For the past year, I have given up a normal life.
At the end of my sophomore semester of college, my mom ended up having a health scare. I had already been in talks to take some time off from school -- another subject for a future post, I promise -- and when this happened, the timing seemed right. To me, my mom seemed to be fine minus her wanting to up and do everything independently. It was hard to tell her no or try to stop her. When she wanted to do something, she was going to do it. No, if, and's, or buts about it.
Fast forward to the end of November. My mom was preparing to go to bed and I was watching something on television. I had gone to the kitchen to get something to drink and as I was returning to the living room, mom looked at me with a blank expression and asked "Where did all the other girls go?" She, myself, and our dog Violet, were the only ones there the entire day and that's what I told her. She said she was so caught up in what we had been watching that she had gotten confused. I was floored. My mind started racing. "Was this a sign of Alzheimer's?" "Maybe she really did so caught up in that she did think we had more people here at the house. I mean that happens with others too I bet." I sunk to the floor. Head facing down while propped on my knees with my arms tightly wrapped around them for dear life. The tears started pouring before I even had a moment to rationalize what happened. I took a deep breath and as quickly as I could, I pulled myself together. December came and things seemed fine but her comment stayed in the back of my mind, refusing to be forgotten.
December 31st, 2015. New Years Eve. It's supposed to be a day of fun and preparing to celebrate and stay awake all night waiting for the ball in New York's Time Square to drop. You begin to imagine what the upcoming new year will bring. Love. Joy. Happiness. Peace. New adventures. New beginnings. Everything about that day was normal -- until five o'clock in the evening. Mom hadn't felt good that entire day and decided to turn in early but wanted me to wake up when it became the New Year. I promised I would, told her goodnight and I loved her. As she was walking into her bedroom, she looked at an old photo from when I was in middle school and she looked back at me with a strange look on her face and without a moment's hesitation, asked me "Where is Savannah?". Puzzled, I looked at her and told her that I was Savannah and that I was the girl in the picture. To me, I thought she was playing a prank and trying to see what reaction I would have. She knew me. She knew who I was. I am her daughter. Her baby as she often said to people. Then that late November night episode came back to mind again. She kept looking me, watching my expression and refusing to believe I was her daughter and what I was telling her was the truth. She began to question me, asking about the family and asking me about things that only "her Savannah" would know. I told her everything about each person in the family, about her and myself, rattling whatever came to my mind. She still refused to believe me and called up two family members. One told her they'd call back in a moment and the other wasn't home. I began to cry and felt lumps forming in my chest and lungs. It felt like I couldn't breathe, the room was spinning and there was nothing I could do to stop it. After what seemed like ages, my aunt called back and told mom that I was her daughter and the only daughter she had ever had. It finally clicked with her; she remembered everything. All she could was apologize and repeat that she wasn't thinking straight. I told her not to worry about it and she should get some rest.
That's when it finally sank in. My mother has Alzheimer's and there is nothing I can do to stop it from progressing. I wanted to go back to college in the spring but with this, I couldn't leave her alone. I couldn't risk something happening. I wanted her to be safe. Be healthy and taken care of but I had no idea what I could do except try to take a deep breath, say a prayer and hope that some miracle would happen.
As the new year began and the months started to go by, mom was starting to get worse. Yes, it was still in the early stages but it was still progressing. She soon forgot that her home was hers and that she'd lived in it for nearly 40 years. Then it was mood swings. She could go from happy and in a good mood all day or ready to argue about something another day. She wanted to leave the house and walk on the other side of town to go the store or visit with family or go to the cemetery and I would have to try my very best to stop her. I would have to run from one end of the house to the other to keep her from leaving, block the doors, having to take and hide the phone or make an excuse as to why I needed it and telling her as if she were a small child. Words cannot describe how guilty I felt when I had to do this.
May -- the month that everything changed. A month after she went to the doctor, her vitals were in good standing but she may want to think about giving up some of the things she loved -- mowing, yard work, going on walks on the other side of town unless I was with her and it was early morning or starting to turn to nighttime when it'd be more cooler. It wasn't what she wanted to hear but it was true. She, at 78, still felt young at heart and being so used to doing things like this on her own, did not want to give up what she loved. We finally got a neighbors' son to help with our yard work and mowing. But the walks were another story. She refused to give up and when I offered to do it, she would almost snap and tell me that I couldn't take it away from her. However, a family member went to a free health fair and after walking around, she came across CareTenders Home Health. I was all for it since mom did not want to go to the doctor -- even for a simple check up every few months or when she really needed to go. Mom on the other hand waged a war and did not want any part of it. No way, not in a million years was she about to let this happen. After hours of pleading with her, she decided to give a go with the program and surprise, surprise! She ended up liking it. Right before it was supposed to end, I had told our nurse and social worker that I was going back to school and that I did not feel safe for my mother to be alone. My mother on the other hand refused to believe that she had to have someone with her and repeatedly told me that she'd be fine ALONE. More than anything I wanted that for her. We all did. But sometimes life throws curve balls your way.
We knew of at least two options -- stay at home and have nurse stay with her but the process takes a long time and even with that, there is no guarantee that she would be approved for it and be able to get a nurse to stay with her. Secondly, there is nursing home or assisted living. For her to be eligible for the nursing home, she had to be dependent and need help. Remember how I said life throws you curve balls? Mom threw one right back at it. Even with her confusion and memory loss, mom is still able to be independent (she can get in/out of bed, get dressed, feed herself, so forth.) so her best option was in the assisted living apartment/home. We had a quick chat and determined that the assisted living would be best and that we'd tried to get her taken care of before I moved back to campus.
In the end, we got it done in a short span of time but I learned a lot more than I ever could've imagined in the past year alone. For example, broken, lumpy couches may not be the best bed but it could always be worse. It is possible to run on an hour and half to two hours of sleep. When your dog breaks the dryer and you don't have the time to get the washer set up and ready to go, hand washing clothes is a lot easier and quicker than you'd think. It is possible to learn new skills and improve your cooking game. Even if you have zero experience with children or taking care of someone else (human or animal), your parenting skills will kick in immediately when a situation arises.
I have no regrets about taking the time off to help take of my mother; she has done so much for me in the twenty-one years I've been alive and this was the best I could do to help repay her for it. I won't lie, it was frustrating and I cannot even begin to tell you how many nights I spent awake crying and having to tabs on my mom worried that something might happen but I never got upset with anyone or blamed anyone. Alzheimer's will affect someone's family and their life every 66 seconds and the best thing that you can do as family member, a friend, a neighbor or a sincere human is be kind, help them and be patient because it's a whole lot more complicated for them than it is for someone not having to go through the trials and tribulations of Alzheimer's. No one warns about how bad it gets and when it feels like it's at it's worst, all anyone tells you is that is the Alzheimer's but that doesn't help, it just makes it sting that much more. It is nothing like it is portrayed in the commercials for Namenda or housing for their care when the family can no longer care. It's not them just forgetting their name or yours or what the month or day or even year is or getting confused as to where they are at or where they live. It is the both of you fighting hard to remember. To remember your life. Your memories. Your stories that you've spent hours telling others about. It's feeling scared at three a.m. because you don't know what to expect due to their episode earlier that made you run and make sure that they can't escape and end up on the other side of town and you've got to hide things from them for their own safety. It's being an advocate, a voice, a lifeline for someone.
For me, that someone is my momma.