Very early in my journey into life with a parent who has dementia, I read that “meeting one person with dementia, is like meeting one person with dementia.” We all want rules to follow, guides to help us know how to help our loved ones, and simple answers. That just isn’t possible given all the types of dementia and types of people.
While my mom would become very argumentative, my dad did not and seemed to fade away. As I watched two parents with different dementia’s and managing through varied life changes, the only rule I found was that being calm and positive were the only emotions to bring to a visit.
When mom would get argumentative, initially I would engage, just like I always did. We were able to disagree and challenged each other from silly to serious topics. When I realized our conversations were only making mom angrier and more agitated, I changed. It was not easy.
I recognized that my mom was losing the ability to change, so I needed to change. My sister-in-law who has been helping individuals with head injuries for over two decades always had good advice. At one point, I realized that if I considered that mom had an external head injury, the changes in her behavior made more sense to me and it was easier for me to change to adapt to the battle going on inside of her that I could not comprehend.
After my dad died, my mom was having a lot of conflict in her assisted living community. I always knew that together my parents were better. Without my dad as her companion, my mom no longer had something that constantly grounded and provided her with comfort. She started to verbally and physically act out. This was one of the reasons I started to search for a new community. Mom was not in a place that could support her needs.
I am not really going to answer the question I posed, because I still don’t know if anything is “normal” with dementia beyond the aching sense of loss we all experience. Changed.
I had a terrible visit with my Mom. Things had been going so well and while I was saddened by her decline and inability to remember me, she has been pleasant to me for several months. It made me wonder, was it me, was it her, or a little of both?
She was happy to see me, but started to get contentious over the ice cubes, her laundry, the trash can liner. When I told her I started a load of laundry when she was finishing up her BINGO game, she challenged that I would be so “presumptuous” as to take her laundry and put it in the washing machine. When I told her it was in the laundry basket, she backed down. When she wanted ice cubes and there weren’t any in the freezer, she wanted to know why I took all of the ice cubes. When she saw trash in the garbage can without a liner, she wanted to know why I put trash in the can without a liner. I hadn’t done any of those things, but had simply arrived and started a load of knowing we could finish doing it together.
I recognize how frustrating this disease must be to the sufferer. My Mom has always been independent and resourceful and now she needs help. She doesn’t like it — I know I might not do so well under the same circumstances.
I marvel at her ability to easily and succinctly chide me for a perceived wrong and then be unable to finish a sentence when we are chatting about the family.
As I was leaving, I wondered if somehow, she could feel my frustration today. I thought I left my worries at the door, but did I somehow move too fast or rush her through a task that just made her mad. I remember something Bob DeMarco wrote about his mother Dotty who would say “No Push, Push” when the pace of activity was too rapid for her to process. Had I moved too fast today?
Lurking in the back of my mind, I wonder if she forgets I’m her daughter and just thinks I’m messing in business that isn’t mine to manage. Contemplated.
Today is the day we move my parents. My last sibling arrived late last night so we could all show up to help our parents with the move. My home can’t manage all 3 of my siblings comfortably, so one brother and sister stay in my parent’s town house, and another brother stays with me at our house. We decide to meet in the morning and set the game plan over breakfast.
Our parent’s are looking forward to having all the kids in town. After they were notified and we spent the rest of the day discussing and dealing with our very agitated mom, we stopped talking about the move. When we set the timing with the Executive Director of the retirement community, she strongly suggested that someone stay with my parents full-time after they are notified. My oldest brother W. was the freshest, so he took the last day and a half with my parents.
At so many twists and turns, our parents have surprised us. We were concerned they would leave the retirement community and go stay in a hotel. By not raising the subject, we have avoided the debate. By day two my mom had either forgotten the impending move or assumed her refusal to accept it made it go away.
Today we will arrive a half hour before the movers are set to show up. We know it’s not going to be easy, but the day is here and we need to help our parent’s manage through and make this transition. It’s the best place for them going forward. Undertaken.
For the better part of two years, my mom has been uncharacteristically suspicious and mean. It took me a while to adapt to the understanding that the changes in her brain were altering her personality in negative ways. My survival mechanism has been to remind myself, over and over, that my mom has a head injury. It helped me better understand how to approach and interact with my mom.
I have three people I want to thank for helping me adjust my mindset:
Lynda Alicudo with Leading Executive who suggested I start to mourn the loss of my mother. It helped me appreciate the familiar moments with my mom and recognize that her behavior was not personal.
As I reflect on how much my mom has changed, I realize how much I have changed. My mom is unable to adapt, so I had to adapt.
I also recognize that people change and move in and out of our lives as we age. My friendships have changed as circumstances and personal choices divide and reconnect us over the years. I understand that right now, I don’t like my mom. However, I will ensure that she is safe and happy and enjoy the moments when the mom who raises me reappears. Thank you to the women in my life who have helped me on this journey. Appreciated.