Alzheimer’s Disease and other Dementias—Time to Accept the Science and Reject the unknowing Pundits

By Larry Peterson

I was married to a woman who had Alzheimer’s Disease. Her diagnosis was determined not merely by her behavior, but by careful medical diagnosis. Today, there are those who occupy a public forum and use it to disseminate medical analysis based on their own dislikes and prejudices held against those they do not like.   They influence many viewers and listeners who may believe their “expertise” and begin doing their evaluations on whom these pundits reference. Publicly accusing folks of having Alzheimer’s Disease based on personal observation is disgusting. They all need an injection of “humility.” (I wish the CDC could come up with that).

Husband and Wife(s)

I have been widowed twice. My first wife, Loretta, passed away seventeen years ago after being attacked by Stage 4 Melanoma. We had met in grade school, connected in high school, and were married 35 years. Yes—we were together until death parted us. Being a man of faith, I am sure I will see her again.

I met Marty at church a few years later. I was president of the St. Vincent de Paul Society, and she was interested in joining. Her husband had died four years earlier, and we had something in common. In need of a secretary, she volunteered. We were in frequent contact because of our positions, and about six months later, we went out to dinner. Two years later, we were married. It was something I had never considered. I believe God helped us meet.

Loretta suffered from Lupus, Chronic Pancreatitis, Type 1 Diabetes, and Liver disease. The Melanoma came last. I had become her caregiver and even learned how to administer her IVs and give her injections. I became pretty good at it. However, she never fell victim to the demon known as Alzheimer’s Disease. That was a world that I had only heard of but never experienced “up close and personal.”  I may have been a caregiver to Loretta, but I was not expecting what lay ahead, nor was I prepared for it.

“Newlyweds” and Cancer

You never know what life might throw your way, and we hit our first real “bump in the road” during the winter of 2007 when I was diagnosed with Prostate cancer. However, it proved to be less of a challenge than what we had anticipated.  In May, I had a radical prostatectomy. I was blessed because they told me my Gleason Score was an “8” and I would have been dead in two years if I had not taken care of it. My recovery took several months but it has been thirteen years since the surgery, and I am still cancer free.  Praise the Lord; I can still talk about it. 

But it was not long before a different situation unexpectedly reared its ugly head. It all began when Marty walked up to me, raised her right arm, and ponted to her armpit. She asked me, “Feel this lump. It keeps getting bigger. What do you think it is?”

Marty had never been sick a day in her life. She had noticed the “lump” but had never said anything, expecting it to go away. But it did not go away. Instead, it got bigger; so did the one in her groin. I convinced her to to see our primary care doctor who, upon examining the “lumps”,  referred us to a surgeon. The “lumps” were surgically removed, biopsied, and the diagnosis was; Large Grade B-Cell Lymphoma. Chemotherapy was to be her next challenge. Amazingly, she was not concerned at all. She told me, “This is nothing. I’ll be fine.”

After the diagnosis, we again met with a surgeon. This time it was to discuss having a mediport implanted in her chest.  A mediport is an access point for IV treatments. It replaces the need to always access an IV line by using a person’s veins. The patient can avoid all that by having their port accessed with a Huber needle, designed especially for that purpose. After the infusion is complete, the Huber needle is removed, and a  band-aid is placed over the site where the needle was inserted. The patient never has to be stuck and, in my opinion, it is a wonderful thing. Marty had the surgery in January of 2011  She began chemotherapy treatments in March of that year. 

Time for Chemo

Marty’s cancer was found in her lungs, her liver, spleen, and various other places. A year and a half later the cancer was 50% less than originally seen by the PET Scan. (The full name for   PET Scan is Positron Emission Tomography. It is an imaging test that can show how your tissues and organs are functioning.  A radioactive dye called a tracer is used to show the activity).By 2014 her cancer seemed to be in remission. During this time I did notice a change in Marty’s cognitive state. She seemed to be forgetting things, not much but enough that raise some red flags. For example, she was redundant, constantly asking the same question over and over;  “are we having dinner tonight?”  “are we having dinner tonight?”

The one that always tore me up was when she would look at me with a frightened look and ask, “Are you going away now?’….Are you going away now?” While she was in the hospital, it was always her fear that I would not come back. It was awful to see her fear-filled face. I simply began taking her with me when I had to go out for something.

She had always baked “made from scratch” chocolate chip cookies, and truthfully, they were fabulous. So one day, I am watching as she goes about the kitchen getting out the necessary ingredients to make some. Acting as normal  as can be, she takes out flour, eggs, sugar, brown sugar, butter, and other things (I do not know all the ingredients she used to make these cookies) and places them on the counter. She has done this same thing hundreds of times.

