STATS TELL A STORY
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 four 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:
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 home for 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.
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.
October 7, 2016 – I know! Here it is quickly approaching the Holiday Season and I’m still working on my income tax. Thank goodness for extensions. I don’t mind getting it all organized for my accountant, who is also my daughter Julie, it’s just that there are more fun things in life than crunching numbers.
KEN’S FORMER JOB
Before Alzheimer’s became a constant in our lives, organizing, crunching the sums and totals, multiplying and divding, and a lot of subtracting, Ken spent a good portion of February getting the information ready for our accountant, who at that time was not Julie. Not only was Ken the organizer and math guy, he was also a bean counter, actually a nuts, bolts and nail counter. He laboriously printed all the information on a yellow tablet sheet in neat, crisp engineer’s printing and photocopied enough copies for himself, the accountant, the file and me so we could follow along as he made his presentation to Mr. Wilson.
Each year our then accountant advised Ken that if he condensed the expenses of our rental property in a more comprehensive manner, he would charge less on his bill to us. “Ken,” he would say, “You don’t have to give me the detailed list of every piece of hardware you buy. If it’s a wrench you can just add it to ‘tools,’ or ‘hardware’ just keep the receipts in the event you get called in for an audit. My precise husband would smile and say, “It’s okay, I like to do it this way, then I know how much each rental is actually costing me on a yearly basis.” Defeated, Mr. Wilson would just sit back in his swivel office chair, spin a little in either direction and agree to relieve his frustration saying, “Okay.”
Then the inevitable happened when Alzheimer’s is part of the family. The time had approached when documents and statements of interest paid papers and other documents began arriving. He showed them to me which was unusual because more often than not he began hiding bills and other important mail because it belonged to him, so I had no right to know, see or handle it. But knowing they were income tax papers he admitted to me that he didn’t think he could do the taxes that year. “How about I do them this year on the computer,” I suggested. “Would you?” he asked handing me the paperwork. I was relieved because I wondered how I would get them away from him as the disease took more and more of his mind.
A NEW ERA
Successfully, I put everything on a spreadsheet and we made an appointment with our accountant downtown. It went more quickly as I was not a bolt and nut counter, I just did it all my way. I did like to share the April 15th date as Ken did and get it in on time, but not this year, I seemed to be dragging my feet and asked Julie to send in an extension for me. She did, and this past week I’ve had my nose to the grindstone getting my information all together.
At best I am still a :Computer Dummy,” so I still need a lot of instruction. I knew the printer was out of ink, so I thought I would just copy the pages and email them to her. I don’t know how to make that work, and have completely forgotten how to send attachments. I did get one page onto the email, but it seemed to freeze and I could not send or edit it, or even address it to Julie, so I did what I do best: delete. In the end I copied the information from the computer onto a yellow-page tablet with totals on the right and hand delivered it to my daughter vowing that before next April I would learn a bit more about this marvelous machine that is still a mystery and challenge to me, as it is to many of my friends. Wish me luck, 2017 is almost here.
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.
WHAT DAY DID YOU SAY IT WAS?
September 23, 2016 – Calendars were tricky for my mom. That was one of my mother’s complaints as she entered into her years of battling the grim disease of Alzheimer’s. “I don’t even know what today is,” she grumbled in frustration. It was Saturday and Ken and I had gone to their country home for a visit. This, of course, was long before my husband entered into his own battle with the debilitating and incurable disease of Alzheimer’s. “Why can’t I ever remember, or why doesn’t someone tell me what date it is. I don’t even know the time,” she continued to lament. I reached over and gave her a long hug, assuring her that I would try and find a remedy for her problem.
My dad sympathized with her, but grew a bit angry himself when she became so upset about not knowing the calendar as she once did. Everything that had to do with the calendar; the day, the date and what time it was perplexed her. “What does it matter,” he would ask her. “We don’t have any plans and I’m not going anywhere. When it’s Sunday, I’ll wake you so you can get ready for church, and when it’s time to leave we’ll go.” “Okay,” she beamed. “Would you do that for me.” Lovingly, he replied, “Of course, mama.”
We stayed, had a small supper with them and then returned to our own home knowing that my dad was able to care for this woman to whom he had been married for nearly 65 years. But even that was an unknown as she became more and more lost in her beginning dementia.
