Everyone has a bad day every now and then. A day when nothing seems to go as planned. You wake up early in the morning after having stayed up too late the night before. You have nothing to wear and you’re having a bad hair day. You’re running late. You get stuck in traffic. Your car breaks down or you get a flat tire. You bust your ass doing whatever it is that you do all day long. You run from point A to point B and back again. You skip lunch. Your boss has a problem with everything you do or say. You can’t wait to get the hell out of there so you can sit in rush hour traffic all the way home. You finally walk through your front door, let out a long sigh, and say, “Ugh! What a long day!” You think you had a long day? You ain’t seen nothin’ yet.
Imagine this. You wake up early in the morning in bed next to your wife. She isn’t always exactly sure of who you are, where she is, or what the hell is going on. You jump out of bed and straight into the shower. You quickly brush your teeth and throw on your clothes, wanting to get that all out of the way before your wife wakes up and realizes that you’re not in bed next to her. Once you’ve finished getting yourself ready, your day finally begins. You go back to your bed and wake your wife up. You explain to her who you are, where she is, and what the hell is going on. You help your wife get out of bed and into the bathroom. You show her where the toilet is and hand her some toilet paper. You turn on the water in the shower and help her get undressed. You get her into the shower and help her clean herself. She refuses to wash her hair, again, even though it’s been god knows how long since she last washed it. But, you know that it’s not worth the fight. Once she is done with her shower, you help her get out, brush her teeth, brush her hair, and get dressed. The getting dressed portion of this morning’s events can take up to fifteen minutes or more in itself. We’re not talking about giving her a shirt and telling her to put it on. She will put her head through a sleeve, put the shirt on inside out or backwards, or just turn it over and over in her hands like it’s some kind of foreign object. No, you have to physically put her shirt on her body. Ah! At last, she is finally dressed and ready for the day. She’s ready for you to help her find her way out of the bedroom, to the top of the stairs, and walk down the stairs. This whole process has taken up less than one hour of what will be the longest day of your life. Tired yet?
Once you get her down the stairs, you have to show her the way to the kitchen and have her take her medication. Then, you walk her to her favorite chair in the living room, turn on her favorite morning show, and make her favorite breakfast. You heat up some water and make her a cup of tea. You pour her a bowl of cereal or toast some toast. You repeatedly deny her request to have cookies for breakfast. You give her the breakfast and show her how to eat it. You make sure that she finishes it all. Once she’s done, you clean up and wash the dishes in the sink. You read the paper, check your e-mails, and try to make some calls for work. The whole time you’re crossing your fingers and holding your breath, just waiting for her to call your name, “Jack?? Jack??” You hope that she will just sit there and watch the news, pretending to know what she’s watching. Sometimes she will, but sometimes she won’t. You never know what the day will bring.
Suddenly, she starts yelling for you. “Jack?? Jack?? Where are you??” You answer her and tell her that you’re right there, in the next room. She tells you that she was worried and scared because she didn’t know where you were, even though you never left. She starts talking about Elvis, her cousin Nootsie, or her days back at the Trainer Swim Club. You have no idea what the fuck she’s talking about, but it’s easier to just let her ramble on and on. She asks you a hundred and fifty-seven million questions about people, places, things, you name it. Questions about what she’s watching on television. Questions about a distant family member who has been dead for years. Questions about some faint memory of her own life. You’re not even sure if it’s a real memory or just something that she made up. No matter what, you listen to it all. You want to change your name and gauge your fucking eyes out, but you listen to it all. And then, she has to go to the bathroom. Here we go again. You go into the living room and help her get up out of her chair. You show her where the bathroom is, but she still can’t find it. You’ve been living in this house for twenty-five years. You walk her to the bathroom, turn the light on, put the lid up, and show her where everything is. You close the door to give her some sense of privacy and dignity. You hope to god that everything is going okay in there. When she’s done, she calls your name again so you can open the door and let her out. You walk her back into the living room to sit down or out onto the porch for some fresh air. Repeat this whole paragraph about eighty-seven times. Are you tired now?
You try to get things done around the house, whether it be laundry, cleaning, yard work, or things for work. Yup, that’s right. You still technically have a “full-time” job, although you haven’t actually gone to work for more than a couple of hours a week. You do as much work from home as possible. You’re lucky that you’ve been with your company for over twenty years and that they respect the hell out of you. Anyone else would have been let go a long time ago. On some days, you get lucky and you have someone to help look after your wife for a few hours so that you can actually go to the office. These days are glorious. You get a few hours of relief, even if they are spent at work. Even on those days, your wife doesn’t want anyone except for you to help her. It takes a lot of convincing to get her to spend the day with anyone other than you. She’ll say that she doesn’t feel well or that her stomach is bothering her, just like a kid trying to get out of going to school. After a while, she agrees to spend the day with her daughter or her sister and off she goes. Phew!
She may not be with you for a few hours that day, but that won’t stop her from calling you. She will call you all day, every day, unless someone stops her. She thinks that you’re upset with her for going out without you. She thinks that you actually want to take her to Boscov’s to go shopping for clothes that she only thinks she needs because she can’t find all of the clothes she already has at home. If she doesn’t think that you’re upset with her, then she’s upset with you for not being with her. You could spend every single moment of every single day with her, right by her side. Sometimes, she will still turn to you at the end of the day and angrily say, “Where have you been all day? I haven’t seen you all day. For most of the day, I had no idea where you even were. Why are you ignoring me? You haven’t paid any attention to me all day.” You tell her that you have, in fact, been with her all day. You tell her everything that the two of you have done together that day. She is still upset with you. You try to sit quietly in the living room and relax. She starts saying your name again, “Jack?? Jack??” She starts asking you questions again and telling you random shit. This continues up until it’s time to go to bed.
At bed time, you show your wife the hallway that leads to the stairs to go upstairs to the master bedroom. You help her walk down that hallway, so she doesn’t get lost, and up those stairs. There are times when her knees and legs hurt so badly that you watch your wife crawl up those stairs. You fight to hold back tears. Once upstairs, you walk your wife into the master bedroom and into the bathroom. You tell her to brush her teeth, but she refuses. Again, you know it’s not worth the fight. You undress her and put her pajamas on for her. She goes to the bathroom one last time. You walk her back out into the bedroom and help her get into bed. You tuck her in the way she once tucked in your two daughters. You fight to hold back tears. You get yourself ready for bed and finally climb into bed next to her. You turn on the television and put the music channel on, hoping that will quiet her. The questions come again. The random stories never end. You beg and plead with her to please go to sleep. You fight to hold back tears. At some point, she finally stops asking you questions and telling you random stories. She finally falls asleep. You lay in the dark, quiet room. You let the tears fall onto your pillow now. You know that tomorrow will be the same. Every day is the longest day of your life. You help your wife do everything. You shower her. You dress her. You show her around her own damn house. You feed her breakfast, lunch, and dinner. You help her to the bathroom many times throughout the day. You’re just grateful that her condition is not yet so bad that she can no longer use the bathroom. You dread when that day comes because you know it is inevitable. You have no relief. There is no way out. This is your destiny. Tired yet? Ready to give up? You can’t. You don’t have that option.
This is the life of an Alzheimer’s caregiver. This is the life of my dad, Jack, who is the primary caregiver for my mom, Jerie. You think you had a long day? Think again.