I continued to watch from the TV room, and it was as if everything was perfectly normal. I can remember thinking that maybe she was OK and that they had made a terrible mistake. Then she stopped and stood there looking at all the ingredients and the big stainless steel mixing bowl in front of her. She kept looking, and then she began to cry. I got up and slowly walked over to her. “What’s wrong?” I asked.

She was sobbing now, and I did not understand. Then she blurted out, “What is all of this stuff doing here? What is it doing here? Am I supposed to do something with it?”

I hugged her, and I told her that I would put the stuff away. She smiled, I kissed her on her cheek, and then she went in and sat down on the sofa. I was not sure if she remembered what she was even doing a few minutes earlier. That moment in time was a reality check for me. Unexpectedly, Marty’s cancer went into remission as the Alzheimer’s exacerbated.

Alzheimer’s and Dementia; the difference

It is important to remember that Alzheimer’s Disease and Dementia are two different things. Alzheimer’s is a form of Dementia, while Dementia is a syndrome or a symptom of a cognitive disorder. There are many other causes of dementia besides Alzheimer’s Disease such as Vascular Dementia, Huntington’s Disease, Dementia with Lewy Bodies, and Parkinson’s Disease Dementia, to name a few.

A football player may develop dementia from years of head trauma received while participating in his sport. A retired fighter may be deemed as being “punch drunk” because dementia has taken hold of his brain after thousands of punches to the head. A diagnosis of Alzheimer’s Disease requires a special evaluation by doctors and trained psychologists in the field before the Alzheimer’s label is officially given to the patient.

My wife first exhibited “forgetfulness’ during her chemo treatments in 2011. I had heard of “chemo-brain” and asked her oncologist about her chemo treatments being the cause. He could not answer and said we would have to wait and see. It was not until the summer of 2014 when medical professionals gave an official diagnosis of Alzheimer’s Disease. That was after an MRI, evaluation by a neurologist, and having her and the family interviewed by two psychologists who specialized in the field.

She lived three years after diagnosis. Some Alzheimer’s patients live up to fifteen years, especially those diagnosed in their early fifties. The course of the illness is unpredictable, but the results are very predictable. Alzheimer’s Disease cannot be slowed or stopped. It just keeps at it until its mission is accomplished.  Here are a few facts:

  • Today, 5 million people are living with Alzheimer’s Disease
  • It is the 6th leading cause of death in the USA
  • One in three seniors dies from Alzheimer’s or another form of Dementia

Lastly, from a man who has lived with  Alzheimer’s  and watched it erase his wife’s memory and kill her:  

I wish to say to all those uneducated “experts” who proudly use their “bully pulpit” to place labels of Alzheimer’s disease and other Dementias upon those they do NOT like; you are making a mockery of the profession you are practicing. You should be ashamed of yourselves.

And please, never forget to ask the Patroness of those with dementia and mental illness for her intercession. Her name is St. Dymphna  Click on her name and say “HI.”

Copyright©Larry Peterson 2020

 


Alzheimer’s Disease—The Ultimate Enemy of the Lifelong Love Story

By Larry Peterson

If you and your spouse have lived within a marriage that has been filled with an unconditional, unselfish, love for each other, then you have been truly blessed. Giving of oneself to another “no matter what,” creates a connection that can never be broken, and it leaves behind a journey that has been sheathed with laughter, joy, comfort, and compassion powered by that love.

This was God’s plan, and many have embraced it and lived it and reaped the rewards of truly being ONE. Loving someone more than yourself can be a hard thing to do and many have tried but failed. But far more have tried and succeeded by emptying themselves for each other.

I have two dear friends, better yet I shall call them the BEST friends anyone could ever have. Their names are Mike and Roberta, and we met 35 years ago when our sons were playing youth baseball. Their friendship was unconditional, unquestioned, and given freely, without reservation. They were unhesitatingly there for my family and later, after my wife, Loretta had passed, for me.

As is the way of things time never waits for anyone and keeps moving forward.  Now Roberta looks at the dying person in the bed before her and realizes that part of herself is lying there too. Suddenly their lives together scroll before her. The courtship, the wedding, the birth of their child, the laughter, the good times and the bad, the crying, and so forth. This is when having God in your life is crucial. Hope springs eternal and therein lies the truth of the power of faith.

