Tag Archives: Alzheimer’s disease

Alzheimer’s inflicts collateral damage

Long ago I pledged to use this blog as a forum to advocate for Alzheimer’s disease research. Why? Because it affects me directly along with members of my family who have suffered the agony of watching loved ones get sick and die from this merciless killer.

I lost my mother to it. Her younger brother died of complications from Alzheimer’s disease just a couple of years ago. My aunt has just been diagnosed with the disease. One of my dearest friends — a with whom I go back more than 60 years — is now watching his mother wither away from the disease.

You see, Alzheimer’s disease afflicts not just its victims. The collateral damage it inflicts goes far beyond the number of actual “victims” of the disease.

Last I heard, about 4 million Americans have been diagnosed with the disease. Multiply that figure by many times … two, three, four or five, whatever.

Then you come up with a number more closely representing the total casualty count delivered by Alzheimer’s.

Loved ones suffer the most | High Plains Blogger

Thus, as the nation ages — as it is doing — you see the numbers of Alzheimer’s patients increasing. Just as critically, we will witness the number of affected loved ones increase even more dramatically.

The Alzheimer’s patient loses his or her cognitive ability over time. It’s the loved one who cares for his or her spouse, the parent, the sibling or even the extended member of the family who needs help. Is the government ever going to be prepared to offer them counseling, or advice, or wisdom?

Yes, this disease harms so many Americans in so many ways and at so many levels.

We need to stay busy looking for a cure.

johnkanelis_92@hotmail.com

Loved ones suffer the most

Some disease inflicts maximum pain on its direct victims. You know what they are.

Others inflict its maximum damage on those who care for those victims. Yes, I refer to Alzheimer’s disease.

I just got word the other day that a beloved member of my family has been diagnosed with Alzheimer’s disease. We haven’t seen her in a couple of years; she and her husband and children and grandchildren live in the Pacific Northwest, about 1,600 miles from us in North Texas.

We don’t know many of the particulars of my aunt’s condition, other than her husband of more than 60 years is in dire emotional straits.

My immediate family and I know all too well the pain that this disease inflicts on those who love its victims. My mother died of complications from it in 1984. She was 61 years old when she died. She likely had early-onset symptoms perhaps a decade or so. We were young and not too alert to the disease. Then a neurologist gave us the diagnosis in early 1980, telling us the grim news all at once: There is no cure and there is no hope for survival.

Why bring all this up? Because millions more Americans suffer the agony than the number of victims of this hideous, insidious and merciless killer. It is always fatal. Modern medicine has no cure for Alzheimer’s disease, although therapies keep emerging that prolong the quality of life of those afflicted with the disease.

As the nation continues to grow older, the cases of this form of dementia are bound to increase. And yes … I want to put additional pressure on our scientific community to step its efforts to seek a cure to end the epidemic of misery that is going to envelop this nation over time.

I am left to pray that my aunt, my uncle their three children can latch onto an improved therapy to help her cope with her loss of cognition.

It also can help them await an inevitable outcome with some measure of comfort. They suffer grievous emotional pain watching the essence of their loved one disappear in real time.

johnkanelis_92@hotmail.com

Mom was dealt a horrible hand

This beautiful young woman you see on this blog post is my Mom.

I don’t know precisely when this picture was taken, but I’ll guess she was in her early 20s. So, I reckon it was shot about the time she and Dad got married in August 1946.

We’re all going to celebrate Mother’s Day. I will celebrate Mom’s time on this good Earth for giving life to me and my two sisters, but to be honest, it’s a bittersweet remembrance.

You see, Mom was dealt about as bad a hand as anyone could receive. She died in September 1984 of Alzheimer’s disease complications. Mom was 61 years of age.

Sixty-one! Now, to those who have undergone this kind of familial misery, you understand that Alzheimer’s usually takes years to claim its victims. That means Mom exhibited symptoms long before she passed away.

We weren’t wise enough at the time to understand what was afflicting Mom. We all noticed changes in her behavior. We were slow on the uptake, I suppose, to get her diagnosed by a neurologist. We did that in early 1980. Then we got the news: There is no cure for the disease and the only way to determine whether anyone has it is through an autopsy. The doc simply ruled out every possible condition that could cause her behavior change.

