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PARENTAL CAREGIVING, THAT’S NOT ALZHEIMER’S
August 29, 2014 – Though caring for someone with Alzheimer’s is difficult, parental caregiving has got to be even tougher. What if caregiving started at birth and lasted until the length of that child’s life?As a caregiving spouse, I do believe it is the most exhausting, painful, devoted, heartfelt, involved, dedicated and most difficult job (calling) in the entire world. As a caregiver I also know of those moments of joy that are a part of caring for a person with either a physical, emotional or mental disability. What kind of people lovingly take on that responsibilty, knowing that when they are finished, it is because their child has probably left this earthly life?
WE NEVER KNOW WHAT OTHERS ARE GOING THROUGH
My experience by comparison to some others is very limited. Caring for Ken’s parents, my mother and now Ken has put me through the wringer of life for a good portion of my many years. However, I have never experienced caring for a disabled child who has lived a lifetime locked in a crippled body, born with a severe case of cerebral palsy. I’ll call him Mike. He would have liked that. It made him one of the guys even though he had matured and grown in age to an adult male of 50.
Family members have been his caregivers. Watched over by siblings, but cared for by Mom and Dad. I’ll leave it at that – no names: just Mom and Dad.
SPECIAL GRANDCHILDREN FOR SPECIAL PEOPLE
I became aware of Mike through my grandchildren. In our area there is a program sponsored by our local recreation department where activities, games and outings are provided for adults with disabilities. For nearly 40 years these grandchildren have been involved with the program as teachers, assistants, clean-up crews, crafters and hands-on caregivers. The older grandchildren started as a summer job, bringing their siblings to work as volunteers. After gaining experience, when they turned 16, they were hired as employees to do what they had been doing. For many it turned into a regular job even after the summer season had ended. Remembering when it all began with grandson Michael, then Sean, Alan, Liz, Katie and now Kristina I was pleased with these grandchildren’s generous hearts and willingness in providing compassionate service. They all knew Mike who responded to all of these caring young people with a big smile and bright eyes: his tools for communication. He was never able to develop skills involving speech, so all of his talks with friends were done through emotions which could be read on his face.
DR. SEAN IS HERE TO HELP
Sean had a special way with Mike, being able to tease him with humor and gestures. Mike teased back with smiles and laughs. Sean continued his education and is now a practicing chiropractor.
Mike’s dad, realized because of Mike’s condition there were many times when he would become rigid and uncomfortable. That’s when Dad asked Dr. Sean if he would adjust Mike to bring him some comfort and relief. Whether it was an office visit or in Mike’s own home where Dr. Sean also adjusted Dad whose back was beginning to show the years of wear and tear from constantly lifting his son; Mike and Dad always felt better.
CAREGIVING IS A CALLING
One of Ken’s caregivers, Crizaldo, claims that “Caregiving is a calling.” I have always agreed with this. Mike, who passed on last week from natural causes, had two special caregivers, Mom and Dad, who were, indeed, called to care for him. Together they have provided him with bounteous love, patience. understanding and unconditional devotion. Hats off to Mike’s Mom and Dad.
May all caregivers be as loving and dedicated.
For more information go to: http://www.nbcnews.com/health/health-news/disabled-adult-child-can-mean-uncertain-future-parents-f8C11379333
DEMENTIA – A STARTING POINT
August 24, 2014 – What is dementia and how does it relate to Alzheimer’s? Years ago they said that he/she is getting senile, or he/she is entering into their second childhood. If a loved one became cross or cantankerous one might say, “He/she is having a moment of senile agitation.” Then an observer could quickly cut to the chase with “He/she is downright crazy.”
Over the years descriptive words and terms do change. It wasn’t political correctness that brought about the change from yesteryear, it was a more conclusive definition that brought the word dementia into use as the more descriptive and popular term to describe loss of cognitive reasoning. The explanation from one dictionary is “a condition of deteriorated mentality.” Continue reading
A QUESTION OF FORGIVING
August 17, 2014 – Where is my help? Where is my family when I need them? Where are my friends in my hours of want and and where is that soft shoulder to cry on?Why should I be forgiving when I ask these questions without an answer?