A CALENDAR IS THE SOLUTION TO A SIMPLE PROBLEM
Seek and ye shall find, you just have to look in the right place. We went to the mall together, as we did most everything together now that Ken had retired. It was fun spending our spare time with one another doing things we had always enjoyed. In buying gifts I never did have to coax him to go, he liked buying presents for people for birthdays, anniversaries and Christmas.
Before we left home I said that we should begin with clocks. “Clocks tell more than just time,” I reminded him. You can program them for calendar dates, days and time. There is everything she needs to hang on to reality.
Our sales associate showed us a number of different clocks with the same set up. We chose a small one which could be held in your hand. “It’s easy to program,” he assured us, and it was.
HAPPY WITH HER NEW GIFT.
On our next visit I gave her the present wrapped in birthday paper with a card. She was pleased beyond words. “See, Mama,” I explained, push this lever and you have the time. Push it again to a different notch and it shows you the day and date. It even had an alarm, but I didn’t bother with that, it would only add to her confusion. I wasn’t sure that with all of it’s levers and buttons to push that she could even program it. But Dad could, so I depended on him to keep it running, the batteries fresh, and reminded him of the alarm feature in case he needed it. I left the directions for Dad, and when the sun began to set we left.
DID IT WORK?
When she asked Dad about the day and date, he directed his wife to the new calendar clock explaining which small window would give her the needed information. I am sure, however, that as the disease became more and more evident, the clock that told all, lost it’s value to her, but not to him. I know that she would never be able to program it and all she would do, if she started pushing buttons would be to make it so confusing that it would become useless. But for the moment it was what she needed and Mama could put her troubled mind to rest for a while knowing briefly the answer to that never ending cakendar question “What day is it.?”
WAKING UP ON 9-11
September 16, 2016 – I know it’s a week after the anniversary date of such a horrendous happening which took place just 15 seemingly short years ago. I am sure we all remember where we were and what was happening in our lives on that terrible day in 2001.
Ken and I were just waking up on the West Coast of the USA. As was his habit long ago, he reached over and snapped on the TV. We both gasped as we watched a plane crash into the second tower of The World Trade Center. Here was terror and disaster happening right before our very eyes and we were witnessing it along with the rest of the world. All that day it never stopped: The news was filled with one grim report after another. It was as if the United States of America had entered into a war. And it truly was a war that has continued for more years than we could have imagined.
ATTENDING THE MARATHON IN 1996, LONG BEFORE THE 9-11 ATTACK
Before Ken was blindsided with Alzheimer’s he was a runner; not a serious runner, but a runner who competed against himself. He actually did rather well considering there weren’t many senior citizens who ran and completed a marathon, but the completion times were listed in the papers, and he was either No. 1 or earned the 2nd or 3rd number in his age group.
Part of the gift package the runners received was the defining sweatshirt with New York’s skyline which included the Twin Towers, the year and the word “Finisher” printed on the front. He wore the shirt proudly until his death in October of 2014.
Even as he battled Alzheimer’s I mended, then revamped the imaged logo onto a new gray sweatshirt so he could wear it for as long as he lived. The sad part was that as he drew near to the end of life, he no longer recognized what the shirt was or what it represented.
We told ourselves that the Twin Towers would always be there even next time. We planned to come back for another visit to the Big Apple in a few years. So we nearly passed up our promised lunch date at the Center. We did visit at night. Everyone said we must go at night because the view was so spectacular. The view was everything they said it would be, so we came back the next day for lunch to view the city during the day. Just the day before we had visited the Statue of Liberty and then on to Ellis Island where Ken’s father had been an immigrant boy of 15 in 1906 during the heyday of mass migration from Europe just after the turn of the 20th century. Our memories of the fabulous landmarks were a joy for us to remember, especially me, as he soon drifted further and further into the lost world of Alzheimer’s Disease.
And now the towers are gone, but a double beam of light reaches into the Heavens as a reminder of all those innocent people who were lost that day, and the brave respondents who sacrificed all doing their jobs.
I am blessed to remember New York City as it was when my dear husband and I were together getting acquainted with the Big Apple. Knowing that in the afterlife he now remembers us and our days spent together and the happy times we shared. Remembering 9-11, I am grateful for the years that followed when he was lost in the world of Alzheimer’s, and I able to care for him “Till death us do part.”
I still have the gray sweatshirt with the twin towers and “Finisher” printed across the front. When the days are cool I wear the now-somewhat-shabby souvenir basking in the special warmth it gives me because it once belonged to Ken and reminds me of a time when our nation had peace before that dreadful day of 9/11.
