Monday, September 2, 2013

From a daughter's perspective: My brush...or rather 'Punch you in the gut'...with Alzheimer's.

This post is long, but it is MY story about my experience with Alzheimer's...what's it like?  It's not a disease that many people know much least I didn't until it happened to me.  If this can help even one person or shed some light as to how hard this disease is, then opening up and letting this vulnerable time in my life be made known, is worth it to me.  It is hard.  It does suck.  And the end result is hard and uncomfortable to talk about.  But it is reality.  It is life.  And I am blessed enough to know that with everything we go through in this life, the end result is eternal life.  I am not going to lie and tell you that we never had our doubts and wondered if it was too much for us to handle, but knowing that heaven is the end result, it eases the pain for us here on earth to know that one day we will see our loved ones again.  We were also very blessed to have the help of the Alzheimer's Association and many many family and friends who stood by our side, every step of the way!  Here is my story.
 A little over 6 years ago my mom asked my sisters and I to join her for lunch.  Little did we know that day, that this lunch would be the beginning of a 5 year journey of the toughest years of our life.  Lunch started out good, pretty normal, discussing our days and sharing some laughs...but then the only thing I really remember from that point on, is my mom getting silent and telling us that there was something she needed to discuss with us.  She and dad had been to the doctor and had been informed that my dad had the early onset of Alzheimer's. He had been put on medications that were meant to help slow the progress of this disease. My first thought was, "Alzheimers?  Isn't that something that elderly people get?". My first question..."Can he die from this?"  I mean, this is something older people get...not someone in their mid-fifties!  It felt like someone had punched me in the gut...I found it hard to catch a breath of air. We talked a little more and the next thing I knew, I had made it back to my office and was googling this "early onset of Alzheimer's disease"...what exactly does it mean?  How does it affect someone?  How long can they live? What does it do to someone affected by it?   How was it possible that someone so young could get this disease?  Everything I read just seemed to jumble up in my was overwhelming and I had to stop reading because my heart was starting to ache. Then came the flood of all the 100,000 emotions.  I was in shock.  I was scared.  I was too young to deal with this.  I wasn't ready to lose my dad.  What would I do if he were ever to forget me?  How long did I have with him?  I'm gonna tell you...I went there.  And it was an ugly little place.  I went to the worst possible scenario and couldn't control my emotions that night.  I had a softball game and fought back those tears...though, not very well...and tried to go on like everything was normal.  And in the following days and months, everything WAS normal...though it seemed.
It wasn't but a few months later that we came back from a vacation to California that I had that air knocked out of me...again.  I got a call from my dad had been let go from his job of 29 years.  WHAT???  I was angry. My heart hurt for fact, I finally was able to understand what a real heart ache felt like.  I remember to this day, the sadness and embarrassment that filled his eyes.  I still, to this day, get that lump in the back of my throat that makes it hard to swallow just thinking about how sad and hurt he was.  I wanted to scream and any and everyone.  How unfair!  How could they do this to a man that was so loyal to this company?  Someone that cared more for others than anyone I had ever known!   It took me a long time, but I finally came to peace with the fact that this disease that I had been trying to wrap my head around for months, had taken the first big toll on the strongest man I knew.  Yes, his memory had started to fail him at his job.
The next few months seemed like he was perfectly fine...I remember calling him up one day and asking him if he would meet me at Sam's (one of his favorite places) to help me pick out a new laptop.  I needed his so many, many, many times before!  He was happy to help and met me there...he drove himself, by himself.  He was okay!  Everything was okay!  
Over the next couple of years, things seem to be would drive himself places, he would keep their house clean, do dishes by day, run into town if he needed something, watch Mizzou sports and Cardinals games with me on the weekends...things were fine...well except for the occasional forgetting to put the milk away...forgetting where mom and I had told him where we were going...but I kept thinking, "Okay, I can handle this early onset if it's like this for the next 10 years."    We took a couple of family trips, one to Hilton Head and another to Orlando, with the entire family...we wanted to make some memories with dad and all of his family!  We all had a blast...and memories we did make!
