ADVICE FOR A.D., ET AL FROM THE INTERNET

 

DANCING RAISINS?

May 11, 2015 — Do you remember the singing/dancing California raisins from years ago. In addition to the dance,hey sang a little ditty about “I heard it on the grapevine.” We know that whatever we hear on the grapevine, in all probability, gossip or rumor. In today’s world of technology we see it or read it, or even hear it, on the internet. Just as it is on the grapevine it is often gossip or rumor, and sometimes even false information.

QUOTES FROM THE MASTERS

Don’t believe everything you read and only half of what you see.” With a little variation there are a few other quotes out there from Ben Franklin and Edgar Allan Poe that say just about the same thing. How often should we apply this to newspapers, radio, TV and in today’s world with knowledge at your fingertips: the internet. We quote the new marvel as though it were­ the last word of truth. And that, my friends, needs to stop.

KEN AND ALZHEIMER’S

Of course, when a loved one is stricken with a terminal disease, and once we’ve seen the doctor and picked up the latest in medications, we go immediately to the internet in search of our own­ magic cure that, we believe, has somehow escaped our doctor’s knowledge. “Incurable” suddenly becomes a word of challenge; something that surely can be overcome with just the right information and so we go on searching. My grandson sent me an article in print about AD and the vast difference of cases in India compared to the epidemic that seems to rage in the United States. While in India the AD cases total about 4% of the population. Here in our country the numbers are staggering.

The study group, of course, wondered what they do in India that was so different than what we do here in the U. S. One answer: They use a lot of Curry in their cooking. In my desperation I bought my own pill kit, some curry from the health food store and began giving a few capsules to Ken along with an array of his usual vitamins.

Soon the India researchers decided that it wasn’t the curry itself that was of benefit but the turmeric within the curry which is a blend of various spices. I told our doctor that I would be making the change for Ken. He glanced at me with that adult eye roll and I asked, “What can the medical community do for him. The good doctor thoughtfully paused and said, “Nothing.” At the health food store I purchased an ample supply of turmeric. Our doctor had cautioned that if I gave Ken too much he would probably throw it all up.

SEARCHING FOR HOPE, AND OTHER DISEASES

About ten years ago my oldest daughter Debbie was diagnosed with diabetes. She, of course, turned to the internet to find all she could about her coming life-time battle. She has always been a natural foods kind of person, so it was natural for her to search for her own magic cure. Debbie tried everything she could find with suggestions about curing diabetes coming at her from every direction. She was striving with every ounce of energy to avoid taking the artificial insulin, but finally she had been convinced to give the insulin a try. She did.

A few weeks back, following her first shot, Debbie’s husband Mark found her unresponsive on the living room floor. They live in Ogden, Utah. Local doctors sent her to the University of Utah Medical Center in Salt Lake City where the facilities with a more comprehensive neurological department and doctors were better prepared to handle an insulin-induced coma. The tests did find a few other problems they are dealing with as well as her diabetes. Debbie appears to be responding well to treatment and therapy.

I can understand her zeal to find another way to help herself. In my own desperation to help my husband I do believe I would have even tried arsenic with a splash of rum, or some of the “Old Lace” from the famous stageplay, had there been encouragement – anything to restore Ken to his former self. There is something so final and frightening when diagnosed with an illness that has no cure, and with Alzheimer’s there are just two pharmaceutical drugs on the market for treatment. Furthermore the treatment only delays the ravages that will eventually come to the Alzheimer’s victim.

With diabetes there is insulin. Perhaps not the very best solution, but it beats nothing. And when all was said and done there was nothing on the internet that would restore Debbie’s pancreas to its former self.

I believe that both she and I have taken some advice from the old masters and while the internet and Social Media are both  great assets to be used with wisdom. “Don’t believe everything you read and only half of what you see. And don’t believe everything on the internet.