My friend, Mike, was raised in an orphanage in Philadelphia. Long ago, his mother dropped him off in front of the place on a snowy, Christmas Eve. She left him standing there with a note pinned to his jacket. He was four years old. When he turned eighteen, he was dismissed from the orphanage, given a few bucks, and offered “best wishes and God’s blessings.”

He walked away from that place and immediately joined the United States Marine Corp. From that day forward, Mike, who was a trucker, has walked, talked and looked like a Marine. Most of all he has loved his family and his country as completely as he could.

Roberta, who was a florist, was one of three sisters and was also from Philadelphia. Her life looks like different chapters in a novel whose genre could be considered “urban legend melodrama.” She was one of three sisters and was abused as a child. She lost her first husband to diabetes when she was thirty-one years old. Her father, an alcoholic, was burned over 75% of his body and she cared for him until he recovered and could somewhat function on his own.

Then she turned to alcohol which ultimately led her to Alcoholics Anonymous. Mike was also attending AA, and that is where they met. He became her sponsor, and he was relentless in his quest to get her to stop drinking. She eventually did, and they got married. (Neither of them has had a drink in over 50 years).

A half-century of climbing and struggling down into the valleys and over the mountains of the journey called “life” has passed. They never wavered, stood tall, and together stared down and conquered all obstacles in their path. They raised a son who grew up to be the chief pilot for a well-known airline. Mike and Roberta are a living definition of the word, marriage.

One more challenge stands before them. The only problem is, this time only one of them can confront the challenge. And, upon completing that challenge, that person will be alone.

Mike has been attacked by the cruel demon known as Alzheimer’s disease.  It began erasing his memory some years ago, and it has relentlessly worked its evil 24/7. Today Mike is in a “memory care unit” inside a nursing home. He remembers nothing yet his face lights up and he smiles ear to ear when his dear Roberta walks into the room. He thinks she is his “mommy.” Except she is not.  He also has lost the ability to swallow and can no longer eat or drink.

His lover and best friend is now faced with the task of watching him leave her forever. She has asked Hospice to keep him pain-free and as comfortable as possible. The journey of the long goodbye has reached the last turn before arriving at the station. All that Roberta can do is embrace what was and know that his spirit will always be with her. Then she can take comfort in knowing that one day, holding hands, they will stand together again.

May God bless and have mercy on all Alzheimer’s victims and their families.

 

 

 


Are the Widowed Still Married or No longer Married? Widowed Catholics have Different Viewpoints

 

 

journeysthrugrief.wordpress.com

By Larry Peterson

We have come to know and believe in the love God has for us. God is love, and whoever remains in love remains in God and God in Him.”

The above quote from 1 John 4:16 led me to write what follows. It is a profound and beautiful quote and we should all try to remember it.

I have gone from being a husband to being a widower; twice.  My first wife, Loretta, died of cancer in 2003. My second wife, Marty, died from Alzheimer’s disease in March of 2017. What is interesting is how we, the widowed, perceive our widowhood.  I have discovered that some who have been widowed, both men and women, still consider themselves married. Some, like me, do not. Why is that?

Grief and loneliness are not fleeting, emotional upheavals. Contrary to what some of the experts might say, you never “get over it.” When a man and a woman have shared their lives with each other, given of themselves to each other, cared for each other and loved each other—in good times and in bad—it is a beautiful thing. It is how God planned it.

The married couple, especially those acknowledging God as their unifying, foundational support, become a new family. The man complements the woman; The woman complements the man; together they become one.

When the death of one of the spouses occurs, the one left behind oftentimes may feel completely deserted. There is a part of them missing. Feeling lost and alone no one, even your own children, cannot take away that feeling of being forsaken. Instead of  “getting over it” the widowed person begins a process.

Each and every one of us is unique and have our own way of dealing with the loss. We take our grief and loneliness and slowly begin placing it somewhere inside ourselves. The common denominator for the widowed is this: it takes time, lots of time.

Enter the quote at the beginning of this essay. As a man who is rooted in his Catholic faith, those words within the quote of, “God is Love,” explains (at least for me) what the death separation means. I know that both of my wives were women of faith and that they received the last rites.

I was married twice. Both times in the church. Therefore, when Loretta passed away, I became unmarried. ( I never thought of being  “unmarried” nor of getting married “again.” It just happened). My meeting Marty was unplanned and unexpected. But then I began to see the hand of God in all of this. Stay with me now.

