Steady Decline - What a difference a few months makes!

For my dad, Alzheimer's has been more like a roller coaster...steep up's and down's, and quick turns, and lots of unexpected's. We constantly wait for the next fast decline, and still, it always catches us by surprise. Decline is always there, but dad has experienced more of a "I'm going to pull the rug out from under you" kind of declines.

Last December, Dad was weaned off two of his medications. We were nervous about the change, but the State requires medication changes, periodically. The State is also very cautious to make sure that patients are not over-medicated. They have strict guidelines in place, and dad's facility is careful to follow those guidelines. Thankfully, dad's caregivers have no desire to over-medicate him to keep him in a drugged state. Even in the toughest of days, they work very hard to calm him without extra medication. One of his caregivers is very sweet to rub dad's chest, back, or massage his hands to try to calm him.

After being weaned off two of his medications, they slowly began giving him two new medications. By the time his anti-psychotic was out of his system, dad was in a terrible state of psychosis. We were eager for them to find a new medication to help him. Thankfully, his new anti-psychotic has worked even better than the last one, and his other medication was able to give him the gift of a few hours of sleep at a time. This is much better than being up four days straight!

Dad has been on the same medications since January, and yet, since March we are seeing great changes in him. In March, he was still pacing several hours per day. He might sleep a few hours at night, and sometimes a few hours during the day, but he was still awake much more than he was asleep. At this point, he could no longer feed himself, but he could sometimes pick up his cup and drink from it. His food was cut into bite size pieces, but choking wasn't a problem unless he was really, really tired and having trouble holding his head up.

I was back to visit dad again at the end of June. He was sleeping at night for several hours. He needed help getting out of a chair. He was beginning to choke a little on fluids (ie water, milk, juice). He was unsteady on his feet, and was no longer pacing. He did not hold his own cup to drink.

And now, at the beginning of September...

He is sleeping...a lot! This is a big sign that the disease is progressing. They have to wake him for his meals, and sometimes he will not wake up enough to eat, so they feed him later. He does not get out of bed on his own. He does not walk without help. He cannot sit down into a chair without help. He cannot lay down in bed without his caregivers bending his body to sit, turning his body to lie down, and then pressing his legs down to the bed, so he can rest. His fluids have been thickened to a nectar-like thickness, but they are talking about thickening them more to a honey-like thickness. His food is cut into small pieces, but we know that pureed food is the next step, and will likely happen soon. He does not attempt to get out of a chair, or his bed on his own. He simply cannot do it.

In the past, the decline was devastating for our family. But now...it brings relief. The fact that he is able to rest is such a relief. The fact that he isn't pacing constantly...and falling...is such a relief. The fact that his medications seem to be a good balance for him...is a relief. He is still in a terrible state before his medication becomes effective in the morning, but it is a relief that the medication actually works.

As we see where he is now, compared to March, we see the steady, yet quick, decline. A lot can change in a few months. Although the disease has full control of his body and brain, we are so grateful for the rest his body is now able to attain.

Dan's Alzheimer's Progression Timeline

I cannot remember every detail, but I want to give you a timeline for what I have witnessed with Dan.  Of course, there are many details missing, but it will lead you to understand what has happened in the past few years.  Each person's timeline is different, so do not expect this to be the exact same if you are a caretaker of a loved one with Alzheimer's.  We have seen a slow and steady progression at times, and a steep hill decline at other times.  Illness, typically, leads to a quick decline, so beware.

2005 --Dan fell and hit his head.  Changes began after the fall with a decline in short term memory.  He would misplace items, and could not remember where he put them.  I don't, necessarily, blame the fall, but I often wonder if it kick-started the disease.

2006-2008--Confusion with simple tasks became more prominent.  He couldn't remember how to flip a lever to back up his motorcycle.  His short term memory became worse.  He could no longer make a sandwich on his own because he didn't know how to do it.  He began having odd behaviors.  He could only follow a task if you gave him one thing to do at a time.  Multi-tasking was impossible.  He had his first doctor's appointment, but he was in denial, and would not admit that he was struggling.

