VISITING OLD FAMILIAR PLACES
November 21, 2014 – In the early 2000’s Ken and I took our last road trip together where he did the driving. We toured west, then southwest to see places and people I doubted we would visit again: Friends in Utah, cousins in Nevada, more friends in New Mexico and more family in Colorado, then back through Utah and home again. All the way we came fortified with music we both enjoyed: Sinatra, Como, Dick Haynes,the Big Bands and a sprinkling of Liberace at the piano and in voice. As I had mentioned all of this in a previous blog many of those older tunes and lyrics touched our hearts, even then, as we both understood where this terrible disease was going to take us. As Liberace sang one of our old favorites Ken reached over and took my hand. Tears streamed down both of our faces as we accepted this deadly, unknown enemy with no weapons for defense. The tune was a romantic ballad: “I’ll Be Seeing You In All The Old Familiar Places.” The lyrics spoke of a chestnut tree, a wishing well, a park across the way and a childrens’ carrousel. At the time we both knew I would be seeing the remembered and familiar places by myself. Continue reading
VETERANS DESERVE THANKS ON ANY DAY
November 17, 2014 – I know it’s several days late following Veterans Day on November 11, but I spent that day in Oakley, California as a guest to the ribbon cutting of the city’s very new Veterans Day Memorial. I was touched by the ceremonies and as the day moved along, I felt gratitude for all of the men of service that I have known, and for those I have never met: all willing to sacrifice all they hold dear for America’s freedoms.
AN HONOR CIRCLE
My son Kevin, who is an Oakley City Councilman and rotating mayor has been working on the memorial project for several years. When it was suggested, the Council members agreed that it was a great idea, but the city had no funds for such a project. Over the years the committee has been selling bricks, holding fund raisers and accepting donations. These aren’t just any kind of red brick, but new bricks. For each brick the purchaser pays $125.00 to honor a veteran of his/her choice. The veterans’ name is engraved with the date of service and discharge date. These bricks along with many blank bricks (available for late comers who want to honor a veteran) form the main circle of the enclosure which also displays a beautiful marble pillar to recognize and honor each branch of the military.
CHISILED IN STONE
Rather than stone, I should say brick. In honor of Ken’s service as a Navy man Kevin purchased two bricks: one for his Navy service and another to commemorate his years in the Merchant Marines (now recognized as an additional branch of the military). Next to Ken’s bricks is a brick with “Nicholas Romick” Ken’s father for his World War I Marine service. Council and city officials were pleased to have an extraordinary large crowd in attendance.
A DEDICATED ESCORT
Jumping from Oakley to other ways of honoring our veterans on Veterans Day. I have watched on the internet as many of our veterans, whose war injuries have been fatal, are escorted to their final resting place by a motorcycle brigade riding along side with American flags flying honoring the fallen service man. The escort is provided by The Patriot Guard Riders, a group of veterans from every walk of life whose unselfish purpose is to see that all veterans receive the honor they deserve. The organization is nationwide.
Through Kevin’s involvement in his city’s government he has had contact with one of the local groups of Riders. As we planned for Ken’s funeral service, Kevin asked if I would like a military escort from the church to the cemetery. My answer was a definite “yes.” I knew that my husband would be pleased, and as an owner and often rider of a motorcycle, he would have been riding with the honor riders had health circumstances been different for him. He was proud of his service to his country and for the eight-year stint served by his father, and for the service of his son-in-law and his grandsons. I was grateful for the honor riders and for that last patriotic salute by his fellow veterans.
HALLOWEEN IN THE PAST
Novemer 1, 2014 – It’s been less than a month since Ken escaped from his dungeon of Alzheimer’s disease. It’s been a long haul for both of us. Actually all of the family, as the cruel disease stole the life and personality, memory and joy from the main man in our house. We all miss him terribly which, of course, is natural.
While Alzheimer’s steals memory from the victim, the family is blessed with remembering how life was without the demon AD and what fun, for the children, and me to fondly remember the good times.
And while I won’t paint him a saint, nor myself, he was a good man with all the crowns that are attached to that title: kind, thoughtful, considerate (mostly), loving, gentle and firm, understanding, but strict and devoted to his family.
When we were a smaller family with just two little girls and Halloween arrived, we put the costumed twosome in the car and drove a 60-mile round trip so his parents could enjoy their granddaughters as trick or treaters right at their front door. Grandma screamed with delight as she saw past their painted faces and silly hats, picking them both up she covered them with grandma kisses and lollypop hugs. Grandpa was just as delighted giving the little ones their treat for the evening. My good husband had already driven a 50-mile commute to and from work, but thoughtfully considered what a visit to his parents would mean to them at the end of his long day.
