“Everyone went home.”  That’s one of my stock lies.  Depending on the time of day, Ken has pretty much programmed himself with certain questions, various fixations and anger moods.  First thing in the morning he comes from the bedroom yawning and asks, “Where is everybody?”  My answer is always, “They went to work.”  Then he wonders what day it is, and if it’s a weekday he agrees that, of course, they do need to be at work.  On the weekends, if he asks about the day, I tell him they are working overtime, or say it’s a weekday.

In the evening when he asks, “Where did they go?”  That’s when I tell him, “They all went home.”  I go further to explain that all of our children are grown and have families of their own and they don’t want to stay for dinner because dinner is waiting for them at their own homes.  “Oh,” he replies.  Often he asks about the little ones, assuming we have been baby sitting.  “Their parents came and picked them up.”  That, at times, annoys him because no one came in to say goodbye.

“I have people coming for dinner,” Ken insists.  In the beginning, I would make an effort to convince him that we were not having company only to have  him go into a heated debate about the guests he had invited and why wasn’t I making enough food.  I have learned to suggest that when they get here I’ll cook another dinner.  “Meanwhile,” I say, “I will be cooking for just the two of us.”  He is happy with that and soon forgets about the imaginary company.

Lies aren’t always about food, company or the whereabouts of people who aren’t here.  At times I lie to avoid a hurtful truth.  Ken’s mother was also an AD victim.  Ken, his sister, Loretta, and I conferred about her bladder cancer, and her growing dementia.  It was decided that following surgery and convalescence, their mother would be transferred to a full-time, partial-care facility.  A widow and alone, Rose had managed with Loretta close by, but as illness, both physical and mental, became a part of the mix, she needed more supervision that any of us could provide.

Surgery went well and Rose happily adjusted to her new living situation, but that glimmer and desire of home remained.  Loretta and I were visiting one day when Rose asked, “When do I get to go home?”  In great detail Loretta explained to her demented mother all about her illness, her incapacity to care for herself and that her home had been emptied and was rented.  Saying nothing, but with great sad eyes, Rose looked puzzled and hurt.  A whisper away, I quietly said, “Lor-ettttt-ta.” Glancing back at me she said, “I just want to be honest with her.   I mumbled, “Why?”  When Rose had asked me the same question, which she did each time we visited, I would tell her that as soon as her doctor said she was strong and capable enough to care for herself, she could go home.  I suppose, by a very big stretch, it wasn’t a lie, but it made her feel good, if only for a little while, and it was a more comforting answer than the awful truth.

The scriptures tell us, “and liars shall be cast out.”  In his Alzheimer’s world Ken will say, “I haven’t heard from my mother lately.”  He doesn’t accept the truth, so I tell him, “She and your father are on vacation in Colorado.”  I have become very quick with the answers.  For instance, I sewed the front pockets down on all of his jeans so he couldn’t walk around with both hands deep inside.  I knew if he fell he would be flat on his face.  Thrusting his hands downward while groping for the pockets of his altered jeans, I tell him that having no pockets in front is the latest style.  Flat-out lie!  At times I feel a tad of guilt for my constant lies, which come so easy in our conversations, but on second thought I could call my deceptions in dealing with Ken’s demented mind — fabrication.  Yes, that’s it.  All day long I fabricate, or better yet, perhaps I’m just speaking fiction.

Originally posted 2009-10-04 06:31:18.


“Is he ever Ken?’ asked Jayne.  “You know what I mean.  Is he ever the Ken you married.”

“Not really,” I answer, “but he comes close once in a while.  If he goes to bed at a decent hour, before 10, and gets a few hours of sleep before I come to bed he sometimes wakes up a little and is as close to Ken as he will ever be.  He’ll say things like, ‘Hi.  Coming to bed?’  I answer him to the affirmative, but with caution.  He could be Buddy or Mr. Hyde wanting me to leave his room.   I climb into bed and say to my husband, ‘By the way, I love you.’  He smiles and says, ‘I love you too.  Will you marry me?’  ‘We’re already married,’ I assure him.  ‘When did that happen?’ he questions.  ‘A long time ago,’ I reply asking for a kiss goodnight.  He is willing and I kiss him gently.  A real kiss.  Then he rolls over and says, ‘Goodnight.’  That’s probably as good as it gets,” I tell Jayne in answer to her question, “and it’s nice to be able to go to sleep with kind words and sweetness.”

As I lay in the dark I picture his mind and the tangled mass of nerves that cause him to be demented.  I wonder if during sleep the nerves relax a little, possibly becoming less tangled and perhaps some of the plaque covering his brain sluffs off leaving a clear, but temporary,  path for thought.   Awake I continue to think about solutions — even miracles — as my absolutely non-medical mind looks  for answers.