2009--He was no longer in denial.  He knew there was a problem, and agreed to see his doctor.  He had trouble putting his thoughts into words.  He would say, "I know what I want to say, but I can't get the words out."  He began seeing a neurologist, and a neuro-psychologist who began more testing, including an MRI and CAT scan, revealing atrophy of the brain.  He also had open heart surgery.  His anxiety levels were greatly hightened.  Many behaviors were odd, including shoveling snow through the middle of the yard, and taping the front door to the house shut.

2010--Diagnosed with Alzheimer's in January.  He began medications, which greatly helped with his anxiety.  To "make memories," he and I went on a cruise to Alaska.  Being away from familiar surroundings was difficult for him.  He needed assistance in the airport due to confusion, and I had to divulge his diagnosis to security, so I could help him.  He could no longer read menus, nor books, which was sad because he loved to read.  He realized he should no longer drive, and sold his motorcycle.  Thankfully, he made this decision on his own.

2011-2012--Steady decline.  He and I traveled a little, but I did all of the driving.  He could no longer order food for himself off a menu.  He became "clingy" to me, afraid that he would get lost.  Too much noise, and crowds were very difficult for him to handle.  Daily tasks were still managed, but becoming a little more difficult.  Being out after dark made Dan anxious.  Being in crowds made Dan anxious.  Being away from me made Dan anxious.  Everything was becoming much more difficult.  I helped Dan shower because he could no longer figure out what was shampoo, or body soap, or what he should do with the things once he was in the shower.  He could wash himself, but I had to stand at the shower door to tell him each step.

2013--The year began with more changes.  Dan could not remember where his clothes were in his dresser.  I began by getting his clothes out for him, so he didn't have to search for them.  Then, he could no longer dress himself.  I knew when he began putting his pants on backwards, or underwear over pants that he was declining even further.  Do you remember that little comment I made above about a "steep hill decline?"  This was the year of steep hill decline.   It began in the Summer.  More specifically, it began in July. It was almost an overnight change.  He had a change in personality, becoming more angry.  He also became paranoid, and had delusions.  His medications were no longer working for the anxiety and agitation.  He would get very angry for no apparent reason.  It was like I was having a bad nightmare.  This was not my sweet husband.

He was hospitalized at the end of July.  While in the hospital, he was experiencing paranoia, delusions, and hallucinations.  He was doing so poorly, that they had to have a nurse with him one-on-one, twenty four hours a day.  My hope was that they could get his medications balanced, so he could come back home. While in the hospital, his doctor, nurses, psychiatrist and social worker recommended that he go from the hospital to an assisted living facility.  I knew it might be something I would need to look into in the future, but I hadn't even begun at this point.  I went against their advice, and chose to bring him home.  Our kids were very concerned for my safety, and I was concerned, too, but I wanted to take care of him.  I kept thinking, "if they can just get his medications balanced then it will be okay."  It was finally revealed that he had a urinary tract infection.  Sadly, UTI's are common in patients with Alzheimer's, and can wreak havoc, causing a rapid, downward spiral, which is what we think caused this first rapid decline.

I wasn't getting much sleep.  He would get out of bed two or three times at night, not knowing where he was. I would comfort him and get him to come back to bed.  The mornings, from around eight until noon, were good, but it was a long, hard battle the rest of the day.  I lived in fear every afternoon.

Two weeks went by.  I was exhausted and needed a break.  Twenty-four hour care was becoming difficult. Some of his friends no longer wanted to help four hours a month because they said, "This is too much for anyone!  I don't know how you are doing it."  I was doing it because I love my husband, but even for me, it was starting to be too much.

