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

 


For Valentine’s Day–A Love Story Embraced by God (This is a true story)

 

pineterest.com

By Larry Peterson

It was the spring of 2014. Ed and Cathy Carmello (not their real last name) had only been my neighbors for a short time, less than a year I think.   They had met when Ed was 60 and Cathy was 40. They fell in love and, never having been married, happily “tied the knot.”  They had just celebrated their silver wedding anniversary and were simply enjoying retired life together.

There was a problem. Ed’s prostate cancer had returned with a vengeance and was destroying him quickly. Cathy was in her final battle with  Stage IV melanoma. Since I was a prostate cancer survivor and my first wife had died of melanoma, I was able to discuss their cancers openly with them. They knew I understood.

It was a Thursday afternoon around 4 .p.m. when I left to take my daily walk. I headed down the street, and there was Cathy standing on her front lawn supported by her walker.  I could see she was fighting to hold herself up. A bit anxious, I hurried over and said, “Hey, Cathy, what’s going on? Is everything all right?”

“I was waiting for you, Larry.  I need to talk to you.”

I was dumbfounded. “Are you kidding me? I never walk at this time of day, and you say you were waiting for me?”

“I just knew you were coming by.  I can’t explain it.”

A bit unnerved, I leaned against her SUV as she leaned heavily on her walker. “You know Ed is dying, right?”

“Yeah, Cathy, I know.  We talked about it.  He’s an amazing guy. What about your prognosis? Any change?”

She smiled and looked me right in the eye saying, “They told me I only have a few weeks left.”

I tightened my lips, took a breath, and asked, “What can I do?”

They knew that I was Catholic and an EMHC (Extraordinary Minister of Holy Communion).  Cathy asked me if I could bring a priest over. She told me that they had been non-practicing Catholics and had not been to church in years. It was time for them to “make things right with God.”  I said, “I will put a call into Father as soon as I get back to the house.”

“Thank you so much.  That is why I was out here waiting for you.”

I simply nodded. She smiled and thanked me and I walked her back to the house. She did not mention herself once, only her husband.  She told me how she wished she could ease his suffering and how wonderful it might be if they could go for a bicycle ride just one more time.  Then she mentioned how she thanked God for every moment they had had together.

We went inside and she, Ed, and I hung out for about ten minutes just chatting.  Cathy excused herself and slowly walked back to the bedroom.  Ed quickly told me how he wished he could ease her suffering and how God had been so good to him allowing him to find such a great woman to share his life with.  I took in a deep breath. (You know, when God is present sometimes it is hard to breathe).

I called our newly ordained priest, Father Scott. He came over the next day and spent about an hour with Ed and Cathy.  Ed and the young priest both had roots in Roanoke, Virginia, and talked and laughed and had a raucous good time together. Even though the two of them were separated by more than 50 years, it did not matter.  It was as if they had grown up together.  It was beautiful.

Father heard their confessions, anointed both of them and gave them Holy Communion. He told them he would come back the first chance he could.  Sunday was Palm Sunday. It was the beginning of Holy Week, and he would be busy.  They all hugged and said good-bye. On Palm Sunday I had the honor of bringing them Holy Communion.

Easter Sunday I was again privileged to bring Ed and Cathy Holy Communion. In so doing, an unexpected sight was forever etched in my mind.  They were lying next to each other in bed, holding hands.  Ed smiled and said, “Larry, we are SO happy. This is the greatest Easter we ever had.”

He turned and looked at his wife who was smiling lovingly at him. She reached over and wiped his wet, happy eyes. They kept looking into each other’s eyes, and I thought they were maybe looking into each other’s souls. It was a moment that was filled with a shared spirituality I had never seen before. I could actually feel it. I have no doubt that at that moment Jesus was there with them holding their hands in His.

As for me, I thank God for their friendship and for being a part of their final journey. Sometimes I like to think that I took two people in love to the airport and watched them get on a plane for a a true flight to paradise.

copyright©Larry Peterson 2014