Living with Alzheimer's--A Family's Perspective: Thoughts on the Diagnosis--Dana's Story

I remember so clearly the first time that I realized that something was really wrong with Dad. This event occurred right around the time of the 40th wedding anniversary party. We had all been outside at Mom and Dad's house playing catch with the softball in the yard. Dad was always very particular about the care of his softball gloves. His gloves must always be rubbed down with oil, cleaned, and put away after use. As children, we knew not to ever leave our gloves outside in the grass. We were finished playing catch in the yard with the kids, and Dad was putting things away. He could not find his softball glove. He started searching high and low, and soon we all began helping in the search. He was quite anxious and frantic that the glove must be found right away. It was nowhere to be found. I asked him if he still stored his gloves where he always had. He said that he did and then went to look there. His glove was right on the shelf where he had always kept it for years. He took it down from the shelf, and looked as if he had seen a ghost. He looked at me with a very confused look and said, "I have no memory of putting it away." I tried to play it down, but I felt like crying. I told him that there was a lot going on and in all of the hustle and bustle, he must have just forgotten.

Deep down, I knew that something more was going on. I had recently noticed a much higher level of anxiety in him and at times he seemed almost depressed. I was hoping that he was just struggling with some anxiety and depression due to life changes such as retirement and becoming an empty nester. I was hopeful that he could eventually see a doctor for some medication and learn to adjust to a new normal for him and Mom. In my mind, I knew that I could not handle the thought of my dad having something as dreadful as Alzheimer's Disease. He was much too young, healthy, and vibrant for something like this. I prayed, "Please dear God, don't let this happen to my dad!" Deep down in my heart, I knew.

I don't remember the specifics of being told that Dad truly had Alzheimer's Disease. I think Mom called and told me over the phone. I just know that I couldn't talk about it immediately because I did not want my kids to know. I felt that it was very important to keep this dreaded news from them for as long as possible because I feared that it may change their relationship with him.

We live nearby and we see my parents daily. As soon as I found out, I felt myself begin to pull back a bit from my dad. I still wanted to cherish every moment with him, but at the same time I was battling a feeling that this was the beginning of a very long process of saying good-bye to a man that I loved, a man that had been a protector for all of my life, a man who loved my children dearly, a man who was always so full of life, laughter, whit and fun. I didn't want my children to pull back. I wanted them to enjoy Grandpa as long as possible and not worry about what was to come.

I do remember being in the basement at my house with my husband when I told him the dreaded news that we had just received. I knew that the diagnosis was coming, but I also knew that I would never be ready to face the news once it arrived. I started to tell him and then I just cried, and cried, and cried, and cried. I wasn't sure if the tears would ever stop. He hugged me and assured me that he would walk this road with me, and that God would be with us every step of the way.

I knew what was ahead for us. I was fifteen years old when my mom's stepdad (Grandpa Brown) lost his battle to Alzheimer's Disease. I remember all too well how I felt on my last visit with him when he did not know who I was. It was so hard for me as a teenage girl. I started doing the math and realizing that this would be happening for my daughter someday.

Our last 5K with dad/grandpa, May 2011

I chose not to tell my children for about two years. By this time, it was becoming so clear that I knew it was time to talk with them. I told my kids one at at time. I first told Katey, when we were alone one day, when she was about 13 years old. I asked if she had noticed Grandpa's struggles with various things, and then began to explain Alzheimer's Disease. She said that she wasn't surprised to learn this because she knew that something was wrong, and wondered why it had been so long since he was in the driver's seat of the car. I asked her if she wished that I had told her earlier, and explained why I had waited. She was fine with me waiting to tell her, but she had already pretty much figured it out on her own. She didn't cry, but I knew that she was internalizing this information. She loved Grandpa, and Grandpa loved her. In Grandpa's eyes, she could do no wrong.

Shortly after that, I told Cameron the news. He was about 10 years old at the time. He took the news very differently. He was very surprised, but once I started pointing out things about how we always order from the menu for Grandpa, Grandma drives all of the time, and the time that he was playing checkers with Grandpa and Grandpa kept taking his black chips...Grandpa really couldn't remember which color he was...it started making sense to Cameron. He thought Grandpa was joking about the checkers game. It was no joke. I began to explain about the disease, and asked if he understood why I had waited so long to tell him. He said that he was fine with my decision to wait to tell him, but he was glad that I told him when I did. He said, "Now, I know to be more patient with Grandpa." What a sweet, sweet little grandson! We then went on to talk about all of the things that Grandpa could still do with them. I told both of my kids that we would still be making memories with Grandpa; memories that we would always remember. I asked them to focus on the things that we could still do together: hikes in the woods, playing on the tire swing, playing in the treehouse, watching movies together, the list was long. It was important to me that we lived each day, focusing on the fun at the moment and not worrying about what we knew would be ahead for us.

Collin, Grandpa, and Cameron

Enjoying a "good moment"

April 2014

I chose not to tell Collin about Grandpa's diagnosis until much later. Collin has a chromosome disorder and is globally developmentally delayed. I knew that at this point in time, he would not understand. This is a very interesting relationship. Collin was born with special needs, and my dad always had a love for those with special needs. He grew up with a niece that was severely, multiply disabled and helped care for her for many years. When Collin came along, my dad did everything he could to help, and loved our sweet Collin dearly. Collin was Grandpa's little buddy and they both loved their time together. Collin's relationship with his grandpa never changed, but the roles reversed. Grandpa used to care for Collin, and in the later days Collin would care for Grandpa. Collin would visit Grandpa at the care facility regularly with me. He would ask the caregivers how Grandpa's day had been, if he had slept well, and to be sure and feed Grandpa if he missed dinner because he was sleeping.

As the disease progressed, my dad struggled with agitation more and more. We could sometimes put Collin on his lap, ask Collin to just lean back onto him and be silent, and Grandpa would calm and go to sleep. My dad would sometimes nuzzle into the back of Collin's neck and smell him. He was at the point in the disease that he couldn't tell you who Collin was, but Collin was familiar...Collin was better than any therapy known to man. Once the disease had progressed to this level of severity, I started to explain to Collin about Alzheimer's Disease in a way that he could understand. I also started to tell him that someday Grandpa would be going to heaven. Collin was 10 years old at the time.