My background is in running multi-million dollar technology implementation projects for various fortune 500 companies.  In my experience, I have found that one of the biggest determining factors for the success of any project is getting stakeholder buy-in.  Without it, you can blow away millions of dollars developing the most sophisticated and life changing systems that will not get used by anybody.  In fact, large organizations realize how critical getting buy-in is.  Some organizations spend hundreds of thousands of dollars on high profile consultants to help them with change management process and stakeholder analysis.

Why am I talking about this?  As your Alzheimer's patient journeys through various stages of the disease, you as the primary caretaker will be faced with many decisions that will affect how the patient is to be cared for.  Each family will go through their own process depending on various factors.  Key decision factors will rely on what stage of Alzheimer's your patient is at, but most likely you will find yourself answering to the following general questions:  1.  where will the patient continue to live  2.  what can the patient do on his/her own  3. how much care does the patient need.   

Whatever decisions you decide to make, it will mean "change" for the patient, and you will need some kind of buy-in.  I can also guarantee you that if you think implementing your decision will be easy, you will be sorely disappointed.    

Currently our family is going through a change process, albeit in early stage.  My sister Sue called me yesterday with frustration in her voice.  The story goes like this. 

Dad is the primary caregiver for mom.  They literally spend 24 by 7 together.  Apart from going out for medical appointments and a weekly outing to church and weekly dinner outing with my family, their socializing with the outside world is very limited.  Sue who is the other caregiver for mom wants to provide respite care for dad.  So she looked into a Korean speaking, local daycare facility for mom and excitedly told dad that they should go in for an appointment.  Now realize, what she did was to narrow down exactly what my mom needs.  The reaction Sue got from both mom and dad were quite deflating for her.  Dad's response was full of skepticism and doubt.  "What is this place about?  Where is it? The questions were endless, and what Sue thought she got from dad was a flat out "No".  Mom's response was more of a question, "why do I have to go anywhere?  I don't want to go anywhere full of old and sick people.".  

So now  my sister and I have a challenge on our hands.  We have to convince my 78 year old, ex-military officer dad that not only does he need respite care, mom needs to be in a social setting.  We have to convince my 73 year old mom with Alzheimer's that she needs to separate from her husband for a few hours a day and meet new people. 

Wow, doesn't this sound like a challenge of the month?  Well folks, I volunteered to help Sue with this change process.  I will be having many conversations with mom and dad, hoping to influence them with this critical, yet necessary step in caring for mom, as well as dad. 

I will keep you posted with progress. 

These days, conversing with my mom is like reading really good fiction that is partially based on a true story, or maybe like watching "Titanic".  She mixes facts with fiction and weaves such a fantastic story that I get drawn in without a clue as to what's real and what's not.  Today was no different.  I accompanied my mom to her quarterly visit with her Neurologist.  On the hour-long drive, she told me that my son Nathan walked all the way to her house from his school and asked her in Korean to make him his favorite soup that she used to make him when he was a little boy.  Well the facts are, his school is 20 miles away from where she lives, so there's no way my son would EVER walk 20 miles just to go see Grandma.   Another fact is, he can speak about two words of Korean:  yes and no. 

All I can surmise from this is she was remembering the times when she used to babysit him as a young boy, and how she used to make him this soup that he really liked, and perhaps longing for that feeling.

It's really interesting for me to observe what she remembers and what she doesn't.  What's even more interesting is HOW she remembers certain events or conversations.  I think my mom chooses to remember events the way she would like to.  Perhaps she remembers in a way that makes her feel good, or the way she would have responded or reacted - an "emotional memory" if you will.  I don't even know if her creativity is due to medications she is taking for her Alzheimer's:  Namenda and Aricept. 

According to a recent Discover article "Past Imperfect", scientists previously thought long-term memory was etched into our brains, permanent and unchanging.  Recently however they are discovering that long-term memory is much more dynamic and can be rewired.  In experimental treatment, patients with PTSD (post-traumatic stress disorder) were able to permanently change the way they remembered a traumatic incident. 
 
So, is my mom's creative storytelling due to Alzheimer's, or is she just rewriting the stories of her life based on how she wants to remember them?

