Thursday, September 3, 2015

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 brings relief. The fact that he is able to rest is such a relief. The fact that he isn't pacing constantly...and such a relief. The fact that his medications seem to be a good balance for 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.

Wednesday, July 8, 2015

The spectrum of Alzheimer's

People who haven't had their lives consumed with Alzheimer's don't have a good understanding of the disease. Even those who have lived through the disease with a loved one may only see one end of the spectrum. And yes, there definitely is a spectrum.

For instance...

My mom has a friend whose husband has Alzheimer's. Like my dad, he would be considered in the last stages. For him, Alzheimer's has taken his mind and his memories, but he sits in a chair and watches television, or sits at the table and eats his meals. He follows his wife to his bedroom when it is time to sleep. He is docile. He is calm. He is kind. My mom even stayed with him recently, so his wife could go to a family cookout. Oh, how my mom wishes my dad were like this man.

This is one end of the spectrum.


There is another end of the spectrum. This is where you will find my dad.

My dad is in a men's, locked down, behavioral, dementia unit in a skilled nursing facility. I have heard men curse, and mumble, and I know some of them have thrown punches, including my dad. My mom watched as my dad punched one of his caregivers in the ribs one day. My dad is still strong. It must have been painful, but the caregiver smiled and told my mom he was okay. I watch these men as they get frustrated while they eat, frustrated when they spill drinks, frustrated that they are not understood because their words do not come out cohesively. I watch them stroll up and down the hall. Meandering.

They are not my dad. They straddle somewhere along this spectrum, but they are not necessarily at the other end as the previously mentioned gentleman. Many of them seem mild compared to my dad, although I am sure they have had their fair share of behavioral incidents to be in the behavioral unit.

My dad is at the far end of the other side of the spectrum.

The other end of a spectrum where some form of sleeplessness, pacing, insanity, delusions, hallucinations, and terror reside. This is what tortures me. I don't know what is torturing my dad, which inflicts the terror in his eyes, causing him to pant, tremble, sweat, move,

grab at the air,

grab at our arms,

grab at our clothes,

grab at what we cannot see,

sending a tear down his cheek. My dad does not cry. I've never seen him cry. Is he in pain? Are they tears from fear? Are they tears of misunderstanding? Why is he so panicked?

God, please...please help him. Show us how to help him. Show us how to help him calm down. Show us how to show him reality. Help us bring him back. I feel myself start to panic because I cannot help him.

And then, I pry his fingers off the arms of my brother as we rush out of the room with tears streaming down our faces. We sit in the car and cry. Tears flow every time we leave our dad.

I call my mom. As usual, she hurries in to check on my dad. His medicine has kicked in. He is calm. She feeds him lunch. His caregivers help get him to his bed. She tucks him in, and kisses him, and tells him she will be back soon. He sleeps. Finally, he sleeps. His doctor has found two medications that help him. One helps him sleep. The other is an anti-psychotic. It helps him calm down. It alleviates the hell he is living in at that moment. In those moments of sheer panic and terror, I believe it is close to the feelings that people experience in hell.

I find myself praying, "God, please take him!" I cannot bear to see him live in such torment and fear. I did not expect this. I did not know how far this spectrum could go.

#prayforacure #endalzheimers

Thursday, May 14, 2015

Beyond reason

You may wonder what it is like to be around someone who cannot be reasoned with who has been diagnosed with Alzheimer’s. It is really bizarre to see someone you know very well change moods so quickly and not be able to reason, or use common sense. Sometimes what is very normal to them makes no sense to us.

There was a weekend at my parent’s home that I will never forget. My Mom had called me in the middle of the week telling me how difficult Dad had been. She said she was not able to reason with him like she had previously. She was getting worried and scared at times. I told my wife when I hung up the phone that my Mom sounded very different on this phone call. It was hard to believe it could be that bad. I figured she was just tired and needed a break. I let my wife know that I was going to spend the weekend with them to give Mom a break, hoping that it would let her recharge and continue to care for Dad.

