Thoughts on the Diagnosis--Danny's Story

When we found out that my Dad had Alzheimer’s it was a little shocking, and hard to believe at the same time. I felt numbed by it, and hoped for the best at the same time. It was very similar to getting a diagnosis for cancer, hearing that there is no cure, but knowing that it could go on for years. There were so many unknowns going through my mind like...How quick will it progress? What will happen next? How will Dad change as this progresses? Unfortunately, in the beginning, there is no way to know. 

Before the diagnosis, my Dad and I were talking over the phone and he was hooking up a modem. I was instructing him to plug the phone line in the phone jack slot and to plug the Ethernet cable into the Ethernet slot. My Dad was struggling to figure out how to plug these in. I was almost frustrated with him because he had worked for the phone company for nearly 40 years and could not seem to figure out this simple task.

After the diagnosis, this made sense.

I would encourage everyone to be incredibly patient with all elderly people. We have no idea what changes they may be going through. 

Our Dad struggled with anxiety shortly after this incident. He had been in a hurry and uptight at times, but now the things he was getting uptight about were so incredibly simple.  We just had to diffuse the situation the best we could and try to redirect Dad, and stay positive. Things were still under control, so I didn’t worry about Dad too much at that time. 

Back then, I would see my Mom and Dad approximately once every three months. I could see little changes in his memory, thinking process, and behavior with each visit. He had been going downhill gradually like this for a period of about 6 six years. I could tell that Dad was doing his best to be normal as much as he could. This was sad to see, and to know there was nothing we could do. 

I was really nervous to see if he would someday volunteer to give up his driver’s license. Luckily, Dad reached a point where he made the decision to quit driving. I think he knew how horrible he would feel if he ever, unintentionally, hurt anyone else. It was not an easy decision.

When I came to town, and he and I had to drive somewhere, he would talk while I was driving. He would try to share what was going on and what he was feeling. It was difficult for him to let go of the control. This was very sad, not to a point that made me cry or upset, but the realization that this progression was real and not going to get better. I always tried to prepare myself for the day that Dad might not remember me. I knew it would eventually happen, so I really soaked up these times together.

Dad started taking more medication for the anxiety and it really helped for quite a while. It definitely brought peace, and calm, to Dad. One weekend, when I came home, Dad shared with me that he had apologized to some people for things he had done years ago that he regretted. It was apparent that he knew there was no turning back, and getting better. For my Dad to do this was a clear sign he was preparing for the worst to come. This was sad, but also comforting that he would try to make peace. He pulled me aside and apologized for some things he did when I was a kid and I quickly forgave him. At this point, I was afraid things were going to speed up. When someone waits over 30 years to apologize, you know they are preparing for the end. 

A year later, Mom had been calling and giving me updates. This call was different. She had stated how hard it was getting to take care of Dad and to get him to cooperate. I decided to come visit for the weekend, so Mom could go do some shopping on her own, and maybe get a little break. I won’t share all of the details at this time, but let me just say that I arrived Friday, and by noon on Saturday, I was calling Mom asking for help. She had just been gone shopping for a few hours. Dad was out of control, angry, and I could not reason with him. It felt like the disease now had control of all of us. I was at a loss, and did not know what to do. 

It was 100 degrees at this time and Dad just wanted to stay outside, wander around cutting every tree branch he could reach, and do weed eating in weird areas. The things he would do did not make sense. We let him go in hopes that he would be happy and calm down. He would not listen to us, or cooperate. He would not come inside to cool off, or drink water, and refused to take his medications.

It was out of control. 

This was the day that us kids realized that Mom could not continue to do this by herself. I am a grown man in my 40’s and I left Sunday afternoon completely drained and exhausted. Out of control is the only way I know to explain this phase of the disease.

That Saturday, my Mom and I hugged and cried because we knew that things would be very different from that day on. We had to make some hard decisions and make sure we did what was best for Dad. He could not be trusted to make reasonable decisions on his own. Weeks after this episode, Dad was admitted to a memory care facility, after much consideration. Things were really speeding up with Dad’s progression. 

When I came to visit Dad at home, and in his new home, he would always say “Hey Dan!”. That dreadful day finally came, when it was apparent that he did not recognize me. My wife and daughters were with me so I had hoped he would recognize them. He dearly loved his grandkids. I told him I brought the girls to visit, and it was as if he looked right through them. He had no clue who any of us were. 

This was the day I found out what it would be like to not have my Dad recognize me.

No matter how much you try to prepare, it still feels like being hit with a ton of bricks. Until you see it and experience it, there is just no way to prepare. 

Luckily, Dad had some good days after that, and he did recognize me again. The conversations have continued to dwindle to be almost meaningless. During this process, Dad has lost all of his emotions and personality. It is as if our Dad’s body continues to live on, but the Dad we knew is not there. From the time he was moved to his new home, up to the present, there have been more tears than I would have ever imagined. This has been the most hopeless, and difficult, part of the disease. Someday, our Dad’s brain and body will no longer be able to continue. 

Please know that if I don’t shed any tears at the funeral it is only because our family has now had years of tears and grieving. We just want the best for him, to make him as happy and comfortable as possible. There have been so many healthcare professionals that I am very grateful for that have really tried to help during this entire process.

Danny