A FUN DATE
Then there was me to consider when we received an invitation to a Halloween party where we were to dress up as a TV show. Our hostess answered the door in black shorts, black shirt and her son’s toy six shooters hanging at the hips. Palladin: Have Gun Will Travel. We came representing The Untouchables. I doubt he could pass as Elliot Ness the great crusader, so he appeared more as a boot-legger while I eased out as a flapper: head band and all. He could have been a wet blanket and refused to dress up for a kid’s holiday, but he didn’t. We did that for one another. We went places and did lots of things we might not like doing, but to make each other happy and enjoy life, we were supportive of one another.
THE FIRST YEAR OF GETTING THROUGH THE SPECIAL DAYS
I suppose that’s part of this first year of being alone. I’ll just have go through these familiar dates, remembering the good times with smiles. Of course grandson Karl helped this year. He hosted the treats and greeted all the small, and not so small, visitors as they wandered from house to house with their pumpkin carriers bursting with candy. “Trick or treat” and Happy Halloween.
A VISIT TO THE ER
October 26, 2014 – When do we actually make life decisions? It was many years ago when both Ken and I were younger and much healthier than we have been these past few months. A long time before either of us thought about a life-ending situation. We were new grandparents back then with decades ahead of us when we would watch this new generation grow and develop as they rebelled and struggled, as did their parents, before reaching adulthood.
DECISIONS FOR THE FUTURE
It was one of those evenings when either my heart was palpating or Ken was having a Crohn’s disease attact that we entered the ER of our HMO hospital explaining our need to see a doctor and be evaluated.
Taking the needed information the admitting nurse then asked,
“Have you filled our your Advance Directives?”
“No,” one of us replied. “What are Advance Directives?”
Within a few minutes she had covered all the information they would like to have on file which would state our wishes if we were unable to converse with authorities at some later date. She then slid the forms across the counter for us to take home and fill out.
It was one of the most important life decisions one can make. But admittedly, this was not at the top of our “To do” list so they were placed with another stack of papers to do later.
TIME MARCHES ON
And it was later, much later when I ran across them as I was going through stacks of papers as we do periodically when cleaning and tossing, especially the office.
I briefly looked them over once again and said to Ken, “As much as we want to ignore this, it is wise to get it done so the hospital will have them on file. We just don’t know what the future has in store.”He agreed, even though neither of us planned on leaving the planet on the next bus.” Our discussion suddenly became serious as we perused each section discussed these important decisions.
“If I can’t have a quality life, then I don’t want any heroic measures taken to prolong my existence,” he said. On that we both agreed
So if there are no breathing machines, what do we want them to do was the question at hand? Did we want life prolonged with a feeding tube? Did we want a possible bout of pneumonia reversed with a treatment of antibiotics? A UTI infection?
We both agreed that there would be no feeding tube, but backed down again when it came to treating pneumonia and other infections. It was then that Ken remembered what he had said following the funeral of his parents as each had succumbed to Alzheimer’s loosing all memories and just lying in bed waiting to die, but not knowing it. “I don’t want to end up like my parents,” he had declared with absolute finality.
So when the ER doctor asked, “Do you want us to treat him with antibodics for his infections?” which had already been put in place. With my son, Keith, nearby, I said, “Remove the antibodics.”
“We’ll get him a room, and change the instructions to “Care and comfort only,” the doctor said kindly.
Those were the most difficult words I have ever spoken, but remembering his words of years before,” and having witnessed his illness for what seemed forever I knew we had made the right decision. He had already lived with more than 14 years battling Alzheimer’s. Heal the infections and bring him back to face more of the same? Why?
ALLOWING IT TO END
Allowing him to go and not have to continue the terrible journey into the dark corners of the AD dungeon was my final act of loving this man who had been everything to me for nearly 65 years. How could I not let his spirit soar back to God who is our home?
COMING FROM OUT OF NEWHERE
As a person with severe Alzhiemer’s spends more and more time inactive or in bed, bed sores or pressure sores, which is what they actually are, become a problem. They occur when the skin begins to discolor due to lack of blood flow. As they progress, the patient loses layers of skin, exposing tissue under the skin. It is an ulcerated sore that becomes very painful and enlarges. Sometimes they come so quickly it’s an unwelcome surprise. My first experience was with my mom before her passing from Alzheimer’s.
EATING, ALWAYS A PLEASURE
September 29, 2014 – Eating has always been one of Ken’s delights. He was one of those men who could put on 30 lbs., have butter-ball cheeks, and then, within his designated period of time, easily take the weight off. When we met he weighed under 170 lbs., which put him on the skinny side. He was working at the Santa Fe train depot as a telegrapher and hadn’t learned how to budget his money very well. Being paid only once a month, he and his roommate lived the last week or so near the end of the month on not much more than oatmeal three times a day. Boring as his diet had been he still appreciates a bowl of hot-cooked oatmeal.