I arrived Friday night and everything went well. We had dinner, visited, and Dad went to bed and got a good night of sleep. Saturday morning we ate breakfast, and then Mom went shopping. I needed to rotate the tires on my vehicle and that is something that Dad loved to help me do. I knew it would keep him busy and focused on something positive. Initially, he did better than I had expected. He showed me the tools and we jacked up the vehicle. We were rotating two wheels at a time. Dad would trade with me when I got a wheel off. Once I got the wheel on, I would let him put the lug nuts on and tighten them. What I realized is that he could not remember what direction to tighten the lug nuts. I had to delicately help him finish and he was glad for the help. It wasn't just one wheel, but rather all of them. This took us all morning.

We got in his Jeep and went out for lunch. The whole time I was driving he talked about how much fun he was having and how beautiful the weather was for a Jeep ride. It was perfect weather! We were having so much fun; it was like we were dreaming.  Alzheimer’s seemed to be gone for the moment.   He said he could cruise all day.

We ate lunch and continued to have great conversation. He looked at me and said, “Your Mom puts up with a lot from me. I don’t know what I would do without her.” I told him she was happy to do it. Then, he said the one thing he would like to do is to drive the Jeep again. I asked him, “Are you feeling good today?” He said he was and it seemed like he was doing well. I told him we could go to the high school parking lot and I would let him drive. He lit up and was ready to go. I also let him know that I was not going to tell Mom.

We drove about 15 minutes to get to the school. It was starting to get really warm. I stopped in the middle of the parking lot and asked him if he was ready. He said, “Ready for what?” I said, “Do you still want to drive?” He said yes, so I got out and walked around to the passenger side, but he was still sitting there. He asked what we were doing. I asked again if he wanted to drive. He got out and by the time he got to the back of the Jeep he forgot again. I could tell this wasn't going to work. I let him know that I needed to go to the bathroom and he agreed that we should go home.

He was incredibly quiet the entire ride home. We parked by the barn and as soon as I shut off the engine he reached for the keys and said, “This is MY Jeep and no one should forget it. I can drive when I want.” I smiled and said, “You are right. You can drive anytime.” We got out and he came around and got in the driver’s seat and just sat there with the key in his hand. He wanted to drive, but could not figure out what to do. He got out and acted incredibly mad. I went in the house and went to the bathroom. He came inside and was pacing around like he was angry. I suggested we get something to drink, but he refused. He insisted on going back outside. It was getting up to 100 degrees that day. I didn't know what else to do.  couldn't reason with him. 

He made a comment about never getting to go out in the Jeep. I asked if he wanted to go for a ride to cool off and he agreed. We took off again and he remained very quiet. We got just two miles down the road and he quickly said, “Pull over there.” It was too late for me to turn, so I went to the next turn. We got turned around and back to the stop sign when he told me in his very angry voice, “When I tell you to turn around you better do it!” I calmly said, “Okay, what would you like to do?” He said, “Take me home NOW.”

We started back home and he became very fidgety and proceeded to tell me that if I didn't get him home quick he was going to go crazy. I was very worried that if he got his seat belt undone  he might try to jump out. Luckily, we only needed to go 30 mph the entire way back home. On the way back he told me to drop him off at the driveway. Then, when we got there he pointed and told me to park at the barn. I shut off the engine and he said, “This is MY Jeep and don’t forget it.” He was absolutely furious. We got out and just wandered around. 

couldn't tell what he was going to say, or do. He noticed all of the mole holes in the yard and decided to get his machete and proceeded to stab the ground to get the moles. The whole time he was acting very angry. I kept my distance and tried to redirect him.   Again, I could not reason with him.

At this point I didn't know what to do, so I texted Mom and asked how soon she could come back, hoping that she could calm him down. She came back within thirty minutes. During that time I remembered that he liked to show off his knife collection. He could do this all day, every day! He agreed, and by the time Mom got there we were at the table looking at the knives and he had been telling me stories about each one. We finished that and put everything away. Then, all of a sudden he looked at Mom and said something about not letting him drive his Jeep. She calmly let him know that he had not had his license for six months (he chose to give up driving). He blew up and yelled, “Thanks for telling me that now!” He was red in the face, his eyes were huge, and he was yelling at a very close distance to Mom. I stayed close in the background to see what he would do with me there. He didn't seem to notice me. He continued yelling at her that she should just sell his Jeep if she won’t let him enjoy it. She let him know that it was his Jeep and she was not selling it. He glared at her and said, “That’s just great!” and stormed out of the house.  We were struggling to try, but neither of us could reason with him.  How can you convince someone of something when they cannot remember the truth, and their brain is telling them something different?  For someone with Alzheimer's the answer can't.

