This story comes to us from Maria Hennig.
I have been caring for my 88 year old mother for just over 6 years. She has vascular dementia. My father was starting to show sign of it as well. He passed away from natural causes about a 1 1/2 years ago.

I give Holy Communion to other shut ins who live at home or in nursing homes etc.

Someone had said Alzheimers/Dementia patients should not receive the sacrament anymore. (ED: what are these "someones" possibly thinking?? Amazing how distorted beliefs can become)

I was giving my Mom her pills one night. She though it was communion out of the blue she did the Sign of the Cross and said Amen.

Through the fog of this disease she still remembers the Gift of Life & the forgiveness of Sin. AMEN

(also from Maria)
I care for my mother who has severe Dementia. At midnight on New Years Eve! I kissed & hugged her and said HAPPY NEW YEAR! She hugged & kissed me back and said OKAY, now we can go to sleep. She has moments of awareness. These are the moments that make it all worthwhile. I Love my Mom!

This is a re-post from an inquiry I received:

We are searching for women in LA, Miami and New York City, so if you have any interest in posting it to your blog, please feel free to post the following:
Strickman-Ripps Inc, a casting company, is working on a testimonial commercial about Alzheimer’s patients and their caregivers. We are looking for a daughter caregiver and her mother who has early to moderate stage Alzheimer disease to share their story. This is an opportunity to tell your story and help people who may be going through a similar experience.

If you are interested please email [email protected] or call 212-966-3211 with your contact information and answers to the preliminary questions listed below. You may then be contacted by a researcher from Strickman-Ripps Inc to see whether you and your mother qualify for an in-person video interview.

If selected for the commercial, the mother/daughter pair will be compensated.

Is your mother currently taking any prescription medication for Alzheimers? If so, which medication(s) is she currently taking?

My mom asks me the same question over and over again.  I respond with the same answer each and every time.   
She was over at my house for dinner last night and she must have asked me over 10 times how old Natalie was.  Natalie is my daughter and her grand-daughter.  Mom babysat Natalie ever since she was an infant.  Even now, Mom sees Natalie at least once a week. 

I'm sure you know that a person with Alzheimer's tends to ask the same question over and over again.
After mom and dad left, Dave asked me how many times mom asked how old Natalie was.
I replied "I stopped counting."

It used to frustrate me when I had to answer the same question over and over again.  Sometimes 10 times in a span of a few hours, some times more.

What I realized was mom's questions are important and relevant to her at the time.  Her condition keeps her in the moment - at that moment.  It doesn't matter how many times she has to ask, she keeps asking because it's what's front and center in her mind. 

So, I stopped counting.  Instead, I respond with an answer, and occasionally I follow up with another question or a statement such as "Mom, you must think about Natalie all the time.".  She then smiles and tells me how she remembers her grand-daughter coming home from the hospital for the very first time, and how she held that baby infant in her arms to drink in her love.

It's amazing the kind of emotional memory mom still holds on to.  She may forget what she heard five minutes ago, but she doesn't seem to forget how an event or a person made her feel.  In this case, mom distinctly remembers Natalie coming home from the hospital 13 years ago.  

She just doesn't remember that it was 13 years ago.

This is cool! 
UC Irvine's Institute for Memory Impairments and Neurological Disorders is holding its annual Wine auction night.
Go, drink some "purple sunshine" in style and support the cause!

Check it out here:  http://www.mind.uci.edu/wine-for-the-mind/

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...

One of the best things I love about young children is their emotional honesty and how their short term memory works.  When my son was little he would sometimes come crying into my arms and would tell me his sister was mean to him, and that she hurt his feelings.  I would wipe his tears, hug him, kiss his chest and sometimes offer to put a bandaid over his heart.  In no time, he would run off to play with his sister, forgetting that she was "mean" to him. 

These days, I see my mom acting much like a young child.  She is brutally honest about certain things, and she quickly forgets.  The other day, I was driving mom and dad back to their home from a long day of doctor visits.  It was getting to be dinner time and knowing that cooking was a struggle for them both I offered to buy them take-out dinner.  Dad said "No", being the very proud man that he is, for at 78 years old he still believes he should be the one taking care of everybody and not the other way around.  But mom who ordinarily would just comply with dad spoke up and said, "There is nothing to eat at home and I'm getting hungry."  Wow, before her Alzheimer's disease, she would never say such a thing!  Well, a little honesty goes a long way.  I picked up some dinner for them, and heard mom exclaim "Oh, I love these Chipotle bowls!."  I glanced over at dad through the rear view mirror and he just shrugged his shoulders.  Lo and behold less then 10 minutes later, I stopped the car to drop them off in their driveway and handed mom the bag containing their dinner.  She asks me what it is.  I tell her it's their dinner.  Mom looks to dad and says to me "Oh no, I can't accept that.  I have to cook for your dad.  You take it."  I tell her it's ok, that she's had a long day and she should get a day off from cooking.  She says, "Oh, yes.  It's getting difficult to cook these days.  I no longer enjoy cooking anymore."

I pull out of their driveway and get on the road to come home.  All the while thinking, "I'm glad Dad's there, so she doesn't forget to eat".

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.