Are They Really Gone?

I sometimes hear family members say that dementia took their mom, dad, or grandparent before they actually died. Sometimes friends will even stop visiting a person with dementia because “there’s no point since she’s already gone”. I absolutely understand that dementia does bring significant grief and loss before death, both for the person with dementia as well as friends and family. Some of the losses that we grieve, even while the person is still alive, are: the loss of our relationship as we previously knew it, the loss of being able to relive our happiest moments by reminiscing together, and the loss of plans we had hoped to share in future years. Anticipatory grief, grieving the approaching death of our loved one after hearing the diagnosis, is also quite real. All of these are legitimate reasons to grieve and very much deserve support! But, we also need to be careful in how we describe our grief so that we can stay focused on the person who is still living with dementia. If we focus more on what we’ve lost than on the person who is still right beside us, we might miss opportunities to share moments of joy and maybe even to know our loved one in a new way.

Working in memory care facilities has shown me that each person’s unique personality finds a way to survive behind the symptoms of dementia, often right up until the end of life. Each person continues to have their own preferences, values, and emotions in response to each circumstance that daily life brings. One person loves the outdoors, another wants to stay inside with a good book. One person loves being the life of the party while another wants quiet time in her room. As I learn their life stories through conversations with family, I also can see the glimmers of who they always were in how they still interact day to day. The good mother still cares for her neighbors. The musician continues to perform, doing whatever might bring praise and applause. The beautiful and popular girl still flirts! I also have watched these same people experience the joy of new experiences, even in later stages of the disease. Life continues every day for people living with dementia and they very much want us to share the joys of living with them. Of course, I realize it’s much easier for me to see their current abilities when I’m not looking through a cloud of grief over the lost abilities that family members know they once had. But, I promise you, there are still wonderfully unique people living behind this frustrating illness. It’s our job to find them.

When society believes that dementia takes people before they die, it encourages family and friends to pull away from those who are still living with dementia. We’re used to connecting through our shared memories and through our understanding of who we are and how we relate to one another. When the way we’re used to connecting and relating no longer works for someone who has dementia, it’s easy to believe that connection is no longer possible. But, dementia really is just another change that life can bring; a new obstacle that forces us to shift how we interact. Dementia doesn’t have to end our relationship with those we love as long as we’re willing to try new approaches.

Life is really all about ever-changing relationships. When our kids become adults, our role in their lives changes significantly and the way we interact has to change to allow them to be the adult they’re becoming. When our spouse retires, our daily interactions change significantly and we might even have to adjust to slight personality changes as he finds new interests. If someone is diagnosed with cancer, we change how we spend our time with them to accommodate their new needs, but we also savor every moment that we can still spend together. Through all of the changes life brings, we still love our family members while we work to find new ways of sharing a different kind of life together.

Dementia is just another change in our ever-evolving relationships. The person is still there and still wants to connect with us. We just have to be willing to let go of our previous expectations and find new ways to reach them. When I did this with my grandma, I learned that while dementia certainly creates obstacles in a relationship, it can also open new windows into who that person really is. As my grandma lost her ability to monitor what she said due to dementia, she became much more open with me and shared feelings and thoughts she never would have shared before. The time I spent with her after she no longer knew who I was brought some of my closest emotional moments with her.

Let’s stop saying that we’ve lost our loved one to dementia before they’ve actually passed away and, instead, let’s get creative and look for opportunities to meet them in a new way. If you’re not sure how to find your loved one behind the symptoms of dementia, contact me at DementiaCommunityCircle@gmail.com. I’d love to meet you and your loved one and help you find new ways to connect with each other so you can enjoy the moments that are still available to share!