One year ago tomorrow, my husband came home from the skilled nursing center to die.  While I often say that I don’t live in denial, I had no idea that three months later, he would be dead.  For about a week, the nursing center had been telling me that I could not take care of him if I took him home; but I knew that I would not do heroics regarding his care.  Additionally, he greatly desired to come home.  I had been preparing financially for his care for years and we were ready to take on this monetary responsibility.

For two decades, I’ve observed families living with people who have disabilities and I’ve learned a great deal from their wisdom and mistakes.  Yet, I was struck a month later when I realized that my husband’s Hospice diagnoses had changed from “late-term dementia” to “adult failure to thrive.”  Simply speaking, this means that my husband was in the dying process.

As I remember the day he came home, so many things flood my mind.  Here are some things I learned.

  1. He was constantly falling in and out of reality.  It became my job to remind him where he was and who was taking care of him which greatly relieved his anxiety.  As each caregiver entered his room, I tried to reintroduce them.  “Frank, Terry is here.  Remember she is here to take care of you today while I’m going to work.”  
  2. I learned to leave him alone because that was his desire.  Additionally, he was no long about to respond.  I had no idea how much he understood; and I was concerned that when there were distractions he knew more about his atmosphere than we thought.
  3. He slept most of the day; and he no longer wanted the TV set playing.  Frank had always wanted the TV on constantly.  Now it disturbed him.  This was my cue that he no longer needed or desired distractions.
  4. I’d been critical of the nursing care staff who would not get him up each day.  However, when he came home, I realized how weak he was.  The first day, I got him up early.  He sat up for several hours.  It was clear that he was totally exhausted beyond anything I’d experienced from him.  The next day, I got him up.  Again, he sat up for several hours.  As I took off his feet props from his wheelchair, I turned to put them out-of-the-way.  When I pivoted back, he had slipped and was falling out of his chair.  I realized how weak he was.  This was his last day to get up.
  5. I realized that his great strength could only keep him alive for so long.  I felt that he would continue to live for many more years because he was the strongest person I’d ever met.  However, operations, pain and bone cancer had stolen his ability to fight.
  6. I learned that I must be firm with his support staff, especially the doctors and nurses.  I had assumed that they would keep me informed.  Yet, when I was told that my husband had bone cancer, this information had been kept from me for several months.  Additionally, I had not been told that he was in the dying process.  When I realized his condition, I made an appointment with the nurse and told her that I could take any information given to me.  I would not tolerate not being told my husband’s status.  From that time, everyone was aware that I needed to be informed.  However, I had to be emphatic about my need to know.

I am extremely grateful for the lesson I’ve learned from the disability community and the heroic family members who have walked “through the valley of death” for years.  Again, they have taught me more than I could ever teach them.

Spring in Central Florida means many delights; but one of the best is fresh strawberries.  When our children were young and early spring arrived, we would pack up a small lunch and some water.  Then we’d pile into a car with some friends and we’d all head for the strawberry fields.  In the morning, while the dew was still on the berries, the children and I would pick enough strawberries to eat and freeze.

For anyone who has worked in the fields, you know that the exquisitely satisfying part of harvesting berries is sampling the luscious sweetness while bending over the fruit laden plants.  You don’t ever take home the largest, reddest and plumpest strawberries.  Those are eaten in the fields.

Last month, my daughter, Carol,  was speaking at a conference in Tampa.  She arranged to visit with us for a few days because she wanted to visit with her ailing father.  As she and I were traveling from Tampa to the East Coast, we passed a strawberry farm.  The harvesters’ large straw hats were the only part of their heads that was visible as they bend over the plants hurriedly picking the ripened fruit.

We spied the farm’s roadside stand. Quickly wheeling the van into the parking lot, we stopped to purchase a crate of berries.  When berries have slept in the fields the night before, you don’t get one or two quarts.  Twelve quarts are the minimum.

Giggling, like two children who’d uncover a chest of gold nuggets, we climbed back into the vehicle, munching our treasure all the way home.  The juice ran down our fingers and onto our wrist.  We laughed, trying to lap up every escaping drop.

That road trip was the beginning of what has become a sorrowful but surprisingly joyful adventure for our family.  The day before, I had learned that my husband’s diagnosis was “adult failure to thrive.”  In short, his body had moved from terminally ill into the dying process.  All of the family has come now to say good-bye to their father and grandfather.

He has suffered from dementia for about 15 years.  We became accustomed to his forgetful ways.  Yet, during these precious, holy days, he has slowly slipped closer to eternity.  This morning when I went into his room, I knew that he didn’t recognize me.  Because his aide was there, I didn’t ask him questions.  I left the house at 7am for my work and I didn’t return until 7pm.

After his caregiver had left, I tiptoed into his room and kissed him hello.  Again, the vacant, yet, confused and slightly frightened look stared at me.  I smiled and asked in a chipper voice, “You don’t know who I am, do you?”

The fear melted and he shook his head, “No.”

“I’m your wife of almost 50 years and you really should remember me,”  I said, laughing.

With his eyes closed, he returned my laughter with his own.

I continued to tease him, “I have pictures to prove that we are married.  We have three wonderful children and four amazing grandchildren.  Guess you don’t remember them either.”

He opened his eyes grinning with pleasure but he shook his head, ‘No.”

“You are an engineer, who worked for NASA.  You designed much of the piping for the liquid hydrogen and liquid oxygen systems.  You had five inventions.  You helped put the men on the moon and no one can take that away from you.  In short, you are a pretty amazing man.”  He smiled.

“Do you remember Jesus?”  I probed deeper.

Again, he smiled, but with a broader grin. “Oh, yes, I do,” he whispered to me.

“That’s the only person you need to remember,”  I said, taking his hand in mine.  He smiled, traveling back into his semi-conscious state.  When I went into his room about an hour later, he was still smiling.

On the afternoon we bought the strawberries before the fruit could go bad, I prepared several quarts of the berries to freeze.  They sit in my freezer at the top of the fruit section.  Each time I open the freezer they sit waiting for me, still red and inviting.

I’ll eat those berries while they are still frozen in a few days or a week or month from now.  I’ll taste the ripe goodness locked in by the cold.  I won’t eat them in one session but one berry each night.  I’ll make them last as long as I can and I’ll remember this lovely time.  But I’m waiting–waiting until this adventure is over and my husband has gone home to be with the Jesus he still remembers.