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WHAT’S YOUR EXCUSE?

Decorated Christmas Tree
Even something as simple as putting up the Christmas tree could be a great help for Alzhiemer’s caregivers.

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Originally posted 2011-12-10 05:37:08.

NOT ON MY WATCH

My adult children were relieved when they were told that Ken and I would, ultimately, with time, rest and therapy; recover physically following our automobile accident last February.  There were no guarantees, but the prognosis was good. While I remained in intensive care for a week, and then was transferred to our HMO facility, Ken was released from the hospital in five days. Weakened and changed by the accident and his stay, the volunteer wheeled him from the hospital to the waiting car while Debbie took photos of him each step of the way as he struggled from hospital care, to car, to walker and up our driveway.

“I don’t want those pictures all over Face Book,” instructed our son, Keith, who had stepped into the role of CEO for the family during my absence.  Needing to do what needed to be done, he outlined a course of duties, assignments and restrictions for each of our five grown children.  “Dad’s been through enough without having him look less than who he is, less of the man than who he was.  There is no need for the entire world to see him on the Internet as he looks right now.  My father deserves better.”

I doubt if it was the intent of Debbie to display Ken for everyone to see.  She knew her already disease-stricken father had received a double whammy with the accident piling more traumas on top of his already debilitating problems.  The photos were for family.

Not only is Keith a fixer of whatever is broken he is also a fiercely private person: kind, compassionate, sympathetic, and more – empathetic and beyond – as he often steps quietly out of his comfort zone to “lift up” his fellow man.  At the same time, don’t cross him, because he can draw a line in the sand which is not to be crossed or treaded upon.

He also has a motto, “Never put anything in writing unless you don’t care who sees it or reads it.” That goes for photos as well. I agree with him totally.  Many times those feathers – words, photos — which have been cast carelessly into the wind, may at times, manage to flutter back and “bite you in the butt.”

I read a lot about Alzheimer’s from many sources, always looking for how others are managing, new ways and encouragement on how to be a better caregiver – a better person — even though life becomes more and more difficult as the disease progresses.  I also read various blogs about many of the diseases under the Dementia Umbrella.  They all touch my heart, some deeper than others bringing tears to my eyes, especially those who are victims of Early-Onset Alzheimer’s:  Young people, some still in their 30s, who have a lifetime before them with growing families, goals to accomplish and careers to fulfill; their lives — never to reach full realization; their minds — never to reach full potential, and through it all I read of a devoted spouse, adult child or relative, any of whom is often the author of the work.

When I was younger, one of my neighbors called and asked if I could help with her husband.  Stan was in the last stages of cancer and she was caring for him at home.  Other than medical people helping with showers, Val was his sole caregiver except when she might need aid from a friend or neighbor.  “I just need some help turning him,” she explained.  I was glad to be of service.  I could see she was quite capable of caring for him by herself as his disease had ravaged his emaciated body to where nothing was left except skin and bones.  He greeted me, even managed to mumble, “Thank you,” as Val and I carefully shifted him from one side to the other.  Her work with him was such an act of love.   Watching them together, I marveled as she chattered in answer to his bits of labored conversation.  She continued fussing over him, with Stan thanking her profusely for doing for him those things which he could no longer do for himself.

Looking around I noticed the house was immaculate, as always.  I used to tell Ken that Val was so clean she even swept the dust from the dirt in the backyard.  Keeping it all up, she must have been exhausted, yet, never did I hear her complain or tell about some of the dreadfully unpleasant duties her care giving demanded.

Stan was her third husband – the third one she would bury – nursing all of them through their various ills until death led them away and Val was able to pick up the pieces and move on.  Even when she spoke of the first two men in her life and their illnesses, it was without complaint – and no details.  She never mentioned what it was that took each of them only that she was the caregiver.  While Ken and I were filled with admiration, we were much too young to be totally appreciative of her efforts, neither of us having experienced the overwhelming and extensive effort she had performed.  Val chose that those years of caring were to be her memories – unshared – unspoken.