Most were there in the beginning. Whether the disease is Alzheimer’s, Cancer or any other life threatening illness there appears to be lots of verbal support when the dire announcement is first acknowledged and then made public to any and all concerned. “My father, mother, sister, brother, wife, husband or child has such and such disease.
Almost universally the response is, “What can I do to help.” It is sincere and from the heart in most cases. I say that because there will be some in your address book of friends and family whose thoughts are more like, “How can I escape from this sad news?” “I just can’t deal with it.” “I don’t want to hear any more about Alzheimer’s.” Continue reading
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START WITH HELP FROM ABOVE
August 8, 2014 — The most important of all Alzheimer’s tips, and it sounds like a tall order: trying to make life pleasant for all involved in the world of Alzheimer’s. An impossible task one might say, but that’s the goal. For me, being a woman of faith, that’s where I begin: with faith. After you’ve talked with doctors, family, friends and any professionals who are experts in the field of dementia, there is still one more support system. For me it’s my Father in Heaven. For those who might not feel comfortable approaching Deity, then do as they do at AA meetings. Turn your thoughts, attention and gratitude to a higher power, and most importantly make the Serenity prayer a part of your day. You know the one: “Grant me the power to accept those things I cannot change, and the wisdom to know the difference.”
Trying to capture the attention of a person with dementia in an effort to make them understand your thinking is about as reasonable as trying to explain algebra to a one-year-old. I’m not talking about patients who have been recently diagnosed with any form of dementia. I’m referring to one who has had the disease and have become lost in a confusing world of deep forgetting. When you correct them it can, and often does, start an argument. This is your opportunity to switch your conversation to something else: change the subject.
Don’t add to the confusion they already feel by asking, “Don’t you remember when we visited our friends in Oregon?” I am certain that deep in the heart of AD patients they would love to remember the trip. For them, though, the memory and the friends are totally gone. Nagging them to remember only brings out frustration and adds to the anger they might be feeling.
We know from our own experiences about body language and facial expressions. Little things tell a lot. I notice Ken’s expression most when he is eating. At one time he would say, “This is really good,” or something else to let me know that he liked my cooking. Now I can see it in his eyes or how he crinkles his nose and moves his mouth that he likes what he’s eating. Not liking the food is even more obvious. He knows how to spit it out.
REFUSAL AND ANGER
There have been times when Ken has shoved his tray away or deliberately dislodged it from the caregiver’s hands and sent the food flying through space. For whatever reason, they can’t help what happened. Possibly they don’t even know why they did what they did. So collect yourself, count to 10, 20 or even 100, immediately forgive your Alzheimer’s patient and start all over again. Wait for a time and offer again, but slowly. Remember the key word: patience.
A WAITING GAME
Once when Ken had dismissed me as his wife at bedtime and told me get out of his house I was devastated even though I knew that Alzheimer’s was the culprit. I even sat and cried with him at midnight because his wife was out there alone and he was worried to the point of being ill.
Eventually, to help bring her home in his troubled mind, and with a coat over my night clothes I exited the house through the back door and entered through the front door while calling his name. That time (2:00a.m.) he accepted me as his wife, scolded me for being gone for such a long time and said. “You’re home and safe. Let’s go to bed.” So remember when one thing doesn’t work, try a different approach.
KEEP IT SIMPLE
Life is complicated for the caregivers, and no doubt it must be very complicated for the Alzheimer’s patient as well. So forget the big brass band and fireworks. Just keep things simple – something with which he/she has been familiar. Party time with noise and crowds is a thing of the past. Quiet and comfortable is now the order of the day.
CLOSE THE DAY WITH DEITY OR YOUR HIGHER POWER
Was it a good day? Was the Alzheimer’s patient as happy as he could be, then be thankful and let the powers that be know of your gratitude. Once gratitude is given, then you might ask for help and guidance with the days to come. Even if it’s a family member or good friend who helped, give them thanks for helping you through the day. These simple Alzheimer’s tips can make the difference between feeling on top of things or giving into the stress and depression because of the difficult job you are accomplishing.
