A Caregiver Remembers; Living with Alzheimer’s

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Alzheimer’s disease                                                                                          en.wikipedia.org

By Larry Peterson

What follows is some insight for those who have never been a primary caregiver. This is more like “a day in the life” of someone living and caring for an Alzheimer’s patient who is usually a spouse or a son or daughter.  Many folks have seen people with Alzheimer’s or have relatives or friends with the disease and think they “get it.”  Still, unless you, as a caregiver, live it, day after day after day, year after year, up until the end, you do not “get it.” You just can’t.

Simple memories triggered

My thoughts and I were sitting together reflecting the other night, just floating back to days long gone. The trigger for the thoughts was my wife, Marty, who passed away from cancer and Alzheimer’s Disease five years earlier on March 27. The thoughts kept bouncing around, and the “little things” that used to happen frequently began to dominate the memory flow. Anyway, I would like to share some of those simple memories. This is from an evening I remembered well. It was when I promised I would call her in sick for work.

It began like this. After dinner (I had turned into a pretty good cook), Marty asked me, “What time is my show on?”

Sundowning

Reflexively I would ask her, “Which one?” I knew she had no favorite show. I also knew she had stepped into what is known in Alzheimer’s disease as “sundowning.” I called it, ‘Uh-oh time.’ I called it this because these were the moments when she would unexpectedly become frustrated and agitated.

I could see her tensing. Then she would look at me and, raising her voice a decibel or two, would say, “You know what show. Just tell me what time it comes on.”

I had become a guilt-free liar

As a Catholic who loves his faith, I do not lie. However, the fact was, in my caregiver world, I had become a guilt-free, therapeutic liar. It was about survival, mine and hers. My justification was that without me, she was alone, and she was no longer able to survive on her own. “Sorry, sweetie, your show is not on tonight. There is a special about sharks on, and sharks scare you, right?”

“You know I don’t like sharks. I am scared of sharks. But that’s okay. I can watch the news, right?’

“Absolutely.” I had lied to my wife, Marty. I felt no guilt. It was a necessary tool for me to use in my role as her caregiver.

She headed to the sofa, sat down, and picked up her puzzle book. She always was good at doing the anachrostics (I find them incredibly difficult). Still, she would sit and look at the page, holding the pencil on it, which never moved. Then she said, “Do I have to go to work tomorrow? I’m so tired. I really could use a day off.”

Liar’s Hat on

Two years earlier, I might have tried to explain that she did not have a job and had not worked in seven or eight years. She still may have understood. Those days were gone. So, with my “Liar’s Hat” still in place, I answered, “You’re right. You do look tired. I think you need a day off too. Don’t worry. I’ll call in for you and tell them you’re sick.”

“You would do that for me?

“Of course, I would do that for you.”

That’s’ so nice. I’m so glad I don’t have to get up and go in. Is today Sunday?”

Whew, a relief question. I could  tell the truth. “No, it’s Wednesday.”

“Wednesday, are you sure?”

“Yes, it’s Wednesday.”

Things were quiet for a while It was about 9 p.m. when I walked back to the bathroom. Suddenly I hear smashing and banging coming from the utility room off the kitchen. I head in there, and in a matter of minutes, Marty had pulled out of the wall cabinet all of the plastic containers, glasses and cups, and other things inside and stacked them all on the washer and dryer below. “Hey hon, what are you doing?”

We have to get rid of the junk

She looks at me, and I can tell she is agitated. “We have all this junk. We have to get rid of it. Why do we have all this junk? We have to throw it out.”

Immediately, I switch back to my ‘Liar’s Hat’. “Okay, when should we throw it all out?”

“I don’t know, maybe right now?”

“Well, it is kind of late. Maybe we can do it in the morning.”

“I don’t feel like putting it all back tonight.”

“Don’t worry about it. I’ll do it.”

“Oh, thanks. I’m too tired

There was one final comment. She looks at me and asks, “We are married, right?”

“Yes Marty, we are married.” (That was not a lie)

She got into bed about 9:30 and was asleep in about two minutes. I was mentally worn out but I looked at her and realized that an innocence had come from an unknown place and  embraced her. I also knew that when she awoke in the morning, she would not remember anything of what had happened.

I was blessed

Since I do not “punch a clock” I have the joy of being able to attend daily Mass at 8 a.m.. Marty will wake up at about 7 a.m. and always ask me, “Are you going to church?”

I answer, “Yup.”

She will ask, “Will you take me with you?”

“Of course.”

From 1 Corinthians 13:4-5

 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.

As a caregiver to a child of God, I was blessed.

Copyright©LarryPeterson 2022

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

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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 and other Dementias, 2019; a growing Epidemic that affects us All

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Alzheimer’s victim     en.wikipedia.org

By Larry Peterson

My wife passed away almost two years ago, a victim of Alzheimer’s Disease. I stay in touch with the Alzheimer’s  Association because I want to keep abreast of advances and other news that pertains to this illness. Yesterday I received the 2019 Alzheimer’s Disease Facts and Figures report for 2019. Since this disease ignores all human boundaries, I thought I might share some basic info about this topic.

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 playing 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 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 the official diagnosis of Alzheimer’s Disease given. And that came only after an MRI, evaluation by a neurologist, and having her and the family interviewed by two psychologists.

She lived three years after diagnosis. Some Alzheimer’s patients live up to fifteen years, especially those who are 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.

According to the Alzheimer’s Associations 2019 report, 5.8 million Americans are living with Alzheimer’s. The projected number by the year 2050 is 14 million. Every 65 seconds someone in the United States develops the disease and more than 16 million Americans, (mostly family and friends) provide unpaid care for people who have Alzheimer’s or another type of dementia.

Heart disease has always held the title as being the number one killer in the United States. The good news is that between the years 2000 and 2017 deaths from heart disease decreased by 9%. At the same time deaths from Alzheimer’s disease have increased by a whopping 145% making it the sixth leading killer in America.

Today in America one in ten people over the age of 65 has been diagnosed with Alzheimer’s disease. They have determined that among seniors who are 85 or older, 32% have the disease. As modern medications and healthy eating and cleaner lifestyles promote lengthier life spans tne number of folks living into their nineties continues to climb. Along with that comes an increase in Alzheimer’s cases.

Finally, early symptoms of dementia may include confusion about location or what day it is; poor judgment; unable to find familiar items; or simply mood and or personality changes. But PLEASE—do not diagnose someone you know and love as having dementia. Many things can cause a memory lapse or forgetfulness. We all are victims of those things. Only trained and qualified personnel can diagnose such a serious disease.

The best thing we all can do when confronted with these situations is pray hard and call our doctors.

Lastly, 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 2019

Dementia and Medication Distribution–a Daily Challenge for the Caregiver

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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