No matter what the illness, there are aspects of caring for the infirmed which are, to say the least, extremely difficult – private – and, perhaps better left unsaid – unwritten.   That’s been my decision whenever I write anything about Ken and our shared journey through this disease; I always ask myself this question, “If I were the one who was ill, would I want him to share each and every facet of my failing health on his blog, with society and all of the neighbors?” My answer would be, “No.  Please — be discrete.”  Discretion is the word I keep in mind.

Someday, after it’s all over, and Ken has been laid to rest – the Lord willing as often the caregiver goes first — I want him remembered for who he was, not for what the monster AD has done to him. Long ago I decided that everything – every labor of this journey – every detail of caregiving — will not be posted on my watch.  As Keith has said, “My father deserves better.”  So does my husband.

Originally posted 2011-01-30 21:30:16.

THE DINNER ROLL RECIPE

“It’s time for us to move back to the Bay Area,” said my father.  “We need to live closer to you — not with you — but near you.”  At 85 he finally admitted to himself that my mother was slipping away and she would need more care than he could provide.  Not yet diagnosed as having Alzheimer’s disease, she was showing all of the signs.  I had noticed her failing as well, but the decision to leave their lovely home located between Sebastopol, California and Bodega Bay which boarders the gentle Pacific had to be theirs.

The little farm as the family lovingly titled my parent’s retirement home had been a gathering place for more than 20 years and tradition at Thanksgiving.   All of that time she and my father bought the bird from a local turkey farm while the rest of us brought the side dishes.  The one thing, however, that no one even ventured to duplicate were the dinner rolls straight from Mama’s oven.

Whether the recipe was her own, her mother’s or one clipped from a magazine we never knew.  What we did know was the roll recipe was tucked away in her black, loose-leaf binder among the other clippings and hand-written cooking treasurers collected through all the years of her married life.  My sisters and I never asked for the recipe because the rolls were Mama’s speciality.  Being a wonderful cook she prepared other specialities as well when there was an occasion or if she felt inspired, but when she was busy, food was plain and simple, “and better for you in the long run,” she assured us.  So it was that we grew up experiencing a few culinary delights as well as steamed potatoes still in their jackets and vegetables cooked in “waterless” cookware.

With their final decision to move absolutely firm, Ken and I looked, and found, an ideal house for them just a few blocks from us.  Four months later I drove the two-hour trip to begin packing with the family coming the following week for the big move.  Mama saved everything.  My job with the help of my niece Denise was not only packing, but also included sorting through some 60-plus years of accumulation.  Dad’s job was to keep those empty boxes coming, and Mama’s job was to see that we were all fed and happy.  After all, she was a wonderful cook.

As we sat down for dinner Denise and I looked at one another with the same thought, “What is thisssss?”  Tasting did not answer the question.  Too much spice, too much salt and too much of whatever else it was that she found in her food supply which made up the mystery dish.  My father, who usually wolfed down his meals in a matter of minutes, ate everything on his plate, but it was an obvious effort, and because he was hungry.   Denise and I dabbled with our food then went back to packing.  Mama, we agreed, had forgotten how to cook.  Following that first night one of us worked with her preparing dinner and I told my dad that he would have to help Mama in the kitchen once they moved into their new home.  Either that or he would have to get used to guess-what dinners.  I had known that Alzheimer’s was stealing away my mother’s thoughts and memories, but I hadn’t realized it was stripping away her skills as well.

When I packed the kitchen supplies, I placed all of her cookbooks in one box, sealed it up realizing that it would be unlikely she would ever use them again.  At the new home I placed the box on a shelf in the garage, planning to glean the best of her recipes and to browse through the black binder at a later date.

The later date didn’t come until after she was gone.  Picking up the dilapidated binder I thought about the aroma of her freshly baked rolls which had beckoned us to the dinner table on so many memorable occasions.  Page by page I searched, but to no avail.  There was no recipe for the rolls I remembered.  Instead of being tucked away in a book it was no doubt tucked away somewhere in the corner of her mind.

