My husband and I take my mom to dinner almost every Wednesday evening. I try to pick different places with good, healthy food and a nice place we can sit and visit as a family. My husband goes and since my nephew moved here, he has been there every Wednesday night, too.
This last Wednesday I showed up to my mom’s place about an hour before dinner. I always do that so she has time to get ready without feeling rushed. This particular day it was 85 degrees outside and sunny. Mom has taken to wearing lots of clothes lately. I think she forgets she has a couple of shirts on, so she puts more on, rather than changing her clothes. Today, she had on seven shirts and a VERY tight corduroy pair of pants. And can I say again, they were VERY tight. She was breathing heavy from the exertion of getting those pants on when I walked in the door.
The next half hour was spent with my mom walking back and forth between her bedroom and the living room. I suggested she take off a couple shirts because it was hot outside, so she would walk to the bedroom, and then a couple minutes later walk back out and I would say, “Did you take off a couple shirts under there?” and she would puff and go back to her bedroom.
Then she turned on the water in her kitchen sink and let it run. She decided she needed to wash her hair. OK.
So after about 20 minutes, she still had on all her clothes and her water was running full blast. Exasperated, I said, “Mom, you’re going to overheat if you don’t take off some of those shirts.”
My husband texted me right at that moment and I grabbed my phone and looked down to read the message and reply. It wasn’t a minute later that my mom said, “How’s this?” and I look up and she has taken off all her shirts and thrown them on the kitchen floor. She puts up her hands and says, “How about I go out like this?”
Oh my!
The first thing I did was lock the front door to her apartment, so my husband didn’t walk in on her half naked. Then I picked up her shirts, we went into the bedroom and I helped her take her skin tight pants off and change into looser pants and then we picked a couple shirts for her to wear from the heap she’d thrown on the floor.
The water was still running.
Eventually, her hair was washed, she was dressed, I let my husband in her apartment and we left for dinner.
But I was just feeling like someone else has to know. They have to know what this is like. And who better to burden with my sadness than my sister, who is the only other person on earth who knows my mom like I do. So I called my sister when I had a free moment and quickly blurted out all that had just happened. Then when my sister mentioned they were coming to visit the next week I heard myself saying that I hope things with mom are just as crazy when they come so that she can see it, too.
I realize how that sounds, but I just feel the weight of my mom’s Alzheimer’s so heavy on my shoulders and I’m desperate sometimes for someone else to carry it. I AM capable and I CAN do this, but sometimes, especially when it’s hard and sad, I just want someone else to do it, if only for a little while.
No one is really equipped to take care of a parent that acts like a three-year-old. At least, I’m not equipped, though I am learning. I was hit with the realization that my mom, the woman I know, is disappearing in the sea of Alzheimer’s disease. How long will we be able to take her out to dinner? How much longer will her little, skinny body be able to walk?
When we dropped her off that night after dinner my mom sat in her chair and could barely move. She leaned to the left and it looked like she couldn’t hold her head up. She closed her eyes and as we were walking out she opened her eyes and demanded to know who we were and what we were doing in her room. Then she started yelling, “When can I go home? I don’t want to be here anymore!” I tried to calm her, but she didn’t know who I was, so I ended up telling her I would go find a nurse and I left. The nurse was already at her door.
The days since that dinner have been rough for my mom. She had a meltdown at her assisted living facility and a lady who lives there called me. My mom got on the phone and she was very paranoid and upset. She said they were starving her there and that she was going to call the “state” and complain. She demanded to be moved out of there away from the people there who were mistreating her. As I was talking to her on the phone, she hung up on me. I tried calling back, but she didn’t answer.
We drove over and by the time we got there she was calmer. A very nice med aide had talked her down. We put together a puzzle for a couple hours and the same few pieces kept my mom busy the entire time. We talked a little and she got sleepy.
My sister and her family will be here next week. She said they will be there Thursday afternoon and are taking my mom to dinner. She apologized that it’s not a lot of time and not a big help, but I let her know that it is. I sent my sister a text saying that mom is so bad at night, her memory is so much worse. Mom is sundowning* so badly. In fact, the last two months have been filled with so much change in my mom that I can’t adjust. Her decline is so severe and it isn’t leveling out like it used to.
I told my sister, “Mom is so bad. It’s like there’s nothing left of her.”
Right now I feel the changes, they hurt my heart, and usually, I can get my feet under me and adapt, but I can’t right now. It’s all happening too fast. She’s going too fast and I thought I was ready but I’m not. ⠀⠀
And if I feel this way, how does my mom feel? How terrifying is this for her? I cannot imagine.
*sundowning: a symptom of Alzheimer’s disease and other forms of dementia. It’s also known as “late-day confusion.” If someone you care for has dementia, their confusion and agitation may get worse in the late afternoon and evening. In comparison, their symptoms may be less pronounced earlier in the day.