Just when we think we have things settled down, we hit another bump in the road. You can never expect anything to stay the same for too long with this disease.
For the past several months, we've had a new routine that has consisted of two new (paid) caregivers. We knew that the time would be coming where we may have to replace volunteers; they've been wonderful but my dad is afraid of wearing them out. Luckily, mom has been so set in her routine that we generally know when caregivers are needed. For instance, we know that she won't be out of bed until 8:30 and she had her medicine/breakfast/potty routine that she seldom deviates from. It makes it a little easier for dad to get out the door for work in the morning and not worry for the couple hours before caregivers begin to arrive.
Last week, dad related to me that mom had woken up at midnight, disoriented. She thought that it was afternoon and went into the kitchen to make her sandwich. Dad followed her in there, put her sandwich away and took her back to bed. But she was very unsettled. For the better part of the night, dad tried keeping mom in bed, blocking her from getting out as she tried to be sneaky and escape. A couple of times she was successful in her escape and was found in the office, playing on the computer. She had become disoriented one other time, when they were getting ready to go on vacation last summer. She woke up in the middle of the night thinking that it was morning and was trying to get ready for their trip. When dad related the events of the previous night, I was hoping it was just another fluke, as it seemed to be in the summer.
Unfortunately, I don't think that this is a fluke, but rather an advancement of the disease. It is quite common for people with Alzheimer's/dementia to become disoriented and wake at night; they lose concept of time. My dad has had a rough weekend with mom. The disorientation came back. Mom has been waking up at night and thinking that it is night time in the middle of the day. Yesterday, we came over for family dinner and I realized that mom never came out of her room at 4:30 for dinner; I thought it strange. I went back to visit her in the office and it became very apparent that she didn't know what time of the day it was. She pointed to the time on the computer (it was after 5:30 at this point) and mumbled about how we needed to leave soon so that she could take her nap. She was convinced that it was afternoon and we left that night, I was a little nervous for what the night would bring for my dad.
I got a text from my dad at 7:08 this morning, asking me when I planned to come over (which is usually 9:00). After doubling her sleep meds last night, he told me that mom had been up since 5:40 and he was nervous to leave her alone. She was disoriented and upset because she couldn't find her night time medicine. I quickly pulled on some sweats and, without a shower, got my kids (who are on spring break) and car loaded to start my day at mom's. At 7:40 this morning, I found my mom fully dressed, sitting in front of the computer.
"Good morning mom," I said, kissing her on top of her head.
"Why are you here? You need to go too but why didn't he leave me my night time medicine? He's not supporting me and giving me my night time medicine," she rambled.
"Mom, it's morning time. See the sun outside? That means it's morning. Here are your morning medicines," I told her, cueing her to look out the blind at the sunshine and showing her the morning bottle of meds.
"I wonder if I can eat early now 'cuz it's not 4:30 yet," she said, waving a finger at the clock which read 7:49. "I wonder can I eat can I make my sandwich now."
Just then, my dad walked down the hall (on his way out the door for work) and he told mom that she could go eat.
"It's time for your Slim Fast dear, it's breakfast time. You drink your Slim Fast," he told her.
"Yeah yeah? I can go eat now too? I can go make my sandwich now early?"
"You can eat whatever you want," dad answered.
"Oh good oh good! Oh thank you, thank you!" she said enthusiastically. She hopped up from her seat and practically skipped down the hall with a big smile on her face, thanking my dad for "allowing" her to eat early.
Mom sat at the table and began her "dinner" routine of making her pb&j sandwich, pouring her Root Beer in the glass beside her. Try as I might, I could not convince mom that it was actually morning and not evening. I could not convince her to take her morning meds; I even poured them into my hand to show her but she did not see the Sleep Aid medicine, so she could not be fooled into taking her morning pills in disguise as night time pills instead.
So now, here I sit on mom's couch, at 8:50 in the morning. Mom comes out every 10 minutes or so to poke her head out the window and the garage, looking for dad to bring her her night time medicine. Right now she is sitting beside me asking repeatedly where he wants, insisting on night time meds. I don't know how the rest of the day will play out, but I imagine it will be a long day. And an even longer night for my dad. I'm not sure how he is going to handle caring for mom all through the night and turn around to do a labor intensive job during the day. I don't know yet what the answer is. Maybe-just maybe-mom will get back into her routine, but I know well enough that this is all a part of the disease, and it seems to be changing yet again.