Last week mom started falling more and was so weak she couldn’t even sit. She was more delusional from the dementia than ever before, despite her medication. Then she stopped eating and drinking. After several days in the hospital and the doctor telling us there was nothing more they could do to make her better, she was released back to the group home, under Hospice, where she’s been sleeping most all of the time. Her feet and hands are cold and swollen. She sees people who’ve crossed over and is talking to people she says she doesn’t know who they even are. But then a couple days ago she began to recognize us again. She began to remember details from the conversations. And yesterday she asked for a taco. She sat up and ate a couple bites, asked to drink a Pepsi, and asked if I’d put Chapstick on her lips. Today she could hardly be roused. If you ask her if she’s in pain, she says she’s fine. If you ask her if her stomach hurts, she will begrudgingly tell you it does. Or if her back hurts, she will tell you it does. Or if her head aches, she will tell you it does, but she won’t complain. She winces in her sleep, her muscles are twitching (dehydration?), and she is stirring a lot. Today we noticed her stomach swollen like a pregnant belly, and hard and lumpy. And we wait for the inevitable. We wait for the last breath. We sit hours and hours near her bed, our lives on pause. We keep our phone ringer on, waiting for the call in the middle of the night. We are on edge, filled with tension, with wait. Waiting to grieve. To move forward. Then feeling guilty for wanting to grieve and move on and live again.
I told Chuck today we have to start living again. For a week now we’ve been in anxiety and anticipation mode. Honestly, we’ve been like this since late March and the afternoon we received the call from the police that his mom was worried that the men in the basement were going to hurt her. We’ve been on edge praying that we were making the right decisions. We’ve been on edge praying that we have enough finances to continue the right decisions. And we pray that when the time comes, we did enough.
Dementia steals so much from families that we’ll never get back – time, memories, relationships, and finances. Right now Chuck and I are processing everything the best we can.