For Alzheimer's patients, behavioral changes including increased suspicion, sudden mood swings and unbreakable stubbornness seem quite common. 

About a year ago, before my mom was officially diagnosed with Alzheimer's, we decided to take a little vacation up north in the Wine Country.  The first couple of days were great.  Mom had a great time trying out roasted oysters, tasting cheeses at Cowgirl Creamery, hiking up the trail to Point Reyes Lighthouse, watching the beautiful sunset melting into the ocean from our vacation spot and marveling at the noise of crashing waves right in her bedroom.

I think it was day four of our vacation when I experienced firsthand the ugliness of this disease called Alzheimer's when mom's suspicion was targeted at me.

We were going around wineries in Sonoma.  The day was rather hot, and mom had a glass of champagne with her lunch.  In the car, she complained of heat and feeling tired.  In hindsight, we should have picked up the clue that was her way of saying "I need to go back and lie down."  We continued on to the last winery in our itinerary.  I noticed that mom did not come in to the tasting room, instead she was pacing outside by herself.  Her facial expression told me that she was not too pleased.  When we were done with the tasting, we got back into the car to go back to our vacation home.  It was then that mom started saying "I can't believe this is happening to me" and "how could I have been so misled all these years", and so on. Mom started yelling at my dad, and started accusing me that the only reason why we brought her to "this strange place" was so we can abandon her.  She was furious and insisted on calling my sister to accuse her of the same.  Mind you, my mom up to this point was one of the gentlest, most loving people I ever knew.  This was not her.  This "new" her was someone very foreign to me, and I was horrified.

I don't know how he did it, but my dad was able to calm her down.  He used affirming words to relax her, and diverted her attention from hysterical suspicion to taking a relaxing bath and a nap.

A few hours later, mom joined us on the patio, enjoying Dave's famous burger with cheese and hot links.  She came up to me and apologized for her outbursts.  I just remained calm and told her that everything was fine, and that we were so happy that she's feeling ok.  We spent the last days of our vacation being a little apprehensive of what might happen next, but it was otherwise uneventful.

The trip took place over a year ago, but when mom sees the vacation pictures she fondly recalls the beauty of the place we stayed and tells us how much fun she had, even though she can't recall any of the names of places we visited.  Luckily, the "new person" who I met has remained there also, for the time being...

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. 

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.

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 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.  :)