A.D. CAREGIVERS AND OTHER ILLS

THE WAITING ROOM

May 15, 2015 – Alzheimer’s disease is gone from my house, and while I miss Ken more than my words can say, I don’t miss his Alzheimer’s. I wonder at times if the “golden years” are supposed to be golden., or are they as my friend Frances used to say, the “rusting years.” “Well put,” I would tell her as together we mused about all that can, and often does, go wrong while we pull up a chair, grab a dated magazine and make ourselves comfortable in God’s waiting room.

OR LIFE’S CONVEYOR BELT

That’s how I refer to the “rusty golden years.” Our late-years’ life is like a conveyor belt and much like Lucy and Ethel boxing chocolates in a candy factory. We humans just move along the conveyor belt, faster than we like because we can’t slow it down or make it stop for a rest, to our final destination also in a box.

My intent is not to be morbid or insensitive about death or living our last days or decades. It’s all a part of the cycle of life, and as they tell us when there is a new birth that life for everyone is a temporary place where we, hopefully, spend the better part of a century, but no one gets out of it alive.

THAT FAMILY THING

I am blessed. My family has been there for me through all of those Alzheimer’s years and nursing me along when I was badly hurt in an automobile accident. Recently it was my turn to be there even though I couldn’t be with her physically, daughter Debbie knew I was with her in a spiritual sense.

The call came to Kristina from her father who found his wife unresponsive on the living room floor the Friday before Mothers’ Day. Local doctors sent her to the University of Utah Medical Center in Salt Lake City, Utah. Deborah suffers from Type II diabetes. For the past ten years she has convinced herself that using holistic treatments she could avoid insulin. None of us like to take medicines, but her avoiding what was missing from her body only complicated her condition. When she finally began taking the shot, her confused system sent her into a coma. She was awake and talked to me on Mothers’ Day although she doesn’t remember our conversation. Following an MRI her doctors believe there has been no damage to her brain after finding an infection in the frontal lobe. However, she will be spending a week or so in their rehab facility to strengthen her walking and speech skills, both of which seem to be slightly impaired by her experience. Her children have been with her, praying and encouraging their mom that she can overcome this.

Kristina, who is living with me, hopped in her car that first night and drove straight through to be with her mom during this serious turn of her health problems. She took Buddy, the nine-month-old puppy with her. He proved to be a good traveler and a welcome companion. I worried, though, Buddy couldn’t change a tire if that became a need.

WE ALL HAVE ADVERSITY

At times I believe that we are given adversity to remind us of how sweet life is when it isn’t with us. Often we struggle against it, but when things go wrong. and we have no control, then we must remind ourselves that we do have Heavenly help. We have to let go and let God. That’s our part to allow Him to answer all of the prayers and healing blessings. Our prayers continue asking that she may have a full recovery and return to her former self. Like other life-long illnesses where there is only treatment and not a cure, we must accept what is reality and continue on doing the best we can. As a family, we are grateful for our faith and prayers, and the prayers from others to help and see us through these difficulties in life.

ALZHEIMER’S AND MOTHERS’ DAY

 

REMEMBERING MY MOTHERS

May 20, 2015 – The other day I was shopping when suddenly appeared before me a rack filled with Mothers’ Day cards. Years ago I always stopped to check through the assortment looking for two perfect cards: one for my mother and another for my mother-in-law. It’s been a long time, more than 25 years, since I had reason to buy a card for these special women in my life, but now I have long-since realized that there was no reason for me to browse through the rack. Both mothers have passed on.

The two women were similar: stay-at-home moms who canned fruit during the summer months to be enjoyed throughout the rest of the year, both were devoted to family, both were interested in gardening and took pride in their flowers and a patch of chard, tomatoes, zucchini vines, and a scattering of herbs They were church-goers and were women of faith devoted to God and His son Jesus Christ. They also both died with Alzheimer’s disease.

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Both mothers could administer a quick swat to get a youngster’s attention without any worry about warping their offspring believing in a fast act of discipline rather than the disciplines of today’s experts. Both moms were experts in just about anything and everything and could have, no doubt, taught the experts of today a thing or two.

ANOTHER MOTHER

For me that would be my mother’s mother better known as grandma. I still picture her in my mind in a house dress with her hair pulled up and pinned back into a bun, and in all the years she lived she never seemed to change. She stayed on the family farm for as long as she was able, then spent the remainder of her life with any one of her 10 children. Her last few years were spent at our house where my mom cared for her until she died.

