Does anybody really know what time it is?

Mom has been getting her days and nights mixed up. The nurse pulled me aside and told me that mom is leaving her room numerous times at night to sit in a chair in the hallway. And then wander around. The aides try to get her to go back to her room but she’s stubborn. There are only a few aides on duty overnight and her wandering around has them concerned; she could fall, have a stroke, maybe try to go outside (doubtful but possible). Also, she’s being a pest.

She wants them to turn on all the hall lights. They’ve explained to her that if they do that and other residents happen to get up it will confuse them. And for the residents who have middle of the night changes or medication, the bright light will disturb them. None of this sticks. The nurse also told me that mom will ask when breakfast will be served. They tell her that it will be served at 7:00am, just like always. She accepts this answer until another resident wanders out. At this point she will report loudly that they are not serving breakfast and she doesn’t understand why.

Sometimes she calls me. I explain that it's the middle of the night, confirm when I'll be there next, then tell her to go back to bed. Ten minutes later another call. 15 minutes and yet another. Lather, rinse, repeat. She has a clock, she has a watch (that she obsessively checks), she has a calendar and she has a window. There is no lack of visual cues as to what time it is and what day it is. Or she could ask. The problem is remembering what they tell her.

We’ve had the same conversation over and over. And we’ll have the same conversation again. It’s the nature of the disease. I’ve told her to first look out her window. It’s a big one and takes up almost an entire wall of her apartment. If it’s dark outside, it’s night time and she needs to go back to bed. If it’s light out, she can go about her day since her friends will be up, too. And to back all this up, I’ve written it down in neat little bullet points. I can’t get upset with her – it’s not her fault.

Her wanderings have made it necessary to increase her level of care. It’s also an increase in rent that puts us barely south of $4000 a month. If she would just stay in her room when it’s dark…

Nopity, nope, nope. Logic has no place here.

First comes love, then comes marriage.

Mom did all the normal 1950’s high school stuff. Poodle skirts with lots of petticoats that were starched to their shattering point. Cardigan sweaters, football games, pep rallies, sock hops. Watch the movie Grease and that’s exactly how it was. She says so, musical interludes and all. She went to class but that was simply a necessary evil. She had a couple of boyfriends; Skip was cute and Mike was her first love. And then the boy from California showed up in a powder blue convertible. John Casey was his name and from what she’s told me, he probably had a slight attitude problem. More on that later. Mom set her sights on him in part because she could just see herself in that convertible, silk scarf flying in the wind, red lipstick, and cat-eye sunglasses. Grace Kelly had nothing on her.

They got engaged during their senior year and had a huge wedding in February of 1957. Mom said she cried before the ceremony because she knew she was making a mistake. She told her mom that she didn’t want to go through with it and she was told to chin up and get out there; too much money had been spent and everyone was already there. Fairyland playtime had turned into reality and it wasn’t looking pretty. Mom sucked it up and the wedding was lovely. She looked beautiful and, because I know what he did to her, I think he looked like a tool. Her mom always regretted making her go through with it.

After the wedding, the newlyweds moved to Joplin, Missouri where John was going to work with his parents who owned a chain of 5 and dime stores. I don’t know if they had a honeymoon and she doesn’t remember anymore. Lots of crappy things happened during their year and a half of marriage; he didn’t allow mom to drive a car, and made her walk to work, he tried to shoot her dog but he was too drunk to hit the broad side of a barn, not to mention a cocker spaniel. That was the last straw and she filed for divorce. They didn’t have children and she didn’t want to take anything with her. She just wanted to get back to her mom and dad with her maiden name restored and her dog. Her mother warned her that John would show up at the airport and try to get her alone with him and that’s exactly what he did. Thank goodness she listened. We checked a few years ago to see what had happened to him. She was the first of four or five wives and he died when he was in his fifties. Good thing she and her dog managed to dodge that bullet.

February 1957

A little background

My mom was born in 1939 and is the older of two children. Her dad was in the military and got to participate in and survive WWII and the Korean War. The stories he would tell me were amazing. Partly due to his adventures, mostly due to his amazing ability to tell a six-year-old little girl war stories and hold her attention 100%. Her mom was a force to be reckoned with, there was nothing she couldn’t do, nothing she wouldn’t say. She could play piano by ear and loved nothing more than to be president of any club she was a member of.

Mom was a cute baby and a beautiful child. She loved to dance, loved dressing in the latest fashions, and loved being social. Engagement parties, wedding showers, baby showers, birthday parties, cocktail parties…you name it and Patty was down. She also theme-dressed; still does. Baby shower? Wearing pink or blue, thank you very much. Dinner out at a Mexican restaurant? A peasant top, flowy skirt, and brightly colored bangles is the only way to go.

Mom at about 6 months with her parents in Detroit

Today is her birthday

The past few nights mom has called at least twice between 2am and 4am, no emergency, so Thursday night I put my phone on mute. I woke up to 8 missed calls and 8 voice messages this morning. All the calls were from my mom between 4:55am and 5:30am. She started by reading back the note I had left for her on Tuesday when I dropped off her laundry. “It says here that you will be picking me up on March 18th at 4:00pm for my birthday dinner. I was just wondering where you are. I’m in my room.” The last one was, “I see it’s going to be your birthday and I’m supposed to be picking you up. I understand that you may not be able to be here, honey. I’m a little confused about the note.” She never gets upset, she doesn’t cry. It’s the spin that she gets herself into when she gets focused on something. It gets smaller and more concentrated until it’s no longer what it started out to be.

I'll be leaving to pick her up soon. I stopped by her place yesterday to remind her I'll be there today. I've made lasagna which she likes, and a salad which she doesn't. She'll pick at the dinner but she'll have more than one serving of dessert and then it'll be time to go. I'd like her to stay longer but one hour is her limit. All I can do is roll with it. 

My mom and me

Where we are now

My mom, Patty, is 78, has dementia, and uses a walker. She always described herself as a tall, slim blonde and that’s exactly how she will always see herself. She’s in assisted living; no need for memory care yet since she isn’t a flight risk. The one time she did venture out the front door of her facility she had to wait for someone to let her back in. The door wasn’t locked, and the handicap button worked perfectly; she just didn’t press it hard enough and didn’t remember to go to the default door opening procedure…reach out and pull. We have since gone over the mechanics of door opening a number of times so she doesn’t find herself in a similar pickle. She never goes outside, even to the inner courtyards, unless I'm with her so I'll never know if she figured it out. I do have to keep in mind that this is the woman who, even on her best and brightest day pre-dementia, couldn’t figure out how to use the seat-belt in my car. I drive a Honda. She did, too. Go figure that one out.

Why I'm here

My mom was diagnosed with dementia in 2014. This disease is unpredictable, unforgiving, frustrating, and sad. The emotional side of being the child of a person with dementia is tough. There is no real path to follow, no chance of recovery, and good days are replaced by good moments. I’ve visited dementia and Alzheimer's disease information sites and read a few blogs on caring for a parent with dementia thinking I could find a kindred spirit or two to learn from. I even briefly joined a Facebook page for caregivers – I left within a week because I couldn’t read any more stories of despair, the sacrificing of family and self, and the sugar-coated mantra of how lucky we should feel that we have been given the honor of taking care of a parent who took care of us. I take care of her because I am all she has. I take care of her because I love her.