The Longest Day
Carrie Anne logs onto her Facebook account and stares at her computer screen. She takes off her glasses and rubs her eyes with the heel of her hand, then begins typing.“Tonight, my husband refuses to go to bed. So, instead of being in my bed, I am sitting in my recliner watching reruns of Murder She Wrote. I’m exhausted but afraid to leave him unsupervised. The doors are locked and the alarms are on. I don't think I will be able to keep my eyes open all night. I'm thinking I will go to bed and maybe he will follow. If not, then I guess the worst thing that can happen is he will rearrange the house, pee on the floor, remove the toilet paper from the roll, etc. This disease drives me crazy.”Carrie Anne is alone, living with her husband of 36 years. She’s truly alone, because while her husband is in the house, he can’t really be present with her.Carrie Anne is alone, but she’s not alone. There are hundreds of thousands of people in the same situation. They’re in the same boat, but in separate cells on the boat. It’s hard to connect with like-minded people when your eyes are focused on keeping someone safe 24/7.When you have dementia, or when you’re caring for someone with dementia, the hours drag slowly by. But it’s not a lazy, relaxed, mellow time, like it was when you were a child whiling away the hours when school was out. It’s a time of waiting for something to go wrong, because you know it will, sooner or later. And you don’t know what kind of wrong it will be and how bad it will be.I’m on a Facebook group of caregivers for people with dementia. Here’s a sample of some things they’ve written recently:“How many times a day can you answer the question ‘are you okay?’ and maintain your sanity? It's often five or six times in a few minutes.”“He scrapes the fork on the table or the tray. His perception is all messed up. Any attempts at assistance are met with anger. One or two bites is all he will eat.““The last time my mom saw my brother was two and a half years ago, and she thought he was her husband.”“My husband is seeing and talking to people that aren't there. He asks where the kids are and even searches the house for them.”“The man I fell for 27 years ago is all but gone. Yet I must still love him, or else how do I get up in the morning and care for his every need? I must still love him, or else what did these last two plus decades mean? Isn't MY Jim still in there somewhere? I'm in love with a memory, and the only way left for me to show it is to care for a man I barely recognize.”Every day there are a load of posts like this. These people are in anguish.This particular group has over 19,000 members. It’s not the only one.My one reason for writing this post is to ask you, if you’re not a caregiver right now, to identify someone in your life who is. Give that person a call and ask how they’re doing. Think of something to do to help, even a small thing, and make a plan to do it. Send up a prayer for them. They’re bearing the triple burden of grief and loneliness and crazy responsibility. We need to take care of our people.
Yes, it’s a crazy world and there are so many things are going wrong. But there are some things we can do to be part of the solution. Pick up that phone!