It was only about 1:30 in the afternoon when he stormed out and he remained outside in the extreme heat for the rest of the day, primarily cutting every tree branch he could reach. Then he would take the little branches and hold them next to a tree and cut them into little pieces with the machete. This made no sense and I was afraid he was going to cut his hand. When he wasn't cutting branches he was in the barn holding his head, then every so often he would throw something like he was mad. I went out to offer him some water and asked if his head hurt. He said no. He also got the weed eater working and started going around inside the barn using it. The barn has concrete floors, multiple gas cans, and other stuff, so we feared for his safety. 
Again, I could not reason with him.  He did not understand what he was doing.

Mom called a couple of doctors to see what we could do to calm him down. Nothing was working. They basically said he was at a point where his medications were ineffective and he would need to be admitted to the hospital to try to get the medications balanced.  If the medications could not be balanced, she was told we had reached the point of placing him in a memory care facility. We had a hard time believing this until three other experienced health care professionals told us the same thing.

My Mom was told by a nurse at the neurologist’s office to call the police to report that he was out of control and they would handle it and get him transported to a hospital. My Mom quickly reminded them that he has Alzheimer’s and she could not take a chance on the police using force if our dad was unreasonable.

We were finally able to get an ambulance to arrive late in the day to get him to a hospital to work on finding a balance of medicines that would hopefully help him. My brother-in-law showed up, in advance, to try to help reason with Dad. When he showed up Dad seemed happy to see him and calmed down a little.

When the medical personnel showed up, Dad was a completely different person. He joked with them and asked what he could do to help. He could change for short periods of time for different people. I let him know that we were concerned about his health and safety and we really wanted him to get checked out. He completely agreed to do whatever was needed. It was shocking to me that he was a completely different person again. I had been worked up for so long that day that when the medics pulled me aside to ask questions I fell completely apart. They realized that Dad was unpredictable and not himself.

Dad’s medications were changed over a two week period and he was able to come back home. We were advised that he would not get better and we really needed to consider getting him into a facility sooner rather than later for everyone’s safety, and so Dad could adjust easier. We found out soon after that they were correct. Dad was too irrational and unpredictable. We were not at all prepared for that day or how fast he was going downhill at the time. 

For those who get this diagnosis it is a great idea to think ahead for the worst possible scenarios so when the time comes you can be better prepared on how to handle the situation and take the best action for that person, if necessary. This disease is unpredictable, so it is important to know all of your available options before you need to make a decision. 


Tuesday, May 5, 2015

Decision to place, moving in, and beyond

The decision to place my dad in care was beyond difficult for me. I knew that we could no longer care for him on our own, but I felt that no one could do a better job than us. It felt like a no-win situation.  We had been at the hospital for the second time and I had an experience with my dad that I had never had before. He had been in quite a rage, telling me that my mom had another man. I reassured him that this was not true, but it was the Alzheimer's Disease making him believe this.  He and I had a very trusting relationship. I kept assuring him that I would not take her side if this was true, and I would tell him the truth. He just kept stewing.

The doctors had asked my mom to stay in the waiting room. After more time had passed, we asked if he would talk with my mom and he agreed. She reassured him that she had loved him, and only him, for nearly 50 years.  He drifted off to sleep shortly after she entered the room.

He was only asleep for about 10 minutes when he opened his eyes and his whole demeanor changed.  He truly looked different in the eyes.  He seemed dazed and confused, asking where he was and what had happened because he did not feel well.  We told him that he had been very upset, outside too long in the heat while working in the yard, and would not come inside to rest and take his medication.  We shared that we were worried about his health and brought him to the hospital to try to work on his medications.  He asked my mom if she was going to stay with him at the hospital.  Suddenly, he was not mad at her at all, and there was no talk of an affair, or another man. He looked at my mom and tenderly said, "Will you stay here with me?" She kissed him on the forehead and said that she would. Then, he said something that broke my heart and sent chills through my bones. He said, "Okay, I'll be a good boy."  He drifted off to sleep and my mom and I sat and cried.

