspects of your relationship.
7. Give Yourself Permission to Grieve
It’s okay to grieve the person you feel you’re losing. These feelings don’t make you coldhearted—they make you human. Allow yourself to experience sadness, anger, or any other emotions that come up. Processing these feelings can actually help you respond more compassionately to your loved one because you’re acknowledging your own emotional journey.
8. Find New Ways to Connect
As your loved one changes, the ways you interact may need to change too. If conversations are becoming difficult, try other activities like listening to music together, looking through old photos, or doing simple crafts. These activities can foster connection without relying solely on verbal communication.
9. Remember It’s the Disease, Not the Person
When behaviors feel especially challenging or distressing, remind yourself that it’s the disease manifesting through your loved one, not your loved one behaving intentionally. This understanding can help you respond with compassion rather than detachment. This is very difficult sometimes and you won’t be perfect but progress over perfection. Try your best and forgive yourself when you respond out of frustration.
10. Practice Self-Compassion
Finally, be kind to yourself. It’s normal to feel a range of emotions, from sadness to guilt to frustration. You’re doing the best you can in a difficult situation, and it's important to acknowledge your own needs and emotions without judgment. Compassion for yourself will help you stay compassionate toward your loved one.
Navigating these changes isn’t about being perfect; it’s about being present and trying to connect in new ways. It’s okay to feel conflicted or to grieve what has changed while still caring deeply for your loved one as they are now. Remember, you’re not alone in this—support is available, and you’re doing a loving thing by continuing to show up, even when it’s hard.