Then came the winter of 2009.  Here we were 2 years into this disease, and we noticed he was having a harder and harder time remembering simple things.  He was still driving although we found more and more that he would forget to make the right turn when driving or would run red lights.  We decided that it was time to have another family meeting. It was time to discuss with dad that dreaded conversation...we thought it was time he stop driving...for his safety and the safety of others.  He did NOT take it well...not at all.  He was angry with us all.  In his mind, he didn't have anything wrong with him.  He was fine.  He knew he had Early Onset but he wasn't affected at all.  So, explaining to a 57 year old independent man, that we thought it was best he didn't drive anymore was probably one of the toughest things we had to do.  We convinced him to let the professionals handle this and suggested he take a driving test.  We were blessed to have the Alzheimer's Association there to help with the cost of this test and to guide us where to go.  Well, he took the test.  In the words of the woman giving the test, "I think it's best that he not drive."  His reaction time was horrible, he had a hard time following simple directions with her.  It was not good.  He talked with his doctor, and he also recommended that he not drive.  So, there we go.  He was crushed.  And convinced that everyone was against him.  It was hard.  "Hard" doesn't even do it justice.  I don't really have the words.  From that day in December, he never drove another mile again. 
We were now at a point that he was becoming angrier and angrier.  Mom would make a quick trip into town by herself and would get home to find that he was FURIOUS with her because she "took off without telling him where she was going".  Or she "would be gone for hours".  He was forgetting more and more and was becoming a very angry individual.  He went back in for a regular appointment with his neurologist and we soon found out that, not only did he have the Early Onset of Alzheimer's, but he also had Frontal Lobe Dementia.  Again, it was back to google to figure out what this meant.  Basically, this dementia, that had affected his frontal lobe of the brain, was causing him severe anger issues, paranoia, and changes to his personality.  His moods were terrible.  He was just mean to my mom which drove me CRAZY.  I felt like I had to protect my mom...she didn't deserve this, but there was no reasoning with him.  I saw my mom starting to spend her evenings crying.  I was becoming to HATE this disease.  This was not my dad.  My dad was not this mean spirited person. 
December of 2010.  Ugh.  Crappy December.  This was my breaking point...I had ENOUGH of this stupid disease.  I wanted my dad back.  I knew it wasn't my dad anymore...everyone had told me that for the last year.  This person he had become was someone with Alzheimer's. The dad I knew and loved had died (not the most comforting thing I was told, but I knew that I had to come to terms with it somehow).  But I still believed my dad was in there somewhere.  I was over his anger issue, and on December 7th, I had been pushed to my limit.  He was angry that my mom was "leaving him" again even though we were going to Advent by Candlelight at my church...a woman only event.  He couldn't understand that she was only going to be gone for a little while and would be coming back his mind, it was an eternity when she wasn't there.  So, he was upset with her which then caused her to cry...again.  Then comes the moment in time that I wish I could take back.  I lost control of my emotions.  I was mad.  I started yelling at him...he walked away, I followed.  I said some things that were harsh...he did the same.  I was crying, but that didn't stop me.  I couldn't help myself.  I was so angry that this was happening to me.  To my mom.  To my dad.  I was done...I was leaving their house...until I heard the man that I loved so very much, sobbing in the other room.  Ouch.  My heart began to hurt again.  Really, really hurt.  What had I done?  I made my dad cry?  And at that moment, I realized that I was never angry at him, I was angry at this disease, and I never wanted to make him hurt again.  My oldest sister was over at mom and dad's house by that point, and the 4 of us sat down on the couch and cried with him and for him.  He sobbed telling us he knew he was losing it.  He couldn't control simple things anymore.  He didn't know what was happening to him.  He started pulling his hair out.  And there he was...completely vulnerable, devastated, and feeling so alone.  He questioned why he was still alive.  And at that point, I knew I had to stop being upset with him, and had to do whatever I could to help him.  I was angry with myself for doing this to him.  I was angry at myself and couldn't believe I had lost complete control. What in the world had I done?