I knew the disease had such a grip on him.  This was all completely beyond his control. Everything felt out of control. There was no magic pill to make him better.  We were starting to lose him for chunks of time...chunks that I knew were only going to grow.

During this hospital stay, we decided that Sunrise of Lenexa was the best option for him, and for the safety of my mom.  It was very much a homelike setting, and it was beautiful.  I was still hopeful that eventually this rage part of the disease would end so we could get him back home with some home healthcare. Unfortunately, this never became an option.  I was thankful that my sister, Kerry, had already visited several facilities while she was in town a few weeks earlier. I was such an emotional wreck that I really could not bring myself to visit these facilities.  I was also holding onto hope that we could just bring him home, and I did not want my kids to know just yet that we were heading down this road.  They were used to seeing grandpa nearly every day, and this would be a difficult change for them, as well.  

I remember asking a friend from church if we could use his truck so we could get the room at Sunrise all set up before dad arrived.  We chose items that were special to Dad to decorate his room...mostly items from his Navy days, as well as family pictures.  I wanted the room to look as good as possible before he arrived.  I don't remember his arrival at Sunrise, but I do remember telling him that this was where the doctor recommended that he stay until we could get his medication regulated better.

For many, many weeks or maybe even months, I cried every time I left him.  I felt guilty for leaving him there and so sad because every time I visited I could see more of a decline in his health and cognitive function. We were happy with this location, and he stayed until he needed a much higher level of care.  We had built great relationships with the workers at Sunrise, but we knew that we had to move him.  We all cried on moving day...including several workers. We found another location that was similar, but we knew that ultimately we wanted him in a particular facility where they have a men's-only unit, and they are specially trained in working with men with behavioral challenges as a result of Alzheimer's Disease.  

Dad was in the interim facility for about three weeks when we received a call that there was an opening where we really wanted him to be placed.  We quickly moved him.  This place was no-frills, but we were confident that the care would be excellent, his needs would be met, and there were nurses and a doctor on site at all times. We were nervous about transporting him ourselves, but in the end it was successful.  I opened my van door and helped him out.  He grabbed my arm and I led him into his new home.  He was so helpless at this point.  It was another extremely difficult and sad day for me.  I was hoping and praying that we were doing the right thing for him.  We visit regularly.  My mom is there nearly every day and has been since his first placement.  I've been able to visit sometimes weekly, but sometimes bi-weekly. For a brief time when he was declining severely, I had some stretches that I only visited about once every three weeks. I felt that I could not emotionally handle more than that at the time.  I have had many people express their lament and sadness of not being able to handle seeing dad anymore, and I can easily assure them that I completely understand.  It is so hard to see him this way.

We have only seen my dad receiving the best of care and being treated with respect. I am incredibly thankful for the many workers that God has placed in our lives!


Tuesday, April 7, 2015

There ARE good facilities!

I remember going to various nursing homes when I was young.  I hated going to them!  They seemed dirty. They smelled like old urine.  People were moaning and grabbing at me.  As a child, it was a scary place to go.

When dad was placed in the hospital the first time, my mom was really upset, and lonely, so I drove to Kansas to be with her, and to see my dad.  The staff at the hospital told my mom that dad needed to go to an assisted living facility from the hospital.  My mom had only looked at a couple of facilities for "day" care, but nothing for long-term care because she had planned to always keep him home.

Mom and I spent the days looking at facilities online.  We looked at pictures, and reviews.  We made lists of what facilities needed to be visited.  To save my mom from some of the stress, I made visits to the facilities, so I could narrow down the list of choices.  I broke down in tears every time I walked through the door of another facility.  It was one of the most difficult tasks of my life.  I never thought I would see the day that I would seek a nursing home, or assisted living facility for one my parents...especially not in their 60's.  It was emotionally draining.

For some facilities, the list was narrowed as soon as I walked in the door.  If there was a smell...I was out the door!  For other facilities, I didn't care for the staff.  Some directors seemed more like sales people. Some caregivers seemed like they didn't care about the residents.  They went through the motions of taking care of them, but they didn't love them...they were just patients, not real people.  For some facilities, the wait list was up to 2 years long.  I wasn't sure if my dad would even be here in two years.  For some facilities, my dad would not be accepted because he was a "behavior case."  The long list dwindled rather quickly!