Mom was denied the chance to grow old. I cannot prove this, but I will rely on my hunch and my knowledge of the kind of young woman became in determining that she would have aged gracefully and that she would have enjoyed seeing her five grandkids grow into adulthood; she would have relished welcoming her great-grandchildren into this world as well.

They say that life isn’t fair. It damn sure isn’t! One cannot understand why the Good Lord takes some people in such a cruel fashion. He did in this instance and we were left only to wonder why.

Mom deserved better than what she was delivered.

My memories of her will last for as long as I draw breath and with that I want to extend a happy Mother’s Day as far as I can reach to the young woman in the picture.

johnkanelis_92@hotmail.com

Jack Hanna adds face to heartache

By JOHN KANELIS / johnkanelis_92@hotmail.com

It’s happened … again.

Every now and then, a celebrity of considerable note announces he or she is “retiring” from public life. You want to know why. Well, the latest such high-profile retirement comes from famed naturalist Jack Hanna, who this week has announced he is suffering from dementia that has progressed into Alzheimer’s disease.

This one hits me straight in the heart.

I once declared my intention to speak to this issue on my blog. My mother died of Alzheimer’s complications. That was nearly 37 years ago. She was 61 years of age when she left us.

Jack Hanna’s ailment is sure to bring attention once again to this killer. It has afflicted 6 million Americans; the number of Alzheimer’s victims is expected to triple in the next three decades.

What receives precious little attention to this disease, though, is the impact it has on family members of those who are caught in its merciless grip. So, for every single Alzheimer’s disease patient who is battling this monstrous killer, it affects those near them. The effect is profound. Take my word for it.

Do we devote enough attention to Alzheimer’s disease or related dementia? No. We don’t. Our society is aging. This disease is a tragic consequence of advancing years.

Celebrities would gather and sing songs to raise money for AIDS research. They have raised money to help the homeless and the hungry. Crowds are marching against discrimination and hatred against racial and ethnic minorities. These are noble and worthwhile causes.

No one appears to be doing these things to fight a killer that is as merciless and cruel as anything one can imagine.

We must do more at every level to fight dementia at all levels.

The latest celebrity’s affliction will call appropriate attention once more to it. I will pray not just for Jack Hanna, but also for those who love him.

What will happen post-Trump?

A critic of High Plains Blogger posed a question to me that I feel compelled to answer with this post.

This critic, a dedicated Donald Trump devotee, wanted to know what I would write about were it not for The Donald’s presence on the national scene. I reminded him that I have written on plenty of non-Trump topics during the past four years. I presume he’s like a lot of us who focus on the things with which we disagree most fervently, causing us to narrow our vision dramatically.

Here is the truth, though, about the future of this blog post-Donald Trump. I am looking forward to weaning myself of Trump-related matters. Whether it’s after this upcoming election (please, please … I hope that’s the case) or after the next one in 2024, I am excited at the prospect of looking beyond the wreckage that this individual has brought to the political stage.

That’s my hope. However, I do have this fear. It is that Donald Trump, as a former president of the United States, is still going to command a lot of attention. He will continue to have his social media access, namely Twitter. I fear, therefore, that Donald Trump is not going to fade away quietly into some sort of post-presidential hibernation the way every one of his predecessors has done.

Surely, some have done so more notably than others. Perhaps the biggest post-presidential tragedy occurred after Ronald Reagan left office in 1989. He retired to California, would emerge on occasion to make a speech, such as when he famously spoke to the 1992 Republican convention in Houston. Then in November 1994, not even six years after leaving the White House, he told the world of his affliction from Alzheimer’s disease. President Reagan bid us farewell … and we never heard from him again.

Donald Trump’s penchant for hogging the limelight won’t allow him to go away quietly. The good news for yours truly, though, is that as a former president he will become decidedly less relevant on matters that count. He will be unable to set policy or issue executive orders. He’ll just be one of the rest of us, using social media to blather on this and/or that subject.

I intend to focus this blog — as I declare in my profile — on issues relating to “politics, public policy and life experience.” Where any of this concerns Donald Trump likely will entail what his successor does to repair the damage Trump inflicted on the presidency.

