Making Peace with Grief
DEALING WITH CHALLENGES
Making Peace with Grief
We all feel it. Grief is the unwanted companion of dementia that lives with us through the long journey and beyond. Each of us handles it in our own way, and none of us can escape it. We grieve the loss of abilities, memories, companionship, intimacy, and relationships that had all become a part of who we are. But as hard as grieving is, grief is the necessary path to acceptance. It helps us process great loss, prepare for the future, and adjust to new realities.
Grieving Through the Journey
Grieving starts the moment we first realize that our loved one’s comments or behavior has taken an uncomfortable turn. Our initial reaction is to dismiss this as an aberration, but over time reality surfaces. The illness is relentless.
Grieving is a personal journey, and there are no rights or wrongs. My daughter, Brooke, and I were on different paths, but each of us had peaks, valleys, and leveling off periods. And we each drifted into feelings of anger, anxiety, loneliness, sadness, helplessness, frustration, and regret. While these emotions are normal for people under such stress, they can lead to undeserved feelings of failure and guilt, like:
If you’ve had any of these thoughts, know you are sharing them with millions of other people who have had to travel this insanely difficult path. There is no way to significantly change the path dementia chooses to take, but there are a few things you can do to ease the pain.
1. Stop putting yourself on trial. You’re human, and no human is perfect. Don’t expect more from yourself than you would expect from your best friends if they were in your shoes.
2. Acknowledge that grief can make us behave in ways that don’t feel like who we really are. Feelings like anger and frustration are grief acting out in different forms. You’re entitled to be normal.
3. When something makes you uncomfortable, acknowledge what happened. When you know that your intentions are honorable, nothing beyond that should be expected. Perfection is impossible, but you can learn from your experiences.
4. Allow yourself to view your current situation in perspective by remembering it is only one chapter in your long-lasting relationship.
Grieving helps us accept that we sometimes behave in ways we wish we hadn't – and that love and grieving can coexist.
When the Journey Ends
As difficult as the journey is, the ending is harder. Earlier fears become reality. Who would have ever thought that we would miss the challenges and inconveniences of caregiving. But the hole that follows the loss is overwhelming, as Brooke described:
“I was so sad and numb. I knew she was gone intellectually, but in my heart, I couldn’t grasp it. I needed to talk about it with all of my friends. To tell them the story of what happened. Again and again. Trying to make it real. To make it sink in. Trying to feel the depth of it. Trying to penetrate the numbness. Oh, how I missed her. I missed our lunches and our silly faces and our walks to Starbucks and our goofiness. I missed everything about our times together.”
Almost two years later, the pain of the loss hangs on for both of us. But life must go on and our new realities have led us down new paths. Grief doesn’t end; it changes. The memories that once brought tears can now bring smiles when we think of her positive presence. Dementia takes away so much, but it cannot take away love.
We are allowed to grieve. We are allowed to be angry, frightened, lonely, exhausted and imperfect. We are allowed to forgive ourselves. And we are also allowed to smile when we remember the person we loved. The fact that we grieve so deeply is evidence of how deeply our relationship mattered.
Reflections
In retrospect, I learned that while grief is hard, it is also a teacher. Grieving can reveal strengths we didn’t know we had. When we walk through it – one breath at a time – we discover something astonishing: we are stronger than we imagined. While we wish that our loved ones were still here and in good health, we can move on by continuing to feel their positive influence in our lives.
Grief can also lead to gratitude. We become grateful for everything we shared, while also mourning everything we will never be able to share again. Someone who continues to cry years later isn't necessarily "stuck," and someone who finds peace and smiles when remembering isn't necessarily grieving less.
We can survive the grieving process and still have optimism as our destination. These are not contradictions. They are different parts of love. In Brooke’s words, “Giving to others did not erase my grief, but it transformed my relationship to it. Pain became compassion, and passion became purpose. This was the driving force that enabled me to move forward on my grief journey.”