CAREGIVERS AND MOTHERS ARE NOT TO BE TAKEN FOR GRANTED
August 1, 2014 – I have often mentioned my wonderful caregivers and how blessed I am in having such devoted people in our home caring for Ken throughout these many years that he has been stricken with Alzheimer’s.
There was Ben who was one of the first to work for us and he brought us Crizaldo to fill in on his days off. Crizaldo is from the Philippine Islands. He is working here in the U. S. while his family remains in their home an ocean away. He and his wife agreed to do this so that his children can have a proper education: His daughter’s goal is to be a pediatrician. So he will be working for the next seven years for her to get her degree.
David was with us for a while in the beginning before Crizaldo came, and now that Ben has retired David puts in a full six days out of the week. They all have been more than I could have ever expected in helping me through this intense journey into the Alzheimer’s world of deep forgetting. And now we are in another phase of help, concern and caring.
THE UNEXPECTED CAN COME FROM OUT OF NOWHERE
David was in an automobile accident last week and was unhurt except for a broken ankle. So what do we do when the caregiver can’t do his job. The next morning there was David struggling on crutches letting me know what had happened. “Is it all right if my mom takes my place,” he asked limping as best he could. “My wife Sofia can help, as well as my brother and my dad. I’m sure I’ll be fine in a week or so,” he said confidently.
Mom and her helpers are doing a wonderful job while David is unavailable. It wasn’t a simple sprain which we all hoped it would be, but a spiral break in the small bone. Surgery is scheduled for next week where the doctors will put a pin in place to secure the damage.
MOTHERS JUST DO THOSE KINDS OF THINGS
Meanwhile, life at our house is going smoothly. I say that recalling the many times I tossed a shoulder bag filled with newspapers over my head and walked my son’s route to deliver the morning news to all of his subscribers. I had never developed the skills and balance to ride their bikes, guide the handle bars with my knees and toss the paper onto the right porch. I did tell myself, however, that the walk would do me good. So, there I was a substitute deliverer of the local newspaper to the various homes in our neighborhood. Mothers just do those kinds of things to help out their children. I suppose that’s all part of their knowing and understanding that parents are always “there” for them.
I am grateful that I’m one of many mothers who will step in at a moment’s notice and pick up the slack for their children. Is the task taken by David’s mom to be an Alzheimer’s caregiver more complex than tossing a folded newspaper? Of course, but I find that all is working out well, and I am so grateful that David’s mom was able to step up to the plate during this emergency. “This is helping my family,” she explains.
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IS THERE A CONNECTION?
July 25, 2014 – I have wondered for many a year is there is a connection between selective memory and Alzheimer’s. Ken has had occasion to have a selective memory and is now in his 11th year of AD.
The first experience with Selective memory was the first year we were married. He was a G.I. Student going for a degree in Engineering. The time: long before there were any signs of Alzheimer’s on either side of our families. I had a great job and we had income from his G.I. Bill of Rights. Furthermore, with just the two of us he took on a part-time job at a local gas station working a few hours after college before hitting the books.
A VERY CLEVER CON ARTIST
One evening he called me from the gas station.
“I’ve just been taken by a ‘bunko’ artist,” he said disgusted with himself.
Immediately he ran the ploy by me on the phone. He was embarrassed, frustrated and angry with himself for being so gullible.
“I should have known better,” he claimed, chastising himself. “How could I have been so stupid?”
“It was an old con job,” he continued, “I should have seen right through it,and now it will cost me $50.00. Some guy came in – sincere as he could be – asking for my boss and calling Fred by name. “He’s not here?” the guy asked with an incredulous tone in his voice. “Fred promised to loan me $50.00,” the con continued. “And he promised he would be here. Did he tell you about our deal?
NOT EVEN GOOD ENOUGH FOR A CRACKER-JACK PRIZE
“He did not,” Ken answered ”adding that I just couldn’t see my way clear to give him the money without authorization. but the guy pleaded with me over and over. Then he pulled off his diamond-studded gold watch and diamond ring and handed both to me.” ‘All in good faith,’ he committed. ‘ Take these and I’ll be back tomorrow, pick up my valuables and return the $50.00 – deal?
