The “Piano Smile” A Christmas Season Moment

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Through the fog of Alzheimer’s–The Piano Smile

 

By Larry Peterson

What follows happened several years ago. The time or date does not matter but the moment is timeless.

Occasionally a smile unexpectedly bursts forth from someone and transforms the day into pure sunshine. That person might be a spouse, your child, a relative, a friend, or even a stranger. This is about one of those smiles. This smile came from my wife, Marty.

Marty was diagnosed with cancer (lymphoma) in 2010. After many cycles of chemotherapy, the cancer seemed to be in remission. But her memory had been slipping and three years later she was diagnosed with Alzheimer’s disease. As her primary caregiver, what I had learned was that   Marty had taken a journey (as do all Alzheimer victims) into a nether world, a nether world with an ever-vanishing landscape of what once was. An invisible eraser had entered her mind and was moving back and forth, making her memory vanish with its incessant woosh, woosh.

My task as her caregiver was to do my best to guide her through the ever-increasing unknown world she had entered. If that sounds bizarre, unusual, or weird, that’s because it was. I, as do all caregivers to those with this illness, do our best to navigate this strange world where nothing is ever the same and every day is unpredictable.

Patches of beauty in a world of expanding nothingness

The nether world mentioned does have patches of beauty, little islands if you will, strewn randomly about the expanding nothingness. What follows is about finding one of these little islands, stopping there and thanking God for the moment. These moments were one of my perks. I never knew when they would appear but, when they did, I was always grateful.

Two years before, Marty had fallen and broken her right ankle. It was a severe break that required surgical repair. The rebuilding process included the use of various pins and screws. The course to recovery included time in a rehab center, ongoing physical therapy at home, and increased doctor visits. The Alzheimer’s had rapidly exacerbated. I realized that the combination of trauma, hospitalization, surgery, anesthesia, rehab, and time away from home contributed to her rapid cognitive decline. Breaking her ankle had just added ‘fuel to the Alzheimer’s fire.”

Marty began complaining of pain in her surgically repaired ankle the day before Thanksgiving, 2016.  Thanksgiving Day, the ankle was discolored and quite swollen. She could not stand up, and even touching it resulted in severe pain.  Our Thanksgiving holiday proved to be far from traditional.

The first thing Friday I brought her to the doctor. He immediately knew it was seriously infected and prescribed antibiotics. The medication did not help, and by Tuesday she was in the hospital. Thursday her ankle was operated on, and all the hardware was removed. They cleaned the infection from the site the best they could. However, the infection had traveled deep into her bone—Onward to a rehab facility.

Marty was taken by ambulance from the hospital to Bon Secours, Maria Manor, in St. Petersburg, Fl. I arrived a bit after she did. When I walked into the lobby and down the hall, to my right was the chapel, and to my left a spacious room they used for events. In the rear corner of this room, I noticed a grand piano sitting quietly by itself, minding its own business. Marty, who began playing the piano at the age of six, always talked about how she wished she could play a Grand Piano.  My “wheels” began spinning, and an idea was born.

We had a piano at home, and she played it every day. The Alzheimer’s Disease had not seemed to have affected that part of the brain, and she could still read and play music. But she would not play in front of people. She even shut the front door when she played at home so no one would hear her (that drove me a bit crazy). Anyway, I was determined to get her to sit at that Grand Piano and begin fingering those keys. I knew it would be no easy task.

“that’s a Grand Piano in the corner”

She had been admitted on Saturday evening, and on Sunday afternoon I got her into the wheelchair and took her for a tour of her temporary home (She was to be there until at least the beginning of January–maybe longer). We took the elevator down to the first floor and somehow “managed” to find our way into the event room. No one was in there, and I said, “Hey–check it out, Marty. That’s a Grand Piano in the corner. Let’s take a look.”

My goal was to get her to simply sit on the stool. She refused. I knew that timing was everything, and this was not the time. She would not remember that we were there, so I would have to choose a better time and a better way of introducing her to the piano. Sometimes people with Alzheimer’s do not remember things that happened minutes earlier.

Tuesday, I managed to get her to slide out of the wheelchair and onto the piano stool.  She felt the keys and grinned. Then she got back into the wheelchair. Thursday was the Feast of the Immaculate Conception, and I knew in my gut this would be the day. I brought sheet music with me from home and stuck it in the pouch in the back of the wheelchair. She had no idea.

Thursday, I took her down to the chapel for the 11 a.m. Mass.  Mass ended at 11:45, and I casually began pushing the wheelchair toward the side entrance of the event room. She had no idea where we were going, but before she knew it, she was next to that Grand Piano. This time she pushed herself up and immediately sat on the stool. Her fingers instinctively reached for the keys in front of her. At first, they remained still.

Slowly her fingers began to feel their way around the keys under them. They were not pushing down, but I knew the moment had come. I reached into the pouch behind her and pulled out sheet music. I placed it in front of her and softly said, “Here ya go.”

Her fingers began to move—

Her fingers began to move, and the next thing I knew that event room was filled with the music of the Skater’s Waltz. They say a “picture says a thousand words” so I quickly grabbed my phone and took her picture. We had landed on one of those little islands of beauty and the “Piano Smile” captured in the photo proved that to be true.  For me, that “Piano Smile” is one of the greatest Christmas gifts I have ever received.

She did not remember being there and she had no idea that more than 30 people filtered in and took seats to listen to her playing. I did bring her back again and I showed her the photo I had taken. I had it enlarged and framed. When I showed her, she stared at it and stared at it and then tears came to her eyes. I was not sure what was happening inside her head but I believed there was some ‘remembering” going on.

I insisted on bringing Marty home earlier than they had planned and her doctor agreed. .She came home Christmas Eve. The Alzheimer’s and lymphoma combined to take her on her final journey March 27, 2017.I still have the picture and her Piano Smile lives on.

Merry Christmas  to everyone

Copyright©Larry Peterson 2022

 

 

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—The Ultimate Enemy of the Lifelong Love Story

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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

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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

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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