Let me tell you about my mom.  I’m not even sure where to start or where I will go with this, I am starting with no plan except to write about mom.

If you think about mom today, you cannot help but land on the fact that she has Alzheimer’s.  It has become the defining element of this stage in her life.  A year ago we thought she was going to die at any time.

We went down last May because we were sure that she was going to die soon, or at least slip into oblivion and I wanted a chance to have that conversation that you don’t want to lose someone without having.  So we went down, and I had that conversation with Mom and with Dad.

In that conversation we spoke of love and life, and faith and after life. She said that she was prepared to die. I told my mom goodbye and said I would see her on the other side.  Then  I prayed that she would go quickly and with grace.  That is right, I prayed for my mom to die.  Without going into details, she was very sick and had no memory from moment to moment.  My mom was gone.

And then I went back home and I mourned my mom for a couple of months because to me she was already gone.  I could still talk to her, and I called often, but she couldn’t remember the conversation we had just had, never mind anything we had spoken of in recent times.

Then one day in July I was at an outdoor concert at the library and I got a call from my parents home phone number.  I never get calls from that number, so when I saw the number I prepared myself to hear the news that she had died.  But that was not what I got when I answered the phone.

When I answered the phone, it was Mom.  Not the same lady who had been occupying her mind for the previous year or so, but Mom.  It was a surprising conversation, and I could tell right away that something had changed.  After they had mostly cleaned out an infection she had developed in her spine that had almost killed her, they put her on a new experimental Alzheimer’s medicine.  The result was that she started making memories again.

The way she explains it, she suddenly “awoke” from a haze and had no memories of the previous year and a half or so.  During her time “away”, my brother and his family had moved into the house to help take care of her and my father.  They had done some remodeling of the house and largely relocated Mom and Dad downstairs while James and his family had taken over the upstairs.

The reason my mom called was that she wanted to ask me questions about what had happened, and how things had transpired and she  trusted me for honest answers.  As you might imagine, it must be very confusing to go through this, and it must be even more so to wake up from it and see so many things had changed as if over night.

So now, mom is in a post awakening state, she is creating new memories and for the first 6 months was doing a good job of remembering our conversations from call to call.  It is hard to tell, but from our conversations it seems that she is again slipping.  She will tell you, and is adamant with the family that she has been cured, but there is no cure for Alzheimer’s.  Even in this post awakening state, her personality is changed and she struggles to try to grab and maintain control in any way that she can.  It must be very scary.

That is the thing that I saw in mom a couple of years ago when she knew she had the disease and that she was going to slip.  I had never seen mom truly afraid, but I saw that in her the visit I had with her before she got so sick.  She knew the path she was on, though not exactly where it would go, and she was afraid of losing control, of slipping away, and of what that would do to Dad.

Now we are a couple years down that path.  Mom’s personality has predictably changed and she is in a daily struggle with my family to try to hold onto some level of control.  Things like meals, personal space, anything that can be a struggle for control can become one.  I don’t experience it first hand as my interaction is almost entirely through phone calls, but it has become part of the daily struggle.

When we think of who we are as humans, there are really three main elements of our being, mind, body, and spirit.  Mom’s body has been savaged by this disease.  Here mind has been gone, then miraculously came a long way back, but it continues to slip.  Her spirit is the same though it is hampered by the limitations of the body and the mind.

Have you ever come upon the shell of a really old house?  One of those old houses that was obviously once beautiful and vibrant, but which had come into disrepair.  The windows may be broken, perhaps there are still curtains hanging through broken pains of glass.  The paint is faded and pealing, the porch may be collapsed or the stairs broken.  But even through the ravage of time you can still see that the house was once a place of love and laughter, hope and happiness, fear and joy, faith and family.  The house was once the place.  The place was the house.  But the place isn’t what really matters, the place is not what made it a home.

As we go through our lives, it is the spirit that drives us forward.  It is the spirit that makes us who we are.  It is the spirit, and the way it uses the the mind and the body, that makes us who we are.  Just like the family that lives in a house is what makes it a home, the spirit that lives in our mind and body makes us the being we are.

So, when I think about Mom, I don’t think about the mind and the body that she occupies today.  I think of the spirit inside.  The spirit that was patient and kind.  The one that taught us to care for others and place their needs above our own.  The one that loves us and wants us to love and be loved.  I can’t really share that part of Mom with you because each of us experiences a person’s spirit in a unique and individual way.  But I can tell you that she is special and she is still in there somewhere even if most of the time she can’t find the way to show it.

I love my Mom, and I know that she loves me too.  That is the Mom I will meet on the other side.  Happy Mother’s Day Mom!

PEACE!

KT

Day 48