Family problems and Alzheimer's

This is a topic that was completely unexpected when our dad was diagnosed.  Regrettably, it is all too common.


Several months ago, one of my dad's doctors asked me how my family was getting along.  Is everyone in agreement?  Is anyone quarreling?  Is everyone on the same page?  I told him that my siblings, and I are all on the same page, and in agreement, and fully supportive of our mom, and our dad.  He got a look of surprise on his face and said, "Well, that's great because it is really unusual for a family to get along through all of this.  Eighty percent (80%) of the patients I treat have horrible family issues because of how they perceive someone is being cared for by the caregiver.  Your family is blessed not to be one of them!"

But, we are.  We are one of them.  While it is true that my immediate family has maintained a wonderful, and very supportive relationship through this (we are closer than we have ever been!), it is not true of many in my dad's extended family.  In fact, there are some who no longer consider us family.  Sad, but true. We still love them, and consider them family, and have to choose over, and over, and over, and over again to forgive them when we hear the things they are saying about our family.

And we wonder...why?  How could our family do this to us?  How could our friends believe the things they are being told?  Why aren't they supporting us at a time when we need them the most?  We need them. They are part of our dad.  We don't want our children to lose that connection to their grandfather.

I wish someone would stand up for us.  I wish people would stop and think about the things they are being told, and then come ask us questions, so we can tell them the truth.  There are always two sides to every story.

My siblings have tried to talk to those who seem to be in disagreement with us. They have tried to address their concerns.  They have tried to explain our actions.  They have tried to explain this awful disease.  They have tried...  It was to no avail.  We will never see eye-to-eye on this.

So, what do we do now?  We put out one fire at a time.  We get angry.  We choose to forgive.  We hear more lies.  We get angry.  We choose to love...because love is a choice, not a feeling.  We choose to pray for them.  We pray for us...that we will not become bitter.  We continue to live in this nightmare, and yet, we find joy because we know we are not alone...God has not forsaken us, nor our dad.  We encourage each other.  We put our heads together, and look for a way to make dad better (always looking for that precious balance of medications!), or at least comfortable.  We try to support and encourage our mom because this is even more difficult on her than it is on us.

If you are one of the eighty percent who are dealing with family problems...I am so, so sorry.  There is enough stress with this disease, without having to deal with family problems on top of it.  I'm afraid I don't have any really good advice for you, except...pray.  Please pour your heart out to God, so you do not become bitter.  Choose to love instead of hate.  Choose to bite your tongue instead of spewing words that will not change the way they view, or treat you.  Find someone who supports you, who you trust, that can listen to you when you need to vent.

And sometimes, you have to choose to walk away.  I have family members who no longer want me to be in their family.  It hurts.  It makes me really sad.  I not only grieve the loss of my dad, but the loss of aunts, and uncles, and cousins who I love dearly.  I have had to make the choice to walk away, and be grateful for the family that I still have.  And, even though it continues to hurt, I walk in peace because God knows my heart.

The Roller Coaster called "Alzheimer's"

Come with me on a roller coaster!  Many roller coasters I remember riding with my dad as a child seemed similar.  They were something like this:

You sit in a seat, and make sure you are securely buckled.  You begin to slowly move straight ahead, and then, you begin going up a steep hill.  It's almost like you are tugging along until you get to the very top. When you finally reach the peak, there is a small bump, and then you pick up speed while going around a corner.  Then, you head straight down!  AAAAAAGGGHHH!!! You are terrified!  You hit the bottom of the hill, and find a sense of relief.  The relief is only momentary because suddenly you are speeding, speeding, SPEEDING around corners and over small hills...but you're still okay....you are just hanging on for dear life!  You feel the car pick up speed again as it brings you up, and then takes you upside down in a corkscrew.  You begin to panic.  You feel out of sorts.  You go straight again, and begin to relax a little, but then you feel the speed increasing, once again, and you are taken upside down. You feel yourself being twisted and turned, and you hope that this moment will pass quickly...because it isn't very comfortable, and it is actually quite stressful and terrifying. Finally, you begin straightening out, but you are surprised by a few quick turns, and hills, and bumps, and then you feel everything begin to slow down and you come back to where you started... there is calm, and peace.  You are relieved that it is over.

It sounds stressful, doesn't it?  This is the best description I can give when Alzheimer's becomes part of your life.  It.is.stressful.  It is a roller coaster with hills and bumps, and death-defying drops, and fear, and doubt, and unknowns...oh, the many unknowns.  This is one of those posts that won't be very encouraging.  I don't like those very much, but if we are truly going to be honest about this disease, then we would be doing others a disservice if we did not include this information.

Alzheimer's is very much like a roller coaster.  You are going through life, and then it seems that you are in something of an uphill battle.  You see your loved one forget things, and misplace things, and display odd behaviors.  It can get frustrating when you can't understand why an adult can't complete a simple task. When I sat with my dad and a doctor, and the doctor asked my dad to draw the face of a clock, I could not believe my dad's response.  He drew a few scribbles and that was it.  I knew if he couldn't do such a simple task, there were far more difficult things he could not do either.  It was heartbreaking to watch him struggle.