“I had a feeling that I was doing the wrong thing, but he was leaving collateral so I went into the office and pulled out fifty and gave it to him. As he drove away I knew I’d been had.”
When Ken arrived home he was chagrined beyond measure so I didn’t say anything except I did ask to see the collateral. I forced myself to hold my tongue. He already felt terrible. The $50.00 covered our rent at the time. As I looked at the valuables I didn’t understand why Ken could have been fooled by the two pieces of junk. At best they looked like prizes from a Cracker-Jack box.
“I feel so foolish,” Ken confessed. “Please don’t tell our friends or family. It’ll be hard enough explaining to Fred.” But he did and Fred was understanding. He did, however, deduct the money from Ken’s paycheck.
GONE AND FORGOTTEN
Absently I tossed the junk jewelry into the desk drawer where it continued to tarnish for several months. Finally, I threw both items in the garbage.
Years later I mentioned the incident to Ken about the gold watch and valuable ring. “Remember when you were taken in that con game and the guy gave you the diamond-studded watch and ring, and you gave him $50.00 from the cash drawer of the service station?” Further conversation caused Ken to get very defensive about being so gullible, and he denied any knowledge of what had happened. “That never happened to me,” he claimed. “It must have been one of your former boy friends. I’m not that stupid.”
At the time I wished that I had saved the worthless evidence to show him. However I am certain he would not have recognized the junk jewelry no matter what I said. Rather than make him angry, which would have had no point, I chose to just forget the whole thing
A PHYSCRITIC EXPLANATION
Remembering the incident and realizing where my husband is in his Alzheimer’s journey today; I read up on Selective Memory. Among the explanations was one that seemed to fit him to a tee. It said that selective memory incidents are often related to people who are over-confident in certain areas. For example,the stock broker who brags about his expanding portfolio, but if he loses on some hot deal he becomes so embarrassed his mind hides the loss and his mistake by selectively removing it from memory. I can see Ken falling into that category very well. He was a very confident man – at times confident without the necessary knowledge on a subject under discussion so he would bluff his way through. Confident that he was too smart to be taken in a con game, so the incident went the way of the $50.00: vanished.
We, as humans and the medical community are so in the dark when it comes to knowing and understanding the brain we have no idea why things happen. There were at lease two more incidents in our marriage when Ken conveniently forgot an event, but none so expensive as the con artist and his junk jewelry. Whether selective memory has anything to do with Alzheimer’s I don’t claim to know. Or, could it be a very early sign that trouble with memory is brewing.
MEMORIES OF LONG AGO
July 17, 2014 – Granddaughter Kristina was barely into her teen years when her grandfather began his journey into the mysterious and frightening world of Alzheimer’s. Her memories of him as her fun-loving, teasing grandfather were numerous. Since then, she has quietly watched from the sidelines of her youth and young adulthood as he has slipped away into the Alzheimer’s world, and learned to love him in a different way.
TIME CHANGES EVERYONE
A few years later she was there for him, taking my place, following a serious 2010 automobile accident which left me incapacitated for several months. Helping our professional caregivers with changing, cleaning and showering Kristina found a very different grandfather than the one she so lovingly remembered. A heavy burden for a young girl recently out of high school, but the experience was in her chosen line of work – that of a medical assistant. She had already stacked up several years of experience, both as a volunteer and then as an employee with the local recreation department working with disabled adults.
NOT THE SAME GRANDFATHER
Helping with her grandfather, however, was different because of the close relationship. Furthermore, there were times when he was abusive with her when Ken wasn’t as firmly restrained as he was later. Little by little with the caregiver’s expertise we all learned new methods in working with our Alzheimer’s patient who was still amazingly strong with some remaining verbal skills which could be cruel and insulting. Nevertheless, Kristina along with the rest of us learned to love and accept who he was and understood that her grandfather’s outbursts were the disease and not the grandpa she had known.