Even after  nearly two decades I find that every so often a thought races through my head, “I’ll call Mama and ask her about …..?”  But just as quickly reality follows; Mama isn’t here and a thousand little questions will never have answers.  Nor will I ever make rolls as delicious as the ones she made.

Originally posted 2009-06-04 06:23:00.

THE DISHWASHER

I recall my grandson, John, being the helpful boy he was, had surprised his mother by putting away all of the dishes in the dishwasher.  At six, he was so pleased with himself,  and she thanked him with a generous hug and kiss telling him how thoughtful he was and how much she appreciated him.  There was just a slight problem.  The dishes hadn’t been washed.  So when he had gone his merry way to play she washed every dish in the cabinet — dirty ones and clean ones alike.

When Ken is my husband he often wants to help in the kitchen.  A one-time Navy cook he had bragged for decades about his skills, but  during all of those boastful years Ken seldom used any of those skills in our kitchen.  However, when he retired I strongly suggested to him that cleaning the kitchen would be one of his homemaking  jobs saying, “If you’re retired, then so am I.”   I was pleasantly surprised to find he was totally accepting of his new job assignment and would often ask, “What can I do to help?”  And he began rekindling his old skills.

It seems, though, that time and circumstances do have  their way with us, making change a constant in our lives.   As his memory began to fade he could accomplish less and less in some areas, but was still a very good prep cook happily peeling vegetables, taking out the garbage and sweeping up the floor.  When even those skills diminished I found I would rather he didn’t do anything, but just as a wise mother doesn’t discourage the help of her young children, I didn’t want to hurt Ken’s feelings by telling him that he was actually in the way.  So, for the most part, when he is cooperative and not argumentative he can help.

Perhaps it’s because of those years when the kitchen was his responsibility that he has become obsessed with the sink and counter space.  When I bring out greens and other vegetables to make a salad, he puts them back in the refrigerator as soon as I turn my back, he also puts serving bowls out of sight, washes  greased cookie sheets while I’m mixing the batter and polishes the sink each time I rinse my hands.

If I wash a few pots and pans, leaving them to drain in the sink he wants them put away — right now — dripping wet.  More often than not our home and cooking area has become HIS house and HIS kitchen, wanting everything in its own place or out of sight — according to him.   Sometimes if he discovers dishes in the dishwasher he will empty it.  With the progression of Alzheimer’s, though, he can’t tell the difference between clean and dirty dishes even though I periodically sprinkle them with catsup believing that might identify them as needing to be washed.  One morning, however, I caught him as he opened the dishwasher and began to remove the dishes, catsup and all.

“They’re dirty,” I said.

“No they’re not,” he replied, apparently not seeing the red blotches.

“Yes,” I insisted.  They are dirty.  That’s why they’re in there.  This is the dishwasher and when it’s full, it will wash the dishes.  That’s it’s job.”

“Not necessarily,” he said in his arrogant tone, which is not that of Ken.

“We’re not going to argue about this,” I stated.  “The dishes are dirty.  Do not put them away until they are washed,” I concluded emphatically, closing the door, and suggesting that there might be a ball game on television.

I busied myself elsewhere and later that afternoon I noticed he had managed to empty the dishwasher in spite of me.   He mentioned how hard he had worked cleaning up the kitchen and putting everything away.  I sighed and thanked him for his effort.  Later, when he wasn’t looking, I filled the dishwasher to capacity with dishes from the cabinets and emptied all of the forks, knives and spoons from the drawers into the basket washing it all, just as my daughter had done with six-year-old John.

“Let’s see now,” I asked myself thoughtfully, ” is there another way?   How did we do the dishes way back when……?”    Oh yes:  fill the sink with hot soapy water, toss your helper a towel and say, “I’ll wash, you dry.”  And he does.

Originally posted 2009-05-21 06:42:17.

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