I was discouraged.  I still hadn't found a facility that I felt was "right," or "good enough" for my dad.  Mom decided to bring dad home from the hospital, against everyone's wishes, but we were concerned that he would not be able to stay home.  I needed to get my kids out of the house because noise agitated dad, and I was afraid of what he would do if he became angry.  I loaded the kids in the car and decided to go for a drive, and make a few more phone calls to facilities.  I drove right by a facility that was on my list, so I stopped for a surprise visit.  *for the record...I never scheduled an appointment!  I didn't want them to "expect me."*  I went into the facility and asked to speak to someone about the Memory Care Unit.  The director of the entire facility came, offered me something to drink, and then began asking about my dad and mom.  He was great!  He understood what we were going through, and had so much compassion for my family.

This facility was perfect for my dad!  It was an assisted living facility, and they placed a lot of emphasis on keeping dad as independent as possible.  They had a "safe" tool table, so men could tinker.  I knew my dad would love that!  They had a nursery, so women could take care of their pretend babies.  They had a vanity where women could put on scarves and hats.  There were skylights in the roof, so they could have sunlight. That was amazing!  One of the comments that stuck with me the most was when the director said, "We can give your mom the gift of being a wife again.  We will take good care of your dad, and your mom can come be his wife."  I liked that idea a lot!

Dad moved into this facility a little over a month later.  Mom was there up to three times a day.  She helped shower him, dress him, brush his teeth.  She didn't need to do any of these things, but she wanted to.  Dad was getting great care!  He got to go out to eat with the men sometimes, he helped vacuum, and move chairs and tables, and really enjoyed being the helper.

Then, the director of the facility left, and everything began to change.  The staff was being reduced. Residents were leaving.  Basically, dad was kicked out, but in a very deceiving way.  We later found out that other families were being told the same stories about their loved ones that we were told.  I am glad that he is no longer there.

Dad was moved to a very nice facility while we waited for an opening at the facility where he is now.  His new facility is a skilled nursing home.  There are several different wings.  Dad is in a locked-down wing that houses men with dementia who are considered behavioral cases.  He has a nurse in his wing at all times, caregivers are present 24 hours a day, and a doctor is present at his facility every day.  Dad's main nurse is a man, his doctor is a man, and his caregivers are men.  This is so much better for dad!

I was just in town to visit my family.  My mom brags on dad's nurses and caregivers all the time.  I hadn't seen them "in action" much, so I was looking forward to observing them with my dad.  Now, I can brag, too!

Dad's nurse, "D," seems serious, but is so nice to the men, and very good at his job.  He talks to the residents as "men," not just patients.

"J" is one of dad's main caregivers.  This guy is a gem!  My dad responds to him like no other.  He is so good to all of the men.  Somehow, he sees beyond the disease and sees the person.  I cannot tell you how much I appreciate that!  I think "J" really cares for my dad.  He has been there a long time, and I sure hope he sticks around!  He is gifted at his job.

"L" is a guy with a smile!  I know these guys have a really tough job, but they all walk around with a smile.  "L" seems to enjoy the residents.  He talks to them, and listens to them...even when they don't make sense.  I watched him as he talked to one of the residents, and played along with the delusion, so the resident would be comforted.  He also sat with a big smile on his face while another resident cussed at him like a sailor!

"U" is so kind and gentle with the residents.  I watched him as he fed the gentleman across the table from my dad.  I could tell he had done this many, many times, but there was nothing in his demeanor that would indicate that he was bothered by the job.  He was so good at what he was doing.  As another gentleman spilled his milk all over the table, floor, and on himself, "U" was calm and reassuring to the gentleman.  He got up immediately, with no complaint, cleaned up the gentleman, table, and floor, and assured the resident that everything was okay, and they would get him cleaned up as soon as he was done eating.

I went to visit my dad several days when I was in town.  The caregivers were the same every time.  My mom visits nearly every day, and at different times of the day, so it is evident that the care is consistent.  We have come to trust the staff, and that is a huge blessing.