In late August, I knew I could no longer take care of him.  His paranoia and delusions were worse.  He accused the kids of trying to steal our house, and his Jeep.  He thought all of his money was stolen by me, or the kids.  He accused me of cheating on him.  With this awful disease, there is no reasoning, or convincing someone when their brain is telling them something else.  We had been told by a Geriatric Psychiatrist, almost two years before, that these accusations would occur.  No one can truly prepare you for the sting that comes from those accusations!  After he threatened me a few times, I knew I could no longer live my life in fear. He needed more help than I could give him. I needed more help than anyone was willing, or able to give.

On August 28, 2013 I took Dan to a memory care facility.  It is a day I will never forget.  My life was forever changed.  I was now in our home, by myself, for the first time in my life.  We had been married for 47 years.

His side of the bed was cold and empty.

His chair was empty at the table. 

His seat next to me at church was bare.

He was no longer by my side.

When we got married we truly became one, but now half of me is gone.  I go see him as much as three times a day.  Many times, I have wanted to bring him home, but I know I can't.  It wouldn't be best for him.  I couldn't provide all of the care he needs...not alone.  One person cannot give 24 hour care.  He has a wonderful team that cares for him.

2014--Weight loss...a lot of weight loss.  He went down to 135 pounds at one point. (His healthy weight was around 180.)  Thankfully, he has been able to gain some back, and maintains his weight around 145. Sometimes, he doesn't sleep as much as four days at a time.  Can you imagine how that would make you feel?!  He is now in a small, skilled nursing, memory care, behavioral unit.  He was moved from assisted living because they could no longer give him the amount of care he needed.  He is thin and frail.  He is declining steadily, and sometimes at that stressful, steep, downhill decline. He can no longer feed himself.  He can no longer communicate.  He paces.  He rarely stops, so his legs swell.  He still hallucinates, and it is sometimes very scary for him.  He still experiences paranoia, delusions, anxiety, agitation, and aggression.  He no longer knows me, or our children, or grandchildren.  The light is gone from his eyes.  My daughter, Dana, said it best when she said,

"Dad no longer has Alzheimer's.  Alzheimer's has dad."

2015--Here we are at the beginning of another year.  Dan has been weaned off of another medication, and we are back to finding medications that will help.  Last week was a horrible, terrible, no good, very bad week for Dan.  He fought, and punched, and fell, and became out of control.  His caregivers are concerned about him, and they are working with his doctor to help him as much as they can.  We are grateful to them. Yesterday was a better day.  We have hope that his new medications are helping.  We can always hope.



We miss him.  Our family aches for what he is going through.  It truly hurts. We want him to have peace.  I'm afraid that his peace will only come when he enters into the presence of God.

For our family, there are two words that resonate... God's Grace.  God's grace is seeing us through.  It will see you through, too.

Ginger ~ loving wife to Dan

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

Thoughts on the Diagnosis--Ginger's Story

As I look back about my feelings on the diagnosis...those were the good days compared to now.  This is so hard for me, as the diagnosis is nothing compared to the days now, which are getting tougher.

When he was diagnosed, it did not come as a shock.  I knew things were not good.  The diagnosis came in January of 2010.  I had suspected Alzheimer's since early 2006. Deep down I knew I was losing him little by little.  

I was not mad, but sad. 

My time alone in the evenings, when he was already in bed, was when I sorted my thoughts.  When I would go to bed and snuggle up to him, I would cry and pray for God's help.  I have never blamed God.  I have never questioned, "What am I to learn from this experience?",  or "Why me?", or "Why us?" 

We have had such a good marriage.  We became one early in our marriage, so I was missing part of me. I no longer felt complete.  I guess the best way to describe how I felt was...sad.

I started preparing for the future to take care of him by myself.  We sought to make memories while we still could.  

After the diagnosis, Dan and I came up with our own motto:

"We are on a journey.  We don't know how long the road is, but we do know God is with us."

Our lives have changed.  The motto has not.  God IS with us.

Diagnosed..."He has Alzheimer's"

It took quite a while for Dan to admit that he had a problem.  I saw that he couldn't complete simple tasks, among many other things.  The kids noticed that he was having a hard time getting his thoughts together and expressing himself.  We heard him say many times, "I know what I want to say, but I can't get it out."  It was difficult talking on the phone with him.  It was hard to know if we should help him finish his sentence, or let him collect his thoughts.  We learned, over time, that it was best to try to help him, so he didn't have to get frustrated.