WHATEVER HAPPENED TO?
September 9,2016 – The tabloid headlines have changed and I didn’t even notice. Since my husband Ken disappeared from our lives two years ago, after being kidnapped, and held for nearly 20 years, by the demon Alzheimer’s, time has flown and still it moves on and on bringing with it changes in everything. Our family has changed and now that I have time to notice, even the headlines on the tabloids at the grocery store aren’t recognizable.
During the 60s when folk music was so popular, they sang about “Where have all the flowers gone?” I would change it today to “Where have all my movie stars gone?” I do my grocery shopping at the local supermarkets, and as I stand in line I have often picked up a tabloid or two as I wait my turn with the cashier. I look them over to keep me in the loop. Glancing at the headlines the names have changed and I must ask myself whatever happened to Clark Gable, Jimmy Stewart, Gig Young, Doris Day and her leading man, Rock Hudson. Where is Betty Grable, Cary Grant, Deborah Kerr, Bert Lancaster, Lana Turner, Bob Hope and Bing Crosby? My list could go on and on. Their time in the limelight no longer fills the gossip pages of today’s tabloids. Even the popular movie magazines from the past, which we read from cover to cover, have vanished. What’s “US” got to do with the movies anyways?
OLD HEADLINES WITH A NEW ENDING
Going online in search of the stars that filled the movie and TV screens of yesteryear I find them, at least most of them. The name pops into view with different news, birth dates and then comes the obituary. Most of the stars that Ken and I grew up and older with, seldom missing any of their movies, have left the planet.
Picking up the latest People Magazine I flip the pages and realize that not only are my stars missing, the pages are filled with photos, articles and headlines about the latest new parents, married or not, divorces of those who did marry, personal quotes from “a source” giving out guarded information about a new couple spending their shared vacations in Hawaii or some other romantic spot, while the former discarded partner laments about their once-happy life stateside all alone, and lonely.
I don’t even know these new people who fill the pages with news of celebrity comings and goings. I look at the faces and names and come to the realization they are to me, and would have been to Ken were he not lost in Alzheimer’s, unrecognizable and without importance, especially in the life of a demented patient and a full-time caregiver.
Do I feel out of the loop because I have no identification with this new breed of Hollywood? Of course, because I AM out of the loop. I have found that after years of being a caregiver other things have become much more important. BOTTOM LINE: I don’t really care who the new headliners are or who will be the next American Idol.
I would rather bring out an old LP, dust off the turntable and listen to Doris Day. Now that’s a celebrity . Hearing her fabulous voice is well worth the time invested. So, join me, kick off your shoes and listen as she sings Que Sera, Sera, (Whatever Will Be, Will Be) and don’t worry about those celebrities you don’t recognize or those unfamiliar headlines. In another 20 years, our progeny will be wondering whatever happened to Lady Gaga and “The New Kids On The Block.”
September 2, 2016 –Thoughts of the Alzheimer’s gene pool are always on my mind. My father died of Alzheimer’s as did his parents and my maternal grandmother. My mother’s generation seems to be spared. I am 65, about the age of my father when he was first diagnosed. Every time there is a lapse in my memory; I lose my keys or my car, I can’t remember a name, a word, a place, I feel a little disoriented, I wonder, is it age? Or the gene pool?
I have many health issues. Diabetes II for almost 25 years, leaky-gut syndrome, (or my father’s Crohn’s disease?) A brain scare 2 years ago. A lung, heart, and kidney scare this spring. I am not a hypochondriac, but the gene pool is always there taunting my health. But I have health in my favor too. According to my doctor, my weight and body fat are perfect for my age height and gender. I am super-conscientious about what I eat to the point where my blood sugar is in a stable and healthy range and I am easing off my diabetic medications. I exercise and I take supplements. I am a fighter and I’m not ready to leave, my life, my family, or my work. I w ill continue to fight and research as I try to push the gene pool out of my brain.
But how likely am I to inherit this disease? According to current research, unless it is early onset Alzheimer’s, occurring as young as 30 and before 65, I’m not. It seems that the best prediction is age. The older you get, the more likely you are to get Alzheimer’s. The statistics of those affected are staggering. According to the Alzheimer’s association http://www.alz.org/facts/overview.asp#state , more than 5 million Americans have it. But, Alzheimer’s is a disease of the elderly and as that Baby Boomer bump arrives at old age, the number of people afflicted will rise.
