A few weeks ago, I spent most of one day mowing our property. About six hours.
That morning, E went on adventures with her new caregiver/companion then took a nap after lunch. I mowed before she woke up, while she was gone, and while she napped.
While mowing I got something in my eye. It was painful, red, and swollen even after I washed it out numerous times. Despite the pain in my eye, I lovingly cared for E. I fixed her dinner, gave her her meds, and attempted to get her to bed.
From 6:30-8 I kept gently trying to get E to go to bed. I suggested she get ready for bed at 6:30. Then at 7:00. Then again at 7:30. She kept saying she wasn’t going to bed yet because she wanted stay up for a while.
[She’s normally in bed between 6:30-7:00. Sometimes as early as 5:30.]
That entire time she just sat at the kitchen table. For almost two hours after finishing her dinner she just sat there. I’d offered alternatives, but she was adamant she was staying put. She became more belligerent each time I suggested she move to a more comfortable spot or head to bed.
[This is typical of Sundowners in dementia patients. As it gets later in the day, they get more confused and less cooperative. But this behavior was unusual for E.]
At 8:00, I asked her to go to use the toilet.
[As I shared in Naps, I’ve found that asking her to use the toilet can be a less confrontational way to get her to go to her room. Once she’s in her room, she wants to go to bed. It hadn’t worked at 7:00, but I decided to try again now that it was an hour later.]
When I asked her to go use the toilet, she glared and huffed at me.
This time I explained in no uncertain terms that she had not used the toilet in over six hours, and last time she did this she wet her pants. She had to go use the toilet. She got up and moved towards her room.
She stopped at our bedroom door, read the sign that says, “DO NOT ENTER,” glared at me, and opened the door to walk right in. I asked her politely to come out. “I want to look around!” she spat.
“Please come out. There’s a sign saying ‘Do Not Enter.’ You are NOT to go in there.”
She gave me a look that would kill a bear. “Jeeeezzzee Louise!!!!” she huffed as she moved towards her room.
Finally, she went into her bathroom and used the toilet, washed her hands, and brushed her teeth. I got her pajamas out while she did her business.
She came out of the bathroom, glared at me, and said, “I AM SO DAMN TIRED!!! Can I please just go to bed now???”
Although the result was exactly what I’d hoped for, I didn’t like the way she spoke to me. I got angry. I forgot to remember that I’m the one with a fully functioning brain. I forgot that I’m supposed to be the calmest person in the room. I wasn’t calm at all. “YES!! YES YOU CAN GO TO BED! I’ve been trying to get you to go to bed for an hour and a half! PLEASE GET YOUR PAJAMAS ON AND GO TO BED!” I answered not too kindly.
She just stared at me. Then firmly accused me of lying. “There is no way I said I wanted to stay up. You did NOT ask me to go to bed.”
“Yes. I. Did.” I barked back.
“I’m quite sure I would have said yes,” she replied much more meekly.
“Ok. Whatever. Just please get your pajamas on,” I answered.
I helped her get changed into her pajamas and tucked her in. I told her I love her (despite my recent actions not showing it) and turned off her light.
(Writing this, I’m beginning to wonder which of us was exhibiting signs of Sundowners. )
I went back to the great room where I was not kind to Ron.
Ron had come home right after I got E to bed. My eye was still hurting. And I was still frustrated. He asked me a simple question which I took as an accusation. It wasn’t pretty.
Then he asked me to look at something outside. I was immediately bitten by not one but THREE mosquitoes. Which, of course, was Ron’s fault.
Then the 20+ year old receiver in our entertainment system acted up in the middle of an intense Poldark scene. I could not hear what Ross was saying to George!! This was also Ron’s fault, obviously. And I made sure he knew it.
Ron quickly gathered all the information off the multiple electronic devices connected to the receiver, completely without my help, and assured me he’d get a new one this week.
Ron wisely went to bed.
I crocheted and watched Pokdark on my iPad with my one good eye. My bad eye kept watering. Or maybe that was both eyes.
I went to bed way too late and woke up looking horrible. Red, puffy eyes. Yuck.
The next morning Ron called early enough that E would still be asleep but late enough that I would be awake. “Good morning, sweetheart. Can I do anything to help you today?” he lovingly asked.
“No!” I answered.
“Are you ok?”
“No. My eye hurts,” I whined.
“I’m so sorry. Can I help? I can come work from home while you go to clinic care. I can stay with E,” he said in his sweetest voice.
“Sweetheart, I think caring for E and living with me is hard on you sometimes. I want to help. I want to love you. I am going at lunchtime to buy a new receiver and will try to have Geek Squad install it so you know it’s done right. What else can I do for you? I’ll finish the mowing this weekend. Do you need me to come home? Don’t worry about that other thing I asked you about last night. I’ll tell Mike we won’t have it done this week.”
I thanked him. And told him I love him. “Thank you for calling. I’ll be okay but will call if I need anything. I love you.”
I got E up, helped her dress, and got her breakfast. We had a wonderful morning. She had forgotten all about the night before.
Yes, I am blessed to be married to such and amazing man.
Yes, dementia is a horrible disease.
Yes, E is delightful except when she’s not.
Yes, E deserves better than I gave her that night.
Yes, today is a new day. I’m not beating myself up over my failures, but I am learning from my mistakes.