My husband’s disease has taken him further and further into the lost world of Alzheimer’s, and while there is never an improvement, he has become less hostile and every so often the love comes forth as Ken makes an effort to communicate.
MESSAGE FROM THE HEART
Kristina sat with him yesterday afternoon asking how he was feeling and other tidbits of small talk. Finally she reached out touching his hand and said, “I love you Grandpa.” He smiled a sweet smile and managed a faltering, “I loooo” He didn’t get out the complete thought and word , but it was almost there and she knew it. She was thrilled with the sweet moment when he made an effort to return her message of love
July 12,’ 2014 — “You’ll have to take me out of here in a pine box,” said my mother many years ago, and long before her confusion became the dreaded Alzheimer’s. She and my dad had retired to a lovely piece of land just a few miles west of Sebastopol, California in beautiful Sonoma County when they were in their early 60s.
My dad, who had worked at Hunter’s Point Naval Shipyard received an early retirement because of his worn-out knees which made it next to impossible for him to continue climbing up and down the ladders of America’s former war ships. He was also one of the “older” employees so it was easier for the Navy to just retire him rather than to be concerned with Dad’s aches, pains and restricted duty. Besides, the war had been over for many years and keeping up the fleet of aging, obsolete warships was fast becoming a thing of the past.
THE PERFECT PLACE
In their search, my parents found a small piece of God’s amazing planet, built their dream home and settled in to enjoy the rest of their lives. We, three daughters and our husbands could only have hoped that their fabulous retirement years extended into nearly a quarter century. Little by little, however, Father Time collected his toll from both of them. Dad developed several conditions including congestive heart failure and Mama had recovered from a broken hip and kidney stones, but her mind was slipping away into mild dementia.
HELP WHEN NEEDED
As a family, Ken and I would periodically organize our adult children, their spouses or the current significant other, and spend a weekend at their acre and a half, trimming, weeding and trying to keep up with the demands of their little farm — an impossible task — but a fun getaway for us and helpful to Mom and Dad. All the while, they stubbornly stuck to the earlier declaration of living where they chose until they died. Even though there was concern from friends, neighbors and their church leaders, we three sisters allowed our parents their own decision. My two sisters lived in Washington State and so the responsibility of our parents’ care was, basically, mine.
HARVEST FROM THE GARDEN
Mama still picked from her garden, canned fruit from their trees, froze a few vegetables, and the two took care of each other. My father could still drive during the day so they met their doctor’s appointments, shopped in town for their needs and actually got along quite well.
My one sister and her husband came from Washington for a visit and decided while they were there, she would do some “scudding out.” With my father’s permission, and while my mother was engaged elsewhere, my well-meaning sister took it upon herself to clear out what she believed to be “older” jars of fruit and canned goods. Loading half of my mother’s summer efforts into the back of her car, she took it all to the dumps. Among the loss was Mama’s favorite: a batch of newly canned Raw Tomato Relish.
WELL MEANING ISN’T ALWAYS THE RIGHT ANSWER
It wasn’t until my sister and her husband had returned home that Mama went to her storage looking for a jar of the relish and found the cupboards half bare. Puzzled, she asked my father if he knew anything about the missing supply. Reluctantly, Dad had to confess his part in the vanished food supply explaining my sister meant well and had promised to toss only outdated storage. Mama was not only furious, she was crushed at not being consulted; at being treated as less than a thinking, reasonable and responsible adult; a person without value; a person who, in Mama’s eyes, was no longer respected. “What are we,” she asked, “if we have no value and no respect?” Feeling betrayed by not only her daughter, but by her husband as well, she fell into a long period of depression.
Eventually, she came out of her sadness, buoyed up by her faith and exercising forgiveness, and life resumed for the two of them. I certinly wouldn’t imply that her forgetfulness escalated because of the incident, but she began to slip further and further away from reality.
