Dementia/Alzheimers is a topic that is near and dear to me. This topic makes me go through an array of emotions. When I think about it, I get sad, angry, and motivated but mostly scared. Dementia and Alzheimers is a condition that runs on both my paternal and maternal sides of the family. It has taken so many people from me, and I am afraid of who will be next.
I remember when my grandmother was first diagnosed. It was hard for everyone, especially her. If you knew her, you know she was involved in everything. She knew everything. She knew everyone. So to watch the decline of all things Her…it was hard. Looking back to a few months before her diagnosis, I noticed a change in her behavior. Simple things like cooking certain meals that she made ALL the time were not the same anymore. She would forget key ingredients but swear she put them in. She was an avid Bingo player and went to the same Bingo parlor every week but weeks leading up to her diagnoses she was getting lost coming home from that same Bingo parlor. That was not like her. That’s when the family realized they needed to step in, which came with some major push back. She was independent and the thought of taking her independence was not something she was happy about. However, the family knew it was in her best interest. It hurt watching her push back and getting upset over the changes. The hardest was watching the family take her drivers license away. I remember her taking my kids to school and baseball events when I had to work. So, knowing she could not drive anymore was hard for me to watch. My best friend was changing. Life as I knew it with her would never be the same.
The condition took over her body quickly. She was forgetting things left and right. You could leave her room, walk down the hall and come back a few minutes later and she’d ask “when did you get here?” I always laughed it off because I never wanted to make her feel bad (even though I was not even sure what she felt). I would always say to her, “Gorgeous I just got here and went to put my stuff down so I could come give you a big hug,” she would just smile at me like nothing happened. Those were the early days. She went through so many stages with this condition. At first, she was still “like” herself, but then she became mean. She was snappy for no reason. Then she became childlike. As the condition got worse, she stopped talking altogether. This is where my anger set in with this condition, not with her. I hated watching her not being able to express herself or just give you simple commands like “I have to go to the bathroom.”
Remembering the good times is what helped during the many stages of dementia. She and I loved going to Long Nails on King to get our nails done. We also loved going out to eat and having a nice cocktail (of course that did not happen till I was of age). Shopping was always fun with her because she would always let me add stuff and get what I wanted. So, naturally when things got rough with the dementia, I tried my best to maintain those things for her. We did not go out as much to do the things, so I brought them to her. I would bring all my nail tools to her and we would have Mani/Pedi days done by me. Even though she could not verbally say anything to me I would talk to her and wait for the little grin or grunt she would give me. When I would visit her in the home, I would try to get there around lunch time, so it was like we were having lunch together like before.
The dreadful call on Father’s Day – My Gorgeous – My Grammie – My Best Friend – The Matriarch of the Family – has passed. I replay that day over and over again in my head. I walked down the stairs at my cousin's house with my eyes filled with tears. She grabbed me and held me. It felt like a piece of me drifted out of my body. I was going to miss our weekly Facetime videos of me talking to her and getting that half a smile or grunt. I was going to miss seeing her on my next trip back home to Cali. I knew she was at peace, but I was going to miss her physical self being here. What does this mean for the family? She was the Matriarch. She was the glue that held us together. The family was going to fall and crumble with her gone. As much as I did not want that to be the reality – it was.
I started thinking about myself, would I end up with Dementia and Alzheimer one day? Is there something I can do to prevent it? I know it runs in my family so I am always wondering who will be next. Will my mom end up having it and what will that look like? Will I have to quit my job to become her caregiver? So many questions run through my head. Will I be the best person to care for my mom if she gets it? I watched her take care of my grandmother until she could no longer physically take care of her, and the toll it took on her. If I get it, how will that look for my children? So many thoughts the worst being the fear of the unknown. I wish there was a cure for it. I hate that so many of our loved ones are battling this condition with no cure in sight. They are trapped in their minds and can’t express themselves. I can only imagine the paint they are feeling. I am motivated to help raise more awareness and funding to find a cure for this horrible condition.
Personal Note: I also want to give a shout out to all the caregivers out there caring for someone with Dementia and Alzheimer’s. It takes a special person with a heart of gold to do that work. My grandmother was blessed to be surrounded with a wonderful care team that supported her through every stage and I say THANK YOU to them all.