When my mother had Alzheimer’s I compared her with my father.  They were married nearly 70 years.  She was afflicted, he was not.  At that time they thought one might get the disease from cooking food in aluminum pots and pans.  Mama had a complete set of hammered club aluminum cookware which she had saved for faithfully until there was enough money for its purchase.  She cooked everything in those utensils, fried hamburgers on the club aluminum grill and flipped pancakes on Saturday mornings.  She had Alzheimer’s.  My father ate everything she cooked, but when he died at 90 his mind was as clear as a bell.   Nor do we three girls have signs of Alzheimer’s, but the jury is still out on that.

Then I wondered if it was water.  It seemed to me when I observed my mother’s consumption of water, she was well under what was suggested as daily water intake.    Often she would say, “Would you bring me a half glass of water.”   My sisters or I would comply.  Remembering those requests, I reasoned she wasn’t flushing her system properly.  My dad, on the other hand, drank lots of water.  Good theory, I thought to myself.  But when my uncle (my mom’s brother) died, also an Alzheimer’s victim, he wife mentioned to me that he drank water like no one she knew.  Bad theory.  We might even say, it didn’t hold water.  I suppose, though, that the pondering, the questioning, establishing theories, reading and wondering helps us, as caregivers, cope with this awesome task.  Who know, maybe one day someone will come up with a theory that ends the mystery.  We can only hope.

Originally posted 2009-02-13 05:59:26.


junk mail

Responding to donations for one cause resulted in a whole slew of more requests.



June 8, 2012 — There are times when I look back on Ken’s diagnosis and wonder if he went into immediate denial or if he just didn’t understand the full ramifications of Alzheimer’s.


I did write about Crohn’s a while back in “Okay, Give Me My Shot,” loosely defining it because it has been a major health issue with Ken for decades.  Among the indicators of the disease is pain. To eliminate the pain and the accompanying symptoms of Crohn’s required an extreme change in diet.  High protein, low residue: meat, potatoes and white bread.  “That’s all,” the doctor said. Continue reading

Originally posted 2012-06-09 04:50:06.


The Kindess of All Makes up For Christmas Grinch in Oakley, CA

The Kindess of Many Makes up For Christmas Grinch in Oakley, CA

Unfortunately, there are among us a lot of Grinches and Scrooges, and while we would like to believe they all reform at the end of a story, that just isn’t true.  Take, for instance, the good folks who live in Oakley, California, located in Contra Costa County which is part of the nine counties making up the greater San Francisco Bay Area.  For months the “Friends of Oakley,” a non-profit organization, who serve their fair city, had been collecting toys and food donations for those of the community who were down on their luck during these tough economic times; everything to be delivered just before Christmas.

The day after Thanksgiving, all was going very well until the committee arrived at the school where the growing supply of good wishes had been stored only to find that a Grinch had stolen everything.  The empty store room, without nary a can of food left to roll across the floor, told an obvious tale:  this Grinch, more than likely these Grinches, had no intention of returning their cache of goodies.

Of course, the crime was promptly reported to the police department, the City Council and the mayor.  Word of the robbery spread via TV, newspapers, social media, emails, texting and even phone calls.  Many local residents and many throughout the Bay Area wanted to help.  In addition, the “Friends” received word from a retired school teacher living in North Carolina that she too wanted to contribute.  Such outpouring of concern and generosity quickly erased the hanging cloud of gloom and despair.  However, the big question remained:  in less than a month could all the good intentions in the world replace the missing toys, blankets and non-perishable food items that were meant to help and bring a bit of joy to 800 children, 300 families and 100 seniors this Christmas season?

“The response was incredible,” said newly sworn Mayor Kevin Romick. “Wells Fargo Bank joined the effort with a $4,000. gift, Oakley Disposal added an another $2,000. and many other local businesses made like donations.  The weekend before Christmas additional food was contributed by The Food Bank of Contra Costa and Solano Counties.  While volunteers wrapped and packed, Santa’s helpers in the form of volunteer drivers with trucks checked their lists twice for delivery of two gift cartons for everyone in need.  “There are some wonderful people living among us,” concluded the mayor.  “Probably some are your neighbors”

Thinking about my adult children, including Mayor Romick, it warms my heart to know the apples didn’t fall far from the tree.  Over the years I have been aware of the many charities to which these adults who shared our life and home have contributed both with money and time, their constant support of worthy causes, and their individual efforts to bring comfort and peace to those  in need – you might say to be the answer to someone’s prayer.  And I remember many of Ken’s and my efforts to do the same. I am pleased with my family, all of whom continue to serve their fellow man and if he were able Ken would tell you so himself.  With Alzheimer’s his mind no longer registers the happenings in life, but I know that somewhere deep in his heart he feels the joy.

It is sad to acknowledge that there will always be unreformed Grinches and Scrooges living among us, but the good news is we have wonderful people as well — some of whom are my children – and some just might be your children, or your neighbors and no doubt you.   So, recalling the most famous and most reformed Mr. Scrooge of all time I’ll echo his Merry Christmas, and in the words of Tiny Tim, “God Bless Us, Every One!”

Originally posted 2011-12-24 05:48:57.

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