The Long Goodbye

I am the primary caregiver for my mother as she progresses through all the stages of Alzheimer's dementia. 
She is now at the final stage.  Let me describe this stage.  The only things that she can do for herself are ingest, breathe, and eliminate.  She has to be bathed, teeth brushed, changed, moved around, fed.  She requires 24-hour caregiving. At nights she sleeps in the position in which she is put.  She cannot turn or voluntarily move herself.  She is not yet bedridden because we are determined for her to sit up for as long as we can make it happen.  She is not aware of us or her surroundings 98 percent of the time. On very rare occasions now, she may give us a smile, tap to music or turn in response to her name being called.  Her vanity is still intact though, as she sits effortlessly to have her hair styled daily.
This has been a long journey.  My aunt, her sister, describes it as "the long goodbye".  We have been doing so for a long time, over fifteen years.  A testament to what is possible with good care?  A testament to the patient's strong constitution? A testament to luck?  I don't know.  We just keep at it adjusting as we go along
This process has made me reassess and adjust my priorities in life.  Different things are more important.  Quality of life is paramount.  It has redefined the concept of family.  It has changed the concept of time.  It has taught me patience.   Patience to deal with the declining capability of someone who "sorted the universe before breakfast". 
In the early stages, patience to deal with her aggression, unreasonableness, repetitiveness and all the other things that happen in that period, while I was just finding my own way to understand the disease and to cope with my own life's challenges.  My life, my responsibilities, my hopes, challenges, and ambitions did not stop because I had to care for her.  But I did have to change the perspective.  I had to change, I had to adjust because now she could not.
During her decline, patience to deal with the loss, patience to deal with her care.  It is difficult for a caregiver, especially the primary one. It is physically difficult.  Even though my mother is small she is responsible for a number of my aches and pains that have come about due to lifting and moving and general management.  It is financially difficult.  I recognize but don't focus on this, giving thanks that I can afford the choices I have wanted to make. The restrictions on my time are both socially and emotionally difficult.  But even here I focus on the blessings of family, especially my daughters and some close friends who make me, their responsibility and keep me grounded, focused and happy.

So it could have been an even sadder story, but we have been blessed.
 -Karen Camejo
Dated September, 2020