Alzhiemer’s – Natalie Nicole Blue

Quick note: Throughout the process of detailing my journey here, my goal, above all else, has been honesty. I want to continue to be real and raw about this process. My goal of this blog was to reach those who have family members suffering from Alzheimer’s or terminal illnesses. I want to show people that you can continue to live and find joy in small things while enduring severe suffering and heart wrenching pain. That’s why I am here. I want to say again, in case I haven’t made it clear already, I’ve learned a few things that have really helped me to make it through to this stage in this journey and if there is any way that I can help you in your journey, please let me know.

I think I have finally settled into this new stage of Alzheimer’s. It is not a comfortable place to be but I think I have come to terms with it. As a reminder, last time I visited my family (caregiving dad and mother who is sick with Alzheimer’s) in Hawaii we determined our PLAN, our plan of what we will do when my mom’s body finishes her fight. We decided upon details of how we will tell each other the news, how we want to find out and what we will do immediately following. We also had to plan my moms funeral and make decisions for her, decisions that she should have been able to make for herself. It can be days from now, weeks from now or even years. There is no way of telling.

I want to caution to those who may not be in a place where they can hear this, I’m going to speak below about some of the ways Alzheimer’s patients can die.
There are a few ways that people die from Alzheimer’s. It’s important to keep in mind that the disease itself does not kill you. Instead, it deteriorates your brain cells and causes your body to slowly stop working. The ideal way would be for my mom to pass away peacefully in her sleep. However, that is not always the case. My mom may stop eating and become weak and susceptible to infections. She could become unable to swallow or cough which could cause food or water to get in her lungs and develop pneumonia. She could choke on her tongue and suffocate. Please know that this is not easy for me to type. The least ideal way would be that my mom’s organs stop working causing her to suffer in pain. My dad and his team of hospice nurses have a plan for all of these scenarios. The main goal is to eliminate suffering so that she does not leave us in pain. My dad and the nurses have morphine in the house to use when something starts to occur. There is no resuscitating because there is no hope of recovery and there is no way to cure my mom of this awful disease.

Out of all of the stages of Alzheimer’s, the end stage is the most unique. It has given my dad and I a chance to look back over this journey and feel immensely proud. We are proud of the choices we made in the early stage: to care for my mom at home and cherish the moments when she knew who we were. We are proud of my decision during the middle stage: to continue college, stop being a caregiver and try to go on living my life. I am the most proud however, of how my dad has dealt with the late stage or end stage: moving to Hawaii, building a house suitable for a wheel chair and living out his marital vows, ti’l death do us part. We are going to see this through together as a family and because of that we feel immensely proud.

I grew up in Laguna Niguel, CA. My immediate family consisted of my dad, mom, cousin Sandee and our two mini shelties (Misty and Roxy).

When I was 14 years old my dad and I noticed changes in my mom. We would go out in the backyard and talk about each change we saw. Majority of my input was that she was forgetting to flush the toilet, loosing track of time and not knowing what day it was. My dad had more insight to what might be happening. My mom used to lay in bed with him at night and say “John, I don’t feel right. Something is happening.” Together we noticed she wasn’t as happy as she used to be and was becoming more forgetful. Things like getting lost on her way to her best friend’s house or not knowing what month we were in became normal in our small family of three. Frequent doctor visits just made our family more confused about what was happening to our mom.

Life continued. I was busy being a high school student, volleyball player and frequent beach goer. My dad worked as a real estate appraiser and our two little dogs played in the yard and barked at the mailman.

I started school at Point Loma Nazarene University in 2009. I played on the volleyball team so I had a busy semester. I would often call home to whine about how sore my body was. I was consumed in my new college life and didn’t expect what was soon coming.

When I went home for Christmas break, my dad told me that he had made arrangements for us to go to a class together. I was of course very confused but he assured me that it would be fun. We went to dinner with our cousin Sandee and Aunt Joan. I never asked where my mom was. Some part of me already knew what was happening.

After dinner at CPK we drove up to a tall medical building. We got in the elevator and headed up to the 3rd floor. When we stepped out of the elevator a lady from the Alzheimer’s Association greeted us and said, “I would like to welcome you to the class where you will be learning how to live with someone who has Alzheimer’s.” It was in that exact moment that I learned my mom had been diagnosed with early on-set Alzheimer ’s disease, while I was away at school. My entire body went numb. I had no idea what that meant but I knew it wasn’t good. I don’t remember walking into the classroom or how I sat down in a chair. I never looked at the lady from the Alzheimer’s Association. She delivered the worst news I have ever gotten in my entire life. I couldn’t look at her. In fact, I didn’t make eye contact with anyone in the entire room that night. I starred off at a fake potted plant across the room as she went through her power point of information. I distinctly remember the slide that contained the most hurtful information I have ever heard.

“Alzheimer’s disease is fatal. There is no cure.” blah blah blah

“The average life span after diagnosis is 8 years.”

I didn’t cry in the room. The back of my throat hurt more than it ever has. I was holding back a storm of tears for over an hour.

After we left my dad and I got in the car. I wish I could remember what we talked about. Soon after we arrived at my moms best friends house. We walked in through the open garage and found my mom and her bestie in the kitchen laughing. She was so happy. I’ll never forget hearing her laugh that night. I walked up to her just as a mother would picking up her child from day care and hugged her tight, told her I loved her and asked what she did while they were together.

We never told my mom about the class and we never talked about that night again.

I jumped instantly into the role of my mothers caregiver at age 17. In the beginning that meant reminding her what day it was and going with her to get her nails done. I did my best to hold her hand, tell her I loved her and enjoy the stories she would tell me.

It happened quick. Within a year my mom no longer knew who my dad or I was. It didn’t happen within one day like I feared it would. She gradually forgot us. It made it easier.

I completed my internship with the Alzheimer’s Association during college and after graduation began working as the San Diego Alzheimer’s Association Outreach Coordinator. Working for the Alzheimer’s Association was an amazing platform for me to be able to share my story with thousands of people. Eventually, working it and living it became too much and I decided to leave the Association to start a new career. I am restarting this blog to continue to reach people who are looking support and share my Dad and I’s story.

You will find more details and updates of our journey within this blog.

Tag: Alzhiemer’s

Mother’s Day and End Stage ALZ

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