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Posts Tagged ‘gratitude’

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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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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pile of rocks
 As Scoutmaster for many years, Ken spent a lot of time leading boys of all ages through the ups and downs of growing pains by helping them over some of the hurdles which would eventually lead them into manhood.  There was Scout Camp, overnighters, merit badges to earn, knots to tie, awards to receive and lessons to be learned – some learned high in the mountains of California.  After years of counseling at Scout Camp, Ken and his assistant Scoutmaster and a few volunteer dads decided to put their young men through another kind of challenge: 50 miles through the high Sierras in one week.  It was so popular it became a yearly event.  The boys, however, had to qualify by participating in several overnighters where they had to hike x miles into the camp site – with full packs. 
None was more excited than Mark, just 12 years old and a new scout, but he qualified right along with everyone else.  Typical of many pre-teen boys, Mark hadn’t had a growth spurt in a month of Sundays and was still a tad small, a bit on the thin side with knobby knees and colt-like legs; yet his enthusiasm was unmatched and an eager smile made up for any physical shortcomings. Years later Mark wrote about his first backpacking experience: a few paragraphs quoted below.

“I so looked forward to being included in the 50-mile hike the troop took each year.  Everyone prepared for it with mini trips, but there is nothing like the real thing, which took us into the Hetch Hetchy Reservoir area near Yosemite.

“We hiked 10 miles the first two days which was grueling as we made our way up the mountains ascending to heights which none of us were accustomed.  The switchbacks taunted us as we made our way back and forth and up.  It seemed my backpack grew heavier with each turn of the trail.  At the top of the last set, I discovered why it became more weighted every time we rested.

A few of the older scouts felt it would be amusing to see the expressions on the faces of the two 12-year olds as they discovered they had carried a few stowaway rocks up all of those switchbacks.  I laughed, but was secretly thankful for those rocks from that time forth.  After liberating them from my pack, I found I had no problem carrying the lighter load.”

Mark learned a very profound lesson early in his life, and he continued to apply the importance of eliminating excess baggage – rocks — from his journeys through life.  As caregivers we need to remember to strive on a daily basis to do the same.

After being away from home for three months following a horrific automobile accident, I returned to the familiar, yet the unfamiliar.  My life had been drastically changed. Ben was taking care of Ken, for which I was grateful.  Not being the same as I had been I wasn’t able to get back to status quo, nor was Ken the same.  His battle with Alzheimer’s now included him having to adjust to all of the new changes in his life.  Ben was new, the routine was different, his abilities had been greatly diminished, and my late entry caused him to become more confused.

Even with his AD I wanted life to be as it had been before the crash.  I knew where he was and right where the two of us had been in living and dealing with the disease.  Now I had to start my relationship with Ken all over again while still nursing my own hurts and injuries.  Consequently, my disposition was definitely wanting.  “Are you mad at me?” he asked one day during a lucid moment.  “No,” I answered, “I’m not mad at you.  Why?”  Sadly, he looked at me and said, “Your voice sounds as if you’re mad at me.”

That caught me off guard, and I thought about our conversations – minimal though they were – I realized he was right.  Whenever I spoke to him, whether he was Ken or Mr. Hyde or Buddy (his various personalities) I could hear the irritation in my voice. So I had to ask me if I was mad at him – angry with him — if so, why?   Thus, I was back to soul searching – which I have had to do every so often. Yes.  I was angry and I was taking it out on Ken, including his lucid moments.  Moments, so few and far between were being wasted with my irritation.

However, I was feeling anger because of all the time that was gone in being badly hurt and having to take more valuable time to heal and to go through physical therapy.  Angry because I couldn’t do all that I had done before.  Angry because I still wasn’t my old self, angry because I had continued discomfort and pain.  I was angry that Ken had Alzheimer’s, and angry that there was nothing I could to about it.  If he noticed the irritation in my voice, did I have the same irritation when I spoke with others?  I knew it was time for me to begin removing the rocks in my backpack, and in so doing I would also find some peace.

Nothing is instant – except maybe potatoes and coffee – and I knew it would take time for me to bring about my goals.  The first baby step was to stop taking out my anger and frustrations on other people – especially Ken.