Her farm will always be etched in my memory as a place of contentment. I wrote a poem about it at one time. There was the house, of course, with a large lawn in front edged by a mulberry trees and near the house a perfect tree for climbing, sitting and watching the world go by. My uncle taught me how to make a whistle from one of the leaves found on the old cottonwood tree.

My grandmother’s house sat back from the road,

as much as my mind discloses,

And next to the lane,

was a long, long fence filled with fragrant yellow roses.

The summer when my mother and I visited her grandma taught me how to make flower dolls with full billowing skirts and ruffled bonnets using hollyhocks. She also baked bread and the most delicious rolls using her ancient wood burning stove and oven. Testing the oven temperature by waving her hand inside the dark interior she knew exactly when it was hot enough for a successful batch of bread, or cookies, or whatever she was making for the family dinner.

This woman was of pioneer stock, and could milk a cow as efficiently as any man. She beat off rattlesnakes and spiders who threatened her children in their play. She and her husband Joseph were prepared for any calamity.

ALZHEIMER’S THE FAMILY DISEASE?

We who have known cases of AD in the family often wonder which of our parents had inherited the gene from one or both of their parents. Unfortunately, if it was there in previous generations before Grandma or Grandpa, there appears to be no record. However, I would guess it came from Grandpa Joseph because Grandma who became a bit cantankerous as she grew older had no signs of memory loss. It was Grandpa who was a little weird at about 50. In all likelihood he was the gene carrier. But not all family members are subject to getting the disease. It was Mama and two of her brothers who inherited AD.

With my husband Ken, we know that his Alzheimer’s could have come from either parent. But today we won’t dwell on.the sad part of remembering., Only that we had wonderful mothers and today is the day of honoring them. Happy Mothers’ Day to all the mothers out there.

ALZHEIMER’S AND THE SWINDLER

ALZHEIMER’S AND THE SWINDLER

CLOSING A BANK ACCOUNT

May 1, 2015 – In my last post I mentioned the father of one of my young friends, and how he had closed his bank account without anyone in the family knowing what he had done. Furthermore, the money is still nowhere to be found. That’s why it has been assumed that someone swindled it from Dad, and Dad, trusting and friendly, possibly only thought someone was being helpful.

CON JOBS – AS OLD AS THE HILLS

Unfortunately, there are a lot of people out there who are unscrupulous in their dealings with their fellow man or woman. Our loved ones with AD often fall victim to these dishonest predators preying on the child-like innocence of demented older people, their confusion, their forgetfulness and their disease. It really doesn’t take much observation to notice when someone is not fully aware of his or her surroundings, and often the original ploy of the con job can be presented long before the actual swindle. The whole con job can be set up well in advance.

FAMILY TO THE RESCUE

Several years before Ken’s Alzheimer’s the two of us were at our bank doing our usual monthly rent deposits. As we finished our transaction we bumped into another couple that we had known for several years. We walked to the exit together, and talked about banking at the same bank, and how pleased we were with the service. “They won’t let us take out our money,” said Wilma, somewhat exasperated at not being able to make a withdrawal. “We were going to open an account elsewhere and use the money for a good investment,” explained her husband Howard, equally frustrated. Both Ken and I wondered why they were having a problem and suggested they talk with the bank manager. Apparently the couple had mentioned an intended investment they wanted to make to their son, Hank. Being somewhat suspicious Hank talked with the bank manager regarding his concern for his parents. While they could not refuse to give Wilma and Howard their money, had they insisted, they could stall. Another day when Howard and Wilma requested a large withdrawal Hank was called and saved the day by meeting his parents at the bank where his parents finally explained their desired but bogus investment. Hank’s mom and dad were willing to give their money to a perfect stranger who had set up the investment to take place at the couple’s home. Because of Hank’s attentive caring for the welfare of his parent’s the money stayed in the bank. Eventually, the account was changed to require two signatures on any check or withdrawal slip with Hank being one of the signers.