When Dan decided it was time for him to see a doctor and figure out what was going on, we started with our Primary Care Physician.  The nurse began with a test of various questions.  Here is an example of some of the questions:
When is your birthday?
What day is it?
What is the month?
What is the year?
What season are we in right now?
I'm going to draw a circle, and I want you to put the numbers on it as a clock, one through twelve.

He failed the test.

After failing the test, our doctor sent Dan to a Neurologist.  Dan was given the same test.  He failed again. Next, Dan was sent for an MRI and CAT scan to see what was going on in his brain.  These tests showed that his brain was atrophying.

It was shrinking. 

 It was dying.

Our next doctor was a Neuro-Psychologist.  This was a grueling test for Dan.  It lasted 3 hours, and was draining and exhausting.  When the test was done, the doctor looked at me and said, "I am very concerned about your husband."  This was July of 2009.

Dan's low heart rate was better, but he still wasn't feeling well.  We were still concerned about his heart. One day, with a flushed face, Dan said he couldn't look up without getting dizzy.  I made a phone call, and was told to take him to the emergency room.  At the admitting desk, they began asking for his name and birth date, but he couldn't remember, so I helped get him registered.  His heart rate was dangerously high, and they thought he was having a stroke.  After more tests, they discovered that it was not a stroke, but a rather large hole in his heart, called an ASD.  The concern was that a blood clot could pass through this hole, and would go to his brain, killing him.  A cardiologist referred us to a heart surgeon, and open heart surgery was scheduled for August 3, 2009.

Dan was convinced that he would feel much better after surgery.  He believed that the surgery would allow more oxygen to flow through his body, and improve his thinking.  The doctors, on the other hand, had concerns that he would be much worse after surgery because of the toll on his body.  He was very confused after surgery, but didn't seem much worse after he recovered.

We had kept Dan's health problems, and our fear of an Alzheimer's diagnosis very private.  Dan didn't want anyone to know.  When the surgeon came out to update us on Dan's condition he made the comment, "I just hope this doesn't make his Alzheimer's worse."  Well, with 27 of our family and friends in the ICU waiting room...let's just say...our secret was out of the bag!  There were immediate questions and concerns.  The diagnosis was not official at this point, so it was hard to explain to everyone what we thought the future would hold.  Prayers were offered, and we were grateful for their prayers and support.

In 1999, Dan retired from the phone company, but continued working part time for as long as he was able. October 31, 2009 was my final day of work.  I retired!  My new job as "caretaker" began full time, as Dan needed more help, and needed me home to take care of him.  He had increasingly become more anxious when I was not at home, so being able to be home was a relief for him.

By Christmas of 2009, I was witnessing more strange behaviors from Dan.  He had become very angry with me when I told him to do more than one thing at a time.  I just didn't realize his frustration at the time.  I do now!  He taped our front door shut, so the cold air wouldn't get in, but this made the door useless when guests arrived.  Our daughter, Kerry, and her children were in town from Florida, and had prayed for snow for weeks, and boy, did God deliver?!  It snowed and snowed!  This caused great anxiety for Dan.  He shoveled snow for hours, and panicked when he didn't feel that he could keep up.  He shoveled off a deck that is never used, and even shoveled a path through the middle of the back yard.  No one could convince him to come in and rest.

And then...it was January of 2010.  It was a new year.  We are coming up on the anniversary for a very important, and heart-wrenching day.  Our resolutions for the new year were different from ever before.

We met with our Primary Care Physician who had the reports from our Neuro-Psychologist.  He sat down with me and Dan's sister, Beulah, in his office, and with deep concern in his voice he said, "I am sorry, but the news is not good.  It is Alzheimer's.  Dan has Early Onset Alzheimer's Disease."

