NO GUILT WITH ALZHEIMER’S

December 3, 2016 – Just like other important things in our lives that disappear with Alzheimer’s, and other types of dementia-related diseases, decisions about right and wrong vanish as if they were lacy clouds on a windy afternoon.

Even though mom and dad taught their young ones it was wrong to take something that didn’t belong to you, the idea quickly becomes a concept least understood as the brain dismisses other learned values over years of any one of the mind diseases. There are times when an Alzheimer’s patient is about on the same level as a three-year-old who takes something because he/she either wants it or believes it is his. Not like a major theft which takes planning and preparation, but a spontaneous reaction to what might be done in his own home.

THE MAIL IS MINE

If the mailman came before I could get it from the box, Ken grabbed it and took it inside where he studied each envelope, contents and ad. He then folded what he believed to be important, and put it in his shirt pocket until he decided where to hide it from me.

ANOTHER PERSON’S MAIL

One day we were visiting friends who had just purchased a new home near the Delta area of San Francisco’s Bay. The four of us enjoyed a lovely dinner provided by our hostess, and then adjourned to the living room for further conversation. As we talked, mainly the three of us – them knowing and understanding Ken’s condition, he sat nearby looking at the newspaper. The pleasant evening ended when Ken became tired and I knew it was time to go home. We said goodbye to our friends and left. There was nothing unusual about the evening.

DAYLIGHT BRINGS A PROBLEM

The next morning I answered the phone to find our friend, Les, on the line. “Did Ken happen to take my coupon home by mistake when you left.” I knew it would be useless to ask Ken who would remember nothing about the previous day so I began looking on tables, nightstands and finally in the pocket of his shirt. “Guilty.” As I rummaged through what appeared just throw-away junk from the mail I found the coupon.

Sorry,” I apologized picking up the phone. “I’ll put it in the mail today. I am so embarrassed that he took it. I guess he thought it was his mail as he looked it over while we were talking.”

Les assured me that he understood about Ken’s illness, but that really didn’t make me feel better. I found myself wary about taking him to the homes of other friends. What else might “Light-fingers Louie” find that he may have thought was his, or even in a store. I know he wouldn’t serve time, and I’m certain that with the general knowledge of Alzheimer’s and other dementias, no one would call the police. Still, when we were shopping or visiting I watched him even more closely than before.

What a terrible disease.

THANKSGIVING 2016

THE SUPERBOWL OF GRATITUDE:THANKSGIVING

November 25, 2016 – I like to think of this national holiday as at least one day out of each year when families actually count their blessings. And what better day than this historical day of gratitude. So what do we get instead?

ANOTHER GRINCH STEALING TIME FROM FAMILIES

Such incredible greed from corporate America. It was all so subtle: Black Friday filled with enticing advertisements throughout Thursday’s paper. Instead of sitting by the cozy fire with family and friends, the feasters gather around the ads to see what’s a great buy, and making mental notes about how nice Aunt so and so would love this, and at such a bargain.

Hardly had their heads touched their pillows, a few years back, than the alarm sounded for the early. early wake-up call to throw on some clothes, leap into the car and drive off to the mall to be first in line for these never-to-be-offered- again items, the same items that will be on sale in a few weeks. Merchandisers are not going to give up their edge in getting the merriment or bah-humbug shoppers back into the stores to gobble up the bargains like that Thanksgiving bird eating his last meal.

FRIDAY WAS BAD ENOUGH

But now the merchants have made a big intrusion into the holiday itself. It’s no longer just Black Friday, but it now encroaches into Thursday afternoon. “Doors Open at 3:00. Be first to finish your Christmas shopping.” At 3:00 our house is still filled with family and friends just finishing up the last drumstick with hardly time to pick up the empty plates. Nevertheless, our family has only once been lured by the bargains to leap up from the table to scamper off to do Christmas shopping. That was way back when it was still  Black Friday. Today, even the auto industry has jumped on the Black Friday bandwagon. What better time than the day after Thanksgiving to get rid of last years models Nevertheless, our family hasn’t been lured away to buy the bargains, not even a good deal on a car. For that I am very grateful. I’m not going to protest by knocking down a pile of neatly-stacked socks. I’ve decided to do my shopping this year on line. The bonus: it’s delivered to my house. Too bad it isn’t gift wrapped.