As a caregiver, I cannot change anything with anger, neither can I undo yesterday, nor can I cure incurable diseases even with over-the-top anger. Being angry only adds a heavy rock to my already burdened life, and as Mark said, “After liberating the rocks from my pack, it was easier to carry the lighter load.”   Little by little I have managed to remove the rocks of anger.  I also lighten my load by striving every day to find something to laugh about with Ken – maybe not with him – perhaps with Ben or Criz.  We can laugh about something Ken does because at times he and other AD patients are funny and it is okay to laugh. If you haven’t laughed all day then read a funny book or rent a funny movie, but laugh. The more I laugh, the more I can let go of anger and any other negatives which are always nearby and ready to sneak into my backpack.

This past year plus has changed Ken a lot.  He seldom has lucid moments when he can manage any sort of conversation.  Whatever he jabbers it’s without logic.  His other personalities are gone.  There is no Buddy, nor does Mr. Hyde visit, but that’s all right.  They were both rather disagreeable characters.  What’s left is a small portion of Ken who makes little sense. We are where we are in this life, and I know I must strive to be continually accepting.  In doing so, I often remember the serenity prayer, which I’ve always liked.  It’s so applicable for those of us who journey together with our Alzheimer’s loved ones:   “God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”  So now, let’s begin by liberating the rocks, including the tiny pebbles of negativity, from those heavy backpacks.

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Father's Day gift

Most times the best present of all is a visit from a loved one.

“What should I get for Dad?” seems to be one of the most-asked questions falling from the lips of all children whether they are adults or still youngsters.  I recall Ken asking his mother, Rose, what we could get for his father as the arrival of either his birthday, Fathers’ Day or Christmas popped up on the calendar. I wasn’t any better with my dad.  The needs of these two men were next to nothing – minimal – and even minimal was too much.  They had everything they wanted and if they wanted or needed anything else, it seemed they just went out and bought it.  So much for gift ideas!

Nevertheless, we tried, and our children tried.  We might upgrade Dad’s hammer or get a new set of screw drivers, but how often could we do that.    Ken’s father was so funny about gifts.  He loved having us congregate for his birthday and other special occasions or for no occasion at all. But on present days we wanted so much to find something special for him; something he would remember and enjoy – from us.  Nick was an appreciative man, and when he opened our gift we were certain we had selected the perfect item.  Gushing with enthusiasm, he held it up for all to see exclaiming loudly, “Thank you very much.  Thank you very, very much.”  And he was sincere.

He blew out the numerous candles on his cake, and then Rosie served slices of her yummy chocolate confection with ice cream and 7-UP for all.  He was the life of his own party even if they were always the same. 

Lovingly, he would stand at the door as we left expressing how much he appreciated our coming and thanking us over and over for the gifts.  Then he would say to one of the older boys, “Why don’t you take this home?” handing him the after shave lotion which was the gift from Loretta.  To Ken he offered the screw drivers our children brought, and Loretta got the hammer. “Please,” he coaxed, “take these home.”  Now we, the guests, were the ones saying, “Thank you.”  Every gift-giving session with Nick ended in the same way.  “And thank you too,” we all called back relieving him of his just-opened presents. It was useless to object.  No matter what we brought to him, he gave it back to us, or to one of the other guests.  We all just shook our heads and laughed.  I suppose the gift he wanted most, and received, was having his loved ones near: our presence was his present.

My father wasn’t much better although he did keep everything.  He was a handyman so he used the tools, but when they moved and we cleaned the medicine cabinet we tossed the old after shave lotions with the seals unbroken certain the fragrance was long gone – or worse – drastically changed.

Ken was different, truly loving everything given to him.  His interests and collections covered many bases.  A kid at heart, our children and grandchildren knew they could even buy him toys, which the children were allowed to enjoy, but only with Grandpa.  Furthermore, he never gave any of them back.  He was not like his father.  Having once worked for the railroad he was the recipient of a phone shaped like a train locomotive, a miniature train and railroad station which in reality housed a clock announcing the hours with train whistles and a conductor shouting, “All Aboard.”  Grandpa was showered with trains of all gages from “N,” and “HO,” all the way up to match the train he had as a boy. The shelves were lined with miniature cars, trucks, semi cabs with trailers, and heavy equipment.  As a Navy man Ken enjoyed the tiny replicas of WWII battleships, cruisers and PT boats, “The Lone Sailor” figurine standing watch, and to hold up a section of Navy books our son had given him anchor bookends.  One year I asked our daughter-in-law Peggy to finish a hooked rug bearing the Navy seal which Ken had started but never finished — being the great procrastinator.  She did, and he was thrilled as we hung it on the wall. Ken even let everyone know he collected teddy bears.  His home office was the envy of all the grandchildren looking more like a shop filled with collectibles than a serious spot where the man of the house wrote monthly bills and figured his taxes.  After all was said and done I found it to be an endless chore to clean, and a pain and a half to dust, which I did, but only if and when Ken was willing to help.