OTHER WAYS TO WARD OFF PREDATORS

Ken’s parents, Rose and Nick, were reluctant to add either Ken’s or Loretta’s name to their bank accounts. I suppose parents like to believe they will always be capable of handling their own affairs. However, both of them were having memory and confusion problems. Even to make a simple deposit I had to search the house for any check that needed to be deposited. (Of course all of this was before direct deposit.) The couple had other issues as well. It was decided by Ken and Loretta, to have a conservatorship obtained for their ill and aging parents. This, of course, is much more involved than having signatures added to accounts, or a POA. The conservatorship is a legal procedure and carefully evaluated by authorities, with the accounts audited by an attorney of the conservators choice. With Rose and Nick representatives from the county came to the house to interview the couple and to check the house for other signs of failing health or cognative loss, and their inability to properly care for themselves. Following the interview and a time period for input from family and other experts, and more evaluation the conservatorship was granted much to the relief of family. Anyone with aging parents needs to be aware of the pitfalls that can cause great financial loss during the later years of their older loved ones.

EARLY DISCUSSIONS

In an effort to obtain full cooperation from elderly parents, it might be best to begin a discussion early on suggesting a possible family trust with a competent executor, power of attorney for someone in the family or a devoted and trusted friend. It doesn’t hurt to question expenditures remembering always to tread lightly. We want to keep them safe and protect their needed finances. However, in your effort to be of help be careful and don’t offend. You don’t want to get a “Mind your own business” response from them. Anyone with aging parents needs to be aware of the pitfalls that can cause great financial loss during the later years of their older loved ones, especially when we all know there may be a need for some solid financial funds relating to their care needs in the future.

ENTERING THE ALZHEIMER’S WORLD

THE ALZHEIMER’S WORLD MARCHES ON

April 24, 2015No matter who, Alzheimer’s appears to be

unraveling mind

The slowly unraveling mind is an everyday part of the Alzheimer’s World.

waiting for it’s next victim striking at friends, neighbors and family. As my husbands former caregiver – he passed in October 2014 – it would seem that not a day goes by but I don’t hear of another person entering the Alzheimer’s world, another diagnosed case of AD causing untold grief to another family. This time it’s the father of one of my young friends. Continue reading

THE “WHAT-IFS” OF ALZHEIMER’S

What ifsMAYBE TOMORROW OR EVEN NEXT WEEK

April 15, 2015 – As a former caregiver for my husband Ken that thought, “The what-ifs?” often became part pf my thoughts. “Maybe tomorrow or even next week there will be cure for AD” ran through my mind constantly especially when an important item on the evening news  announced: “A new advancement for Alzheimer’s disease is being further tested on mice.” Usually, the “news flash” occurred on a slow-news day and was just a rehash of a previous “breakthrough story” one of the “breakthroughs” that really weren’t news worthy at all – just an attention grabber. Such items are always a major disappointment for any caregiver listeners, whose highest hope hangs on to any and all “breakthroughs.”

My heart had always skipped a few beats at the beginning of the announced breakthrough, but hopes were quickly and cruelly dashed in finding that, in actuality, there was nothing new at all. Alzheimer’s, it seemed, was/is a nearly impossible nut to crack. Continue reading

EASTER SUNDAY AND ALZHEIMER’S

The new life found in Easter Eggs is symbolic of the new life we can all look forward to,

The new life found in Easter Eggs is symbolic of the new life we can all look forward to,

SIGNS OF SPRING

April 5, 2015 – Yes, it is a few days after Easter, but it’s also a good time to remember and reflect.  Just as living that first year after losing a loved one, Easter is another holiday,not only to get through, but to reminisce and muse about its beginning more than 2,000 years ago. It’s spring again with all the signs: bulbs sprouting forth with flowers of daffodils, lilies, iris, tulips and trees budding with blossoms or new leaves. A season of new life.

NEW LIFE

Several years ago, well before Easter, when the family was all together with four generations, the discussion turned to the joyful holiday, bunnies, chicks and  baskets piled high with eggs of various origins: pastel-colored eggs recently boiled and decorated for the hunt, chocolate bunnies and  candy eggs, and, of course, jellybeans in all the colors from a Crayola box.