Perhaps I am looking at the prospect of having the disease, of care costs involved, through the rosy lens of a family that was prepared and a mother who was willing to give up the middle part of her life in that noble endeavor. Though caring for a person with the disease is by no means an easy or inexpensive task, it is doable for a family. My father’s mother came from a very large family of 11 and many of her siblings had dementia of some kind. I remember as a little girl visiting in Colorado and some of her siblings even then must have been afflicted. Many people have stories of their crazy aunt or uncle, cared for by family and this family was no exception.
I think as my generation and our children face a future of Alzheimer’s, whether from the gene pool or just increasing age, the responsibility of family for in-home care needs to be re-emphasised and encouraged. It is tough. It means that careers need to be put on hold and sacrifices made.The expectation that society or the government must be there to help needs to be turned around.
My children are facing a future that is full of economic uncertainty. The fact is there is not enough money in any program to care for the prospect of all of these older people getting old. I believe that perspective must change and that family, whether through blood, or relationship must begin to take a more important role in caring for the elderly. Whether a result of the Alzheimer’s gene pool, or aging in general, it is part of life. Taking the time to provide for an older generation is a task that improves the lives of everyone. It is not something that is going to go away because it is costly and unpleasant. I believe that future generations will learn valuable lessons as they find that caregiving is an important life lesson. I believe their lives will become richer and blessed as they accept the responsibility of caring for their elderly, with or without Alzheimer’s .
This is a guest post from Deborah Schultz. Ann Romick is on vacation.
SERVICE WITH A SMILE AND A GOOD APPETITE
ANOTHER KIND OF SERVICE
August 26, 2016 – As caregivers we have become conditioned to the definition and expectations that one who is a caregiver or one who gives service morphs into someone who is dedicated to helping others at whatever cost it may take from the caregiver. Caregivers for family members may not have planned on this service job which may be a “job” never anticipated and often one where the training comes through experience, reading, gleaning advice from others or any other reference which might be helpful to this “new” unexpected career.
However, there is another kind of service. I suppose I could have hooked it onto last weeks post. All people in need do not necessarily require one who is at their beck and call to run errands, clean their houses, care for wounds or even supervise a bath or shower. Needs are as individual as is the recipient.
LINKED TOGETHER BY NEEDS
There are many people in our world, who have a need, and it’s a charitable need. No matter their own health condition, often encumbered by a wheel chair or other medical aids, whose life has always been spent in doing for others: wives devoted for caring for their husbands, mothers dedicating a lifetime in caring for their children, and women, in general who volunteer in all sorts of service projects. Many volunteering their time at various agencies in caring for the disadvantaged. These people are content and are happiest in doing for others even though through aging and medical issues would fall in the category of “patient in need.”
CASE IN POINT
My friend Jayne, and I written about her in other posts, and in my forthcoming second book, “Journey Into The Fog,” is one of those people. She was a live-in caregiver for my parents. She stayed with them, when I couldn’t be there until they both passed. My mom went first and nine months later my father.
And now she has failing health. I strive to be there for her to do those small things she cannot. However, she somehow manages to get things done, and she does have an aid who comes bi-weekly to help with showers and other personal needs.
Jayne is happiest, though, when I accept a dinner invitation: for me alone, or will include my daughter Debbie when she is visiting from Utah. Jayne fusses too much, and won’t allow us to contribute even the dessert. She does ask, at times for me to heat something in the microwave which is located above the stove and beyond her reach. Her meals are delicious and often more than we can eat. So for a hug and a compliment about the food, we leave in due time and she insists on cleaning her dishes without our help. She just enjoys her ability to still do something for others. What we give her with our presence is not only our company, but the joy that comes from doing something nice for someone else: Serving others.
It’s important to make sincere allowances for all to extend loving service in a manner they can do, even if their physical abilities are limited. So, if a disabled friend invites you for dinner, go, enjoy yourself, and allow her/him to extend service in their own way. But try to help with the cleanup, no matter how much she refuses. One day I will win the battle with Jayne.
CHANGES TO WATCH FOR
August 19, 2016 – We are never the same today as we were yesterday, nor is anyone else. However, we all have times in our life when we make subtle changes. Usually changes mean nothing, or a temporary whim or experience will cause a reflective change in personality. This doesn’t necessarily indicate anything serious, but it could mean dementia, which could include any of the dementia diseases such as Alzheimer’s which is the most common of the dementias.