He also enjoyed new shirts, new wranglers and new ties.  His first gift tie came from our daughter, Julie, when she was 9.  With white-elephant donations through the PTA and a two-day sale, the children were able to purchase affordable gifts for dad come Fathers’ Day.  Selectively, Julie chose the prettiest tie in the whole lot — a wide, hand-painted number sporting a garish Hawaiian sunset that was certain to blind onlookers.  He wore it all day — even to church.  “Nice tie,” commented the brethren – knowingly — “Fathers’ Day gift?”  He nodded and they all smiled.

As Alzheimer’s took his mind, it also took his happy spirit, his joy, and his sense of humor.  His curiosity about a colorfully wrapped package slowly ebbed until there was no longer any interest.  Even the greeting cards that were enclosed are now without meaning – just something to look at and toss aside.  So here it is again: Fathers’ Day, and the question still arises, “What can I get for dad?”

Whether it’s Dad’s Day, Mom’s Day, or Aunt Elaine or Uncle Tony’s birthday, or anyone else’s special day who is stricken with any of the vicious mind diseases the answer is usually the same.  “He/she really doesn’t need anything,” or the caregiver may say, “How ‘bout some new sweat clothes,” realizing the uniforms of the day are looking a bit shabby.  The only real need the victims may be aware of is a need to be fed when they feel hungry.   A plate of cookies brings a sparkle to Ken’s eyes and he might say, “Those are mine, thank you.”  So cookies are always a good gift, or candy; both can be rationed if there is a health problem.

Other than sweets and treats one suggestion as the best of gifts for the afflicted, and the caregiver as well, would be time – your time – time in the form of a visit given by friends and time given by family.  Not a lot, stay for just a little while and then you can leave, but please come again.  From what we, as caregivers observe AD has stripped their memory of everything once held near and dear.  Ken’s face is usually a blank wall as he stares up into the face of a visitor.  Perhaps, he may shake hands – or not.  Typically, there appears to be no recognition, nor does he make much of a comment as he did during the earlier stages of the disease.  At times Ken is chatty, or he may ignore the visitor altogether, or take a nap.  There is no “best” time for a visit.  Most of the day he is unpredictable; at times dozing off while the visitor sits nearby wondering what to say next.

Later, though, after someone has come and gone, and toward the end of the day Ken seems a bit calmer, more pleasant, happier if that’s still possible.  Prehaps deep in his soul the voice of the “stranger” works its way through the slime covering the brain and settles in a place that brings him the most comfort: in his heart where he may feel the reassurance that he is still cared for and loved.

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Curves ahead road sing

Like dangerous curves on a mountain road, no one knows what to expect from Alzheimers.

Do women change dramatically once Alzheimer’s begins its attack on their brain?  Rose and my mother, Irene, remained gentle people, but I don’t believe that’s always the case.  I was told of one woman suffering with AD who seemed to have the strength of a lion.  When she was provoked to anger, the adrenaline really began to pump.  Reaching over the rail of her hospital bed, the distraught victim picked up a nearby chair and hit her attending husband with it.  Quoting my friend Madalyn once again, “They’re all different.”  It would have been interesting to know if that “hearsay” patient was a violent person before AD.  In any event the family and I were grateful that the two mothers in our lives were not combative.  Perhaps I should say there was no occasion to thoroughly test their defenses, and that’s always a good thing.

Both women were cognizant of gratitude, and always managed to say, “Thank you,” for favors and services received.  There was a sweetness which remained as part of their personalities, along with other facets of who they had been before AD.  Their memory was stolen, lost in the shadows making us strangers to them, more than them becoming strangers to us.   The changes taking place so slowly it’s often difficult to recall exactly when they began.