Missing this once-vibrant woman

The picture you see with the blog post is of a beautiful young woman who would become my mother.

I don’t know when this picture was taken. I’m going to make a wild guess and say Mom is about 19 years of age in this photo. That means she was four to five years away from marrying my father, who at the time this picture might have been snapped was fighting like hell to save the world from tyranny during World War II.

Mnostoula Filipu would take Dad’s name and become a Kanelis.

I wish I could extend Mother’s Day greetings to her. I cannot, at least not in the worldly way we do when our parents are among us. Mom has been gone since Sept. 17, 1984.

She was dealt a bad hand that resulted in what I consider to be a premature death. She was 61 years of age when she succumbed to the ravages of Alzheimer’s disease. To be honest, I still have difficulty wrapping my noggin around the notion that I have outlived her by nine years; my sisters, both of whom are younger than I am, also have lived longer than she did.

She likely exhibited early-onset symptoms of this killer disease a decade or so before she passed on. I have difficulty remembering when we first started noticing changes in her behavior.

However, I do remember something she told me many years earlier. She said she thought every single day of her own father, my Pappou, who died in January 1950 at the age of 62. She said it was natural to think of him. It was mostly in passing, she said. She didn’t dwell on his death or wallow in grief over it.

And so it has been for me every day since Mom left us nearly 36 years ago. I think of her, too, each day. It’s usually in passing, just as she thought of her father.

I do miss her … every day. I also know she will remain in my own heart for as long it beats.

Preparing to bid farewell to a family patriarch

This picture tells you plenty about a man I want to honor with this brief post.

He is James G. Phillips. He was my Uncle Jim. He was my mother’s baby brother who died this past weekend at the age of 93.

He was proud officer in the U.S. Army. Uncle Jim retired eventually from the Army Reserve as a colonel and in a few days he will be laid to rest at Willamette National Cemetery in Portland, Ore. I will be there to say goodbye to my beloved uncle. He will be afforded full military honors.

Uncle Jim suffered most recently from what I would argue is the most dreaded disease imaginable: Alzheimer’s disease. His body looked the same. The disease, though, stole this man’s essence. It took away his ability to tell a tale, to convey any segment of his wonderful, full life. He was as fluent in Greek as he was in English, which is to say he spoke both languages with absolute clarity, humor and intelligence.

I am likely to say something later about the ravages of Alzheimer’s disease, as I remain committed to calling attention to the need to devote more resources, more energy and more research into finding an ultimate cure for this murderous ailment.

For now, though, I just want to offer this brief comment about someone who stood large in my family. I know we all have ancestors who engender pride. You do as well as I do.

However, I will fight like hell to avoid getting sucked into a spasm of grief. As one of Uncle Jim’s daughters told me just the other day, our sadness in this instance will produce plenty of reasons to rejoice in the many happy memories we all have of this great man.

It was a long, painful goodbye

Every year that passes since my mother’s passing somehow doesn’t make it any easier to look back on that loss.

Yet I am going to do so again right now as I remember Mom’s birthday. She was born on July 11, 1923 in Portland, Ore. Her parents were immigrants from Turkey. They were of Greek descent. My grandfather was a merchant sailor; my grandmother came to the United States on her own. She was the embodiment of intrepidity. My grandfather eventually stepped off the boat and settled in Portland, running a bakery.

Mom was the first of three children they would produce. Mnostoula was her name. She was a pistol as a young woman. She used to recall that time in her life.

However, Mom was dealt a bad hand in life. She didn’t live very long. She died in 1984 at the age of 61. She didn’t get the chance to celebrate nearly enough birthdays.

Mom’s passing came at the end of an agonizing period for her family. We were forced to watch her disappear in the proverbial sense. Alzheimer’s disease took its terrible toll on Mom over the span of time.

I want to mention that today because I am acutely aware that we are not alone. We know that many millions of families just like ours have gone through this misery. They know how it is to watch your loved one change. Sure, they look the same, but they aren’t the same.

It’s hard for me to recall the good times because the sadness of the long goodbye was so overpowering.

