If I knew then what I know now

I came late to becoming a nurturing caregiver for Mom. I was too late for Dad.

Dad and I had issues.  He was of a generation in which men didn’t easily show their emotions and he struggled even more with his contentious daughter.  Fortunately we both lived long enough to overcome our differences and forgive each other.  I think he had more to forgive than I but we got there.

In her early 80’s, Mom began to show signs of dementia.  Dad followed but his Alzheimer’s progressed much more slowly than Mom’s.  He had more immediate problems with Parkinson’s.

They moved into Supported Living—he for his increasing physical problems and Mom for her advancing dementia—and they remained a fiercely devoted couple.

By now he needed a wheelchair, a fact that Mom completely failed to comprehend.

“Hop up Bob,” she would chirp.

“Mom, Dad is in a wheelchair,” I would tell her.

“No, he’s not,” she would look at me in disbelief, clearly only seeing he big, strong, handsome man she had married.

He needed the help of the nursing staff to dress and undress, which totally enraged Mom. When she began interfering with the nurses (at one point trying to pour water on them) the exasperated staff suggested they move to separate apartments.  Dad wouldn’t hear of it.  “She is a wonderful woman.”  And that was that.

Occasionally, to give Dad and the nurses a break, I would bring Mom to my house where we would walk in the garden or play scrabble.   Once we were very late in returning.  Dad was at the door, furious.  He yelled at Mom (something I had never seen him do) and accused us of abandoning him.  She fell to her knees, reassuring him that she was never leave him again.  And what did I do?  Behaved like the idiot daughter of my youth, glaring at him as I left.

He contracted MERSA and had to move to a skilled nursing facility.  He was alone in a less than stellar facility—a drab, dispiriting place where he knew no one, with no idea of when he could return home to Mom.  I brought her to visit but our visits were brief and to my shame, I was always relieved to leave.  How lonely and frightened he must have been.

It was nearly two months before I was able to move him to a much better place—better staff, better care, better food—and he began to improve.  Finally he came home.  I began to spend more time with them. I became a better caregiver but I never really had my heart in it.  I still looked at the clock.

For the last two weeks of his life, Dad slept and Mom watched over him.  He died at the age of 89, Mom’s best friend for 75 years.

To help her fill the void, I took her to a painting class and it was her unexpected and glorious art that set me on my path as a caregiver—a labor of love and a journey of personal discovery.

What do I know now?

He must have been terrified.  I could have done so much to make his life (and mine) better and happier.

  • Be there – Simply sit with him, let him know by my presence that he was not going to be abandoned.
  • Touch – A gentle reassuring hand on his back—better yet a gentle massage of his shoulders and neck.
  • Favorite food—bring him something he loves to eat
  • Smile
  • Hugs (despite the family dislike of physical intimacy, it might have been welcome after all these years, who knows?)
  • Family photos – pictures of him and Mom, family vacations—the happy times, reminders of all that he did for all of us.
  • Relax and not look at the clock
  • Tell him you love him and mean it.
  • Ask for advice
  • And finally think more of him and less of me. Even better, think of us both as allies…in the storm.

I may not have been there for Dad but thanks to Mom, I have learned and I can be there for the next person who needs me.