PEACE REINS SUPREME

The cozy fire crackles on into the remaining day and evening. It has been a lovely time. Nothing is better than family. That’s the way it’s been with us for as long as I can remember. Hopefully, that’s how it will always be, at least at our house. I do hope your day was as good.

ALZHEIMER’S — ALL IN THE FAMILY

SOMETIMES YES, SOMETIMES NO.

November 18, 2016 – When a parent, grandparent, aunt or uncle is diagnosed with one of the dementia diseases, there is a natural concern throughout the family wondering if he/she could be carrying the gene.

EARLY DECISIONS

Shortly after Eugene returned from Europe following the end of WWII, one of my husband’s cousins, we’ll call him Eugene became engaged to a lovely young woman, and I’ll call her Gloria. They had been completely honest with one another about how each felt about having a family.

Gloria was first to say that she did not want to bring children into the world because she had some relatives who appeared to have mental problems. Several of her mother’s siblings became terribly confused in their older years. So confused they could not function in any normal way, nor could they be left alone. Gloria saw the future with children as something she could control. She did not want to pass along what she considered a defect in her family to another generation.

Eugene, of course, was disappointed, but loved Gloria enough to accept her decision. Together they would enjoy the nieces and nephews or children of their friends and not become parents. Gloria was terrified that her children could be part of the same sad life that she was aware of within her own family.

They both became career people, each successful in their chosen professions, and became a favorite aunt and uncle to many, or simply carrying the honorary title for the children of close friends. Neither regretted their decision to remain childless.

A SURPRISE DISCOVERY

During the years that followed, the couple noticed that several of Eugene’s aunts and uncles developed the same state of confusion that Gloria had feared so adamantly. Possibly the children brought into their world just might inherit the strange disease from Eugene’s side of the family. Over the long haul their children could have a double whammy of the troublesome gene from both families.

Perhaps it is a good idea to be tested before marriage, if there is concern, to see if one or the other young person has the gene that would bring Alzheimer’s or other dementia-related diseases to future generations. Even if a couple decides to adopt a family, they still run the chance that an adopted baby may have the damaging gene.

NUMBERS ARE EXPLODING

Within the statistics of today’s world regarding dementia-related diseases, and increasing constantly, my uneducated, unprofessional guess would be that, even though AD has been around for more than one hundred years, I believe the cause will eventually be related to what is happening in the environment. Now remember this is opinion, not fact. But there are times when we must ask ourselves what are we messing up now?

HONORING A VETERAN WITH ALZHEIMER’S

This gallery contains 1 photo.

Honor Guard Veteran pin

Following Ken’s funeral, because he was a WWII Veteran, I received this logo coin from the Riders in honor and in memory of my husband Ken.

HONORING MY VETERAN TWO YEARS AGO

November 11, 2016 – When you’ve been married most of your adult life, it feels like forever. Yet when one spouse passes to the other side and the years continue, that time afterward also feels like forever. It’s been just two years since Ken passed on to the other side. The grief subsides, but the missing of your best friend and loving companion never goes away.

I was pleased with the day we all said our goodbyes to our veteran husband/friend/father. Our children shared remembrances of him as they recalled their fun-loving father and his endless stories. Ken loved his time in the Navy and the years before sailing on a sea-going tugboat with the Merchant Marines where the little craft towed portable dry docks from island to island in the South Pacific.

Our son Keith spoke of his years as Scout Master for our local church troop, pack nights, and the memories gleaned by other young men as he praised their accomplishments and earned badges.

THE PATRIOT GUARD RIDERS ESCORT

With the church services over we were escorted to the cemetery by the Patriot Guard Riders. Perhaps you have seen them on Facebook or other social media. Often when people notice all of the riders on motorcycles their first thought is a group of Hell’s Angels. Some of the riders may belong to that club or other clubs, but when you see them as part of a funeral procession, all carrying flags, they are Patriot Guard Riders. These men come from all walks of life: doctors, lawyers, accountants, tinkers, tailors, cowboys and maybe even some sailors. The commonality they share, however, is they are all veterans, many of whom were Vietnam Vets. If ever there was a group of honorable men and women who should have had the thanks and recognition of a grateful nation it was the veterans from that unpopular war,but it was not forthcoming from the American people. A returning Army nurse from a field unit mentioned that she had been spat upon by a citizen when she walked down the street in uniform. The vets began to organize vowing that every vet should and wuld be honored. If circumstances had been different with Ken, and Alzheimer’s had not been a part of his life, I truly believe that he would have been a part of the Patriot Guard Riders.