We took 2011 on with a new understanding for him.  The changes were happening faster than we had anticipated.  We were told that he could be in this stage for years.  That wore us out just thinking about it, but we took it day by day.  The year continued and he became more and more dependent on mom.  He couldn't make decisions on his own, we had to make every decision.  He had stopped demanding that mom get him a scooter to drive around instead of a car.  I believe he felt scared to leave anywhere.  That is, until a cold, and rainy day in November 2011.  A day we feared from the moment we started studying Alzheimer's disease.  It was about 11:00 in the morning on a weekday.  Mom was at work, along with the rest of us girls.  Mom got the dreaded call from the Battlefield Police.  She needed to come home.  The police had picked dad up about a 1/4 of a mile away from their home.  All he had on was a sweatshirt and jeans, and was picked up going house to house, knocking on doors.  Apparently he was looking for McDonalds.  Mom called me, beside herself, she couldn't stop crying, but was on her way home.  I hopped in the car and headed that way.  By the time I got home, mom was talking to the police officer and my dad was sitting on the couch in dry clothes.  Again, a whole new hurt I hadn't had to this point. He looked so sad, defeated, confused.  I sat with him and just put my arms around him.  I asked him what had happened, and all he could tell me was that he was hungry and  he was just trying to find McDonalds.  I tried to keep my emotions together, but I had a tough time.  The police officer had told mom as soon as she picked him up, she realized what was going on, as she had a grandmother who had also had Alzheimer's.  Luckily dad had his emergency bracelet on, and they were able to track down his address and mom's number.  Mom and I tried to hold back our tears and decided to take him to Steak n Shake...he loved that day.  We let him order anything off the menu that he wanted.  He seemed to forget what had happened and all was good in his world....although, ours just seemed to get more complicated. 
At this point he had been staying by himself at home during the days.  He had his buddy, Duke, mom and dad's cocker spaniel, that they had adopted when dad first was diagnosed, and he helped to keep dad company.  We thought he was okay...he would spend days sitting on the couch, and picking up hair out of the carpet, or cutting coupons, or actually anything in the newspapers that had a box around it, but it kept him busy.  But with this new revelation, we knew he needed someone at home with him during the day.  My mom couldn't stay home full time as they needed her income, so we had to find another option.  Thanks to Marci at the Alzheimer's Association, she helped us talk to dad and convince him to let us hire someone that could come and stay with him during the day while mom was at work!  She knew exactly what to say, and I believe that with her help and the guidance of everyone at the Alzheimer's Association, we were then able to hire our first caretaker.  My high school friend, Tasha, who worked for Omega Home Care, recommended, Phoenix Home Care. 
Joel was our first worker...we really liked him, as did dad.  He was a younger man, still in school, that would come in and just "keep dad company" for 1/2 days, until mom could come home.  Dad and he would play old movies, just sit there and talk, and dad managed to be okay with the fact that he was there.  It was now January 2012, and dad's 60th birthday.  We decided to have a party for him...although a little concerned how he would handle it.  He had become uncomfortable around a lot of people, but we knew that this might be the last time some people could see him!  So, a party we had!  129 of dad's closest friends and family came by the house...we had set up the bedroom as a place for him to go if he needed a break, but it was amazing!  HE WAS BACK!  Even if it was only for 3 hours, my dad was back.  He was smiling, laughing with friends, talking and enjoying this day that was all about him.  Family came from all over Missouri, friends came by that we hadn't seen in awhile, and for those few hours, we were able to get a chance to have our dad back the way he was before Alzheimer's.  I can't thank God enough for that day.  He knew that was what we all needed, and to see & hear my dad laugh again is a memory that I don't think I will ever forget.  We felt blessed.
Well, a couple of months went by, and his paranoia set in. He started becoming suspicious of Joel.  He started accusing mom of having an affair with our twenty-something helper.  WHAT?  That is absurd.  This is what we all thought.  Again, we had to remind ourselves that this was not our dad who was making these accusations and saying these very hurtful things.  This was a man who was becoming consumed with this disease.  Mom was becoming very worn out...dealing with the hateful and hurtful things he would say to her daily.  He would follow her everywhere.  He would get very agitated very easily.  He had forgotten where the bathroom was.  She was constantly having to ask him if he had to use the restroom and then would have to guide him to the bathroom in the house.  At times, she would look for him and realized he had gone back to childhood days of living on the farm, and had gone outside to go to the bathroom.  It seemed absurd to us, but he was regressing.  And we began to realize that my mom's life was spiraling out of control.  She was constantly "on", never receiving a break.  He would get up at night to go to the bathroom, which woke her up.  She was getting no sleep.  She wouldn't sleep at night in fear that he would get up, and then she would get up and go to work, and come home to an upset husband and would have to take care of him until he would wear out and would be ready for bed.  It was a never ending cycle.