 I only visited my dad very late on one day, so I didn't get much of a chance to observe his nightly caregivers, but my mom has bragged about dad's nighttime caregivers, as well.  They are quick to call if there are any problems, or if dad gets hurt.  Dad still doesn't sleep much at night, so they are busy with him all night long. They never complain.  They do not ask to over-medicate him to make him sleep.  They walk with him, talk to him,  and treat him with dignity and respect.  How do we know this?  Because mom is known to show up at any time in the day...including very late nights!

There ARE good facilities!  Do your research!  Check out!  They have lists of facilities in your area, with reviews!  Do independent reviews online, too!  Visit the facilities without scheduling an appointment.  Visit at different times of the day.  If another visitor is leaving the facility at the same time as you, ask them their thoughts of the facility for their loved one.  After placing your loved one, visit them frequently, unannounced, and at different times of the day, and night.  If something doesn't seem right, go with your gut!  Get on waiting lists!  You never know when your loved one will need to be placed in a facility, or moved from the facility they are in.  Be encouraged...I know this is one of the most difficult decisions for you, but there ARE good facilities, with wonderful caregivers.

And...a big Thank you to the caregivers!  Ya'll are amazing!!!  I think you have the toughest job in the world!

Wednesday, February 25, 2015

The Progression...In Pictures

When we first started the blog, we were concerned about sharing too many details.  There are some details that we will keep within our family at this time.  We want our dad to be able to maintain dignity.  We debated if we would share the "bad" pictures.  This is not the man we want others to know, or remember.  We decided we would share this one post with pictures, so others could see that this isn't only a brain atrophy, but it effects the entire body.

In his favorite element..with a grandchild on his shoulder
Before Diagnosis  -  December 2006

Making memories on an Alaskan Cruise

Making more memories at Niagra Falls, and then on to Gettysburg for the History nut!
September 2012

Cuddling with Bethany after his first rough hospital visit
A month before being admitted to an Assisted Living Facility
July 2013

One Month of living in an Assisted Living Facility
September 2013

Dan, Kerry, and baby Ligon
This was the first time he didn't recognize Kerry
October 2013

December 2013

Happy 69th Birthday!
January 2014

Not feeling well.  Lacking sleep.  Leaning to the side.
July 2014

He paces a lot, and likes to push a wheelchair, but his caregivers felt that a walker would make him more stable.  He usually feels the need to push something.

He began hunching over, and when he is tired he leans to one side, or even forward, or arches his back.  It must be very uncomfortable.

August 2014

Hunched posture is typical now.  His eyes are glazed over.

It's hard to tell what he actually sees.

December 2014

If we can get him to sit, and rub his chest or his face, 
he will sometimes go to sleep for a little while.
Christmas Party
December 2014

This isn't dad anymore...this is Alzheimer's...

Please take a moment and look back at the first picture.  That was dad.
That is who we want you to remember.
And then...take a moment to pray for our dad...for your loved ones...
for the families who are enduring this disease.

You may also leave a comment and we will pray for you!

Monday, February 23, 2015

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

Thursday, February 19, 2015

We were warned

A few months after dad was diagnosed I had the opportunity to sit down with dad, mom, and a Geriatric Psychiatrist who is very knowledgeable about all things pertaining to Alzheimer's.  He talked to dad a lot about the disease and the things he was experiencing.  He asked dad a lot of questions.  And then, he turned to the three of us and said, "There are some things you need to know that will happen in the future."  We were warned that these things would happen, and we feel that it is necessary that others be prepared, as well.

First, he said that those who are diagnosed with Alzheimer's tend to end up on one, or the other end of the "behavior spectrum."  This means that patients become very docile, loving, and kind, or angry, mean, and violent.  Right before dad was diagnosed he became very anxious, nervous, and even angry at times.  After diagnosis, he was placed on medication that helped his anxiety, and he became very loving to our mom, and our family.  Then, the disease began a rapid progression, and he, once again, became very anxious, angry, and even threatened violence to my mom before he was placed in an assisted living facility where he became violent numerous times.  Even at this point, when he has become more weak, he still has violent outbursts.  He recently got in an "altercation" with another resident, and then punched one of his caregivers a few days ago.