Ginger ~ Loving wife to Dan

Something isn't right...Something is definitely wrong

After retiring, Dan began working for his brother's, Jimmy and Larry, who own a carpet store.  On a snowy, Winter day in 2005, Dan was outside at the loading dock, and unloading the box truck, when he fell out and hit his head on the ground.  Hitting his head rendered him unconscious.  He woke up, after an unknown period of time, covered in snow.  A second fall occurred weeks later, and he believed he was knocked unconscious again.

After these falls, things were never the same.  Something wasn't right.  Something was definitely wrong.  I was concerned.  Our relationship started to change with him needing so much assistance.

First, Dan began having heart problems.  He was exhausted.  He couldn't sit down without falling asleep.  At a doctor's visit we found out that his pulse rate was in the 30's.  The doctor thought it was a machine malfunction, but with the same results at the next appointment we knew it was truly a problem.  Then, I noticed Dan misplacing combs, nail clippers, keys, and at one point he couldn't find the remote to the television, which we later found in the pantry.  Next, Dan began experiencing a lot of anxiety.  He paced, and became very anxious around crowds, or with too much noise.  We altered our lifestyle, unable to stay for church functions in our church gym, or staying at parties with friends.  He became very dependent on me.

In June of 2006, we celebrated our 40th Wedding Anniversary.  With the changes in Dan, I was afraid we would never be able to celebrate our 50th.  All of our children and grandchildren, and many friends and family came to celebrate with us.  We made a lot of memories!

1st year of marriage to 40 years of marriage

Two weeks before our 40th Wedding Anniversary party, we took a motorcycle trip to Yellowstone National Park with our friends, Ray and Yvonne.  During the trip, Dan forgot how to back up the motorcycle, which was easily done by pulling a lever on the Goldwing.  Ray helped Dan, but he laughed about it and thought Dan was teasing.  Dan was always a big tease!  After this incident, it started setting in that we had a real problem when seeing Dan not able to perform a simple task.

We came home 2 days early from our trip.  Dan had anxiety about going through the mountain pass in Qurah, CO, and didn't feel he could make it safely.  I assured him it was fine to leave the next morning and go home.  He was relieved and brought us home safely.

I scheduled a doctor's visit for Dan and explained the concerns I was having.  The doctor asked Dan how he felt about this and Dan replied, "Everything is okay," denying any difficulties he was experiencing.

Six months later, Dan began to panic on the days when I went to work.  One day, he couldn't find his glasses, and was looking in a panic and asked me not to leave until we found them.  I found them on the kitchen counter, and he was relieved.

Another day, as I was running late for work, I asked Dan to fix me a bologna sandwich.  He said, "I don't know how."  I replied, "Get two slices of bread, two pieces of bologna, put some mayo on the bread, and put it in a sandwich bag."  He told me that I had given him too much information and he couldn't process what to do.  As I was preparing to leave, we had a discussion about his thinking process, and I let him know that the kids had noticed that something was not right, and we were all concerned.  I left the house with tears streaming down my face.  He called me on my way to work and said, "I'm sorry.  You are right.  I have known for a while that I have a problem.  Make me an appointment with the doctor and I will go."

Ginger ~ loving wife to Dan

The beginning of our marriage...

We had only been married four months when Dan had to report to his Navy base in Norfolk, VA.  It was October of 1966 when he boarded the USS Harold J. Ellison DD-864, a destroyer, also known as a "tin can" due to it's small size.  I wasn't able to join him in Virginia yet, but knew I would miss him terribly.

At that time, my sister, Sandy, lived in New Jersey and invited me to come stay with her and her family.  Dan could come visit me every other weekend at her home.  He hitchhiked on the turnpike to come see me.  Back in those days everyone would pick up a sailor, or anyone from the military and take them as far as they needed to go.  When Dan would get to an exit he would find a pay phone and let us know where to pick him up.