It came to a point to find dad a day care for the times when mom was at work...we had to let Joel go, and this was the best option.  We visited a few different adult day cares, and that is where we found the Arbors.  He would go to adultcare Monday - Friday mornings.  He seemed to be okay with this place, although it didn't come without a few tears on his and mom's part every morning she left.  He was scared she wouldn't come back, and would be in all smiles when she picked him up...much like a child. 
We soon realized that mom needed a respite vacation.  Mom and I decided to go to would be a 2 week respite vacation.  It took lots and LOTS of preparation.  I had come up with a schedule complete with Phoenix workers to spend the night with dad who would then take him to the Arbors, and then my sisters would spend some time with him in the evenings, or other friends of dad's that we had lined up to visit him in the evenings; we had emergency numbers posted for everyone involved, the schedule was even color coded.  We were finally ready to leave.  It was heartbreaking to leave him.  The 2 weeks seemed to go okay...a few mornings of calls from family that he was completely heartbroken and looking for mom.  She would talk to him on the phone, which he could barely talk because he was sobbing, but she would assure him that we would be home soon.  He had no concept of time, so he would calm down and we would be able to continue on.  During our 2 week vacation, he started to have more problems and "accidents".  What we came home to was a man who needed even more constant supervision.  He was having more accidents in the house, was forgetting how to eat, and just really couldn't be left alone.  It was 2 weeks of being home when my mom realized this was more than she could physically handle.  It was time.  It was time again for a family meeting, this time without dad.  We were all in agreement that it was time to move him into an assisted living center.  The Arbors had a room available, and we figured since he was used to the people and that place, that this would be the best move.  My lease was up at the same time, so it was decided...I was moving in with mom during this transition period.  We moved dad into the Arbors on Friday, June 29, 2012, and me into my childhood home on Saturday, June 30th.  I can't even describe that day of moving him into his new room...but it was hard.   He was confused and seemed sad.  By this point, he wasn't speaking a whole lot, but he just seemed lost and sad.  Leaving him that day again left me with that big lump in the back of my throat that made it hard to swallow.  He wanted to come with us, but he couldn't.  We had to walk out the door and keep walking...knowing that he was so scared.  I would cry at night wondering if he was scared when he went to bed.  Did he think we didn't love him anymore?  Ouch. And at that point, we realized that he may never come home with us again, and that hurt, deep down into the pit of my stomach.  For the next 12 days, his anger had set in even more.  He was becoming very agitated with the workers.  They had all grown to love him since he had started coming to day care there, 3 months prior, so they knew this anger wasn't directed at them.  But it had become too much for them to handle, and they sent him to a psychiatric ward for re-evaluation for his medications.  They assured us he would only be there for 7-10 days.  So, off to Bolivar he went.  We could only visit him between certain hours, and could only visit him in pairs, and no one under the age of 16...which meant no grandkids but Ashley.  The Arbors had been told that they could no longer take him back because of the amount of care he needed...he needed a nursing home.  FOUR weeks went by, apparently no nursing homes in Springfield could take him due to how sedated he had to be and because of his anger issues.  No one wanted him.  I couldn't understand that.  No one wanted my dad.  My family made multiple calls to over 75 nursing homes...even trying places as far as Northern Missouri.  What were we going to do?  I hated that psych unit.  It was cold, it was not friendly, he couldn't have any pictures of family or any of his belongings with him.  All I could think about was him being so lonely.  Again, was he scared?  Was anyone talking to him?  He just looked so lost when we got in to see him.  He couldn't feed himself at this point, so we would go at dinner and help feed him when we could get up there....although being an hour away made it difficult.  While there, he had lost the ability to walk...he was confined to a wheel chair.  The last time I saw him at that unit was so unbearable.  They had him laying in a hospital bed and he couldn't speak.  He could barely acknowledge me.  It scared me and I couldn't control my emotions...I had to let someone else come back and take my place.  I couldn't stop crying.  I couldn't pull myself together.  He looked like he was dying.  And I wasn't ready for this. 
