gratitude

Blessings In Disguise

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.

Originally posted 2010-04-28 03:39:46.

SUPER BOWL GRATITUDE DAY

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.

Originally posted 2011-11-12 04:01:01.

TO COMPLAIN AND QUIT — OR NOT

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 or tattle. 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 strive 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.

Originally posted 2011-07-10 18:52:36.

A FATHERS’ DAY GIFT FOR DAD

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.

Originally posted 2011-06-17 19:17:10.

“AD” ROAD SIGNS FOR WOMEN — ARE THEY DIFFERENT?

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.

Originally posted 2011-06-05 06:06:36.

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