“As the youngest of three and her only girl, my Momma and I have always had a special bond. She was absolutely my best friend growing up. She has always been ditzy and silly, so it was a bit harder to catch the changes that were happening as time went on. My Dada was diagnosed with cancer in 2010, so we just assumed any odd new behavior was stress-related. When she stopped cooking, we thought it was because my Dada could no longer eat with his esophageal cancer, not that she was struggling with basic tasks. After he passed away in 2012, she was convinced by a friend to have a full check-up since it became noticeable she hadn’t been taking care of herself. After a quick assessment for memory issues and/or depression, her doctor wanted to try her out on an antidepressant, since she didn’t perform as well as could be hoped for. We accepted it and went on about life. However, she continued to worsen over time. I lived out of town but my spouse and I stayed every weekend with her, and one of my brothers and his family live next door, so she always had someone to keep an eye on her. I absolutely didn’t want to accept the new changes I was seeing with each visit, nor what family was telling me, but when I noticed my once impeccably put-together Momma was looking a bit less than perfect, and when I realized she didn’t know what year it was, I knew I had to make an appointment. Hearing it for certain made me feel like I had already lost another parent just a year after my Dada. All I could think about was the years I saw my grandmother suffer from this horrible disease, and what was to come for my sweet Momma.
Since she was only 61 when she was officially diagnosed with dementia, we didn’t want her to lose her independence right away. At that time, she was still able to drive and had friends and family to check on her, along with my spouse and myself usually staying the weekends. She was on new medication and seemed to be doing well, so I slid back into denial. However, it quickly changed in less than two years as she continued to decline, and I realized one day that she couldn’t make herself a sandwich. The moment my brothers and I knew she absolutely needed more hands-on care was when she forgot how to crank her car after leaving a store and got into a vehicle full of strangers to be dropped off somewhere else in town. Knowing this could have ended horribly, we needed to make a decision ASAP. I cried at the thought of a stranger taking care of my Momma, or her winding up in a nursing home someday, which had always been her biggest fear since she had to watch her own mother go into one. I remember lying in bed one day just crying my eyes out, not knowing what to do, when my spouse came to me and said, ‘Let’s do this. You need to be with her, and I can just commute the hour to and from work. We can manage this together.’ After knowing I had my support system in place and that we were both on board, we immediately began the process of moving in.
Very early on after moving in, she developed something called ‘capgras syndrome,’ which means she knew I looked like me and my name was the same, but to her I was an imposter and not really her daughter. She cried and searched for me for a few months before she finally calmed down. It was horrible and heartbreaking for me, and nothing I or my brothers said could help her. Two and a half years later, she still rarely knows me as her daughter, but she’s pretty good about knowing my brothers and hasn’t seemed to forget her six beautiful granddaughters, even asking about them by name at times.
As the years go by, she loses more and more abilities. I help her with all daily tasks, keep her neat and clean and in pretty clothes like she has always liked. I do her nails, makeup, and hair and try to keep her doing things she enjoys while she still has the ability to get around fairly well. She has slowly lost her speech and speaks gibberish, so it’s a constant game of charades. The wildest part of this is the hallucinations and the fact she thinks her reflection is another person, whom she has named ‘Sharon.’ She has to stop and talk to her anytime she sees her own reflection, something she spends a lot of time in the bathroom doing. Usually ‘Sharon’ is a good friend, but sometimes she gets messy, so I have to take the bathroom mirror down for a while. Although this is her home and has been for over two decades, she has days where she wants her mother and to go back to her childhood home. She will have bursts of anger and say she’s going to walk home if I don’t take her, and she has tried to run away a few times. We had to get an alarm for her bedroom, and my spouse installed special locks on all of the doors. Thankfully, her doctor prescribed an anxiety medication, which has helped a ton, but it has to be adjusted occasionally. Just a couple of weeks ago, she had a few bad days and was alternating between trying to beat the door down and discussing the situation with ‘Sharon’ when she thought I couldn’t hear. I knew by her attitude that if I tried to distract her she would get violent and, if I tried to take her for a ride she may try to escape, so we were stuck in the house for a few days until the adjustments her doctor had made to her medication took effect.
After that particular week from Hell, my spouse knew I needed a break and took off work to take me to a showing of The Rocky Horror Picture Show so we could dress up in costumes and have a good time, and really just get to be young adults for a while. I usually ask one of my brothers to sit with her for a few hours if we are going on a date, but it happened to be a busy night for everyone, as my nieces had activities. My spouse and I were unsure how Momma would do out in a crowded environment after going through a week with such horrible anxiety, but she did really well when shopping with me for my Supergirl costume. Then, I saw how excited she got when she saw a Wonder Woman costume, so I figured it was worth taking the chance. Right there in the store, I sent a text to my spouse saying I didn’t think we had anyone to sit with her, and she was so excited over the costume that we should still go and just bring her along. I instantly got back, ‘Whatever you think works, babe! I don’t mind her going, I just don’t want her to be miserable. I love you!’
I found all the regular Wonder Woman costumes to be too skimpy, but knew my artist spouse could whip something up. Momma and I went and picked out a sparkly red shirt to be painted, things to make a tutu, and I was able to find Wonder Woman accessories sold separately. She was pure giddy with excitement! Although it’s rare she gets actual words out, she told my aunt and uncle she was going to be Wonder Woman! When the big day came, she was excited and also laughing about us all being dressed up. She was flexing and saying, ‘I’m Wonder Woman!’ We were laughing before we even left home, posing for an impromptu photoshoot in the living room. When we got to the event we were asked to be in the costume contest together, but wound up not participating because she couldn’t understand that I was asking her to go to the front with me, and also I was honestly too worried about getting her up and down the steps leading up to the stage. It’s such a weird and crazy movie, she laughed the whole time and would occasionally ask what in the hell we were watching, but she never got agitated or asked to leave. She also got a kick out of all the shirtless guys and loved seeing other people’s costumes. I was absolutely shocked she didn’t have any anxiety and sat there through everything! Afterwards she said she was hungry, so we went and got burgers. We didn’t even get home until after 1 a.m.!
Although I originally wanted a night out to have a break from caregiving, I’m so very thankful it didn’t work out as we originally planned and she tagged along with us, and also that I have a spouse who is so loving and patient to share our date night with my Momma. We had the time of our lives, and it was an incredible blessing to see her laughing and having fun after such a bad week. I’m so grateful that I was able to make some more sweet memories with my beautiful Momma. It just reminded me that a piece of her will always be in there, and to always try and live life to the fullest.”
This story was submitted to Love What Matters by Angela Tynes Usé, 34, of South Mississippi. Do you have a similar story? We’d like to hear your journey. Submit your story here, and subscribe to our best stories in our free newsletter here.
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