On Sundays, we would take him back to the turnpike, drop him off, and he would hitchhike back to his base.  He always made a collect call, asking for himself, so I would know it was him, and that he had made it safely, but without paying for the call.  I guess that was one way of working the system back then!  We were poor, but happy...and so in love.

We celebrated our first Christmas together in New Jersey on our six month anniversary!  I can't remember if we bought each other anything, but it didn't matter because we were together.  After Christmas, I returned to Kansas, and Dan returned to his base where he would head out to sea for maneuvers for 7 weeks.

When I returned to Kansas I worked at Mobil Oil Credit Card Center in downtown Kansas City, Missouri as a file clerk.  Several months went by, Dan finally got leave to come home, and took me back with him to Norfolk.  All of our belongings fit in the trunk, and back seat of our 1966 Mercury Comet!  We found a furnished  apartment, got settled in, and I got a job at Virginia Electric Power Company setting files to turn on, and off power for navy personnel, as these families moved a lot.

After six months, I returned to Kansas and went back to work at Mobil Oil Credit Card Center.  It was time for Dan to begin his journey in the ocean with the Navy.  Our time together was too short, and I longed for the day that he would return.

On November 2, 1967, his ship departed Norfolk and headed to San Juan, Puerto Rico.  From there, they were off to the Indian Ocean.  On November 12th, they crossed the equator, where those who had never crossed the equator before were initiated as Shell Backs.  This was a somewhat brutal tradition.  

After passing the equator, Dan's ship traveled to Brazil, Angola, Mozambique, Madagascar, Ethiopia, Bahrain Island, Pakistan, French Somalia, Saudi Arabia, India, Mauritius, and Kenya.  Aside from the danger of the war, this was a photographers dream journey, and Dan made a lot of memories that he was able to share through his pictures.  I spent many evenings watching his slides from his Navy days!

Dan finally arrived back in Norfolk on May 14, 1968.  He had to wait for two weeks to get leave to come home.  It was torture knowing he was in the states, waiting, and we could not be together.  Finally, we were together, and he was able to take me back to Norfolk with him while he finished his remaining days of service to our country.

~Ginger~loving wife to Dan

In October of 1968, we packed our car, and headed home to our new jobs and to begin our lives...as civilians.

Our love story...

Over 48 years ago...
There was a very young girl.  Sixteen, to be exact.  And a young man.  Only twenty.  This is their love story.

When I was in high school I worked at a store called Sav-On.  It was the first in our area and comparable, at that time, to what Walmart is today.   As you entered, there was a Topsy's Popcorn by the front door. *For those of you unfamiliar to Topsy's...you have missed out.  It's really good popcorn!*  Back in those days we made it fresh...no ordering online!  I made caramel, cinnamon, and regular.  *I can almost taste it!* Cheese-flavored came years later.  

Dan's mom never learned to drive, so he always brought her to get her groceries.  Thankfully, her store of choice was Sav-on!  Dan saw me working there and wanted to meet me.  A boy that he went to school with worked in the camera department, so he asked him to introduce us.  We visited for a short time. Soon after that first meeting, I had my tonsils removed and couldn't return to work for two weeks.  Dan thought he had lost me forever!  My first week back at work he appeared, but this time he asked for my phone number.  It seemed that every night I worked, thereafter, he came for a visit instead of just for the reason of bringing his mom to get groceries. He came to see ME!  

Dan started calling me on my days off, and finally asked me out on a date.  We went to the Empire Movie Theater in downtown Kansas City, Missouri and saw "The Great Race".  Upon taking me home, he asked if I would go out again.  After our first date, we began having weekly dates, plus phone calls.  On our 4th date, a month later, I finally let him kiss me goodnight.  He let me know it was going to be the last date if he didn't get a kiss!  I know he would have come back!  Haha!  We dated steady for several months.

It was getting time for him to go "active duty" into the Navy for the Vietnam War.  He hated leaving me, so he proposed, but not in the traditional way.  He said to me, "I want you to go with me, and the only way that can happen is for us to get married."  He asked my mom for my hand in marriage, we set the date, and got married on June 25, 1966.   We went to Noel, Missouri for our honeymoon for just the weekend.  We didn't have much money for an extravagant honeymoon.  In fact, we were quite poor. 