Second, the doctor told us that he would, at some point, become paranoid and delusional.  With the paranoia and delusions, we were told that he would accuse our mom of cheating on him.   He also said that he would accuse our family of stealing his money, and his belongings.  This was very difficult to hear, especially with dad hearing these things, too.  The doctor was right.  Dad did accuse mom of cheating on him, even though she had been faithful their entire marriage.  At the point that he accused her of infidelity, they had recently celebrated their 47th wedding anniversary.  He also accused all of us kids of stealing his home and money.  None, of which, was true. Please remember that this is a disease in the brain and convincing someone with Alzheimer's of the true reality is hopeless.

Third, and lastly, with compassion, he told us that there would come a time when he would no longer know us, and would lose all ability to use the toilet, talk, walk, eat, and then his body would shut down.  He also mentioned a risk of stroke because it is common in those with Alzheimer's.  At this point, he no longer knows us, he can no longer use the toilet, he can say a few words, but cannot carry on a conversation, he paces a lot, but isn't steady on his feet, so he has fallen a few times, and was unable to walk a few days ago, but just for one day, and he can no longer feed himself; although, he can still eat.

I will add a few more warnings that we have learned during the process of this disease:

1)  Medications can be very hard (for some patients) to balance, and it can become largely experimental to figure out which medications, or combination of medications will work...and sometimes not work.  Patients are often admitted to a psychiatric hospital for a period of up to two weeks to try to find the right medications.  If possible, we highly recommend finding a hospital that has a geriatric psychiatric unit because they are equipped and knowledgeable about Alzheimer's much more than a typical psychiatric unit.

2)  This disease is very hard on the patient, but it is also very hard on the caregiver.  Get help!  Ask friends to sit with your loved one, so you can go to a support group meeting, or just go for a walk alone.  Find a facility in your area that offers "day care."  Some facilities only allow weekly care, but it is wise to know about that, as well.

3)  You may plan to keep your loved one home until the very end, but sometimes it is not possible.  There are numerous reasons that those with Alzheimer's have to be placed in a facility.  Sometimes it is for their safety...sometimes it is for the safety of the caregiver.  Even if you plan to keep your loved one home, you should still visit facilities...just in case.  It also doesn't hurt to get a name on the waiting list!  Most facilities have a waiting list, and it can be up to 2 years long.

From the very beginning, our mom was adamant about keeping dad at home until the very end.  In November of 2012, my mom was at my house, and I could tell that being the caregiver was taking a toll on her.  Dad was showing a few anger outbursts, he wasn't sleeping well, so she wasn't sleeping well, he was her shadow, always worried about being near her.  Dad had said after he was diagnosed that if he became "too difficult" that we needed to do what was best, and it would be okay.  I had a discussion with mom, and told her that if it got to a point where it was more than she could handle that we would support her decision to place dad in a facility.  Still, she was adamant that she would keep him home.

Because mom was adamant about keeping him home, we had not researched facilities, and we were completely unprepared when dad took a rapid, steep decline.  Dad was placed into a psychiatric ward to try to balance his medications, but the balance was not found, and the doctors, psychiatrist, nurse, and social worker recommended that dad move straight from the hospital to an assisted living facility.  Not only were we not prepared for the waiting lists, but we had no idea it would be even more difficult because dad was labeled a "behavior case," and many facilities were unwilling to take him.  Mom, against everyone's advice, decided to bring him back home, but he was placed back into the hospital a few weeks later, and then moved to an assisted living facility.

Just because your loved one is placed on a waiting list does not mean you have to accept the placement when you are called.  Being prepared is very important, though.

4)  Hire an Elder Care Attorney as soon as the diagnosis is received.  This is very, very important!  The attorney will help you figure out long-term care, which is crucial with this disease, especially from a monetary aspect.  You need your loved one to be a part of the process, so you need to do this while they can still make decisions with you.

5)  Be prepared for family problems.  It is very common.  Too common!  You can read my last post to learn more.

I hope these warnings will help you prepare for the future.  Even with the warnings, it is so difficult when these things come to pass.

Wednesday, January 28, 2015

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.

Thursday, January 22, 2015

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 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 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.

Monday, January 19, 2015

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.

Thursday, January 15, 2015

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.

Monday, January 12, 2015

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 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.

Friday, January 9, 2015

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!

Thursday, January 8, 2015

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 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 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!

Wednesday, January 7, 2015

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 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