COUNCILMAN KEVIN AND SOMETIMES MAYOR OF OAKLEY, CA.

As a councilman for his small city in Contra Costa County, CA., Councilman Kevin , our oldest son,and his committee organized and brought about a Veterans’ Memorial section to their Town Square. To cover the cost. families were invited to purchase a brick which would be engraved with the veteran’s name and service. The bricks were laid as the flooring for the outdoor memorial. The Patriot Guard Riders were part of the dedication. It was  Kevin who asked if I wanted a flag escort to see Ken to his final resting place. I thought it would be something my husband would have treasured, so Kevin made the contact and the men on bikes with flags were there for the escort.

I’ve seen the Riders on social media as they escort human remains of military personnel from the airport to a final resting place throughout the U. S. , as well as a small-town veteran, the Riders once again giving their final salute to one of their veteran brothers.

If you happen to see them, give a thumbs up and a thank you sir, for your service. It’s never too late to show your gratitude.

PATRIOT NICK AND THE ELECTION

PATRIOT FIRST

November 4, 2016 – My husband’s father Nick was an immigrant who came to this promised land as a lad of 15. “I want to go to America,” he told his father, asking for a loan of $50.00 which would pay his passage on a ship from the west coast of what would become Yugoslavia following WWI. With a pack on his back the boy sailed away from his boyhood in Austria to Ellis Island in New York’s harbor: The year was 1906. Once through immigration he wandered the streets of the city speaking the only English he knew, “Mr. Man, give me job.”

Mr. Man, a farmer from upstate New York, hired the boy. Nick was determined to become an American and after his chores were completed he devoted any spare time to learning the language and anything else he would need to fit in. Two years later he left NewYork to seek his fortune and a new life. He also paid back the borrowed $50 to his father. Drifting across the country he ended up in Pueblo, Colorado where he made friends and decided to enlist in the Marines, thereby earning his citizenship.

MARRIAGE, A JOB, BERKELY AND FAMILY

Upon his discharge from the Corp the young man married his sweetheart Rose, moved to the East Bay of San Francisco, California, and became the proud father of two children. He was employed by the owner of Block Tannery in Berkeley. It was a grungy, filthy and toxic job, but Nick stayed with the company until he retired in his mid 60s. Mr. Block was so impressed with his Austrian employee, that when work was slow during the depression years, Nick never missed a single day on the job. “When we run out of orders to fill,” Mr Block told Nick, “you stick around, I’ll always find something for you to do.”

UNION MAN

From the beginning Nick was for the working man, and during his middle years, union organizers approached the workers of Block Tannery and convinced the men they needed to become members of the Butchers’ Union. Nick talked it over with his boss and the boss gave his okay. Before he retired, the well-liked new Democrat and union man was elected to be the secretary of their local.

WHICH PARTY SHALL WE CHOOSE?

When Ken and I married and a voting year approached we knew if we wanted to vote we needed to choose which of the two parties we should join. My mom was always a Conservative in her thinking and, therefore, her voting. Dad leaned toward the Democrats. We registered as Democrats and remained with the party for several decades, but voted for the man, not the party, helping to elect Eisenhower, Kennedy and then Reagan. Finally we switched parties believing being Conservative was more in keeping with our philosophy of life. We have always had issues with some of the Republican party’s platform and goals, so we just spoke of ourselves as Conservatives not Republicans.

VOTING AND ALZHEIMER’S

Nick never missed his opportunity to vote, and he voted the straight party line until he could no longer understand what was going on with politics. Dementia diseases do not allow logical thinking nor allow any balance in the thought process. Dad could no longer read the pros and cons in the voter booklets or newspapers. Alzheimer’s robbed him of his cherished patriotic gift.

