Snapshots of Dementia: Meet Me in the Middle
I knew it would happen. I just didn’t know it would be so soon.
I knew the day would come when our oldest grandson, who is now five and a half, would show more responsibility, be more careful, and have more understanding than my husband, who is living with dementia.
I knew the day would come when our grandson’s brain, which is constantly growing, would work better and faster than my husband’s, which is constantly shrinking.
I knew the day would come when the two would—in terms of cognitive ability—meet in the middle, one continuing to advance, the other continuing to decline.
I knew it would happen. I just didn’t know it would hurt so much.
I didn’t come to this realization in an instant, of course. In reaching this conclusion, I am probably several months behind.
One of the places Tom and Lincoln both love is Chick-fil-A, Tom for the food and Lincoln for the play area (not to mention the ice cream). Over this school year, we have often picked Lincoln up on a Friday and taken him either to our house or this favorite spot for dinner and play time.
When we visit our local Chick-fil-A, we have to walk across the drive-thru lane to enter the restaurant. I used to hold our grandson’s hand when we did this to make sure he stayed safe.
But for the past several months, I’ve asked Lincoln to keep Grandpa safe. He walks beside Tom, holding his hand or his walker; looks both ways when we have to cross the drive-thru lane; and opens the door so Tom and I can go through first.
In the past, I loved our trips to Chick-fil-A because it was one of the few places where Tom would engage with Lincoln. He would stay in the play area with him, hiding from him as he came down the slide, then jumping out to “scare” him. Even while LWD, he did his best to make sure Lincoln stayed safe.
These days, I choose a table close to the play area because Tom rarely wants to go inside with Lincoln. I can monitor our busy boy from the table or, if I’m in the play area with him, keep an eye on Tom, who is usually sitting at the table, eating or staring into space.
We can still do the same activity; it’s just different now. We can still enjoy our time together; it’s just different now. Tom’s still himself; he’s just different now.
As time has gone on and his brain change has continued, I’ve made some necessary adjustments. Some of these have been big ones: Managing all our money. Becoming the sole breadwinner. Asking him to stop driving. But many have been smaller: Organizing his medication and making sure he takes it. Staying nearby whenever we go anywhere. Helping him more often with the word games he plays on his iPad because he can rarely o them alone.
Not long ago, we tried another favorite activity with Lincoln: a visit to a local miniature golf course. We hadn’t done this for some time, so I saw big changes in both the big and the little boy. Lincoln was still enthusiastic—and sometimes impatient—in his play. But he was also much better at listening and following my instructions.
Because Tom uses a walker, navigating the course is more challenging now. But his mobility issues didn’t cause as much trouble as his brain change. For someone who has trouble managing one thing at a time, keeping track of a golf club, a ball, and a walker was too much. I took charge of the club and ball, and Lincoln helped move the walker, especially when Grandpa forgot to bring it with him.
We just can’t do this anymore, I thought after Tom tried to pick up his walker in a narrow space and fell against a log fence. I’ll have to bring Lincoln without Tom.
But as our game went on, I saw that Tom was still enjoying it. He rested a little more and leaned more heavily on his walker, but he insisted on finishing the course. Once again, I needed to make changes in how I managed the situation: staying right with him rather than a few feet away, making sure he didn’t have the opportunity to pick up his walker. Most of all, I needed to match my thinking to his current skills and abilities—not his former ones.
I don’t know if Lincoln has noticed the changes in Grandpa or not. I do know that he loves him, thinks he is funny, and delights in helping him. He told me today that he wished he could go to a school near us so he could come to our house every day after school.
“Oh, I would love that, Lincoln, but I’d probably be working,” I told him. “You might be bored waiting for me to finish.”
“No, I wouldn’t,” he said with his typical confidence. “Grandpa would take care of me.”
I’m so thankful God gave us this precious boy who loves us no matter what. I’m so thankful that, if Tom has to meet someone in the middle, Lincoln’s the one. And someday, possibly sooner than later, when his baby brother also meets Grandpa in the middle, we have no doubt it will be with just as much love.
If you or someone you know is LWD, what changes have caused you to make adjustments? Have some of those changes surprised you? Who is helping you with these changes? Feel free to share in the comments below or on social media. Our story matters—and so does yours.