Perhaps that first bump, when you reach the top of the hill, is the confirmed diagnosis of Alzheimer's.  You sail along around a curve, and things don't seem too bad, and then the massive hill is before you, and you find yourself free-falling, and it feels very much out of control.  That out-of-control, downward fall is sickness. For my dad, it was a Urinary Tract Infection in July of 2013.  Illness, any kind of illness, can bring a downward turn so fast that you can hardly catch your breath, and you feel lost and confused.  You might catch a small reprieve, but then this nasty disease hits another part of the brain and you end up in a corkscrew that sends you spinning, and grasping to find out what is wrong, and how to help this person that you see changing before your very eyes.  You continue to gather your wits about you, but you continue to be caught off-guard by twists and turns and bumps, and hills, and when you think you are managing those things, you are off spiraling upside down again.  This time, you wonder if you will ever be able to relax again, but the turns become fewer, your loved one becomes less-abled, you continue to hit a few more bumps, and then things begin to straighten out and you ride on to the end of the line.  You say goodbye.  You are glad it is over, for now there is peace. You would do it all over again if it meant that you were able to spend time with that person who has just had the ride of his life.  Still, you wish you could have chosen another ride.  One with less twists, and turns, and ups, and downs, and pain.  It is done.  You cannot go back.  You don't wish to do it again.  You must move on.

We are still experiencing many twists and turns with my dad.  I know they will become fewer at some point. Every time my mom calls (I talk to her almost daily), I feel myself tense up because I don't know what news she will have of my dad for that day.  There are many ups and downs.  It is very difficult.  Just when we think his doctor's have found a good balance of his medications, something else happens and we are back to the drawing board.  Each patient is different.  The ride may not be so rough for some.  Regardless, it's always a ride that no one would choose.  Some day this ride will be over.  We will continue to look back at the twists and turns.  Somehow...we will move on.  In the end, God's grace is sufficient...this disease just causes us to hold on to Him for dear life.

God is still good...always.

Thoughts on the Diagnosis--Cameron's story

Today's post is by another grandchild.  Cameron is Dana's second child.  He is thirteen, and in seventh grade.  He recently chose to write an informative paper for school about Alzheimer's Disease. Cameron did an excellent job with his research for the paper, but sadly, he has the life experience, as well.  This was his assignment, left uncorrected.  We wanted to post it exactly as he wrote it.

My grandpa has Alzheimer's. Does someone in your family have it? It's a really scary and dangerous disease. Three important things about Alzheimer's are what it is, how it works, and what it feels like to have family with it. After this you will be fully informed.

            As said above, you might wonder what Alzheimer's Disease is. It's a "progressive degenerative disease that attacks the brain's nerve cells." This results in memory loss and loss in language skills. This disease can change your behavior and in general, the way you act. Your brain hardly works, as if it's numb.

            How Alzheimer's works isn't simple at all, there are seven stages to it. First the person looks and acts fine. Second the person notices his/her slow memory problems, third all the other people notice this person's changes. A doctor will interview and diagnose the person with Alzheimer's. The victim will need help with day to day activities. Several things happen in stage 6, memory worsens, personality changes, person needs help with small things like eating. Stage seven the person loses almost all of their abilities, they can hardly carry on a conversation. These are the seven biggest steps.

            After all these big steps and facts here's how this feels for my family. This disease is sad, my grandpa told my mom she wasn't his daughter. The Alzheimer's Disease hurts the victim's family just as much as it does them. Really all you can do with Alzheimer's is accept it, deal with it, and remember the good times you had with the person who has it.

            So here's three solid paragraphs on Alzheimer's Disease. How it works, what it is, and how it feels to have a family member with it. It's hard for the family members, not just the victim. But, you have to accept it, sure to get your tears out. But Alzheimer's has no cure.

Thoughts on the Diagnosis---Kent's Story

This is a special "guest post."  (Thank you, Kent, for sharing!)  Kent, and his wife, Mary, have been good friends to our family for several years.  Although, most of dad's friends, and even family, rarely go see him anymore, Kent has faithfully gone to visit dad.  This disease affects dad's friends, too.

Please understand...we understand, and are sympathetic to those who find it too difficult to visit our dad.  It is very difficult to be with someone who cannot carry on a conversation.  It is also very difficult to see the decline of someone you love who was once a very active, and vibrant man.  It's just hard.  We get it. There are no hard feelings for the lack of visitors.  It really is okay.

From Kent:

I first met Dan a little over 25 years ago when I went to work for Black & Veatch, where he was the on-site technician for AT&T.   I was fortunate to get to work with Dan for over 17 years, and still call him one of my best friends.  He was the kind of man that I really enjoyed being around.  He liked his job, loved his family, was a sincere Christian, and lived a very active life.  I always appreciated that Dan and Ginger had been married a long time and still enjoyed being together.  My family spent many happy summer holidays boat-riding and skiing on Clinton Lake with the Gulley family. 

After Dan’s retirement, Dan and Ginger would call me occasionally to meet them for lunch.  Starting after his fall in 2005, I noticed how he became much more dependent on Ginger.  They had always been a good team, but as time went by he relied more and more on her for assistance – even with simple things.  I knew something was not right.