With Rose it was her forgetting that we all noticed first.  Ken would call to ask if she and Dad were going to be home as we were planning to visit.  “Oh, yes,” she answered, “we’ll be home all afternoon. Please come.” When we arrived they were gone.  Rather than drive the 30 miles return trip we waited believing they were probably at the store.  Sure enough, they soon returned with Rose asking why we hadn’t called to let them know we were coming.  We made up some transparent excuse and enjoyed our visit.  She did, however, remember telephone numbers.

“Mom fills my answering machine with one call after another,” Loretta complained as we talked about Rose’s inability to remember her daughter was at work during the day.  When the machine no longer picked up, Rose would call me.  We talked for a while, her asking the same questions with me giving the same answers, and then said goodbye.  Ten minutes later the phone would ring again and, sure enough, it was Rose.  Over and over again, the routine continued until, for my own sanity, I had to let the calls go to the answering machine.  Thirty five years ago, the entire AD experience was new to all of us.  We were all learning, but still in a state of wonder as how to manage and get some constructive advice.

Our daughter, Debbie, came with me one day to visit her grandmother.  Rose was looking at an old photograph album.  With Debbie sitting by her side, Rose looked at the pictures naming her brothers, sisters and friends from the distant past.  Over and over she told the same stories turning the pages back into a circular motion with no beginning and no end.  It was only when Debbie laid the book flat allowing the album to close that brought the book and the stories to a natural end.  Rose read the newspaper the same way —  always stopping and reading aloud an article of interest  (the same ones each time she rotated the paper) over and over until she grew tired and something else sparked her curiosity .  Little by little we began to put the mystery pieces together.

Following Nick’s passing we realized Rose was not only forgetful, she was becoming more and more confused.  The TV dinners we bought had worked for the two of them in the past, but alone she found the boxed meals of no value.   Peeking inside, Rose sampled the contents; the food was tasteless and cold.  She rejected the entire package except for the applesauce, which she ate, leaving the rest of the soggy dinner in the refrigerator, and then placing another frozen meal on the counter to thaw.  Even with my constant visits and Loretta living close by, we realized Rose could no longer live alone.

With my mother, Irene, it was her inability to listen that was one of the first signs she was changing.  She had been a wonderful conversationalist; not only a good talker, but a great listener as well.  Spending time with her, before AD began, was a joyful experience where we could exchange thoughts, ideas and ideals often delving into deep – sometimes controversial subjects – but our exchange was that – an exchange.  It was never an offense/defense debate, merely good conversation between two grown people with each leaving the other a little food for thought to consider until next time. I found the time spent always something to look forward to, but when AD arrived, she stopped listening.  There were no more inspiring tidbits from years of experience for me to take home and no more solid advice.  Her conversations no longer made a point, words became just words and when I spoke up she interrupted as if she were spending time with someone else – or possibly her mind was somewhere else.

Even if no one was with her she often droned on and on without end.  One evening, during dinner, she chattered while the rest of the family ate — her plate nearly untouched.  Finally, my father murmured, “Irene!  Please just be quiet and eat your food.”  She took a few bites then went right back to her endless jabber expressing her rambling thoughts.

Once Alzheimer’s has become an unwelcome part of a family — coming at will – it takes up permanent residence departing only when its victim passes on to a better place.  However, watching for a return visit in other family members becomes second nature to the survivors.  So it was that my heart stopped as Ken and I stood on a grassy knoll where spring-like water gurgled from the ground, and where we had been several times before.  “I have never been here in my entire life,” he claimed after I had mentioned that it looked the same as last time we visited.  I knew then AD had arrived again, its slime once more creeping into our lives like wisps of fog along the shore.  No one’s road signs are the same, personalities become altered, and relationships change.  I go back to my friend Madalyn and her reminding me that Alzheimer’s is different for everyone, yet the end results are, unfortunately,  identical:  No one has ever recovered from the disease.

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I can’t imagine what it must have been like to receive the kind of phone call my children received the night our car was hit by a drunk driver; when life, as we all knew it, suddenly came to a screeching halt leaving dinners uneaten, appointments canceled, meetings unattended, young children bewildered and our adult children and their spouses gathered in disbelief.  In retrospect I realize how naive humanity really is, all of us thinking we are so in control — masters of our very existence — when in reality we are not.  Life pulls the rug from under our feet every so often, perhaps to remind us of how frail and vulnerable we really are, and how dependent we are on one another.