STILL THE CAPTAIN OF HIS SHIP
Health reasons soon necessitated their move to be closer to me and Ken. Even though I managed their affairs. I understood the importance of respect and “being master of one’s own ship” I allowed my father to believe he was the one in charge even though they had given me power of attorney. He reviewed the mail and studied the bank statement; a job which had been my mother’s all of their married life. I doubt he understood what he was perusing but doing so reinforced his sense of validation and independence. Dad was still in command — the head of his household.
I never made a decision without consulting him, never took away his authority which allowed him to be a person who stepped up to the plate, taking on the responsibility of providing for the care of his beloved wife until her death at home in her 90th year. He died six months later at home — also in his 90th year — a man of honor, a man valued and respected.
A NEW CITIZEN
July 4, 2014 – Long ago in Contentmentville, where Ken and I lived with our five children, the 4th of July was celebrated as the birthday for America: the place where we made our home. The land to which Nicholas Romick, Ken’s father, emigrated in 1906. The land of opportunity for a boy of 15 who came alone with a pack on his back to seek his fortune. He was a true patriot and served his new country well: a stint in the Marine Corps,and then becoming a hard worker and solid citizen. This, of course, was before Alzheimer’s became an intruder in all of our lives. Nick loved his new country and taught his children about his humble beginning and to always remember who they were and to remember their freedom and celebrate living in this choice land.
A BIRTHDAY CELEBRATION
“And whose birthday is it today?” was the prime question tossed out to the group of small children gathered on someone’s front steps, when you children were young. It took a few minutes and with some hints and coaching from the adults the youghful participants realized that it was America’s birthday. A simple history lesson for the small fry to think about as the neighborhood residents gathered for the party to begin.
SAFE AND SANE
It was an easier time back then, a more relaxed time when we were all younger, and most counties allowed the sale of safe and sane fireworks for the festivities of the 4th. A few sparklers set the stage on quiet streets while elsewhere everyone could look to the sky to see rockets and other fireworks lighting the darkness, but our youngsters were happy with what had.
GROWING UP AND MOVING ON
“Our neighborhood is just like the one where I grew up,” claimed our married son Kevin, the father of three. It was an invitation for me and Ken to come to their block party and enjoy the holiday with a bar-b-cue in the afternoon and watch as the darkness approached for what other communities might be doing in the way of fireworks.
With a new batch of children we played a form of jeopardy as a test to see what they were learning in school about the early history of their country. Questions about our founding fathers and the Revolutionary War and their earned freedoms. Prizes were awarded to the youngsters according to the number of correct answers. Fun for all filled the early evening hours.
The tradition continued for several years until those small children grew up and went their own way.
THE UNINVITED GUEST
It was a sunny afternoon, one year, at the bar-b-cue that I mentioned to Mike, Ken’s brother-in-law that Ken had been diagnosed with Alzheimer’s. It was really no surprise with both parents having been stricken, but now it was both of the siblings. Loretta, Ken’s sister, had the disease as well.
ROCKETS RED GLARE
Our journey home took about an hour, and as I drove through the various communities one could see traces of fireworks all along the rim of the bay.
“Look Ken,” I would say, “Watch over the water and see the rockets bursting in the sky. It’s so pretty, but most directions and conversation were without response. The last few years of our new tradition left him without awe about the “rockets’ red glare. Alzheimer’s has snuffed out the memory like a burned match.
Even now as his journey has reached the severe stage, the noise from out of doors and the pops and bangs are hardly heard as another 4th of July comes and goes in our Alzheimer’s home.
HOPE SPRINGS ETERNAL
Nevertheless, out there I know there are families with young children who are remembering and celebrating America’s big day, some with safe and sane fireworks with little ones holding a sparkler as America celebrates her 239thbirthday.
HAPPY BIRTHDAY MY UNITED STATES OF AMERICA
MANY, MANY MORE
EARLY FATHER’S DAY BEGINNINGS – TWO GIRLS AND THEN A BOY
June 13, 2014 – Following the birth of our two girls, Ken and I had a man child – a boy. This, of course, was long before Alzheimer’s had raised its ugly head in any of our lives. It was a word that never crossed our minds. Our hearts and thoughts were filled with the excitement of a new person in our lives. Our future looked promising and bright. Continue reading