Resources - online course for caregivers

Hi all,

I just wanted send out a  short post that may be helpful to those of you with a loved one with dementia of any kind -- Alzheimer's, Parkinsons, FTD, ..... etc.

The below was sent to me from an online support group member.  

Here is a link to an on-line course for caregivers of people with dementia: (copy & paste)

It was recently mentioned in a blog post on the New York Times website: (copy & paste)

The course was developed by two renowned researchers in the field, Laura Gitlin, PhD and Nancy Hodgson, PhD, RN and is designed as a learning tool for a variety of caregivers, including professional and family caregivers. It is free and is a five week course, starting Oct 14, 2013.

Some highlights from the article:
"The point is to help people understand Alzheimer’s disease from a comprehensive perspective that encompasses not only its medical implications but social, psychological and environmental considerations,” Dr. Gitlin told me in an interview.

She’s especially focused on what she calls the “lived experience” of people with dementia. Caregivers and professionals “need to know about the different stages of this disease and how a person is functioning during these stages in their home, their family and their community,” she said. Only then does it become possible “to develop a supportive environment that allows the person to use the capabilities he or she still has.”

I've also put the above link under "Resources" so if you want to find it in the future or pass on to anyone - you dont have to dig up this post.

With over 15.4 million caregivers (a/o 2012) providing more than 17.5 billion hours of unpaid care valued at $216 billion.... thought this may be helpful to a few of you...


Six Months

Today is September 13th, 2013. 
If you ask me what I’ll be doing on March 13th, 2014, I’ll respond, “That’s six months away- that’s ages away.  I do not even know what I am doing tomorrow.”
If you ask me where I was March 13th, 2013, I remember it like it was yesterday.
March 13, 2014….an intangible time in the future that I cannot really even fathom.
March 13, 2013….tangible lump in my throat, heavy chest….feels like it was yesterday.
Yet they are both exactly 6 months away from today.  And so if the distance is identical, why are the two so unequal?   Time is a funny thing…
No room for Dan!  Mom, Adam and Megan dreaming away
When Mom and Nanny first got sick, I used to dream about both of them all of the time.  We all did.  Heidi and I have had countless talks about how similar our dreams are.  Neither Mom nor Nanny were ever sick in our dreams.  Well, they were, but they weren’t.  Mom looked like mom- her cheeks were full and had a hint of blush (the only makeup she really ever wore or needed),  her outfit - some kind of cheesy sweater that she adorned so well, and she was talking up a storm.  We would talk about her being sick and in some dreams she would say how she did this or that and now she was better.  Her speech was impeccable; her voice crisp.  She was not in a wheelchair but instead walking about like any healthy 50 something.  Her weight was what it should be, and all physical ailments gone. 
If this was 2008/2009 that I was telling you this, I would tell you how much I would dread these dreams.  They were so incredibly real. 
Have you ever noticed that window in time, right when you wake up, that seems to belong to itself?  Sleep is over, you are now awake.  But reality of the day has not yet hit you.  You are surrounded by calm, often still embracing the dream before it fades away…
And then the day hits, and that moment of calm which occurred just seconds before feels as distant as the dream you can barely recall.
The moment where the calm clashes with the Day was why I dreaded those dreams in the early years.  For just a few moments I had forgotten Mom was sick, that Nanny was sick.  Life was good again.  And then reality would hit like a ton of bricks.  Things were not going to be ok.  Mom was not going to be OK.  I will never have a  two sided conversation with her again.  I dreaded those dreams because the weight of reality, held back through the night, came crashing down in the AM and the weight of it felt unbearable.
But as Mom progressed…as her sentences became words and then her words became silence… as she went from physically fine, to a slowing walk, to wheelchair bound and finally bedridden…I found myself looking forward to both the dreams and that wonderful moment just after waking and before reality.  I missed her so much, and if a dream was where I could talk to her, then I was happy to have it.  I would lie in bed in the morning and try to hold onto the dream and the feeling as long as I could.  As relentless as time, reality of Day always won and I had to let go.  But the difference now was that when I got up to start my day, the heaviness and sadness was now replaced with gratitude and joy.  I was given another moment with Mom—even if it was just in a dream. 
Exactly 6 months ago, March 13th, 2013, Mom finally let go.  Her time had come.  In these last six months since, I have not met Mom in any of my dreams—or at least none that I remember.  I used to dream about her multiple times in a week and they all just…stopped.
At first, I was saddened by this.  Mom is often the last person I think about before drifting off to sleep.  And that first month, I was almost willing her to come visit me.  But she never did and she still does not. 
And maybe it’s because she does not need to anymore.  Mom dedicated 32 years to raising us (35 if you count my dad).  Even after she fell ill, and could no longer speak or walk, she continued to be there for all of us, every night.  Typical, Mom—always tending to others first, carrying out her mantra “deeds not words shall speak me” til the very last breath. 
And so on March 13th, 2013, she left our dreams and entered our hearts until we can meet again.    We are all going to be ok, because she has shaped us into the adults we have become. 
She is with us in the most subtle ways.  I watched my sister, Megan, lean on the counter the other day, and just the way she stood, it might as well have been Mom standing there.  I see Adam, Christina and Megan all raise their children with the values Mom taught us.  My handwriting looks more and more like Mom’s every day.
She is not in our dreams, but she continues to be with all of us. 
So as much as I miss you, Mom, I’m ok.  We’re all Ok.  Even if I don’t get to see you every night anymore, I know we’ll meet again.  

Rest in peace, we love you.
Mary Hall -  mid90s

Mom and I - 1989ish