Now what?  I suppose that was the paramount question.  Suddenly, the responsibility of mom and dad fell upon the shoulders of the next generation with absolutely no warning.  Even with Ken’s Alzheimer’s, he and I are the generational buffer zone between them and the great beyond.  You know, the older generation that keeps those of middle age somewhat “young” because their parents are still alive; grandparents to their children and like a rock we have always been there.

Then, unexpectedly things change and major decisions must be made by five adult children.  Five different opinions need to be considered, and five solutions weighed for the dozens of problems which lay ahead.  Could they work together or would they pull in opposite directions?  Could they get past “personalities” and agree even if it was agreeing to disagree, and be able to get on with the tasks at hand which included health-care decisions based on existing Advance Directives.  Who could and would handle the varying components and who would be accountable for mom and dad’s finances?  What about dad?  What would they do with their dependent father once he was released from the hospital:  caregivers at home or a care facility — or what?

I now refer to Keith as my CEO.  It seems that someone in the family steps forward and takes over.  Not that there isn’t that same capability of leadership in all of our children, it’s just that this time it was Keith who took charge — delegating and assigning what needed to be done.  Whether the others grumbled or disagreed I don’t know, nor do I want to know.  What I do know is that my children — with families of their own, business and work schedules to attend — set aside their own priorities to care for our needs.  Together, perhaps prodded and encouraged by the CEO, they worked like a finely-tuned machine; each doing what was assigned in the best way they knew.

As I recovered, I was able to spend a good amount of time with each one of my adult children: three men and two women, and their families.  It was quality time, relaxed time, alone time, intimate time, and stolen time from their busy lives, but I treasured those hours with them, rediscovering who they were, finding them to be the kind of people Ken and I had hoped they would become.  I also realized how very different they are, which I found rather amazing.  Coming from the same parents they are not carbon copies of me and Ken.  They have, however, grown into their own diverse persons while embracing the same values and qualities they had been taught: they are vigilant and hard working; and they are good, kind, loving and giving people.  I understand they don’t always agree with one another, nor do they always agree with us, and that’s all right.  The important thing is they are there for each other, and they are there for us.  Not only do I love them, but I like them; could a parent ask for anything more?

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Ken, Mabel and his daughters Julie and Debbie and daughters-in-law, Mary and Sabina at his 80th birthday 2005

This is, possibly, my last guest post. My mom should be back here writing next week – or soon thereafter.  Debbie Schultz

One of the blessings that came from my turn at caregiving was a chance to become reacquainted with my dad. Obviously he is not the strong, but gentle man, who raised me, helped me through a divorce, get back into school, and proudly watched me graduate from college at the age of 41. This man is definitely different, interesting in his babbling, making sense only in fragments. He was always a great storyteller, but even that aspect is gone from his tangled brain. I see his personality in layers. Some of the facial expressions I remember as a little girl, the mannerisms are still there. When I first arrived here from my home in Utah, he was lying in a hospital bed, mumbling in heavily sedated sleep. He seemed so very old and vulnerable to me. I softly stroked his head and muttered my good byes, thinking that might be the end. But like my mother, he has a tremendous will to live, and two weeks out of the hospital, he is gradually becoming his old pre-accident, self.

The disease is horrifying, taking a person a bit at a time, but in a somewhat detached way, it is also fascinating. What makes a personality? What bits and pieces of one’s history stick, and why do they stick? What jogs memories? Why do some things stand out, while others are forgotten? When asked, he will say he has no children. He confuses me with my mother, but I correct him and tell him that I am his daughter and I love him. I  especially use the technique when I am doing things he doesn’t want done, like showers. Looking in his eyes and telling him seems to calm him. I call it speaking spirit to spirit. And when my daughter goes to move something of mine, he says, “Don’t touch that, it’s my daughter’s.” For a brief moment I am remembered.

He knows he was in an accident. The first few days he was home from the hospital he complained about being stiff and sore. He told me that he hurt because a truck hit him. He knows, when he remembers, that my mother is in the hospital. His love for her, despite the forgetfulness is so evident. Besides often asking where his wife is, there is wistfulness in his wanderings. He sleeps on his side of the bed, waiting for her to come. He asks me if she is working and if so, when will she return home?   Although my voice may sound the same, my reactions are different than hers. He is confused by the similarities.

