Snapshots of Dementia: Two Is the Loneliest Number (and Other Reasons I Cry)

Posted by Marti on April 8, 2022 in Caregivers, Dementia | 12 comments

I am a person of tears. I cry when I’m sad. I cry when I’m happy. I cry when I worship. I cry—you get the picture. My children remember me not as the mom who screamed when they were disobedient but as the mom who (you guessed it) cried. I’ve written before about these tears here and how, in Tom’s (more and more rare) moments of awareness of his condition, sometimes, we cry. 

As far as I can tell, I feel things more deeply than many people. I believe this quality makes me a better intercessor and a better writer, but it also means that, as the wife of a man living with dementia, I cry. 

Why do I cry? Not because of the pain of the past, the years when doctors kept saying Tom was fine but his behavior showed us he wasn’t.  

Not because of the responsibility. Yes, it still feels like a weight—being in charge of everything about our lives together, from small to big decisions, tasks, schedules, and everything in between—but God has given me what I need, and I’m consistently amazed at His provision. 

Not because of the diagnosis. Knowing Tom has what I consider a terrible disease makes me sad, but we waited so long to receive medical affirmation of our suspicions that when it came, I felt more relief than sadness. 

Not because of lost jobs. I did cry—a lot—when Tom had to leave his final worship pastor position. We loved our church and the people there. But Tom was in such a bad place emotionally/spiritually/and of course cognitively at that time that I knew something had to shift. So although the tears came, I also realized it was time, probably past time, for him to go. 

So why do I cry? 

Because of our children. Every mother will tell you she’d rather hurt a thousand times herself than see her child hurt once. All our children are grown now, but their father’s disease still wounds them. We all hate the way dementia is stealing him from us. And I know it gives them additional concerns for the future, all of which I wish I could remove but none of which I can. 

Because of our grandson. As I wrote about here, Lincoln and his love for Grandpa have taught me much about genuine love. Lincoln doesn’t mind that Grandpa gets mixed up easily, makes awkward comments, or doesn’t remember what someone told him only a few minutes earlier. But knowing that this little boy will continue to grow, change, and progress while Grandpa grows, changes, and regresses? That makes my heart hurt and my tears flow. For Grandpa—and for a little boy who has never known him healthy and whole. 

Because two is the loneliest number (when one has dementia). I still talk to Tom as though he can understand everything I say. In reality, he needs information in small bites, and may not remember it even then. I still lean my head on his, hold his hand, and give him hugs and kisses. I still consult him on decisions even though in reality, he won’t offer input. But more and more, our relationship resembles that of a very large child and parent rather than that of a husband and wife. How it was is not how it is. And sometimes, especially in those moments when I feel most alone, I cry.

Yet Tom and I know we will reach a day and a place where neither of us has the need to cry. Scripture tells us that not only does God store up our tears (Ps. 56:8), remembering and caring about them, but that the day will come when He wipes each one away (Rev. 21:4). In heaven, there will be no mourning. No crying. No pain.

In heaven, there will be no more dementia.  

This is my hope. This is my prayer. This comforts me—even as I cry.