Mom was full of quick quips. Mom didn’t guffaw at the punchline of a good joke, but instead she would giggle in a sort of charming way.

Then the giggles came less frequently. Eventually she was unable to produce the quips that I remember. Over time she lost the ability to write her name, or to drive a car. Then she couldn’t bathe herself. Or feed herself.

Mom eventually she lost her speech.

All the while, Mom’s physical presence remained essentially the same. Except that the essence of who she was disappeared. It was gone forever.

Alzheimer’s disease afflicts an increasing number of families. It is said that the disease has a far greater impact on the caregivers than on the actual patients. Take my word for it, that is so very true.

It also serves to remind those in power that as the nation gets older the more imperative it should become to dedicate resources to find effective treatments to stem the symptoms of this relentless killer. Is there a cure on the horizon? Oh, we are left to hope and pray.

Another birthday is about to pass without Mom being around to enjoy it. She’s been gone a long time. The struggles she faced during her time on Earth remain vivid in the hearts and minds of those who loved her.

Happy birthday, Mom. I still miss you.

Alzheimer’s delivers far-reaching pain and suffering

A conversation I had this morning with a family member reminded me of something I’ve actually known for decades.

Alzheimer’s disease claims many more victims than just those who are afflicted with this killer.

A member of my family (not the person with whom I talked today) is battling the disease. His condition appears to be worsening. He is confused; he has lost virtually all the examples of mental acuity he used to display.

Eventually, this family member likely could lose his ability to speak, feed himself, bathe himself. What then? It falls on those closest to him — his wife and his children and grandchildren — to bear an unbearable burden.

Which brings me to my point. It is that Alzheimer’s disease inflicts far more harm on loved ones than it does on the actual victims.

How do I know this? My own mother died of the disease in September 1984. She was just 61 years of age when she left us. We carried that burden to the end.

The Centers for Disease Control and Prevention tells us that about 5 million Americans are afflicted with Alzheimer’s disease, a neurological disorder that robs individuals of their cognition. It steals their identity. It turns vibrant human beings into shells of their former selves.

As the nation continues to age, the number of Alzheimer’s diagnoses is bound to increase, piling on more heartache to loved ones who are left to care for them.

While the nation’s political leaders debate and argue over how — or whether — to spend public money on more Alzheimer’s research, it is good to remember the toll being taken on an increasing number of Americans who are left to cope with the ravages this killer brings to its victims.

Do we devote enough national attention to battling this killer, let alone devoting enough of our resources to search for effective treatments and, indeed, even a cure? Not to my way of thinking.

Nor to those who are left to care for those caught in the grip of a disease that robs them of their very being.

No ‘good’ way to lose a loved one

I concluded a long time ago that there is no “good” way to lose someone with whom you are close.

My wife and I are still emerging from our sadness over the loss of her mother. She passed away a little more than a week ago at the age of 93.

Yes, she lived a long life and, yes, it was her time to let go. She did so quietly and peacefully. How does one react to that event? With profound sadness, no matter what one might know intellectually about the circumstances leading up to that final moment on Earth.

I counsel friends and acquaintances all the time when I learn of a loved one’s passing that “It still stinks.” They’ll say something about their departed loved one is “in a better place.” My faith tells me they are. However, it doesn’t lessen the emotional suffering of those they leave behind.

As for the circumstances preceding the moment of death, I am one who has endured loved ones’ passing in all manner of ways.

My father died suddenly, shockingly in a boating accident more than 38 years ago. The last thing I said to him prior to his departure on a fishing trip to British Columbia was, “I’ll see you Wednesday” when he was supposed to return home.

He didn’t make it to Wednesday.

My mother’s death was preceded by another, equally heartbreaking circumstance. She died four years after Dad of complications related to Alzheimer’s disease. My family and I watched her disappear before our eyes — even while she still drew breath. Her cognition vanished, along with her ability to speak and eventually to feed herself.

The pain upon learning of Mom’s death was every bit as searing as learning of my father’s sudden death.

Even as our faith sustains us as we make our way through this life on Earth, it gets tested when we say “goodbye” to loved ones.

So it goes. Death has this way of strengthening us as we cope with our loss.