Thoughts on the Diagnosis--Kerry's Story

*Phone rings*
Me: Hello.
Mom:  Kerry, we met with your dad's doctor today.  He has Alzheimer's.  BUT, we're okay!  This is the journey God has given us, and we will walk through it together.  We just need to make lots of memories.
Me:  I'm so sorry, mom.  We'll talk soon.  *uncontrollable tears*

That phone call will forever ring in my ears, and bring me to tears.

I was devastated.

After the changes we had witnessed in dad, I wasn't surprised with the diagnosis, but I had hope.

Hope that it would be something else.  Anything else...but Alzheimer's.  

In that moment, the hope was gone, and I knew what was to come.  I had seen it before in my grandpa, my mom's step father.  I could not bear the thought of it happening to my dad.  I was only in my mid-thirties. My children are so young.  Some of them will never remember their papa.  It just doesn't seem fair.  He is too young.

I had a couple of fears.
One: I feared that my dad's temper, from my childhood years, would return.
Two: I feared the day that my dad would no longer know me.

Both of those fears have come true.

I called my mom nearly every day of the week to check on her and dad.  I asked her numerous times if his temper had returned.  After dad was diagnosed and put on medication, her answer was always the same, "He is as sweet as can be!"  But, in the Summer of 2013 that changed.  Suddenly, almost overnight, the paranoia and delusions that doctor's told us would eventually come, fiercely came to her life...to our lives. He accused us kids of stealing his money, and house, and jeep, and within a few weeks he began accusing my mom of cheating on him.  It is not his fault.  It is not his fault.  It is the fault of this living nightmare that is embracing him...the one our entire family wishes to awake from.  It is this horrible disease called ... "Alzheimer's."

It has stolen my dad from our family.  
It has stolen him from his wife of over 48 years.  
It has stolen him from his grandkids who, once upon a time, he adored.

The other fear, the one when my dad would no longer know me, came true a little over a year later.  It was October of 2013.  I had come into town to run a 5K with Danny, and his family, and Dana.  The following day we had plans to pick up dad at his Memory Care facility and participate in our first Walk for Alzheimer's. (For me, the walk was completely depressing.  I fought tears the entire time.  I didn't want to be surrounded by people who had Alzheimer's.  I didn't want to be surrounded by people who were grieving like me.  It was too hard. If it weren't for my cousin, Sam, walking alongside me and talking to me, I probably would have left.)  I went to the facility with my mom and my baby, Ligon, to pick up my dad. When he saw me, he smiled.  One of his caregivers said, "Dan, who is this beautiful girl and baby who came to see you?"  Again, he smiled big and said, "I'm sorry, I don't know who you are."  I was crushed.  It was a new level of grief due to this disease.  Alzheimer's was an even more reviled enemy than before.  It was winning.  I was losing...my dad.  I was no longer his "baby girl."  I was a stranger.

The following April, my kids and I made the trip back to Kansas to see my mom and dad.  I had prayed for months that God would give me a lucid moment with my dad, and that, if even for a moment, that he would know who I was and call me by name.  God answered to my heart's desire!  When I first walked in, my dad shuffled around the corner, and looked up.  He smiled and walked over to me.  He said, "You look really familiar."  My heart sunk, but I introduced myself and took him to his room to put his shoes on.  As I was getting his shoes out of his closet, he smiled and slapped his leg and said, "I know you!  I know who you are!  I am so sorry!  Wow!  I am so glad you're here!"  I grabbed him and hugged as tight and as long as he would allow, with tears in my eyes.  I sat him in a chair and got down on my knees to put his shoes on.  He looked down at me and said, "Boy, you are such a beautiful girl!  I can't believe you're here."  That is a memory I will treasure forever!  

When I left my dad that day, and got into my car, I called my husband and told him what happened.  I said, "If that is the only good visit I get this time...I'll take it!"  Sadly, it was the only "good" visit that week.  The rest of the week he was highly agitated, and I will admit that I was a little fearful of him at every visit.  Before going to see him the last time during that visit, I prayed, "God, please let me leave him in peace."  Again, God answered in a wonderful way.  My dad was peacefully sleeping in a chair when I left him.

A few months ago, I went back to Kansas to see my dad and mom again.  I fear Winter's for my dad's health, and want every chance I can get to spend time with him.  My visit's with him were very hard, and sad. The light in his eyes is completely gone.  At times, his eyes are so glazed over that I'm not sure he can even see where he is walking.  My visits were filled with holding his hand while he paced the hallway.  He is still paranoid.  He is still delusional.  He still has hallucinations.  

It's almost like he isn't even my dad anymore...he is Alzheimer's.  I miss my dad.

Many nights I cry myself to sleep while I pray that God would allow my dad to sleep.  Sometimes, sleep doesn't come to him for three to four days at a time.  I pray that God will take my dad soon, so he can finally be at peace.  As hard as it would be to say a final goodbye, it is an earthly goodbye.  Heaven will be sweet! I will get to have my earthly father, and my Heavenly Father in one place!  My dad will be free!

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.

Collin and Grandpa holding hands

A special connection

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