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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!”

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Decorated Christmas Tree

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

In my last writing, I touched on attitude from those who might not feel the “necessity” of being part of a loved one or a friend’s journey into and through the Alzheimer’s experience because they couldn’t deal with it emotionally.  My response was simple:  “It isn’t about you.”

However, I thought it might be good to share some thoughts from other people.  I did receive a few comments from those who read what I wrote, and I find it amazing that this “attitude” is so common out there, but for various reasons.  Attitude is often what might drive a wedge through a loving family splitting them apart, or a supportive attitude and effort can pull that family closer together.

I also read an article from The Alzheimer’s Reading Room by Bob DeMarco where he asked several questions as to how a caregiver might feel when confronted with someone near and dear having the disease.  His last question, which really wasn’t a question, went something like, “Your life in caring for someone with Alzheimer’s has remained the same and has been unaffected with no complications.”  The first word out of my mouth was, “Ha!”  I wondered if Bob meant it as a joke or it had slipped by him in error.  More than likely it was a tongue-in-cheek attention getter.  Trust me, it got my attention and my dander standing straight up.  How can anyone who even has a remote relationship with an AD victim remain unaffected?  Then I went on to read some of the comments, various blogs, and mused previous conversations I’ve had with people.  I marvel at how different we all can be given similar circumstances.  The following are some excuses heard by not only myself, but by friends and family members:

     1.  Fear:  Friends or even family members may have some kind of distorted, sub-conscious fear that the disease is catching.  They may also fear that the caregiver might ask them to help.

     2Jealousy:  From a long-ago conversation, “Mom and Dad appointed you to be in charge of their health care, so do it.”  With that kind of attitude, it looks as if Mom and Dad were right.

     3.  Distance:  “I wish we could be more helpful, but we live so far away.”  As a retired couple, Mr. and Mrs. Wishwecould take lots of vacations, and always stop by to visit the folks for a few days and make a big fuss over AD Dad and Mom.  At least, that’s a good thing.  Could they do more?  Certainly. The Wishwecoulds need to extend their vacation for several days and suggest that the caregivers plan a respite during that time while they take on the responsibility of the folks for a few days – or more.  And, the caregivers need to assert themselves and make the suggestion if the offer isn’t forthcoming.

     4.  But I work:  Don’t we all, it’s just that many caregivers don’t get paid.  Even people who work have holidays and weekends.  They might even have some personal time coming, and then there is after work time as well.  I’m sure some kind of relief and/or help schedule could be worked out.  Caregiving isn’t an easy time for anyone.

     5.  But I do help: “Didn’t I bring you up to speed with the latest report on AD research?  Have I not become an expert on the disease?  Just ask me anything.  What?  You mean you want me to help clean him up?  Change his diaper?  Stay here with him while you go to the bank and do a few errands?  No. I’ll do my thing and you do yours.  Did I tell you what I just learned about AD on the internet?”

     6.  But I’ll give you my opinion:  “I really think you should put him in a home.  That’s where he belongs.  I don’t believe you know what you’re doing, and he could be a danger to himself and others.  After all, what experience have you had?  The neighbors think so too.”

     7.  Too educated to help:   “The adult children are either in higher education or have graduated, often appearing to be ‘above it all’ when it comes to actual help.  If they do anything at all, they become short-tempered with me and give me eye rolls at how I’m handling things at home.”

     8.  But what can I do?  When AD is diagnosed, there isn’t much to do, but as time goes on there are any number of things people can do to help.  Several years ago I was doing fine, and then my granddaughter, Katie, asked what she could do for me.  I said, truthfully, that there wasn’t much I needed.  Then she asked if she could help me put up the Christmas tree.  “That would be wonderful,” was my response.  And she did.  Several days after the holiday she called to ask if she could help take it down.  She did that too.  For those wondering what you can do, just offering to do some little thing might be the biggest help of all.

     9.  It’s all about me:  Those remarks I made in the last writing also apply, but they’ve been pretty much covered.  “It hurts me too much to see loved ones ill or in the hospital.  It’s too depressing.  I just can’t deal with it.”

    10.  I’m sorry, I just didn’t realize.  Actually, that’s not a cop-out.  Some people really don’t see the whole picture, so it is up to the caregiver to speak out.  Get beyond being hurt because you’re not getting the help you need.  Sometimes we, as caregivers, just have to humble ourselves and ask.  Furthermore, and after all is said and done, it’s important to be forgiving to those who just don’t “get it.”

I received a beautiful and positive comment on The Rusting Years from Chessa who responded by telling me that she was so glad she was there for her grandmother and now, after grandma has passed, she was able to write, “I often thank the Lord for no regrets of ‘should’ve’s’ ‘could’ve’s’….. only peace in knowing ‘we did.’”

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Like an old and abandoned truck, some seniors feel they are in their rusting years.

