Lessons learned from Loss

I have many resources for my writing prompts.  One of my favorites is Meera Lee Patel's book Start Where You Are.  It is a beautifully illustrated book of quotes and accompanying writing prompts.
Recently, the quote I came upon was "when you lose, don't lose the lesson", by the Dalai Lama.  The writing prompt was as follows:
"Think of something you lost recently.  What are two positive insights you gained from the experience? " 
I thought back over the past few days and couldn't think of anything I had lost.  Thought back over the past few weeks and still couldn't think of anything that had gone missing.  But one phrase kept running through my mind - I had lost my mother!
Now I never understood the use of the word "lost" to refer to someone's dying.  When something is lost, it is implied it can be found. I didn't need to "find" my mother.  I know where she is! As I believe, she has taken her spot in heaven with my dad and grandparents and everyone else who went before her. But the expression kept popping into my head...I lost my mother.
Instead of fighting this idea I decided to explore it more deeply.  
I had "lost" my mother just before Thanksgiving. But in actuality, she was gone long before she died.  Mom had Alzheimer's.  Over the years we lost pieces of her - her stories, her smile, the twinkle in her eyes.  Her spirit had been stolen by this horrible disease.  
In her book, Learning to Speak Alzheimer's, Joanne Koenig Coste describes Alzheimer's as "one of the great scourges of old age in the twenty-first century".  Luckily, government and medical agencies have continued to increase funding and research for the cause and possible cures for the disease that effects millions. But there is still so much that is unknown about how the disease begins and how to stop it.
As for my mother's journey with Alzheimer's it began as most - misplacing the keys; forgetting where the car was parked; repetition of the same stories over and over again.  She became unable to keep up with conversations around the table.  She became quiet and withdrawn.  She forgot how to cook.  She forgot the names of her grandchildren and great grandchildren.  She struggled to remember my name and the names of my siblings.  When we went to visit, her expression was so sad as she struggled to put the pieces of the puzzle together.  Who is this person?  "I think I know you, but I don't know how".  
And as her child, I wanted to go in and give her a big hug and kiss hello, but sometimes she seemed so frightened.  I wanted to have conversations with her - tell her about her grandchildren, things I was doing, trips I had taken.  What I would give to hear one of those stories that she repeated over and over again one more time.
As I continued to write down all the things I "lost" as my mother battled Alzheimer's, I started to think about the "positive insights"
I was supposed to be reflecting on.  What positive insights could possibly come from such a devastating disease?  And the more I thought about it, I did start to discover some things I learned about myself and how I was dealing with the loss of my mother (even though she was still alive) and they were positive. 
I had to create a new relationship with her.  As much as I wanted to walk in and hug and kiss her and tell her about what was going on in my life, it wasn't what she needed.  I learned to slow down and see where she was at any given moment.  Sometimes she could be quite funny and engaging in her own new way.  I learned to appreciate any time she was chatty.  I learned to let her take the lead.  She was living in a whole new world.  She told great stories that helped her keep things logical and in order.  Even though her past memories were gone, she kept these stories straight.  Like the one about how she was taking care of the children who lived in this house while their parents were away.  The children were dolls.  She loved them.  She used her walker as a stroller to take them everywhere she went.  She referred to all her family pictures as "theirs" and commented on how big that family was.  I learned to put myself in her world instead of trying to keep her in mine.
We were so lucky as we continued on this journey with her.  She had a wonderful neurologist who encouraged us to educate ourselves about the disease and its progression.  When my dad died we were lucky to find a spot in an assisted living facility that also had a Memory Care Unit.  When mom became unable to care for herself, we did not have to leave the facility.  She was able to move to the Memory Care Unit.  For as long as she was able, she would go over to the assisted living side for sing-a-longs, bingo and art class.  We were so blessed that she was in a facility where people knew her, loved her and cared for us, as well.  
Alzheimer's changed my family.  We all dealt with the downward progression in different ways. I learned there is no "right" or "wrong" way to grieve through the process of the disease.  In the course of a single day, each of us would see different things in our mother.  She would almost always recognize my sister, and almost never recognized me.  I didn't love my mother (or my sister) any less because of this.  We each had different times of day when we could visit, so we saw different parts of her day.  If  we got there in the morning she was (at times) more alert and engaging.  If we visited late in the day she would be more quiet and confused about where she was and why she was there.  Every visit presented a new challenge.  And each of us handled these challenges in the best way we could.
I have been writing and rewriting this post for days.  I have deleted it so many times, thinking that it is too sad a subject to share in a blog post.  I looked through some of the notes I had written while reading Learning to Speak Alzheimer's.  I remembered how much comfort I got from reading the book, learning more about the progression of the disease and that what we were experiencing was all part of the process.  The truth is the disease has a profound effect on the family of the person who is diagnosed.  And the sad truth is, many of my friends are now dealing with a family member who has been diagnosed.  If you find yourself on this path, I encourage you to create a support system.  Go to doctor's appointments and share your observations with your loved one's doctor.  Join the local chapter of the Alzheimer's Association.  Educate yourself about the disease; the causes, the latest research, and how it progresses. Remember that you are not alone.  Find the resources that best suit you and your needs.
I lost my mother.  I lost her to Alzheimer's.  Because of this disease, I lost little pieces of her at a time. And each time I lost a piece of her, I had to learn a new way to love the mother I had left.