Dan served in the Navy from 1966 to 1968 on the destroyer ship, the USS Harold J. Ellison DD-864.  I supported him from various places in the states, and waited eagerly for him to come home, and for our lives to begin...together.

We just celebrated 48 years of marriage! Of course, with this disease we weren't able to celebrate in the traditional way this year, but we still spent the day together.  Each day is difficult, but still so precious.  I said I would love Dan in sickness, and in health, until death do us part...and I meant it.

After marriage, and the military there were houses, and children, and boats, and motorcycles, and LIFE!


~Ginger~loving wife to Dan

Next...The early days of marriage...

It's a boy!

Our dad, Danny Leroy Gulley, was born in Kansas City, Kansas, January 31, 1945.  He was one of ELEVEN children to Earnest Armenian Gulley, and Lola Melissa Belle Bratcher Gulley.  His SuperMom delivered all eleven of her children at home.  Dad was born in the dining room!  He was the second to last child.

Like so many others, dad came from a poor family.  His dad was seldom home.  His mom babysat and washed other's laundry to make money to support her family.  

Dad was a cute little guy!  As a little boy, he had white hair and the mailman called him "Cotton Top." We have been told by dad's older siblings that when dad was a little boy he would walk around telling everybody, "I've got to find a job, so I can buy my little brother some shoes."  Even then, he wanted to work hard to provide for his family.  That never changed!

When dad was only 12 years old, they strapped boards to the pedals of the car, and grandma put him behind the wheel for a cross-country trip.  It was dad, grandma, and his brother, Larry. Grandma never learned to drive, and we have no idea how dad figured it out so young.

Dad graduated from Wyandotte High School in 1963.  After graduation dad sought a job and was hired at Southwestern Bell in January of 1964.  This was a proud accomplishment!  Dad was "Dan the phone man" for his entire career until he retired.  

At the age of 19 dad received the blessing of his first child, Sherry.  This was a treacherous time in our world with the Vietnam War.  Many men were being drafted into the military.  Dad chose to enlist in the Navy, and proudly served our country for four years.  Dad has always loved photography, so traveling the world was a perfect opportunity for him to use his skills.  We used to sit in the living room and watch slideshows of dad's adventures during the navy.

Before leaving for the Navy there was a little introduction.  Boy meets girl...the odds were against them...they were so young...there was already a child...he was leaving for months to serve our country.

And so, the love story begins...

We have lots of catching up to do!

We are at the latter stages.  By "we," I mean...my dad.  But, in reality, the "we" is my entire family.  My dad is fully in stage six, exhibiting most of the symptoms, but with a few symptoms we are seeing a step into stage seven.

You may be at the beginning of this journey, or maybe you just want to understand what Alzheimer's is, or what it does, or what you should expect for a loved one.  "Stages" may mean absolutely nothing to you.  To understand what symptoms are experienced in each stage you should go here: http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp

Through this journey we have come to realize that information is sporadic, and spread all over.  We have felt so lost at times.  We knew more than we desired to know about the disease because our grandfather, my mom's step-father, died from complications of Alzheimer's.  Still, we had never been completely immersed in the daily devastation of this disease.

This blog will be a family effort.  Each person in my family will share knowledge, memories, fears, tears, websites that have been helpful to us...basically, we will share what we have personally learned through the process.  It's A LOT!  We don't want others to feel as lost as we have.  Hopefully, by sharing what we have learned so far will help another family through the trials of this tragic disease.

We have lots of catching up to do!  We are six years past diagnosis.  A lot has happened in those six years.  Follow the journey with us.  Experience life with us.  Grieve with us.  Find joy in the special moments with us.  Ask questions.  We are open.  We want to help.  We will share the good, the bad, and the ugly.

Let's go back to the beginning...

Kerry (4th child of Dan, baby of the family)