“The Golden Years my Aunt Tillie,” said Frances as we talked about these last few rungs on life’s ladder.  “They’re more like the rusting years.”  “Well put,” I had agreed as she was in the midst of recovering from a bad face-on-the-ground fall that knocked her into the next county breaking her jaw which had to be wired shut while it healed. Like a flash of lightning Frances could zap out words faster than Quick-draw McGraw could whip out his trusty six-shooters.  Her comments could be loving, kind, happy, knee-slapping funny, profound, glib, and, at times, a bit stinging. Did the wired jaw stop her conversations or even slow her quick wit?  Never.  As long as her tongue and mind worked in unison the tumbling words slid out between her teeth and lips with never a pause.

We had become good-enough friends that every so often I was allowed to say, “Oh Frances…….” when a remark might be a little too biting, too stinging or sarcastic, but most of the time I laughed.  She was very funny.

Frances was a widow, and had been for more than 15 years and even with Ken’s AD she invited us for dinner, and I, in turn, prepared dinners for her.  Ken had been Cub Master and she was a Den Mother when all of our boys were just boys.  The two hit it off famously and became the best of friends with my utmost approval.  Frances always puckered up and gave Ken a quick peck on the lips whenever they met.  Following their amicable kiss Frances would say, “How! Great White Father,” holding her hand up with an Indian greeting in reference to a long-ago Pack Night theme from a sweet, innocent time when we were all young.  Then one day we were no longer young and she was suddenly gone.  I miss my friend.

I’ve noticed that a lot lately; our friends keep dying, or they move away.  “Get some younger friends,” advised another dear friend Sofia who, with her husband Don, have moved away, but not too far, just inconveniently far.

Making “couple friends” is difficult though when your spouse has a debilitating terminal illness.  So I mostly hang out with women who have lost their husbands.  They are widows and I am sort of a widow, but I’m not.  Nevertheless, there is an inescapable loneliness in being the one left behind no matter what your title.  Unfortunately, that feeling of being alone can never be filled by friends or family, even though the need for friends and family remains paramount to the well being and happiness of the remaining individual.

I thought about this the other day when I visited Eva.  She and her husband were the entertainers from Hawaii who I have mentioned in other writings.  He’s been gone for more years than I remember, and now with her AD and circumstances dictating the remainder of her life she lives in a very nice full-care facility.  Walking through the halls I was aware of so many lonely souls sitting in their wheelchairs outside of their rooms, and I wonder who they are and about those who still share their lives.  Sofia’s husband Don has a phrase that I often think about when I visit people with full dependency on a nursing home:  “A mother can care for seven children, but seven children can’t seem to take care of one mother.”  It’s only a phrase, but following that first capital letter and the ending period, there’s a lot of truth in those few words.

I found Eva in front of her room matching the forlorn description of the others. Tiny little thing sitting there by herself, looking lost, lonely and pitiful, and I couldn’t help but feel a stab of melancholy as she scanned the area – searching – waiting.  “Let’s go for a ride,” I suggested, securing the foot rest, and then wheeling her through an open door.  It was pleasantly warm outside, so that’s where we went.  I parked her chair in the shade with ribbons of filtered sun teasing the shadowed greenery.  “Where……,” she stammered.  “What is it?” I coaxed.  “Where is my family?” she asked looking puzzled about her surroundings.  That’s the trouble with AD; the answer has been given, but the question keeps rising to the surface.  “All of your children except for Matthew live very far away,” I reminded her.  “They come when they can, but I know Matthew is here to see you almost every day.  I’m sure he’ll come later this afternoon.”  I think of Eva remembering how she was:  beautiful and vivacious in her brightly colored and fitted muumuus, and so filled with charm as she strummed her ukulele and sang melodies from the Islands and pop tunes of the day.   Now I feel overwhelmingly sad that the life she knew, her home and all that was familiar are gone.

Rather than making small talk I sing to Eva.  To those who know me really well my singing is a joke, but I’m not making conversation, nor do I, for one minute, think I’m the entertainment du jour.  I’m communicating with her spirit.  This I believe.  Eva relates to music so I softly sing some of her favorite hymns and songs I recall from her entertaining days.  She manages to join in with a few words and she smiles, and for that little while she appears to be content.

At 90 most of her friends are gone, others are not capable of travel, but I do believe there is a self-imposed detachment that happens with some friendships – and even some family members concerning these last years. I know with certainty that many people claim they don’t have the capability of coping with seeing their friend or loved one in a care facility, hospital, or even visiting the infirmed or elderly in their home; “Too depressing.  I just can’t deal with it.  It hurts me too much,” I’ve heard people say.  I understand because my father was that way.  Yet, I want to scold and remind them, “This isn’t about you.  It’s about Eva, Uncle John, Rose, grandpa, your sister, brother, your father, or Frances’ Aunt Tillie.” You need to strive to bring some joy and a little companionship into that person’s life.  Forget about yourself.  It’s called love and compassionate service, and the more you participate in reaching out to others, the more you grow as a person.  Pretty soon, you’ll even catch the spirit and you’ll be surprised at how good you will feel when bringing some brightness into another’s life.  I could say all this, but I won’t.  It isn’t my place, but if Frances were here, she would.  She might also tell them a few funny stories about the rusting years.

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football game

Though gratitude may not have to do with football, to this caregiver it makes Thanksgiving, the superbowl of gratitude.

