“…weeping may stay for the night,
but joy comes in the morning.” Pslam 30:5
Something to note is that, each Alzheimer’s patient shows different signs of Alzheimer’s. No case is the same because different parts of the brain deteriorate at different times for different people. The stigma around Alzheimer’s is that you become forgetful and the only symptom is memory loss. Those of us who have witnessed the digression of our loved ones know this is not always the case.
Here are some of the early signs of Alzheimer’s to look out for and my experiences with each of them:
- Forgetfulness – not just memories but how to do things that require sequential steps (i.e. making coffee, writing a check)
- My mom was a hair dresser for 29 years. She colored my hair for me since I was 16 and I will never forget sitting in her styling chair, watching her struggle silently to remember the next step in the coloring process. I had enough experience to know that what she was doing was not right and instantly noticed her confusion. This was one of the best memories that I have from the dark times (I refer to the dark times as when my dad and I knew something was wrong but were waiting for answers). It is one of my favorite memories, not because we were spending time together and not because we had great conversation but because I am proud of how I responded in that moment. As soon as I realized something was off I told her “Mom, how about we just shampoo and condition me today and go get some lunch together?” I remember her smile and look of relief. I never mentioned anything to her and I am so glad I didn’t. Instead, I remember trying to relish the feeling of her shampooing my hair, the feeling of my mom taking care of me, recognizing that things were changing and that this may be the last time I experienced either of those feelings. Something inside me told me that the roles might soon be reversed and that I would be taking care of her from now on.
- Personality Changes – mood swings and depression are common early signs of Alzheimer’s
- My mom became very reserved and somber during the time we started to notice things. She would often lay in bed crying with my dad telling him, “something is wrong, I feel off.” It might sound weird but I love knowing that my mom was trying to communicate this to my dad. It makes me feel relieved to know that my dad would hold her in bed at night and tell her, “it’s okay, I am going to take care of you and we will figure this out.”
- Struggle with time and dates – Not knowing what day it is or how to read a clock
- This symptom was the most alarming to my dad and I. My mom was a huge planner. In our house, we always had a giant calendar filled with dates and activities coming up in the future. Mom couldn’t tell you what day it was when she woke up, nor could she tell you what was happening that day. In the beginning, my dad helped her for a long time by getting her organized for each day at the salon. He would write down her appointments and the times they were at in a clear way that she could understand. Her friend Mary at work helped her handle money at the end of each appointment. Eventually my mom started missing appointments and loosing clients and thats when my dad decided it was time to remove her from work. – Thank you Mary, for being so kind to my mom when everyone else at work would make fun of her.
- Difficulty with directions – not reading a map but simple directions like how to get to a best friends house or to work.
- My mom got lost one day driving to her best friend, Margie’s house.
- Misplacing things and not being able to retrace steps – when someone without Alzheimer’s looses something they can think back to where they were the last time they had that item and retrace their steps. Someone showing early signs of Alzheimer’s will not be able retrace their steps, becoming easily agitated and suspicious.
- Sadly, a lot of the dark times consisted of my mom suspecting me of stealing her things. She would yell at me and tell me that I stole her purse, makeup, clothes, shoes, etc. It was something different everyday. It broke my heart to watch her become so unbelievably confused to the point where she would blame me for her confusion and often become violent towards me in her state of confused rage. I didn’t sleep well during the dark times because to be completely honest I was afraid of my own mom. She was out of control and unable to predict. I would lay awake at night scared that she would come into my room – I wasn’t scared of her hurting me because I am significantly bigger than her and could defend myself but I would look up at the ceiling hoping she wouldn’t come in my room because I was terrified of her breaking my 17 year old heart even more. I don’t blame my mom, I blame the small tangles at the end of each nerve cell in her brain. The ones that were clumping together killing off my mom’s judgement.
- Not knowing where they are or how they got there – Alzheimer’s patients can become confused about where they are and often think they are somewhere entirely incorrect.
- If you are at a stage where you are just beginning to learn about Alzheimer’s, “Sundowners,” is a word to familiarize yourself with. It means – “a person with dementia who becomes increasingly irritable or difficult as the day progresses.” Each night, as the sun went down, my dad and I learned to prepare ourselves for the worst. We could get through each day by gently reminding her what day it was, the time of anything happening that day, and often just relaxing together by watching tv. However, when the sun went down she became substantially more confused and below is exactly why I refer to the dark times as being dark. *deep breath*
- The sun would begin to set and each night she would start off by saying, “I want to go home.” My dad and I would respond calmly by reminding her, “you are home.” She would continue to repeat her phrase and we would continue to repeat ours. Each time she would say it with a little bit more passion than the time before. This cycle would continue until she would pick up her purse and head for the door. My dad and I would do our best to get in-between her and the exit. We knew that if she went outside alone or got in the car to drive, she would end up lost, hurt, or something much worse. We would try to calm her down by saying, “you are home. Look, here is your closet, our dogs, the kitchen.” It didn’t help. Nothing did. She would continue to get more and more aggitated. She would begin using vulgar language, calling us all sorts of horrible names. This would all build up to eventually my dad physically restraining her by holding her back and me trying anything I could to break through to her. I would look her in the eyes and try my hardest to reach in to find her. I knew she was in there behind the confusion, distress and the anger but I couldn’t get through. I remember praying that the neighbors wouldn’t be able to hear the screaming that would go on during these scenes. I can’t imagine what they would have thought was going on. Each night was like a murder scene and all three of us were left lifeless. The match would go on for hours until all of us were in tears and left physically and emotionally exhausted.
Each stage comes and goes with Alzheimer’s. Its similar to raising a baby where each stage is different and is a new challenge. If you are about to go through this or are in the thick of it, I want to encourage you that this will not last forever. That the pain and chaos that surrounds you will eventually fade. Joy always comes in the morning.
ADVICE:
- Do not argue with them – Go along with whatever it is they know to be true in the moment. Do not try to argue or reason with them. Be sure that they will not hurt themselves or others but then let them think whatever they want.
- Do not take anything they say or do to heart – Alzheimer’s patients sometimes do not know what they are saying or doing and therefore you should try your best to instantly let whatever it is they say or do go. This is easier said than done but I wish someone would have told me to do this while it was all happening. Friends and family members stopped coming to visit because they were offended by something my mom said. Make sure the people around you know that they do not always mean what they say.
- Try to enjoy the times they are calm and “with it” – In the beginning we noticed that my mom would be “with it” (meaning able to think freely and acting herself) and then there were times she was “gone” (lost and confused and not acting herself). Hang on to the times they are “with it” and do everything you can to have conversations, ask questions and share memories together.