The conversation hinted that these fun gifts did not come from the famous, imagined bunny of childhood, but from the older folks in the house. Eight-year-old Haley in a disappointed question followed the proverbial cat out of the bag with, “You mean there aren’t real bunnies who bring the baskets?” The truth was out and her comment was a startling disappointment. “No sweetie. It’s just make-believe.” “Then, Why?” she asked. “You mean there are no little chicks either?”

A LEARNING TIME

Because, the chicks and bunnies and pretty little birds are a reminder to all of us that spring is here and there is new life all around us.” From that point on it was easy to remind the children about the mission of the Messiah, that same Jesus whom they had been hearing about in Sunday School. All about Jesus, his sacrifice and ultimate Crucifixion on the cross, his being in the tomb for three days and finally his resurrection on that first Easter morning. The fact that he brought with him the promise to all of us that we too could experience life after life: a time when we would be resurrected just as Jesus had been.

A REMINDER ABOUT FAITH

As a woman of faith and a disciple of Christ I am warmed by the Easter message: That I will see my beloved husband, Ken, once again in the hereafter, and that both of us will one day be resurrected: me, without my aches and pains of aging, and Ken without Alzheimer’s. That promise is by far the greatest gift any of us could receive, and it doesn’t come in a cellophane-wrapped Easter basket, but from the Lord himself. May we all appreciate that precious gift and live our lives accordingly.

WHAT IS IT LIKE TO BE A CAREGIVER?

A NEW EXPERIENCE

March 27, 2015 – I noticed a post on Facebook a while back written by a young friend. In it she told of quitting her job because she was going to be caring for her grandfather whom she dearly loved. Of course, grandma too was in the mix, but it was Papa whose health was failing from a cancer he had been living with for some time. She was joyful as she approached a new path in her early journey into life. She loved her grandparents and looked forward to this dedicated and probably her last gift of love for them.

I posted a note back to her expressing my admiration for the altruistic choice she was making, but at the same time I told her that it would be the most difficult job she would ever have.

She answered saying that she was aware of the demands of her commitment, and that for her she was happy to be of service to this loving man and her grandma whose health was good. While Papa still had all of his faculties I was certain that unless something drastic occurred to change the personality of this dear man, the battle of emotions would be easier for her than if he had Alzheimer’s or some other mind-robbing dementia disease.

CANCER AND ALZHEIMER’S

Whatever the disease if it’s a sentence to death it will be heart-wrenching to the family. The big difference between cancer and dementia diseases is that with cancer the patient is still in touch with his or her loved ones. There is communication and reason, more often than not, particularly in the last stages of Alzheimer’s the victim is often without communication with family. Or his/her sentences are broken or garbled. The victim’s understanding is often so dimmed he/she doesn’t know what’s going on in the room around him.

VERBAL AND PHYSICAL ABUSE

That lack of understanding, communication and reason often puts the caregiver in a precarious position where insult and injury may be part of the day’s events.

For a time when I was recuperating from major injuries from an auto accident and unable to help the male caregiver the family had hired with my husband. Fortunately, my granddaughter, who had been staying with us,took my place helping to get Ken up and ready for the day. There were many times when Kristina went off to her room crying a little or a lot after her grandfather had managed to punch or slap her. At that point in his illness he was beyond knowing that he was not well.

When I was able to return as helper there were numerous days when I too wanted to go to my room and cry because of being injured by this man whom I have lived with and loved most of my adult life. I have suffered attempted bites, been pushed, shoved, slapped, punched, clawed, kicked, cursed at, and spit upon. My male caregivers have experienced the same. It’s not only physically exhausting, but emotionally draining.

You cry into the pillows and in the shower and strive not to break down for the patient to see. He or she has their own inner turmoil with which to cope. Yet the caregiver usually survives, but not without some bruises both physical and emotional

THE END IS OFTEN CLOSER THAN WE THINK

My young friend’s precious Papa lived only a few months under her devoted care until he passed on from the natural causes of cancer, as did Ken last October from natural causes complicated by Alzheimer’s.