I never think of November without conjuring up thoughts of Thanksgiving which I have come to refer to as the Super Bowl of gratitude. There are a few grouches out there who believe the holiday is all a bother. No doubt the naysayers are imagining some corporate CEO greedily scooping up profits from the turkey market. Even if that were true the holiday is and can be so much more.

Squeezed in between Halloween (which seems to be getting bigger and better every year) and Christmas, Thanksgiving looks to be the forgotten holiday. No one appears to give it much thought except school children with their Pilgrim collages and hand-traced-paper-plate birds, and supermarkets whose windows are adorned with cornucopias, autumn leaves and fan-tailed turkeys.

So I find that before the family gathers around the table on the 4th Thursday of this month I begin early to count my blessings. Actually, I do most every day when I offer my morning prayer of gratitude, but sometimes it takes a reminder to appreciate things we take for granted, and don’t always think of as blessings – only bills.

I’m the first one to grumble about the increases in our utility costs, especially with the tight economy and our very tight budget, but what if gas and electricity weren’t available. The other morning, just as my day was getting started, the electricity went off.  It’s happened before, many times, and it’s always such a surprise. My immediate reaction – always — is what’s wrong with the lights? Automatically, I flipped a few switches. No electricity. I knew that already. There is something about a power failure that announces exactly what it is when it happens: the power fails. Perhaps it’s the suddenness followed by a brief, yet eerie silence as everything stops that momentarily baffles our senses.

Outside, there was plenty of light, but neither of our bathrooms has a window. Question: What shall I do until the power returns? Answer: I’ll prepare breakfast. Wrong, the stove is electric as is the microwave. When Ben gets here we can get Ken started on his day. No we can’t. The bathrooms are dark. Check my email, vacuum the rugs, wash/dry some clothes, or mend some of Ken’s things waiting for me on the sewing machine. Can’t do any of those catch-up chores, there is no electricity. Instead I made my bed, and before Ben arrived the power was back on. I went about the day immediately dismissing my half hour of inconvenience. When in reality, utilities, even though we must pay for them are blessings taken so for granted.

The next day the wall furnace, in the family room, where Ken “lives” (eats, sleeps and sits) stopped working. “When troubleshooting a furnace,” someone had told me, buy a new thermostat.”  I did. “Who told you that?” asked the servicewoman from PG&E as she sat cross-legged in front of my ancient wall heater. I gave her a “duh” answer to which she replied, “The first thing you do is call PG&E.” More often than not their house call can get the heat up and running, or they can tell you what’s wrong but they can’t fix it as the problem is beyond their service parameters. And they do this as a free service. She even installed a new thermocouple to match my new thermostat. “Don’t get a new heater,” she advised, “It’s a valve, and you need to get a good heater/plumbing person.”

The PG&E service woman who came and the people in the office with whom I spoke about the problem were incredibly helpful. They all got a “5” on the follow-up phone survey and I am so grateful for their help.

“Mason can fix it,” said a sweet young friend, Tara, when I mentioned my problem. “I’ll have him call you when he gets home.”

So that’s where we are this week in life’s comedy of ups and downs, struggles and solutions, and I am grateful for the kindness, the advice, the help and the general goodness of people, and to Mason who put the heater back in A-1 condition. Grateful for my comfort-filled home; certainly an understatement. Today’s homes are filled with luxuries beyond measure. What a marvel our lives and conveniences would be to our long-ago ancestors: running water in the house – hot and cold – heat on a chilly day, sanitation, lights to take away the darkness, a stove to cook our meals and a big white box to keep our food cold and fresh.

Setting aside the wonders of our modern world I can’t forget so many wonderful people who will and do step forward to help. I could go on, but I won’t. I have to save some thoughts for Super Bowl Gratitude Turkey Day when I will share my appreciation and feelings of love with those I am passionately thankful for: my family.  Ken and I are truly blessed.

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Halloween pumpkins

Carved pumpkins a sure sign of Halloween

I have often said the bonus part of being married to Ken is that he was a fun date. Not only was he a fun date before marriage he continued to be a fun date after marriage, but then many of our friends remained okay dates after marriage until the tube took over, turning them into the well-known couch potato. The difference between Ken, who did watch his share of ball games, and our friends was that he continued to be a fun date up until AD became a third wheel in our lives.

Our early neighborhood was mostly made up of young couples with small children, and all but a few budgets were pinched tighter than a size eight foot in a six shoe. Consequently, nights out on the town, or even a movie, were few and far between. However, to keep our social appetites fed, kids in tow, we entertained one another at our various homes taking turns hosting: we bar-b-cued, planned picnics in the parks, or at the beach, and enjoyed Sunday summer band concerts by our city’s Municipal Band – all without spending any money. In addition, a couple of nights a month the neighbors got together for a game of penny-ante with no one going home richer than he came. It was for fun not fortune as all of the winnings went into a kitty until there were enough accumulated funds for everyone’s dinner, plus a tip, which happened every year or so.

And there were parties and celebrations according to the calendar, but perhaps none so outlandish and memorable than Halloween, with costumes required. The 31st, of course, was kids’ night so the adult party was usually held on Friday or Saturday night before Trick Or Treat, but not every year. For those less willing than Ken to dress up as someone-something else was much too much to ask of some husbands on even a yearly basis.

