Remembering Alzheimer’s Patients and their Caregivers

IT MAKES SENSE TO ME

By Larry Peterson

Alzheimer's patient--Wikimedia Commons


Remembering Alzheimer's Patients
&
their Caregivers
 
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A Catholic Priest has Extraordinary Powers–He Has Been Given the Power of Christ Himself

IT MAKES SENSE TO ME

By Larry Peterson

Recently I wrote about how being a Catholic caregiver gives that person an "edge". I had no idea that  only a day later I would be standing next to an unconscious body that was being kept alive through the use of mechanical means and medications. Somewhere inside that body was my wife, Marty. She was on "life-support"and my work as a caregiver was either on hold or would soon be ended.

Since early in 2011 Marty has had serious medical issues such as lymphoma and Alzheiemr's Disease. But entering the year 2017 things began spiraling downward. The Alzheimer's was markedly advanced and was even affecting her walking. Several times, she even forgot who I was. One day a week or so ago, I wanted to give her her afternoon meds. She refused to take them. She said she could not let a stranger give her poison. I was accustomed to her unpredictability but this was a first. I was stunned..

As weird as this may seem, I actually had a close friend, Geri, come over to "identify" me to Marty. My wife was unflappable and refused to give in. After about a half-hour of cajoling by Geri she finally, yet haltingly, relented. She gave in and took her pills.

Last Thursday, Marty spent most of the day sleeping. She ate nothing. I attributed it to new meds she had been prescribed. Friday the sleeping intensified and again she did not eat. Saturday was worse and late in the afternoon, when I checked here vitals, her oxygen level was at 82. I knew that was not good. I called 911.

Anointing of the Sick (Extreme Unction) en.wikipedia.com

The paramedics oxygenated her and took her to the ER. She was freezing cold and they discovered her core temperature was down to 93 degrees. Sepsis was suspected and later on validated. I had gone home because it was to be several more hours before a room opened up. I called in at 4 a.m. I was told that she was in CVICU and on "life-support". She had become "unresponsive" and needed to be intubated.  I was shocked to hear this.

To the point of this article. Through my jumbled thoughts one thought was crystal clear. Call the priest. I immediately did. I had instinctively reached out and taken advantage of my Catholic "edge". I am telling you, it felt good to make that phone call. I knew help was on the way---help for the spiritual side of my wife.

Fifteen minutes later I was at the hospital in the ICU unit,  standing next to my wife who was in her "life-support" bed. All the machines, tubes and hoses made the scene appear to be part of a science fiction movie.  The beeping and ticking was almost like the background for reggae music. All of this was supposed to help her get well. She was sedated and had no clue as to what was going on.

Shortly after,  Father Anthony Coppola, my pastor from Sacred Heart Church, came hurrying into the room. I always have had the utmost respect for the priesthood and the men who wear that collar. But I was about to appreciate the Catholic priesthood and the power that is in it in an entirely different way. I was also about to realize that  the purpose of God's plan for the three of us to be in in that room, together, at that moment, was about to come together.

What happened next is part of the mystery of Faith. It is that great intangible that cannot be seen or touched. If a person has been gifted with faith and has embraced this gift they understand. If not, they have chosen not to. As St. Thomas Aquinas said so long ago, "“To one who has faith, no explanation is necessary. To one without faith, no explanation is possible.”

Father and I chatted briefly and then he went to work. He was about to administer the Sacrament of Anointing of the Sick (formerly known as Extreme Unction). A Catholic priest is the only person who can offer the Holy Mass and administer the Sacraments of Penance, Confirmation (usually the bishop does this) and Anointing of the Sick. He has been given this power because he has received the Sacrament of Holy Orders.

He opened his prayer book and began to read. Then he took holy oil from a little gold receptacle, dipped his thumb in it, and anointed Marty's forehead and hands with it. He prayed some more and then it happened. He said these words, "By the authority which the Apostolic See has given me, I grant you full pardon and the remission of all your sins in the name of the Father, and of the Son, and of the Holy Spirit." 

Marty had just been given what is known as the Apostolic Pardon. This was that moment in time where I understood everything that was going on. She was there, still alive, because God wanted her to be fully prepared for her impending journey, a journey that would now be straight and direct to Jesus Himself. I was there because without me, the priest would not have been available to impart his  power.

But this moment belonged to Father Anthony, a Catholic priest who had the power and authority to impart this pardon. Make no mistake, these are the moments when the radiance of the Catholic priesthood shines through because these are the moments a priest stands in the shoes of Christ . It was a beautiful and humbling thing to see.

                                  ©Copyright Larry Peterson 2017

     

Alzheimer’s Keeps Reminding Me Why I Love being Catholic

IT MAKES SENSE TO ME

By Larry Peterson

I have written about my wife, Marty’s, Alzheimer’s Disease several times. This is another. It was unplanned and spontaneous, triggered by the unique world she and I have come to share together.

pineterest.com


I was trying to write something but I was stuck in “neutral”. No pencil scratching, no pen sliding, no keyboard clicking. Then Marty came in and stood there just looking at me and not saying anything.  I smiled at her and said, “What’s going on?”