This week has been amazingly good for Alzheimer’s related causes.  Maria Shriver’s report “A Woman’s Nation Takes on Alzheimer’s” came out and there was plenty of press coverage to go around.   

Moreover, this week’s TIME magazine cover was on Alzheimer’s.   In one of the accompanying articles in TIME,   Nancy Gibbs writes that a third of the caregivers are responsible round the clock. 

I understand this because my dad who is the primary caregiver for my mom never leaves her side. 

The issue with providing round the clock care for an Alzheimer’s patient means that the caregiver has no time off.  There are no free weekends or leisurely trips to the mall, or even some time out for a movie.   

I was conversing with a caregiver and asked her what would be helpful.  She said, “If somebody that lives close-by can just stop by and have tea with my mother-in-law (an Alzheimer’s patient) for 30 minutes, that would relieve me.”

Once upon a time, a neighborhood used to be a place where we all knew each other. Children were playmates, parents were friends, and new people were welcomed with open arms.

Nowadays, we come home from work, or school, and become isolated in our homes. We tend to not bother with welcoming new neighbors or meeting current ones. Their names, likes, dislikes, problems-we know none of them.

What’s the point of this? If we knew our neighbors, took the time to meet them and become actual neighbors, we are more likely to create a support network. Things like providing relief and time off for an Alzheimer’s caregiver could become possible when we come together as a community and offer a helping hand.

Yesterday, I was glued to the television screen for over an hour.  This is unusual for me, because with the exception of watching an episode of Mad Men or anything Jane Austen related, the TV doesn’t command that much attention from me. 

I was witnessing a historical moment where one by one, all 33 Chilean miners were being lifted up and pulled out from the depths of the collapsed mine that was the home of their captivity for the last 70 days. There was joy and happiness all around.

We hear stories of collapsed mines all over the world, yet those moments are rarely celebratory.  Often, the media is filled with grieving family members who lost hope, and are wondering how they will survive the next day. 

So what was so different and inspiring about this Chilean mine story?

It was a miracle that was made possible by a leader, President Pinera, and his men that didn’t give up, but forged on to save the lives of 33 men.  The leaders of Chile committed themselves to this rescue effort, and executed a plan where failure was not an option.  This was a story about a community of men who were trapped in the depths of earth’s darkness who didn’t give up their will to live, but stayed committed to survive.     

When I observe differences between successful people and those that are not so successful in life, the one major distinguishing theme is that successful people have the idea, thought and attitude of never giving up.  In the most challenging times, the successful people don’t even entertain the idea of giving up but remain committed to reaching their goal.

So why am I writing about a rescue effort in an Alzheimer’s blog, you may wonder.

Like President Pinera and his men, we must never give up on a goal to finding a cure for Alzheimer’s disease.  Yes, today there is no real cure for this disease.  Yes, today most people think Alzheimer’s disease is an old people problem. 

But no, we must never accept that a cure for Alzheimer’s will not be found.  In fact, we must fight to find a cure for this disease. 

Just imagine what the families of those 33 men were feeling as one by one, their beloved father, husband, son or a nephew emerged into sunshine from the darkness.  Imagine what we, caregivers and family members would feel when we learn that our mother, father, husband, wife, friend emerges from the foggy depths of Alzheimer’s into the sunshine of clear memory and recognition.

This story comes to us from my 13year old daughter, Natalie.  She gladly accompanies me on our weekly dinner outing with grandma and grandpa, even though as you'll read on her post, they can't really communicate.   

My grandmother was recently diagnosed with Alzheimer’s. Because of this, her English has been deteriorating even more than it used to, and I am having a hard time understanding and communicating with her. I can no longer hope that when she speaks to me, she speaks in English. My Korean is not as limited, but not by that much. Simple things like asking how her day was became a challenge that I could not overcome without either my mom or brother as a translator. It has always been hard to talk to my grandmother and hold a conversation, but it is even harder now.