Prior to our just-across-the-street friends Fred and Phyllis adding a family room, all parties were held in the host’s garage. Once we found their new room to be a warm and cozy place without a draft their home became the gathering place during the colder fall and winter months.

So it was that Phil donned in black shorts, black shirt, a cowboy hat and toy six shooters hanging from her hips became a female Paladin (Have Gun Will Travel, a popular TV series at the time). Laughing, she opened the door to let in the party revelers. Fred put on two arm bands, a bow tie and took his place behind his bar as the in-house bartender, which was the costume for many of the men. Ken wasn’t much different that first year matching my Roaring 20s flapper dress with gangster-looking attire, including arm bands.

Other years, and good sport that he was, he agreed twice to wear the other half of Raggedy Anne: Andy with a sailor hat and sprouting red yarn hair. Our faces matched with cherry-circled cheeks, smiling mouths and exaggerated eyes. We wore it to Fred and Phil’s second party and a few years later our duo costumes appeared at other events. There were times when I couldn’t believe he was still such a fun guy and so willing to throw caution to the wind and be just plain silly.

Several years later we had occasion to attend a fund-raiser for a local community service organization. I made Ken a white sports coat out of a piece of left-over polyester knit from years gone by, painted a black mustache on his upper lip and handed him a baton. As Xavier Cugat, he matched my Carman Miranda outfit topped off with a turban headpiece filled with an assortment of fake fruit, including a cluster of purple plastic grapes. We were a hit with friends, but didn’t win the grand prize – not even runner up – which was all right. It was a good time because I had a special evening out with my fun-date husband. I sure miss him.

Even as Ken succumbed to Alzheimer’s, I continued to decorate for the holiday, and the second year of Ken’s illness he remembered about the little ones coming for Trick or Treat. Together we put out decorations making our house look spooky without being scary. Every morning, though, I would find the pumpkins, scarecrows and the friendly, smiling ghosts on the kitchen table. More of a morning person than I wanted to be, Ken busied himself getting the house in order while I slept. “Why did you bring in all of the decorations,” I asked him. “Halloween is over,” he replied. “Let’s put this stuff away.” Explaining that the holiday wouldn’t be over for two more weeks, I asked him if he wanted to help me put the things outside. “Of course I’ll help,” he said, ready and willing to have it all in place when the costumed children came for candy.

We went through the same routine every morning until November 1, when I agreed that we could put Halloween away for another year. It would have been easier for me to just give in the first time he brought the whole array into the kitchen. But I wanted our life to be as normal as possible even if it meant doing the same job over and over, and for several years it worked.

This year in front of our house there is a seven foot happy-faced ghost – possibly a distant cousin to Casper — hovering in the midst of our juniper bushes, surrounded by candy corn lights and spider webs. Ken no longer brings in the decorations during the early morning hours. Sleeping in a hospital bed with full rails his morning activity is limited, as is his walking ability.  He isn’t even aware that Halloween is fast approaching. Actually, I doubt he notices what’s outside, much less the passing of days, one being much the same as the last. Neither is he aware of the leaves turning gold and the hint of another year soon to pass. Alzheimer’s, like a thief in the night or a mysterious, ghostly intruder has stolen away my fun date, and the demon disease didn’t even ask, “Trick or Treat?”

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home library with books

Cleaning out the study of a loved one with Alzheimer's is just another difficult task for caregivers.

Today I started cleaning the office.  While it has a corner for my computer, it has always been Ken’s room – his den – inherited when the last of our boys left home.  It’s filled (as I have mentioned before) with his things: collections by the score, memorabilia from his youth, school, Navy days and of course his Marathon and fun run awards.  And books; we can’t forget the books: college books, history books, WWII books, a few novels, lots of Navy books, and binders filled to overflowing with what was important to him.  They all seem to look down upon me as I work, perhaps asking, “What now?”

Alzheimer’s is such a perplexing disease.  Our son Kenney dropped by to say hello this afternoon.  Reaching out to shake his father’s hand, Ken didn’t even look at him, but said, “No.” I tried to get his attention so he would at least glance up and smile at his son, but he didn’t.  “He looks good,” said Kenney.  And he does.  Other than that disconnected gaze often found in their eyes AD patients look very good, and normal.  So normal in fact that as I began cleaning the thought raced through my mind, “What if he wakes up tomorrow and the AD is gone.”  What if he came into the office remembering everything and asked what I had done with his engineering books, his drafting and building books, his Architectural Graphic Standards?  What would I say?  I know it’s never happened: a return from the bottomless pit of Alzheimer’s, nor do I believe it will happen, at least not in our lifetime.  Nevertheless, I sometimes find myself wondering “what if?”

Is that the reason I’ve delayed for so long to sort through a lifetime of collections and dispose of what will never be used again – even some personal items — at least not by Ken, and then asking, “What can be used by someone else?” Questions we mull over and over when downsizing. I glanced at some of the publication dates knowing full well the books were obsolete, and even if he were still Ken, most likely they would never be opened much less read.  Even he would have to admit they were outdated.  But they were his and he liked seeing them on the shelf – they were part of him – who he was and what he did.  The drafting books?  Even I know drafting is all done with computers – CADs as they are called – computer-aided drawings.  So it was almost with force that I persevered and sorted out that one section of books – with more to happen at a later date.

