Snapshots of Dementia: Sadness, Slowly

Posted by Marti on September 30, 2022 in Dementia | 7 comments

I hope this blog gives you as many hopeful, joyful snapshots of dementia as sad ones. But as I sit, alone again, in a quiet house after Tom’s early bedtime, I’m thinking of a term my dear friend and fellow writer Tracey Pratt taught me: anticipatory grief. That’s typically a type of grief that occurs before someone dies, sometimes (as in Tracey’s case with her only daughter) years before the death occurs. 

As she worked on the initial chapters of her book on the topic, Tracey taught me that anticipatory grief is a genuine and difficult emotion, and each person’s journey is “unique, normal, and significant,” as she puts it.

What neither she nor I knew was that I would, all too soon, experience anticipatory grief myself. 

I remember the weight of shock that slammed into me when I read that dementia often results in death. Before dementia touched our family, I saw it as something that often happened as people moved toward the end of life, but I never thought of it as a killer. Although it’s very possible that Tom could die of something else, the various types of dementia are considered terminal. The destruction they cause to brain and body can and will ultimately result in death. Learning, understanding, and living that truth over the past few years—especially while Tom remains largely unaware—has resulted in our family’s experience of anticipatory grief. 

The sudden loss of a spouse hurts. I have two close friends who have had that experience in the past few years, and I’ve watched their gut-wrenching grief.  

But losing a spouse bit by bit hurts too. Although our family has had some wonderful times to celebrate since Tom’s diagnosis, we’ve also had some times of deep pain. I say “we” because, as you could tell if you read our son’s recent post, Tom’s dementia hurts our entire family. 

My father died more than ten years ago, but like many others who mourn the loss of a loved one, I still get hit with a wave of grief when something reminds me of him. This happens with anticipatory grief too. Some of my recent, silent grief-moments include: 

—Listening to Tom ask me how to spell a simple four- or five-letter word and wondering how much longer he will be able to play the word games he still enjoys. 

—Taking over one more simple task because there’s one more thing he can no longer do and wondering, What next?  

—Hearing Tom get hopelessly off-track as he shares his thoughts in Sunday school and wondering how much longer he’ll enjoy the class at all. 

—Seeing his delight over the smallest pleasures—a dinner he enjoyed, a joke that made him laugh, a victory in his online golf game—and wanting to give him many more special moments. 

—Hearing Tom get suddenly agitated and loudly critical about a mistake at a community choir rehearsal and wondering if it’s time to stop attending.

—Seeing our brand-new grandson, only hours old, for the first time over video chat and noticing how Tom barely looks up from his iPad. 

—Watching Tom in person with that brand-new grandson and wondering how much of his grandpa this little boy will get to know. 

Anticipatory grief is real. While not dwelling on it, I do want to acknowledge its frequent presence in my heart and mind. I’m asking God to use it to help me seize today’s opportunities with Tom, knowing his brain is changing—and no one has the promise of tomorrow.  

If you or someone you know is living with dementia, how has anticipatory grief touched you? What do you find the most difficult about this special type of grief? Feel free to share your thoughts on social media or in the comment section below. Our story matters—and so does yours.