Years later Alzheimer’s robbed his son, my husband Ken of the same Constitutional right of every American: The right to vote.

THE INSANE ELECTION OF 2016

Liberal or Conservative, Democrat or Republican: I have not spoken to any one belonging to either of the two strained parties who hasn’t been disgusted that out of a population of more than 300,000,000 people these are the only two the parties have to offer. Our country is polarized, undecided and confused at this point in time and the election is just days away. With our founding fathers spinning in their graves and our Constitution hanging by a thread what will happen this coming Tuesday?

Alzheimer’s is now at a record level which makes me wonder if Uncle Sam might be suffering from dementia or one of the dementia-related diseases. Whatever the outcome next week the US of A is in for an interesting, if not  an extremely bumpy ride for the next four years. But remember Nick on November 8th, the immigrant boy from Europe who treasured his United States citizenship and always exercised his right to vote. SO GET OUT THERE AND VOTE.

THE MONSTER WITH NO COSTUME

shadow monster

The shadowy monster of Alzheimer’s disease is scarier than any Halloween creature.

October 28, 2016 – Of all the scary monsters encountered on October 31 of any year, the most to be feared in one of the Dementia-related diseases plaguing mankind at this time in history. Many of these are placed under the Dementia umbrella because they cause the victim to lose their cognitive awareness.

For those of you who have had loved ones with any of those dreaded diseases, I’m sure you will agree with me wholeheartedly. Any monster which attacks and destroys someone’s brain is indeed something to cause the greatest concern and nightmares. I’ve never seen a costume even remotely resembling Alzheimer’s or any one of the other closely related brain disorders. I suppose that would be considered in poor taste. On that I do agree. To imitate a victim of any such illness would be cruel and unkind not only for the victim but for family as well. Because Alzheimer’s is not funny or fun and will always be an unspeakable monster to all who have had experience with the illness I will remove further discussion of any relationship with the night of witches on brooms, black cats and kids armed with their trick and treat bags.

FUN AND FROLIC

One year when our first two children were small and my husband Ken was well without any signs of the coming disease showing up within either of our families, we bundled our little costumed girls in the car and drove to the home of Ken’s parents 30 miles away. The girls rang the bell while we hid from sight. Grandma opened the door and quickly called to Grandpa to come and see who was at the door. The little girls were scooped up with hugs and kisses and then the two of us popped out of our hiding place and joined in their moment of joy. I think back on those many years with gladness that we made the effort to give the older couple a bit of pleasure before the awful disease took both of them from us. Tomorrow was never promised to anyone, nor were a good number of special holidays promised. It was only a few years later that Grandpa began to show the first symptoms of his coming Alzheimer’s. So glad we paid them that special visit.

Have a Happy and safe Halloween, and if you can, take the children to Grandma’s house for a surprise Trick or Treat visit. Don’t let the monster of Alzheimer’s rob you of any joyous family moments. 

STATS TELL A STORY

Pile of books with a story

Though not necessarily found in a book, the stories behind Alzheimer’s cases can be a mystery.

October 21, 2016 – It isn’t a bedtime story for little children or something of comfort for anyone, but statistics usually aren’t. These particular stats tell that as the number of A.D. victims increases, one-half of the population will get Alzheimer’s disease, in their older years. 

However, for my generation, those stats appear to be spot-on. It’s projected that the numbers will increase dramatically. As a young married couple, we enjoyed the friendship and company of three other couples. Today, as we have all grown older one-half of our group has Alzheimer’s or has passed on with A.D. related problems. With those numbers in mind, the future doesn’t look very promising. Unless the driving forces of planned research make substantial progress in finding cause and cure (at least being able to slow the degeneration process). Meanwhile, one ironic story of the mysterious and destructive disease follows:

HIDDEN GENES

I’m going to call this couple Kirk and Glenda. A robust and healthy pair just as we all were in our 20s and 30s and all beginning our families. Kirk and Glenda were the proud parents of two girls and one boy.

One summer our husbands spent the weekend getting us settled in a campground a few hours from home. Of course, the men had to return and not miss their weekly work schedules, but would come the following weekend to share in our good times. We slept in a tent cabin and the grounds had wading and swimming pools, trails for hiking, horses to ride and other recreational programs for us to enjoy. During the later part of the evenings when the children were snug in their sleeping bags Glenda and I sat by our small campfire and just talked – girl-talk mostly. We had been good friends, but after sharing family stories and secrets we felt more like sisters.