My friend, Bob, who had visited the earlier part of the year as he celebrated the life of his deceased wife Julie with all who knew her, called to say that he was home and his journey was complete. We talked about all of these chores that needed our attention, and Bob said that his next goal was to simplify his life.   He planned on sorting his books; technical books from his past, just like Ken, which he had always planned to review or read again, but now he needed to be honest with himself knowing that he never would.  So he planned to take them all to a place where they would be shredded and sent on to be recycled.

In our area of California we have a recycling program, and I knew that if I put the books into the recycling bin, they would be shredded and made into new paper – or whatever.  So into the bin went Ken’s tech books.  A scene from an ancient movie popped into my mind as they clattered to the bottom.  As a youth I watched the screen in a darkened theater as countless books were dumped into a burning bin because Hitler in his madness had ordered obliteration of a good part of the past in his march to world domination, and books held vast treasures of knowledge and history. Perhaps that’s why I’ve always loved books and felt a desire to protect them — treating them with great respect — wanting them to be there for future generations.  Now I was sending some of them away for destruction.  Even though I know it’s really all right and recycling is for a good purpose I felt a little guilty, consoling myself that a modern world has no use for obsolescence.

Ken loved books as well.  I suppose that’s why he had so many, but Bob is right about simplifying. I need to repeat that word over and over as I continue sorting through Ken’s and my lifetime of stuff.  The one thing I have found is that beginning is the hardest part, and once started I know with certainty that Ken isn’t going to wake up in the morning and ask what I had done with his engineering books. Alzheimer’s never pardons their prisoners.

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If anything, I would say that Boy Scout Mark had an extraordinary spurt of character growth at the tender age of 12.  Not only had he learned to cope with some of life’s heavy loads through what had been fun and games for the older scouts, he would also receive insight into another of his character traits a few weeks after the big hike.  While being a pre-teen at 12 can be a stepping stone into growing up, age doesn’t really matter as long as those valuable lessons learned are incorporated into one’s life.

Mark had already learned that if you remove the excess rocks – things you don’t really need — from your pack – your life — the load is lighter, and he cheerfully applied what he had learned to the remainder of the 50-miler.  It wasn’t as if Scoutmaster Ken hadn’t been aware of the shenanigans pulled off by the older boys; what he had been impressed with was that Mark didn’t complain. He also noticed the camaraderie that developed among the multi-aged troop during the seven days in the mountains where they recognized that the competition was not among one another, but between all of them and the challenge of the wilderness.

Mark continued to write:  “We learned about trees, poison oak, and edible and non-edible plants along the trail.  We crossed a glacier, and ate food with a little dirt; we learned respect for nature, which was all around us, and we learned to respect each other, and of course, to always be prepared.  It was seven days filled with learning, but it was what happened after the trip that changed my life forever.”

Ken always liked to give each boy the recognition he deserved at the Courts of Honor which were conducted for not only the young men, but for friends and families.  The Court was always well attended, and after the 50-miler the room soon filled with eager scouts and proud parents.  One by one the honor and merit badges were awarded, including a special 50-miler remembrance in the shape of a hiking boot.  “But I had not received my award,” continued Mark, realizing that all of the awards had been handed out.  “Then my Scoutmaster called me to the front as he had all the other boys. ‘I want you to know,’ Scoutmaster Romick stated, ‘that in all my years of scouting I have never seen a new scout like Mark.  He never complained, nor did he give up, not once did he quit on the entire trip.   He is not a quitter nor is he a complainer.  I am amazed and impressed.’  He then handed me my award and patted me on the back.”  Applause filled the room.  Basking in his moment of glory Mark later declared, “I believe I grew 12 feet tall that evening.

“That statement of 30 seconds, and the following accolades, changed my character and my life forever.  An adult had recognized a positive trait in me, told me about it and I believed it!”

For Mark it was a year of epiphany, discovering a part of his self, part of who he was which provided a guideline to the man he wanted to become.  With that inner knowledge he established a creed of determination by which he lived, and he has continued to do so all of his life.  Now, a grown man with a family of his own, Mark still recalls that evening with Ken, and wrote, “Even now as I think of my Scoutmaster I thank God for that man who showed me the way.” 

When I read Mark’s words I am in awe of my husband who was a very likable, but ordinary man, yet he was able to reach through that invisible armor of youth, see the boy’s potential and impact him with self-motivation and power.  I am humbled at Mark’s accolades for Ken.  But even more I am inspired by Mark’s every-day use of his own established creed, which I’m striving to make my own.

As the “boss” caregiver for Ken with his Alzheimer’s there are times when I would like to quit and times when I am tempted to complain.  Actually, I know that neither is an option.  I’m not going to quit, and I have found it doesn’t do much good to complain; besides few want to listen.  Of course, we are allowed to vent and to share our sorrows and woes with friends who have fought the battle, and with my wonderful internet friends who read my blog and share their stories about their ups and downs, their joys and sorrows while living with AD.  They provide (and I hope I do as well) the soft shoulder to cry on, and with them I can vent – knowing that venting is good.  Even the best of machines needs a vent.   But I’ll try not to complain or whine about those things which cannot be changed, and I’ll remember the wisdom of a 12-year-old boy who grew to be 12 feet tall in 30 seconds because of Ken.