She shakes her head and says, “I really do not feel like going to work tomorrow.” (She has not worked in almost ten years)

I nonchalantly reply, “Okay, then don’t.”

“Larry, please don’t start with me. You know I have bills to pay.”

“Well then, I’ll call in for you. I’ll tell them you are not feeling good.”

She quickly throws a curve at me. I back away, surprised at the sudden diversion. Raising her voice she says, “We had better get a few things straight. I have standards and I am not going to be living in sin. I cannot be living here if we are not married.”

I did not know what that had to do with her ‘job” but I mentally bobbed and weaved and circled around. Quickly I said, “We are married.”

She was stunned. She stared at me and I stared back. A moment passed and she said, “We are?”
“Yes Marty, we have been married for ten years.”

“I suppose you know this for a fact? How can you be sure?”

“We have the papers to prove it.”

 I quickly said an emergency “Hail Mary” asking for help. God knew I was in over my head and immediately sent one of His special people. Maybe it was St. Therese or St. Joseph or maybe St. Martha. I really did not care who it was but just like that I had a “thought”. (These folks do not fool around when sent on a mission).

I had her sit down on the sofa and wait for me. I headed back to my “office” (some may call it a man-cave) and began rifling through the file cabinet in the corner. The top drawer is stuffed with all sorts of “important” papers and I knew that somewhere amongst the mass of unorganized stuff was our marriage license. I started scratching away, peeling papers apart.

I did not keep track of the time but when I looked at the mess of papers I had strewn about it must have been fifteen minutes. Then I hit pay-dirt. I found our marriage license. I was sure this would prove to her once and for all that we were, in fact, married.

I hurried back to the sofa and to the woman who immediately asked if I had just gotten home. “Yes,” I shouted. “And look what I have.”

The Pinellas County Marriage License was too confusing for her to understand. The print was small and even though our names were legible and the paper was emblazoned with the words, “Marriage Record”, it did not convince her. I realized she needed “Catholic” proof. That was why she had used the words “living in sin”. Now we come to why I wrote this in the first place.

I slowly headed back to the file cabinet to put the marriage license away. But I had not noticed when pulling the marriage license out that behind it was the 8 X 11 marriage certificate that the church had given us. It was behind the license the whole time. I could not believe it.

It was not a legal document but it was a BEAUTIFUL CATHOLIC document. It had our names on it. On the left side was a Cross with connected wedding bands connected to it. The church’s name was there and it was signed by the deacon and the pastor. It was also perfect for framing.

I had an 11 x 14 frame that was unused. Ten minutes later I brought it out to her. I had her sit next to me on the sofa. “Are you ready?” I asked.

“For what?”

I held this framed certificate up in front of her. She stared and stared at it and then she looked at me and began to cry. She put her head on my shoulder and cried some more. We have used the Hail Mary and the Rosary to help us over some rough Alzheimer moments. This time the purely Catholic marriage document was the answer to the prayer. It now hangs in the Florida room and she can see it every day anytime she needs to. Damn—I love being Catholic.
                                        ©Copyright Larry Peterson 2017
     

Visiting Homebound Elder-Catholics—A Privilege and sometimes, an Unexpected Challenge

IT MAKES SENSE TO ME

By Larry Peterson

I have been an EMHC (Extraordinary Minister of Holy Communion) for over 20 years. I have had the honor and privilege of bringing Holy Communion to many people in many places: hospitals, nursing homes, hospice centers, assisted living facilities,and, of course, to the homebound. I love being part of this ministry and it has brought me in touch with some amazing people who have lived their Catholic lives quietly, faithfully and without fanfare or notoriety.

Most of those I visit are Elder-Catholics.These are the Catholic faithful who have, throughout their lives, supported their church, been active in various ministries and carried on the faith that was and still is, part of their very being. Some were born into the faith and it was nurtured in them by their parents and oftentimes by nuns, brothers, priests and Catholic laypersons.  They in turn have passed it on to their own children. Some found the faith as adults and converted. (I so admire those people.) And so, as is the way of things, the Church continues.

 I would like to share a story about one of these  people. His name is John. I have been bringing  Holy Communion to John every Sunday for a little more than a year. He is 90 years old, an Army veteran, spent almost 30 years in the Far-East and was married for 60 years. His wife, Mary, passed away several years ago. He loved her dearly and misses her greatly. John is not delusional, or suffering from dementia or anything like that. His mind is sharp and clear. Physically, John is  deaf (hearing aids help a tiny bit) and wheelchair bound.

 When I arrive at his front door, I push the doorbell. I hear a chime, he does not.  Inside, several strobe lights begin to flash notifying him someone is at the door. He is expecting me and the front door is unlocked. I walk in and he gives out a big, "Hey, hey, good morning." I more or less holler back, "Hey John, how you doing today?"  He is always wearing  a smile. He says, "Well, I'm still here."  We both laugh.

John is facing a dilemma.  He picks up the newspaper from a few days before and points to a story. "Have you gotten any feedback on this?" I look at the paper and he has it opened to an article dealing with the church's newly revised guidelines on cremation. I shrug and tell him I have not. He says, "I have a problem and maybe you can help me out. I need some guidance."

