It was clear that during these last 18 months, when my mother needed more time than even my very understanding job could allow, I took a sabbatical from work and became her caregiver, full time, 24/7.   For the last year and a half I did everything with and for her.  Everything.  Woke her.  Gave her coffee.  Helped dress her.  Cooked and gave her breakfast.  Then her pills.  Helped her to the living room.  Turned the TV on to CNN or The History Channel.  Made her comfy on the couch.  Made sure her book was close.  And the dog was next to her.  And her walker was on the other side. And she has water.  And then I would go in my room and try to do some work. “

Mary”…….”Mary…..Ellen”……”MaryEllen”…  Out of my room.  “Yes Mom”.  “Canyou fix the TV, I can’t hear it”   I would check her hearing aid.  I would adjust the volume of that “OK”….”That’s fine now”.  Back in my room. “Mary”……..”Mary”……”Ellen”……..”MaryEllen”……Out of my room “Yes Mom”……”Did I eat”   “Yes mom, are you still hungry?”  “Could I have another cup of coffee”?  “Sure”.  Coffee is made, served, along with a few tea biscuits. “Oh, how wonderful…would you sit with me?”  “I have a little work I have to do mom.”

Back to my room.

Mom needs her lunch.  Make her lunch, give her the afternoon pills, Chat a bit, TV on, book, near, dog here, walker – all systems go..,…back in my room  “Mary…..Mary….Ellen…..MaryEllen”……. “WHAT DO YOU WANT?”   ” Nothing, it’s ok”……Out of my room “What is it?”  “Nothing, I was just going to ask you something and now I forgot.”   I go over and plop on the couch.  “It’s nice when you sit with me”.  So I sit for a while.  “I need to go to the bathroom”  OK, up we go, get the walker, help her to the bathroom, ” Hurry Mary:  “OK Ma..” in we go, take care of business, out, walker, to living room, couch.  Plop.

“Mary, when are we having dinner?  Is Charlie home?  What about  Bill ? (the man from California who moved in with me, the crazy old lady and the blind diabetic dog)  “Yes, Alma, We are having dinner here, all of us, like we do 4 nights a week.  I am cooking a full 4 course meal for five people, with a set table, candles and flowers.  Why do you bother, people would ask me?  Because everyday is a celebration when my mom is around.  She celebrated life.  When she was strong, she lead the celebration.  Now, she has passed the torch.  And I better lead the celebration, and lead it well.  There were moments, hours, days, when I thought – I cannot do this.  But I did.  I learned, I researched, I listened, I found wonderful doctors…..support systems were not so easy to find, since the few I went to asked if I would run the meetings:) .

My mother was having a particularly bad stretch.  She had not slept for 2 days or night, so neither did I.  She was anxious and talked alot of nonsense, things I could not follow or understand.  But I stayed by her side.  One night my mother told me there were people in her room, and I needed to make coffee.  She called me by her oldest sister’s name, Jenny.  She said Mama (my grandmother, whom I never had the blessing to meet as she died before I was born) would be upset, and I should go make coffee.  So, I figured, mom is 93, maybe she can see people that I can’t.

So I made a pot of coffee so she could smell it. Another of those small victories.   And I called Charlie, my brother, whom I love deeply and dearly, and who now lives in Pittsburgh and told him he should talk to mommy.  I still call her that.  So he did and she knew who he was and thought he was still living next door, which he had been until 6 months before, and then she handed the phone back to me and I chatted a little with him and said she has been really restless the past 30 hours or so and I had talked to her doctors and nothing is wrong and if we take her to the hospital, they will just sedate and restrain her.  So he said “of course, if you don’t want to, then don’t do that and I am on my way I’m sorry I am not there.  Are you OK? I’m coming.  You are doing an amazing job.  Just hold on.  You took amazing care of  her all along.  She is great – it’s her time.  You did great”  I said, “She’s actually sleeping now, her breathing is regular, very relaxed, she seems OK.”  That night there was a huge thunderstorm where Charlie and Barbara live.  A bolt of lightening hit the ground outside their home and woke them and it lit up the whole valley.  Everything was bright.  For that one moment.

And that night she died, in her bed, in her home, my home, in her sleep, without even a wrinkle in the sheet.  That was what I had prayed for when she was ready. That is what many cannot provide in full.  But there are the little steps, the small victories.  We live for the small victories.   My mother had lived with me for over 13 years. For years I craved some privacy.  Now I wish she was sitting on that couch calling  Mary….Ellen….MaryEllen…. but I know she had her cocoon, her safe place.  My parents had given us unconditional love and a safe haven all of our lives.  I am honored to be able to be part of that circle in some way.

So, this is a personal and professional journey.


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