A CRAZE BRINGS ATTENTION TO THE DEMENTIA UMBRELLA
September 12, 2014 — One of the latest ways to bring attention to a disease is the Ice Bucket Challenge. People either give a monetary donation, have ice cold water with ice cubes dumped on them, or do both. The recipient of this gesture being research, for ALS or Lou Gehrig’s disease, nick-named after a well-known ball player of yesteryear. The challenge, especially when done by celebrities, is meant to brings attention to this life-destroying diseases. Amyotophic Lateral Sclerosis attacks the nervous system, then the brain of its victims and is always terminal. Like Alzheimer’s, ALS is one of many numerous diseases classified under the dementia umbrella.
THEY ALL NEED A CURE
Those in our family who took the Ice Bucket Challenge dedicated their donation to Alzheimer’s remembering their grandfather, my husband Ken. There was no paparazzi standing by when great grandson Joaquin and his friend Gavin, both of Brentwood were dumped with a bucket of ice-cold water. Gavin, by the way made his donation to fight breast cancer. There were no photos in “People” magazine, and no frenzied fans shouting their adoration. Their unselfish contribution was done not because supporting and donating to Alzheimer’s disease and breast cancer is better than donating to ALS, but because all of these horrible illnesses need the attention and the research to find answers: how and why they attack the brain or body, what causes these diseases and how can they get cured?
Presently, questions about those brain destroying diseases have little or no answers, but the question that was brought to the attention of readers of the article about the “Ice Bucket Challenge for ALS Attention” from one victim’s wife was, “What good is this doing other than bringing more attention to celebrities who hardly need any more publicity. “Wouldn’t it be better,” she asked, “if they simply and quietly donated the sum of money instead of using one of these painful death sentences as a photo op.” I agree, to a point, but for me there can’t be too much attention brought to any of these fatal ailments where the final goal would be a return to good health and saving the life of a loved one. She went on to explain how it felt as the wife of an of ALS Victim.
LIVING WITH THE VICTIM
While I can agree and understand her feelings and frustration I am one, as I am certain she is also, who would like to find answers and cures. If I believed that pushing a peanut down Main Street with my nose would aid in finding a cure I would be willing to give it my best shot. I have been that way since the beginning of Ken’s illness. I’ve tried anything and just about everything including garlic, ginger, double helpings of broccoli, coconut oil, curry, then turmeric and even a “happy” cookie from a hippie-type relative. If I thought for even a minute that a good serving of bat guano would help my husband return to the man he was, or break through the mystery maze of brain disease, I would stir up an ample helping, add butter. a little salt and hold out a spoon coaxing, “Open wide.”
I’ve noticed that even suggestions for holistic treatments are beginning to grow dim as the years of study, research and experiments on lab rats is slowing. There was a post where I read that because of the lack of any real marked successes, some researchers were concluding that Alzheimer’s disease was without treatment or cure. My heart aches for the generations to come and the fear and dread that comes to children of victims anticipating the possibilities of an unknown future.
Every caregiver suffers as well as the victim. It doesn’t matter who the loved one is: mother, father, sister, in-laws, aunts, uncles. children or husbands/wives. However, the caregiving spouse, including me, is in a never-ending state of mourning. Depression and the constant feeling of foreboding and lonesomeness, all fought valiantly with every waking fiber within me. These feelings follow me around like a black cloud reminding me constantly that the man who sleeps in a hospital bed in our family room is dying. Whether it will take another year, another five or longer, he is still slowly dying.
My feelings of lonesomeness aren’t because there are no friends or family nearby. My home almost rumbles with people. I miss sharing with my husband. I miss the companionship: with him not being available to hear my complaints or good news. I miss going to movies with him, a lunch or dinner date, even shopping gets lonely. I miss him next to me in our king-size bed. But I do believe that what I miss most are the hugs and kisses — especially the bear hugs and the joy that comes from loving this man.
Sorrow is masked with cheery hellos, forced smiles and an “I’m fine attitude.” There’s no sense in spreading the doom and gloom to others. People have their own worries and problems. The caregiving spouse must gird up his/her loins and go on mainly because there isn’t any other place to go except “on.” We just need to keep in touch and bolster up one another (Cheers for social media and support groups.)
The Ice Bucket Challenge has brought attention and money for ALS, but the greatest challenge for all those who find themselves directly involved with any of the other diseases under the dementia umbrella, is maintaining a positive attitude and greeting each day in a salute to life. Once in a while Ken manages to say something that makes sense no matter how unwittingly. Today he said with absolute clarity, “It just isn’t fair.”All of the victims and caregivers within earshout will totally agree.