Today, I saw a presentation on moving forward. There is a need for all of us to keep moving forward with our lives no matter what complications we are given. So despite the complications and hardships that come with taking care of an Alzheimer’s patient, we need to keep moving forward and doing our best. Despite the complications and hardships of not being able to communicate very well, we need to try our hardest. Despite the complications and hardships of forgetting things easily, we still need to move on and do our best with life.

Life has complications, and that is a fact. What is also a fact is that we can still keep on going and live it to the fullest. 

I’ve decided to move forward and express myself to my grandmother with art. For Mother’s Day, I drew her a card. Because pictures are easy to comprehend (at least, mine are) and face no barrier of language, I can now express my feelings towards her.

This story comes to us from Cheryl Freeman, a lovely blonde lady and a super woman. 

"Just look at this wrinkledy skin," my 83 year old mother-in-law says. "I must be getting old." "That isn't old skin," I tell her. "It is just now getting comfortable." We have this same converstation several times a week. Sometimes we have it several times a day. Each time I issue my line she says, "I have had a wonderful life with lots of friends and lots of love." She does not remember how to take a bath or shower. She has forgotten how to work the microwave or even what a microwave is. She does not remember how to cook at all. She has forgotten names and relationships but she never forgets that she is loved and that she loved in return. She has been through rosy times and stormy times but she remembers only the rosy times. She is such an encourager telling the women in her life how beautiful they are and what pretty clothes they wear even though she does not remember their names from one day to the next. She tells the men how handsome they are and is known to still flirt with a few batting her eyes and tossing her hair around. I think of her as my wrinkled three year old, funny and sweet yet impetuous and at times a bit naughty. She was diagnosed with Alzheimers 4 years ago even though looking back we realize now that her problems began about 12 years ago. I often think that perhaps she would be in a different place mentally if we had had her assessed when we first saw the problems. We contributed much of her mental fog to grief over the loss of her husband of 50 years. As a caregiver I tried to bring her mental status back to par with books, movies, games and outings but nothing seemed to help the slow decline. She is now on 2 medications and seems to be on a plateau of sorts. She is continually hiding things which for me is very stressful since she seems to be very good at this game. Today she hid her shoes. Yes, all 8 pairs. Our house is not very big but the shoes were no where to be found and we were going to be late for a doctor's appointment. She is now sporting new shoes bought on the way to the doctor's office. The hidden ones will have to wait to be found until I can take time away from my job to look for them. Life is now, to say the least, interesting.

This story is mine.  :)  Last night, we (David and I) took mom and dad out to see the movie Secretariat.  I wasn't sure how mom was going to do in a dark movie theater but when I asked her if she would like to go out for a dinner and a movie, she seemed genuinely excited about a prospect of going out for the evening.  We were a bit apprehensive at first because mom's confusion increases when the sun goes down but we decided to give this outing a try.    
Well, lucky for us, last night was a success!  

The triumphant story of courage, a winning spirit of an amazing race horse and his owner, the willpower to face challenges head-on was the underlying theme that weaved in and out of the beautiful story behind the movie Secretariat.  Interestingly mom was so grossly engaged in the movie that when Secretariat lost one of the races, she squeezed my hand and uttered sighs of sadness.  However in one of the final scenes when Secretariat magnificently finished the race, mom once again squeezed my hand and whispered over and over "yes, that's the way to go."
On the drive back home, mom talked about how inspirational the movie was, and how memorable it was for her.  Her exact words?  "I will remember this movie for a long time.  It's a very memorable story."  

Well folks, I will keep you updated from time to time to let you know whether mom remembers Secretariat, and the feeling of victory and triumph she felt while watching this movie.    

This story comes from my dad, who is taking care of my mom, an early to moderate Alzheimer's patient.
One of the typical symptoms for Alzheimer's patients is that they easily get agitated and nervous.  My mom checks her wallet every morning to see if she has any money.  If she finds that there is no money in her wallet, she gets anxious, upset and nervous.  Knowing this, my father checks her wallet before going to bed at night and always makes sure there's a $20 bill in her wallet.  Without fail, mom gets up in the morning, checks her wallet, discovers a $20bill and tells my dad, "I feel rich" and smiles.  This brings a smile to my dad, a 78 year old, ex-military officer.  :)