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Lincoln logs

We all enter the world as little tiny people — babies; and right from the near beginning we have reached out with eager little hands for activity spurred on by our insatiable curiosity: something to examine – to touch, to taste, to feel — a challenge to stimulate our brain, to satisfy the inquisitiveness of our growing bodies and minds.  Whether it’s a bevy of plastic birds clipped to the crib, a zoo of stuffed animals to play with or a bridge to build, man has thrived on activity whether it be play or work.

When Ken and I were fairly new grandparents, our daughter left her two sons, John and Peter, with us for the evening.  “What can we do?” was the immediate question.  A closet still filled, at the time, with puzzles, coloring books, board games, cars, trucks and other toys from their younger uncle’s youthful days was the answer. “Here you go,” I said, handing one of them a bag of Lincoln Logs for starters.

Dumping the contents on the floor, the two boys began laying logs in various directions.  With Lincoln logs, though, there is an interconnecting pattern which holds the cabin together.  I helped them fit a few of the pieces and told them they could finish.  After struggling, and having their building fall apart, John said to his grandfather, sitting nearby, “Grandpa, help us build this cabin.”  Grandpa’s interest was more centered on the evening news and tactfully declined.  “Please, help us.  Please, Grandpa, please, please, please.”  With enough intense coaxing, Grandpa reluctantly agreed and in no time the cabin was finished.

With proud satisfaction the two boys tore down and rebuilt the cabin a few more times, soliciting their grandfather’s help, before asking to play with something else.  “But first you have to pick up all the Lincoln logs and put them back in the bag,” I instructed.  “Ahhhh,” was the duet reply.  “Come on,” I insisted, “you played with them and now you have to put them away.”  “Okaaaaayyyyy, but Grandpa played too so he has to help.  Even if the Lincoln logs didn’t hold their attention all evening, their curiosity led them to many new adventures coming from the game closet with instructions, “Play and put away.”

At the other end of the spectrum, activity still remains an important factor on a daily basis, including the lives of those with afflictions found under the Dementia Umbrella. Boredom isn’t good at any age. However, Ken’s level of interest is diminished to almost zero as AD increases in severity; with drive and enthusiasm nonexistent.

My friend Darline’s AD is at mild cognitive loss.  She is fortunate to live with her daughter and her family, and with Darline as Top-Totem on the Totem Pole, there are four generations living under one roof.  On Mondays and Fridays Darline spends several hours at Adult Day Care while her daughter does catch-up with errands, her own doctor’s appointments, and other family obligations. Although Darline tells me she enjoys tuning in on family conversations about all of the activities and goings-on in the busy household, going to day care, where she has made a few new friends, gives her a break as well.  She also takes part in simple activities.

I believe Ken and I missed the opportunity for day care during his Alzheimer’s journey.  Up until last February, we went everywhere, and did just about everything together.  If we visited a friend, which was often at his request, he always needed to be assured that I wasn’t going to leave him.  Not even a consideration, but when I thought day care might be good for him, I also wondered if he would be willing to stay without me.   As the past year has been filled with readjustment and recuperation, he is pretty much content to be at home among what is familiar with his interests very limited.

Yet, his caregivers and I wonder how to increase his activity level.  A true sports fan at one time, television of any sort holds no interest.  Having been an out-of-doors kind of guy, and as the weather warms, Ken likes being outside.  Weather permitting, he is content with a very short walk or ride in the wheelchair, we can do that and then sit on the front porch, which is something he has always enjoyed.

He likes looking at picture books, photo albums (recognizing no one), rustling through the newspaper very briefly having lost most of his reading skills, and walking around the house to see what’s going on in each room. If Ken sees a stack of letters or papers on my desk, he’s interested.  Quickly, I divert his attention to something else and scurry him from the room.  I would like to give him all the junk mail to carry around and hide in books, but that adds too much confusion to my life. Overall, though, his span of interest is much like that of a very young child: short.

Reading one of the numerous blogs about AD activity, one caregiver reminded us not to overwhelm our patient with “too much.”  She had offered a coloring opportunity to her mother only to have mom just sit and stare at the crayons and paper.  Eventually she removed all but one red crayon.  Success!  Apparently, there were too many objects from which to choose, so she chose nothing.  With only one, she went right to work.  Good ideas need to be explored.

With one crayon and one page to color, I placed the project on a small, narrow table for Ken to ponder.  With another page and another crayon I pulled up a chair and sat across from him and began coloring my picture.  “Wouldn’t you like to color your page?” I asked, handing him a crayon.  He looked at the crayon and decided the bright color might be something to eat.  “No, no,” I cried, taking back the crayon.  Briefly, I continued with my page making an effort to attract his attention to my activity.  He spoke in disconnected sentences looking at me as if I wasn’t there.  There was no way he wanted to color.  At other times Ben has offered him a pencil and paper encouraging him to write his name.  All to no avail — some activities work while others don’t.