We got the call in the middle of August that they found a nursing home that was going to take him!!!  HALLELUJAH!  Our prayers were answered!  They moved him to Buffalo Prairie Center on August 10th.  Yes, it was still an hour away, but this would work while we continued to look for nursing homes closer.  And this way, the kids could go and see him!  He actually seemed to perk up a little over the next couple of weeks.  Praise the Lord!  We would go and visit with him, sing songs in his room to him, songs that he loved, we would help feed him, and just hold his hand or sit with him telling him about the latest news!  This was manageable!  Labor Day weekend 2012 brought a weekend of changes.  His talking had gotten less and less over the last month, but that weekend brought barely any speaking or movement on his part.  In fact, he had stopped eating.  When learning about this disease, we were told that one of the last signs would be the patient forgetting how to swallow.  And here we were, sitting in his room, trying to get him to eat.  He would store it all in his mouth...he would swish his food (which had been ground up for the last few weeks) in his mouth, but he would never swallow.  It was frustrating and we tried to coax him to swallow, massaging his throat, explaining how to swallow, but with no luck.  There were tears from us, but just a blank look on his part.  It took my mom cleaning the food out of his mouth and just coming to the realization that this was no use.  That day I heard the last words from his we were leaving, I said my goodbyes and gave him a kiss, and he said the words that will ring in my head forever and ever..."I love you, Trina."  Yes, he said it.  My heart felt a bittersweet feeling, but to hear him say that was what I needed.  Tuesday rolled around and we got the call that he wasn't doing sisters, mom and I left work and headed that way.  When we got there, he was hooked up to oxygen.  Wow.  He looked like my grandpa in that very moment.  It was tough.  Well, that's an understatement.  Mom spent the night, but we assured him we'd be back the next morning.  Wednesday, September 12th...a day that changed my life forever.  Stephanie, Gail and I got to Buffalo around 9, complete with coffee and breakfast and to our surprise, they had moved him into a private room.  Tasha arrived soon after with her co-workers from Omega Home Care, to start the process of hospice.    That day brought the 5 of us together as a family, for what we knew later, would be the last time.  We spent that day sharing stories of growing up, stories that brought laughter, and some that brought tears.  He was pretty unresponsive but would open his eyes for minutes at a time, and at times that we felt like he was looking right through us, but then at times, I felt like he was looking right into my eyes, letting me know in his way that he knew I was there.  Our Pastor came and held a devotion with us, and prayed with us.  I wished that life at that moment would slow down.  We each took our turn to talk to him.  To tell him anything we wanted to tell him.  And to tell him that we would be okay when he was ready to let go...although, I'm not sure how convincing I was, because my heart was breaking in half.  I made calls to my boss that afternoon, I made calls to my best friends, we made calls to the Arbors that decided that they would take dad back so he could be close to us for the last days of his life.  It was decided that they would come and get him the next day.  We knew time was coming to a close soon, but thought we had a week or so left.  Things were looking up as well as they could for our situation.
Well, God had another plan.  We left that day around 4 and headed home to grab some dinner that work friends of mine were bringing out, and then mom would head back to Buffalo to spend the night with dad, with us 3 girls joining her the next day!  As mom was getting ready to leave to go back to be with Dad, we got that call.  The call we had feared from the moment we heard 'Early Onset of Alzheimer's'.  Dad had passed away after we left that afternoon around 5:50 pm on Wednesday, September 12th, 2012.  Wow.  My heart hurt.  I couldn't catch my breath.  He was gone.  This man in my life that was the strongest man I knew, was now in heaven with his mom, dad, brother, brother-in-law, and many other members of our family.  The rest of that evening is a blur.  My eyes hurt.  I couldn't talk.  I couldn't stop crying.  A hurt that was worse than any other hurt I had ever felt up to that point.  Yes, we had lost him a long time before that, but his body was gone.  At that point, I just wanted to hold his hand.  To give him a hug.  To tell him ONE more time that I loved him. 
Life is precious.  Our memory is precious.  Our family is precious.  None of these are things we should take for granted.  I learned a lot about myself and others in my life during this process that began in 2007.  I feel like I am a stronger person.  I feel like I have a better relationship with my God.  I feel like maybe one of the reasons I am here on this earth is to spread awareness about Alzheimer's and to share my story. 
Alzheimer's is the 6th leading cause of death.  It is affecting more and more people at a younger age.  So this is my story.  It is a story of a man that was well respected by so many.  A man that was loyal.  A man that was kind.  A man that wanted to help others.  A man that was strong in his beliefs...even in his last 5 years of life.  A man that loved family.  A man that wanted the best for his family.  A man that loved unconditionally. A man who served our country.  A man whose life we feel ended too soon and in a way that he would never have chose...but he dealt with it and did so in the best way he knew how.  His life story is one that will always be remembered as a good life.  And he was my dad.