I remember the day when Ginger called to tell me that Dan had been diagnosed with Alzheimer’s.   I just felt numb.  I told my co-workers about the diagnosis and then just sat at my desk and cried and prayed for their family.  I could not understand how someone who had never smoked, or drank, and was always in great physical condition, could have this disease. 

Since Dan's move into the first care facility, I try to go visit him every few weeks.  The first time that I went, I could tell that he was embarrassed for me to see him there.  He told me that I did not need to come again.  I told him that if it was me that was at Sunrise, I knew that he would come to visit me, and he agreed.  

Over time, the visits became more difficult, as Dan, who used to do the KC Star crossword puzzle every day, would struggle with completing sentences because he could not remember words.  Later, the visits pretty much became me following Dan as he paced the halls.  He has not known me now for many months and he has slowed down quite a bit.  I just talk to him about things I know that he loved – grandkids, family, hunting.  I don’t know if he understands, but I hope that he does.

I appreciate how Ginger still takes care of Dan.  Now, when I go to a wedding and they get to, “…in sickness and in health…til death do you part”, I think of Dan and Ginger.

Thoughts on the Diagnosis--Katey's Story

The following was written by Katey.  She is Dana's sixteen year old daughter.  She is sharing her perspective as a young grandchild who has had to learn a lot about the effects of Alzheimer's at an early age.

My grandpa was diagnosed with Alzheimer's when I was 11. For two years, my mom didn't tell me. Before my thirteenth birthday, grandpa started to show signs that I recognized. He would lose his train of thought in seconds. I never really felt any differently towards my grandpa. When my mom told me about the situation, all I wanted was to make sure I got the best of what time I had left with him. I understood, even at 13, that eventually my grandpa would not remember me, or my family. 

My eighth grade year, he began to regress A LOT. At the beginning of my school year, he was pretty much fully functional. In May though, he was starting to have trouble holding conversations. Over the summer, he started to go into dark phases. He seemed like a different person. It was scary to me and my family because he was capable of hurting us at times. The scary phases started to become more frequent and by September, when I was a freshman, it was so common that sometimes we worried about his safety and my grandma's safety. We decided to listen to what the doctors said and take him to an Alzheimer's treatment home. After that, I didn't go to see him as often because it was really hard.

 In June of 2014, after he had been placed somewhere new, I went to visit. He didn't make eye contact anymore, and he didn't respond to what we said. It was really obvious that he didn't know who I was. That was the most difficult moment of my grandpa being sick. He wasn't really my grandpa anymore..it was really hard for me. I haven't been to see him since then. I know it wouldn't benefit him or me. Regardless of his ability to remember me, I definitely still love my grandpa.

Thoughts on the Diagnosis--Sherry's Story

A few days ago I visited Dad and found him in good spirits.  He looked down sideways at me with a big grin and said, "Brat!"  "Oh, so I'm a brat today!" I quipped back with a small laugh.  He looked back at me with another big grin.  This was a good day today - I'll take it!

When Dad was first diagnosed, I had a lot of mixed feelings, too many to put into words, or to explain to anyone.  Even now, it would cause way too much room for misunderstanding and misinterpretation to share.  I think my part of sharing my emotions must be the side of assuring others that sometimes it's too hard to share those emotions, and that's okay.

It's not healthy to keep things bottled up inside; it's actually good to find someone you can feel comfortable talking to.  I've had a few friends who have gone through this experience, so it has been nice to ask them questions or ask what they advise or have experienced.  

My dad came from a background where people don't have the maturity to say "I'm sorry" or "I love you".  Dad used to emphasize how important it was to "show" love or apologies - that's hard to do 750 miles apart!  But I think the lesson in that is the importance of finding ways to show our love through different avenues.

My connection of this with sharing our emotions with others, is the fact that sometimes your emotions are difficult to share, so if you have difficulty putting your feelings into words, please look for a positive way to express yourself.  People often think when visiting someone they have to verbally speak, or they haven't communicated.  That's not so.  My Dad, the once-great communicator of all time, now prefers not much noise or commotion at all, and even laughter, his once-great fuel, is no longer welcomed, but questioned by him. 

Now, visits consist of sitting next to him as I hold his hand, rub his arm, or rub his back or shoulder.  Other times, I may help feed my own father at a meal should he need assistance. Most visits consist of walking or pacing up and down the halls, because his disease won't let him realize when he needs rest.  He doesn't need, or want conversation now, but I feel the need to at least spend some time with him when I can.  We can't all show our love in the same way, but if you find a way that allows you time with your loved one, then find your "niche," and don't worry what others think.

As their minds slowly disappear into some unknown abyss, you learn to take what you can get for a good day.  One day, I went by to visit him, he looked at me, then looked at one of the workers, grinned, and said, "Oh look, my daughter came to visit me!  How Nice!"  I thought, "How wonderful!  Dad must be having a great day!   He even recognized me!"  Then slowly he turned back in his full grin and said, "This is my daughter, Kerry!"  Ah, close enough!  I decided to take what I was given!  It's still a good day!

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