I tried a puzzle with Ken, but it held no interest although there were only five pieces.  It was a Spiderman puzzle and perhaps it was the subject matter he didn’t understand.   Even in its absolute simplicity and with my help he walked away.  I’ll try again – presenting a more simplified pattern with which he may relate.  What is important, however, is that we make the effort.  Keep trying, but keep it simple.

Our game closet has changed since we were new grandparents, and John and Peter are grown men with young ones of their own. The puzzles and games, even the Lincoln Logs, are gone with a few replacements added to keep the new generation entertained.  One of the zipper-closed-handy-handled-see-through plastic containers is filled to the absolute brim with colorful snap-on plastic blocks.  Wondering one day if “building” something might nudge at Ken’s engineering past Ben brought them out.  Not as complicated as Lincoln Logs, he began snapping them together, but before long his interest waned.  A colorful wall and the remaining scattered blocks were left on the table while he leaned back in his chair and took a short nap. Yet, each time they are introduced, he is interested.

Right now, it’s time to put everything away for another day.  Too bad Peter and John don’t live close by.  Perhaps it might be fun to help their grandfather build something, and when the project was finished they could help Grandpa put away the blocks.  In that imagined scenario it would be no more than right for them to help pick up.  After all, they played too.

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My sisters and I have unusual birthdates.  Not because 2, 6 and 9 are unusual, it’s that all three numbers are in March, and had I not been born in a leap year, the day of my birth would have fallen on March 3 instead of March 2.  That one day would have made the three of us three years, three days apart.  Even without me messing up the numbers by arriving a day early, the closeness of the dates is still rather unusual.

Consequently, my middle sister, Janet, and I often shared a party:  a few of her friends and a few of mine.  This was acceptable until we outgrew parties with little friends, “Pin The Tail On The Donkey,” and the need for a party.  But do we ever outgrow that need for a day of celebration and recognition for our arrival on planet Earth?  Thinking about it in that manner, birth is really a very big deal, as is its yearly anniversary.

The first year of our marriage, Ken prepared a special dinner for my birthday.  As a former Navy cook, he liked to cook and had a lot of experience, serving me an entree of stuffed pork chops with complemenary side dishes.  What the side dishes were I don’t recall, but I will always remember the delicious pork chops.

Our old movie  camera and 35mm snapshots recorded the Kodak moments of our children’s parties with the neighborhood kids as guests.  All of them dressed in their Sunday finery, arriving through the side gate to celebrate each gala in the back yard where spilled drinks, ice cream and cake could be washed away with the garden hose.

Then as the old film commercial crooned, “Turn around, turn around…..” ending in something like “…with babes of their own.”  In agreement, it seemed that as quickly as our babies came into our lives, all of them grew up into adults and now have families — “babes of their own,” but the birthday parties continue, the family having extended into four generations.

Our daughter, Julie, entertainer extraordinaire, with Ken’s input and help, took it upon herself to host my birthday celebrations with lovely dinner parties at her home.  When that didn’t happen we went our for dinner; birthdays being something to place in a fond memory bank.

This year, my birthday was two weeks after the accident and was spent in the hospital.  Family came for a visit as did friends.  One of my younger friends, Christine and her husband John — a beautiful purple orchid in hand to mark the occasion — assured me that my neck brace would take away any signs of a double chin, or chins.  Of course, she lied, but I loved her for it.

“We’ll have a bar-b-cue at the ranch when you’re better,” promised Keith.  “My birthday is in May,” added our friend Don.  “We can celebrate together when the weather is good.”  “That will be something for me to look forward to,” I replied.  I needed that — a  happy time to think about beyond the neck brace, broken ribs and bruises.  So for the first time in my life, and with warm weather prevailing I celebrated my winter March 2, birthday in late spring.

In all the years of our marriage, there has always been a party for Ken.  June 10, is his birthday, or as some purest say, “the anniversary of his birthday.”  Some parties were smaller than others, but the important people were always there:  our family.  Other years, especially when time ticked off another decade, we had “grand” parties inviting lots of friends, as well as family.  Some were surprise parties, others were not.  In any event, he was definitely “the birthday boy,” finding joy in the celebration.

“Are you going to have a party for Ken’s birthday,” asked Ben, Ken’s caregiver of four months.  For a moment I was left without an answer.  Ken no longer knew “up from down,” nor did June 10, have any meaning for him.  Furthermore, he no longer had “wants” and all of his needs were met.  “A little party,” I answered, seeing that Ben didn’t understand my lack of enthusiasm.

Ben brought a party bag with cookies inside when he came to work on June 10, and I gave Ken a card and more cookies.  Our children called or dropped by.  If  it was convenient and the phone was close he would speak to them.  If he had to get up to answer, he didn’t bother, saying, “No.  Not now.”  They understood.

At dinner we sang “Happy Birthday,” presented him with a flaming candle stuck in a scoop of ice cream and cookies, and presents.  “Blow out the candle,” we coaxed.  “You blow it out,” Ken grumbled, not interested in the silliness of the exercise.  If birthday wishes were meaningful to him, it was hard to tell.  He opened the cards, read them aloud and tossed them aside. Quickly forgotten, he ate his ice cream and cookies.  Birthdays had lost their charm and  meaning.  Like all of the other pleasurable things in life, Alzheimer’s had taken away that last bit of joy.