I am grateful for the opportunity that I have been given to get to know my father all over again. I have more feelings for him as I have served him these past few months. I miss the man that he once was, but I love this frail, funny, shuffling person he has become. Who knows why we go through the things we do in this life? As hateful as this disease is, it often brings out the best in the people that it touches. I have gained a new appreciation for my mother and all she has gone through as she cared for the other members of our family, who were also struck down by Alzheimer’s. The positive side of this negative situation is the opportunity I have been given to serve my father and make some effort to understand what has happened to change him. Without caring for him, there would not have been the reconnection I have felt.  When he is truly gone I will not only mourn the man my father was, I will also mourn who he has become. I am indebted for the chance that I got to know that other man.

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I have found the Internet to be filled with information that goes far and beyond email, but we all know that, so it’s usually the email we go to first.  It’s like long ago when we checked the mailbox.  Remember people writing letters?  Now, to receive a personal letter at your front door is unusual — if not downright thrilling.  Most of what the mailman delivers is junk or bills, and email is often like that as well.  No bills, some junk to delete, and at times I’m disappointed to see only forwards.  However, I have come to appreciate even most of those.  Some are LOLs (and that’s the new text jargon meaning laugh out loud, and like or or not it’s here to stay).  Some I read and delete and others are good enough to forward.  They can be funny, inspirational, nostalgic, political, informative, enlightening, spiritual, sights to see beyond description, travels that can take your breath away, and fabulous photographs from all over the world, under the sea and outer space.  Yes, even those pesty forwards can be worth the time.

A special one, which I recently watched and was drawn to immediately was simply titled “The Sparrow,” and could best be described as a Public Service Announcement (PSA).  It was, however, in a foreign language with English subtitles.  The scene was a garden where two men were sitting on a bench.  The younger man was reading a newspaper, the older man just sitting.  Peace and tranquality prevailed with only the rustle of a newspaper and the sound of a bird.  “What’s that?” asked the old man.  “A sparrow,” replied the young man, probably a son.  Again the old man listened and heard the bird.  “What’s that?” he repeated.  The answer: “A sparrow!”  The young man returned to his paper and one more time the old man asked, “What’s that?”   Rumpling the newspaper in annoyance, the younger man said again, his voice resonating with irritation.  “A sparrow.  How many times do I have to tell you?” 

The old man left the bench, went into the house and returned with a book.  Turning the tattered pages, he found a passage, handed the book to his son who read it aloud.  It had been the father’s journal from long ago when his own small son sat with him in a garden and the sound of a bird was heard.  The small boy asked his father, “What’s that?” and the father answered, “A sparrow.”  Sparrow: a new word in the boy’s vocabulary which was soon forgotten until he heard the sound again.  “What’s that?” he repeated.  And the father wrote of the experience explaining that the boy asked about the sound over and over.   “Each time,” the father wrote, “I told the boy it was a sparrow and each time I gave him a hug.”  The grown son, no longer holding the newspaper reached over and gave his demented father a hug.

With strong identification, I watched and a tear rolled down my cheek.  But years of living with Alzheimer’s has added a necessary toughness — perhaps a better word is strength — to sentiment, and by putting a hold on sentiment there might be a tendency toward cynicism.  So as a little of the cynic crept into my thoughts I had to conclude that if the old man remembered his journal entry about a sparrow, he should have remembered the word sparrow.  But I also know that cognitive loss is different in every Alzheimer’s patient, and short-term memory is the first to go.  Long-term memory comes and goes and often plays tricks so I put my cynic self to rest and appreciated the message for what it was.  It was loud and clear and didn’t have to be spelled out:  patience.   Alzheimer’s victims deserve patience.

Mike is married to my husband’s sister, Loretta (also an AD victim).  He and I have often lamented together about how difficult it is to be continually patient with the forgetfulness and constant repetition.  “That’s the hard part,” he says, “the same questions over and over.”    I couldn’t agree with him more, knowing with certainty that the two of us identify with the irritable son even though we strive our utmost to be patient.  

When the father in the PSA wrote of teaching his son about the sparrow, it was easy to be patient for the end result was knowledge for the boy and joy for the father as he watched his son grow to manhood with life stretching before him.  For the grown boy, and for all caregivers of AD patients, there is little joy and no hope for the future of the ailing victim.  However, there is compensation which comes with a good day, a good evening, a good hour, or even a good moment when the patient is lucid and a spark of memory rushes forth, a moment of tenderness or a familiar smile from the past.  Then the caregiver feels gratitude and patience is rejuvenated — at least for a while.

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