Glenda was saddened when she told me about her mother and how her dad had to have her committed to some kind of facility (this was a half century ago) for the mentally deranged. The family visited the sick woman who had been diagnosed as having deterioration of the brain. Glenda told of taking her mother some of her favorite magazines to read. When they left mom was sitting in the corner of the room on the floor with the magazine upside-down, but turning the pages as if she were really reading. “My dad didn’t want to commit mom,” Glenda explained, “but he knew he could not give her the care she needed.” This kind of ailment appeared to be something new on the medical horizon

LIKE MOTHER LIKE DAUGHTER

Just about the same time as Ken was diagnosed, in the early 2000s, Kirk told us that Glenda had been diagnosed with Alzheimer’s as well. “I guess it’s a family disease in her family just as it is with Ken’s family,” I noted. “Glenda told me years ago that her mother had deterioration of the brain, which I suppose must have been the medical term for what we know now as Alzheimer’s disease.”

Glenda didn’t get Alzheimer’s from her mother,” explained Kirk, “at least not from her dad’s wife. Glenda was adopted. Apparently, the gene came from either her birth mother or father.”

Glenda died about the same time that Ken passed to the other side. Some mysteries just can’t be solved, especially when many records are not available. But Glenda’s story does follow the statistics as cited for my generation. 

the scream by Edvard Munch

Ungrounded fear is another trait of those with Alzheimer’s.

October14, 2016 – Just the word Alzheimer’s strikes fear in the hearts of just about everyone I know. It doesn’t matter if you are old, middle-aged or a young adult. It is a fearful disease. Alzheimer’s also appears to be a family disease, often passed on from one generation to the next, but not always. I like to quote from my primary-care doctor when I asked him about Ken following what I believed to be early signs of the disease. “Both of my husband’s parents had Alzheimer’s in their later years, doctor. Does that mean Ken will get Alzheimer’s when he gets on in years?” The good doctor smiled and said, “When conception occurs, the fetus has a vast gene pool from which to draw, so my answer is maybe yes and maybe no.”

I would have been much more satisfied if he could have given me a definite “No,” but with the disease in epidemic numbers at this time, his vague response was an appropriate answer.

QUESTIONING HIS OWN CONFIDENCE

Whether or not he was doubting my love for him, or questioning his own self-worth the day we picked up his first prescription of Namenda which had been prescribed by his neurologist, was a day of fear. The cost, especially compared to his Vitamin B shots was staggering. Arriving at the pick-up counter he grimaced at the price, looked over to me mouthing the amount. Then he asked, “Am I worth it?”

Walking to his side I replied, “Of course you are. We’ll pay whatever it takes. I love you.” He picked up the small package and we returned to the car.

ANOTHER CAA lon

A few years into the disease, I watched his paranoia set in with the fear that followed. Within the safety of our home, he worried if the blinds were open. He safety checked each room making sure no intruders were lurking behind the bed or hiding in the closets. Peeking through the slats of the blinds he warned me not to open them during the night because there were people shining bright lights from the buildings behind us, watching what we were doing. I never argued with him about the possibility. I knew enough about the strange disease not to confront him about his delusional behavior.

BEING ALONE WITHOUT ME

A long-time friend called from out of the blue suggesting I call a certain number in San Francisco to see if Ken might qualify for their program of clinical trials. We made an appointment where he was examined by several doctors and staff who confirmed that, indeed, he did have Alzheimer’s. The doctor in charge suggested a few tests where they might be able to use Ken, if he was accepted into the program. “He’ll have to spend a few nights with us,” we were told. As soon as the door closed and the staff was gone, Ken looked at me as if he were a frightened five-year-old child. “I don’t want to stay here without you,” he murmured. Seeing the fear and worry in his handsome face I reassured him that if he stayed I would stay with him.