However, in the midst of being sad about memory lost, I remembered a few lines from one of my favorite poems:   “Intimations of Immortality” by Wordsworth: “Our birth is but a sleep and a forgetting, the soul that rises with us, our life star, hath had elsewhere it’s setting, and cometh from afar…………”  Believing we have always been “us” — individual spirit children of God — living before in a pre-mortal state of being makes us eternal.  What’s more is that I continue to believe the same “us” will  go on existing after this life.  I find comfort that somewhere in time and in another place, Ken will remember and celebrate his day of arrival in that future place.  I doubt it will be known as a “birthday,” but it will be a day to commemorate which, surrounded by loved ones, will bring him, once again, joy.

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Just after I finished my previous Blog, “Through The Storm,” I received a lovely email from my cousin, Penny, in Oregon.  I could see by the enormous block of addresses that she had, indeed, sent it to all of her friends and family.  It was one of those emails worth forwarding titled “I Pray For You Enough…..”  After reading it my thoughts were, “How nice.”  I had received a similar one a while back titled “I Wish You Enough……”  The contents were the same, the story line the same but a little different in that the prayer one involved a mother and her daughter, while the wish email was about a father and daughter.  I wondered if an original story had been written by the talented writer anonymous, and during the little email’s travels over the waves of the internet, the various recipients tweaked it just a bit to suit their own fancy, with change happening in small increments.  In any event I’ll briefly relate the story as if she were telling it:

“At the airport I was waiting for my flight when I noticed two women standing nearby.  So close, in fact, that I couldn’t help but overhear their conversation.  As the daughter said goodbye before rushing to her flight she said, ‘I pray for you enough……’  The mother returned the phrase, ‘and I pray for you enough……’ Tearfully, the daughter scurried off to catch her plane as the forlorn mother watched.  I could tell she was near tears, but I didn’t want to intrude.  However, she caught my eye, knowing that I must have heard their conversation and asked, ‘Have you ever said goodbye for the last time?’  I answered that I had, many times.  Tears began to flow as she sat down next to me, her sad words revealing that she had a fatal health condition and her daughter’s next visit would be for her funeral.

“While her explanation allowed me to know she was dying, I wondered about the phrase used by both women.  Timidly, I asked, ‘What did you mean when you both said I pray for you enough?’  She went on to tell me of a family tradition which had been passed along for generations, praying that their loved ones would have enough to meet their needs and to bring  joy to their lives.  Then, as if memorized she said,

     ‘I pray for you enough sun to keep your attitude bright no matter how gray the day may appear.

     ‘I pray for you enough rain to appreciate the sun even more.

     ‘I pray for you enough happiness to keep your spirit alive and everlasting.

     ‘I pray for you enough pain so that even the smallest of joys in life may appear bigger.

     ‘I pray for you enough gain to satisfy your wanting.

     ‘I pray for you enough loss to appreciate all you possess.

     ‘I pray for you enough hellos to get you through the final goodbyes.'”

Seven simple prayers covering just about anything one would need, except when life changes dramatically as it does with illness.  The mother was ill.  What would she need in the way of, “I pray for you enough……” for her condition?  And I thought of AD and Ken, and myself as a caregiver.  Not only us and our needs, but the needs of caregivers all over the world who have accepted this awesome responsibility of caring for the dying no matter what the cause.   (Please note I am not including prayer for healing because I’m only considering terminal illness where there is no hope.)  So for the patient, these six are a beginning:

I pray for you enough peace of mind to get you through the day without — or at least with only a minimum — of anger, agitation and mood swings.

I pray for you enough memory so you can take care of your personal needs: a shave and a shower without help.

I pray for you enough friends and family so you can talk, even if it’s only ramblings.

I pray for you enough strength so you can walk a short distance with your caregiver, and get from one room to another without help.

I pray for you enough respect and love from others, that they remember who you were and not what you have become.

I pray for you enough medication to keep you free from pain, to calm your nerves and allow you to relax and sleep.

As a caregiver, the most often-asked question I hear is, “What can I do for you?”  I have “Ken sitters” a phone call away.  I have friends who drop by with a meal for two, cake, a plate of cookies, a book to read, Monday night dinner at Jayne’s house, phone calls so I can sit and chat, friends who invite us to social events even if Ken acts strange, notes in the mail telling me they are thinking of us.   How blessed I am, but even with such awesome support we caregivers need all the help we can get — including prayers.  I have listed a few for starters:

 I pray for you enough sleep and rest.

I pray for you enough knowledge, skills, support and help in handling stress.

I pray for you enough friends and family with soft shoulders to cry on.

I pray for you enough patience to get through the day.

I pray for you enough memories of the good times in life and enough erasers to dim some of the worst AD has to offer.

I pray for you enough love and devotion from all those who know you, and enough knowledge to know you are cherished.

I pray for you enough faith to remind you (thanks Lynne) that there is life after Alzheimer’s and all of those other disease horrors.

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