Loretta is always a part of me. She lives on in my mind, heart, and soul. I was with her when she received the Anointing of the Sick.  Marty will always be a part of me and lives on within me also. I was with her when she received the Anointing of the Sick.  I loved them both but in different ways. It was amazing to discover this. God had taken Loretta who became embraced by eternal Love. Fourteen years later, God took Marty, who is now, also embraced by eternal Love.

From the bible quote, it all becomes crystal clear how this works. And it is beautiful. If God is Love and my spouses are with HIM (and I know that they are because all the power of the Church was bestowed on both of them at their hours of death), all they now know is LOVE.

Un-canonized saints, I can talk (pray) to them, and I know all they can do is Love me and want the best for me.  There can be no anger or envy or avarice or jealousy or anything like that in the Love world. I may remain a widowed man or I may not. I have no idea. Whatever way the Spirit moves me I leave it all to Him. I know I am in Good Hands.

There is the old cliché of, “it is better to have loved and lost—“ I have wondered about that because the lost part can really hurt. But, since I do know that God is Love, I would do it again.

 

 

 

 


Dementia and Medication Distribution–a Daily Challenge for the Caregiver

Small pill organizer

By Larry Peterson

In America, one in ten people over the age of 65 has Alzheimer’s Disease. (Alzheimer’s Disease is only one of many types of dementia. There are also other types, such as Vascular Dementia or Lewy Body Dementia and many others). Please note: There is no “magic” pill that can cure Alzheimer’s Disease.

Since I was the caregiver for my wife, Marty, who had this insidious illness, I thought I could share some of my experience in dealing with the medication factor. It was a challenge, to say the least, because the meds were being constantly adjusted and oftentimes changed to something different.

Medicine distribution by the caregiver could be the most critical factor in a person’s quality of life. Medications are powerful and, if used as directed, cannot only prolong the patient’s life but can also help maintain a better quality of life for a longer period of time. Please note: There is no “magic pill” that cures Alzheimer’s Disease.

My first tip is, and I believe this may be the best tip I can give anyone: You called a plumber when you had a broken water pipe so now you have called a doctor for a damaged loved one. You need their expertise and you should expect crisp, clear answers to any questions you may have. Whether or not the patient is your spouse, child, parent, grandparent or old Aunt Lucille, never be afraid to ask a question.

Alzheimer’s Disease presents in three general stages; early stage (mild), middle-stage (moderate), and late-stage (severe). During the early stages, the patient will still be able to interact with you about the medications they are receiving. However, as time goes by, invariably these meds will change and increase in dosages. In addition, the patient will start to lose the ability to understand what is going on. That is when your responsibility begins moving into high gear especially when it comes to med distribution.

Marty suffered from several illnesses. Besides Alzheimer’s Disease, she was recovering from cancer, (Lymphoma),  had A-Fib (Atrial Fibrillation is a leading cause of strokes) and a severely broken ankle. This required the involvement of not only her primary care doctor but also an oncologist, a cardiologist, and an orthopedist. They had all prescribed different meds.

The first time you are presented with a bag of various medications it can be an intimidating experience. You look in the bag and see a bunch of vials and a packet of paperwork. The paperwork includes individual explanations and descriptions of each of the meds in the bag. Take a breath, stand each vial on the table or counter and match each one to its corresponding paperwork.

Next step is to make a list of every one of the meds, the dosage of each, and how many times a day it is supposed to be given. (FYI–the letter X denotes times per day so a 3X means three times a day). I entered my list into a word.doc format and stored it on my computer. This way it was easy to update as doses and meds were changed by the doctors. I also printed copies out and always had one with me when visiting one of the doctors or making a visit to the hospital.

The next thing you MUST do for yourself is to purchase a pill box organizer. These are (in my opinion–indispensable). Since I had to distribute meds 4X a day I purchased an organizer that had four rows of seven-day pockets with snap-lock lids. I also had an organizer that had two rows of seven pockets which I used for vitamin supplements.

Once a week, usually on a Saturday evening, I would clear the table and spread the medicine vials out. After several weeks I began to know exactly where everything was supposed to go. For example; Furosemide (a water pill aka Lasix) could only be given on Monday, Wednesday, and Friday, Coumadin (a blood thinner, was given in doses of  6mg  4X a week and 7.5 mg 3X a week). The pillbox organizer made it quite simple to separate these meds properly into their designated days.

Once the pill box organizer was filled I was ready for the week ahead. When Sunday morning came the routine started all over. I just had to open the Sunday morning box and take out those pills and give them to my patient. Then it was off to Mass.

©Copyright 2017 Larry Peterson