I am certain that my young friend and I have grown from our individual experiences. So what’s it like to be a caregiver? I will always carry with me the same definition. “It’s the most difficult job in the entire world.”

DEATH WITH ALZHEIMER’S — part II

DEATH WITH ALZHEIMER’S – PART II

OFFICIAL NUMBERS CAN BE QUESTIONABLE

March 23, 2015 – I challenge the official CDC count of people dying from Alzheimer’s disease because the death certificates of four family members did not list Alzheimer’s as the cause of death, and according to the the doctor who signed the death certificate, it wasn’t. It was due to complications resulting from having Alzheimer’s. However when opportunity was there on the certificate under “significant conditions contributing to death” the word NONE was listed. Had Alzheimer’s not been present, these family members would not have died at that given time.

SENTENCE TO DEATH

We, the loved ones, the caregivers of the stricken understand that with diagnosis AD is like any other death sentence. So why isn’t it listed as a contributing factor? Our patient will never recover. What he or she has is eventually terminal. If not from the disease itself, but from complications that will arise no matter how good the care. As of now, this year, the medical community and for all the research taking place, there is no cure for this disease and many others under the dementia umbrella. We have been told that AD is epidemic in the United States and quickly rising in Western society. With all of the world-wide research taking place there are still no medications to cure or delay the ravages of AD for more than a short while. A disease that literally kills the brain and it isn’t even listed as a contributing factor on the death certificates of all our family members who have passed on with Alzheimer’s.

BEFORE DIAGNOSIS

It seems that just about everyone I speak with whose loved one or friend has passed on with AD said that evidence was visible long before the neurologist made his first examination. For example: my sister’s husband Douglas was suffering from throat cancer and was in pain more than he wasn’t. Yet, he was a trooper. With my sister Janet the two had come for a few days’ visit. Douglas felt very cold and even though our house was about 68 degrees he asked if Ken would kick up the thermostat a bit. Ken complied but grumbled for all to hear about not understanding how any one could possibly be cold and that he felt just fine.

It wasn’t like Ken to be so self-centered and rude, nor to challenge someone’s comfort. He lacked understanding, concern and sympathy for his brother-in-law. That was an early change in Ken’s personality who was best known for his easy-going manner and concern for others. I also noticed that he became lost in traffic very easily and confused with directions in going from home to point “B”. A trip to the hardware store needed an exact note in detail or he would come back empty-handed. Facts became other people’s opinions in his mind and he would challenge what others said. He stopped trusting me accusing me of mistakes he was making or imagined. Suddenly I was the one without common sense and he knew everything. Furthermore, he no longer felt that I was capable of doing anything right nor did he want me drive “his” car.

Like the far-off whistle of a train, we, who loved Ken best, knew that Alzheimer’s disease was coming long before it arrived through official diagnosis from a neurologist.

Alzheimer’s disease gobbled up all the sections of Ken’s brain, but according to the nit-pickers, it wasn’t the cause of his death. For me though, and our family, my husband and the father of our grown children died from Alzheimer’s – the innocent, nameless killer.

CAUSE OF DEATH? ALZHEIMER’S!

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WHAT DO YOU CALL THE CAUSE OF DEATH OF SOMEONE WITH ALZHEIMER’S?

Synonyms of Alzheimer's and the disease spelled out.

The cause of death for someone with Alzheimer’s is often not listed as such.

February 27, 2015 – I know, that’s a misnomer. I know that AD is seldom listed on a death certificate as the cause of death. Complications from Alzheimer’s aren’t listed either. I am using these vague words because people who die after years of suffering from AD are listed as passing on for other reasons. Therefore, in my humble opinion, this terrible disease that is so devastating to so many doesn’t get the correct count as cause of death with the statistics listed by the CDC (Center for Disease Control). How can they possibly keep an accurate count of those afflicted with Alzheimer’s disease if it isn’t even listed as a contributing factor on the death certificate? Continue reading

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