MY EXPERIENCE IS WITH ALZHEIMER’S
As my readers know my entire blog is made up of my experiences with various members of our two families and with my husband, Ken, who first began showing signs of AD in the mid and late 90s. His release from the torment of AD came in October of 2014. These subtle changes may not be noticed by others, but because of the close relationship of husband and wife the mate often spots the irregular change long before any changes become obvious to others – even their children.
SAYING HURTFUL THINGS TO OTHERS
Ken was known for his friendly personality, his affability and his gregarious nature. He loved people, especially family. That was why I was so shocked when my sister, Janet, and her husband, Douglas, paid us a visit. Douglas had been diagnosed with cancer and wouldn’t live another year. As we sat together in our living room Douglas mentioned that he felt cold. In his weakened condition he became sensitive to lower temperatures wherever he was. I moved toward the thermostat to click it up a notch. Without thinking of his ill brother-in-law Ken said in a loud and rather brisk manner, “I don’t understand how anyone could be cold, I’ve got the temperature turned up to 68 degrees. If anyone is cold, there must be something wrong with them.”
I felt horrified that my kind and caring husband would be so rude to this dear man who was, basically, dying. I stepped forward and pushed the thermostat up a few degrees even though for Ken it would be too warm, but I reasoned it would only be temporary. Meanwhile I got a blanket for Douglas.
Falling and loss of balance could be an indication of an approaching dementia. I didn’t notice that he fell often, but I did notice that he became clumsy, stumbling over his feet every so often. What I did notice, even more, was that if Ken filled his arms with too may objects he would drop some, if not all in an effort to keep them together, especially if he reached out to open a door or to switch on a light with the other hand. He did that one night as we were returning from a pot-luck dinner. The bowl, the salad dressing, tongs all went flying as he reached to switch on the light.
WHAT’S SO FUNNY
Ken had a contagious laugh and was always one to enjoy a good joke. As Alzheimer’s chisels away at the victim’s brain humor often goes by the wayside. His mind lost the ability to grasp the humor of a Double Entandre. In another direction, my mother always taught her girls that sarcasm was the poorest form of humor. Yet, in today’s society, sarcasm has reached great heights in the comedy world and a quick mind which uses the form is considered very intelligent even though the form can be biting or insulting for the individual to whom it is directed. Nevertheless, it is extremely popular within the populace. Those living their lives in a demented state usually miss these subtle forms of humor.
AGGRESSION AND “THIS IS MINE”
We had been visiting my sister once again, after Douglas had passed. Arriving at their cabin on the lake, a young man had been assigned to hand out leaflets concerning the coming homeowner’s meeting. Ken took the paper. Janet said, “I’ll take that Ken, it’s for me,” and reached out her hand. “It’s mine,” he glowered, “the boy gave it to me.” “But this is my house,” my sister retaliated, “it’s meant for me.” He became enraged with her reminding her that the paper was given to him.
Not having experience with a dementia patient my sister began to argue. In his anger I thought for a moment he might hit her. I redirected him to a chair on the deck and he calmed down giving me the paper, and then we went for a walk. His reaction was so unlike the man I had married.
Ken’s eyes often danced as he talked with people, yet I noticed, especially as the disease progressed, that instead of good eye movement, he eyes became blank, not looking at anything, just starring off into space.
EXPLORING THE WORLD LIKE A CHILD
We see it with babies as soon as they begin to crawl, and even before. Anything on the floor is a curiosity to be investigated. And when the object is captured in a tiny hand it immediately goes into his/her mouth. Puppies are the same and so are some people suffering from a dementia-related disease. Activities were next to impossible to introduce to Ken as everything I offered went into his mouth. Large puzzle pieces, crayons, pencils and whatever I offered he tried to eat. He once grabbed a handful of screws while my handyman tried to repair a caster on a small table.
My mother, my patient a few years before Ken became ill, tried to scrape the flowers off her dinner plate, and then chewed her flowered paper napkin in an effort to remove the printed petunias on the paper. When she could get a pencil she would pick up a book and begin correcting the grammar, punctuation or syntax on the page she was reading. She did that until she could no longer read.
UNDERSTANDING FROM ALL CONCERNED.
Apparently, that’s one of the most important keys in being a caregiver. When you have an understanding of the disease, and are able to grasp the full ramifications of what is happening to the victim, then the support system can be more prepared to cope with all that’s going on and all that the future has in store with this painful experience. Read, learn. apply and be “there” for your patient. Remember, they can’t help what is happening to them, but “we” who are “there” can help them.