Because Ken lived his life with Chron’s disease as well as AD., he had experienced several blockages. Following his battle of decades with Chron’s, the doctors removed several feet of his small intestine that was badly diseased. The removal of this important part of the digestive tract caused his system to discontinue absorbing important vitamins,minerals, other nutrients, and medications taken by mouth. With these facts the decision for Ken to participate in the scheduled trials was more than “iffy.” Later that week I called to see if a decision had been reached. Ken was disqualified as there was no way of knowing with certainty that the medications would be absorbed because of the missing section of his digestive system.

As Alzheimer’s continued over a number of years I believe his fear and paranoia left. I had no doubt that his shrinking brain had eliminated much of any emotion he may have had. I only hope that deep somewhere inside he knew that I never left him to be by himself. Alzheimer’s disease is a horrible thing to happen to anyone, and that in itself can justify fear to his progeny. No matter what the outcome, comfort may come from knowing that despite fear, medical advances and research bring hope for a future cure, or at least some way of control and slow the speed of decline. 

TAXES AND ALZHEIMER’S

WATCHING TV WITH ALZHEIMER’S

THE JOY OF NEW TECHNOLOGY

September 30, 2016 – Ken was a TV person right from the start. His generation of men were sports-starved before TV came along. Of course, before TV, and when a ball game was broadcast on a radio, the were glued to a speaker somewhere listening with all intent. Then when TV was allowed to broadcast a game, these same deprived men were glued to a couch watching their favorite team in black and white, do whatever they did to win/lose a game.

As TV advanced into color, giant flat screens with surround sound that generation believed they had died and gone to Heaven. Perhaps, even more-so as it all took place in the comfort of their own home. With certainty there were wives who shared the hours of sports during whichever season it happened to be: basketball, baseball, football, soccer, ice hockey and what have you. On occasion I did join him to watch, especially if I had a favorite player on a team, or it was one of the home-town teams.

Our most memorable game, however, was one of the games of the World Series when San Francisco and Oakland were dueling it out for the World Championship in baseball. The date was October 17, 1989. We didn’t see baseball that night, but we did experience the Loema Prieta earthquake from high in the stands of Candlestick Park in San ;Francisco. I am sure  those at home were nearly as panicked as we were feeling the stadium rattle the enormous light standards, the chairs, the scoreboard and the playing field. Eventually, we were sent home waiting further notice.

BUT BACK TO TELEVISION

Together we watched our favorite comedies, serious dramas, lots of PBS, an occasional movie, documentaries, and fast-breaking news.

It was a cold winter’s day in February 2009 when I looked at the screen watching a drama unfold. A remarkable pilot  had landed his crippled plane in the icy waters of the Hudson River in New York. I called Ken’s attention to the news story and tried to explain how awesome it was and what a miracle for the pilot and his crew to do what they did saving 155 lives by landing on water, a feat he believed he could accomplish. In a matter of seconds he had to decide on the river or an attempt to return to LaGraudia air field from where the flight began. With no time to return he chose the river at a busy spot because there would be lots of help.

ANOTHER LANDING AT THE MOVIES

Recently, my duaghter Debbie and I went to see Sully on the big screen with Tom Hanks as the captain. The production was intense and a feel-good movie. Ken would have loved it before AD robbed him of his mind.

I recall several weeks after the water landing, I watched a clip of the families and the passengers who gathered together to thank Captain Sullenberger and his crew for keeping their families whole. He was a humble man who appeared to shy away from the publicity and the word “hero.” “We were just doing our job,” he claimed. That evening I nudged Ken as he dozed in his chair and asked him to watch. “Ken,” I said,”this is so good and so remarkable. Just look at the TV screen and see all of those people who lived through a crash-landing into a river. They’re all alive and  mostly well. Isn’t that amazing?” My words fell on unhearing ears; ears without a connection to his damaged brain. He was unable to process what was in front of his eyes as the clip showed the passengers standing on the wings of the plane waiting to be rescued.

I so wanted to share that heroic story with my husband, but to no avail. He had become incapable of understanding and no longer felt the joy of life and the good things it had to offer. Alzheimer’s does that to its victims and their families. It is a thief of the worst kind. I miss that sharing part of marriage now that he’s gone to the other side, but before he passed I’ve (we’ve) missed sharing during all of those years of degeneration when he was gone, but not gone. Sharing with my children is good, but not the same.

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