I am not "Father Larry" or "Deacon Larry"..I'm just Larry. I immediately feel a bit insecure because I do not like telling folks what they should or should not do when it comes to their personal faith issues. I quietly ask the Holy Spirit to quickly help me out. Then I say, "I'll try, John.  But I may not be able to. I will go to Father Anthony and ask him if necessary."

Being part of this ministry can have unexpected rewards. God was about to bless me with a glimpse into the hearts of two Catholics, a man and a woman,  people of faith who married in the faith and lived it and who shared a love that did not die upon the death of one--rather, it simply continued and still existed. John says to me, You know, I am upset about this article. It says we Catholics must bury the ashes of loved ones in sacred ground."

I said, "That isn't anything new. Some folks are scattering ashes over the Gulf of Mexico or off mountaintops or sharing them among family members. Those kinds of things are not approved of."

Look", he says. "I have Mary's ashes here with me. I talk to her everyday. I'm all alone and I feel she never really left and I get such comfort from that. Do I have to get her over to the cemetery?"

I'm looking at him and tears are filling his eyes. He wants to be a GOOD Catholic man and he loves his wife and wants to be loyal to her.  He will give her up if the Church requires it even though the pain he will feel is unimaginable. It did not matter. He would be true to his faith no matter what. I was looking at  a man who would have gladly embraced a martyr's crown if he had been called upon to do so.

 I knew that cremated remains are supposed to be kept intact and placed in a proper vessel. Nervously I began to answer but he continued. "I have a spot down at the VA for both of us. I made arrangements with the funeral home and when I pass they are going to take us together down to the VA and bury us next to each other."

I breathed a sigh of great relief.  Casting doubt to the wind I told him, "John, that is great. She can stay here with you. She is encased in a vessel and is scheduled for burial. You will make the trip to the VA together. Don't worry about a thing."

I will never forget the smile that broke out across his face. I'm not sure if I gave him  proper 'guidance'. No matter, in this case I am sure the Holy Spirit helped me out. I will check with the priest when I see him.

                                             ©Copyright Larry Peterson 2016 All Rights Reserved

     

For Alzheimer’s & Dementia Patients, November is National Family Caregiver Month*

IT MAKES SENSE TO ME

By Larry Peterson

My wife, Marty (Martha) has Alzheimer's Disease and I am her primary caregiver. Since November, 2016, is National Family Caregiver's Month sponsored by the Alzheimer's Association, I thought I would share a slice of an average day she and I experience together. At the same time I can also leave some links to information about dementia (there are many kinds--Alzheimer's is just one) and give a "shout-out" to all the millions of Americans across the country who are caregivers.
Until Marty actually became an unpredictable, uncertain and sometimes obsessive Alzheimer's victim, I did not understand Alzheimer’s Disease. I thought I did but I did not. Meeting folks at the Alzheimer’s Caregiver meetings allowed me to learn that what I write here is not unique to me. It is more or less part of the norm within an Alzheimer home and I am just one of a vast multitude of caregivers living alongside this illness.
Alzheimer Patient--Wikipedia commons
I never imagined the confusion and fear that slowly and relentlessly fills the vanishing mind of the person under attack by the Alzheimer demon. I never knew until I shared her physical world. I wish I did not have to know. What follows is a brief conversation that Marty and I had last evening. She was sitting on the sofa and it was about 6:30. I had just walked in from the other room. The conversation went like this:
"Oh, I'm so glad your back home. Are you going to stay here?"
Not having been anywhere, I was caught a bit off guard. I answered, "Uh--um--Of course I'm staying."
"Do you have any of your things here?"
I reply, "Why don’t you walk back to the bedroom and check the closet."
She sighs and smiles. She is faking because, even though she has lived in the same house for many years, she has no idea where the bedroom is located.  She tries to “play it off’ because she doesn't want me to know that she doesn’t know. But I do know and she knows I do.
So I nonchalantly point and say, "Back that way, where the big bed is."
She shakes her head and says, "Oh, of course, sometimes I don't know where my head is."
I simply say, "That's okay. No problem."
"Well, are you going to sleep here tonight or go to the other place?"
There is no other place and I have no clue where her mind has taken her. I just go along.
And then it is temporarily over and the evening continues. More is on the way such as telling me she really wished she did not have to work tomorrow even though she has not worked for almost ten years. You get the idea.
For the caregiver it is a two-edged sword. You are watching someone you love, mentally evaporate while at the same time trying your best to be as patient and as kind as you can be to that person. As the caregiver it can sometimes be a bit overwhelming. Redundancy can push your patience levels to extreme borders. As Marty's caregiver I can say, unequivocally, that my greatest strength comes via my Catholic faith. I lean on it like a man with two broken legs needing crutches. Without them--well, I would fall hard and often.
There are many types of dementia but Alzheimer' is the primary cause.  Vascular dementia, Parkinson's Disease, Huntington's Disease, Mixed Dementia and others are a few conditions on a long list of illnesses that cause dementia. Alzheimer's is a progressive disease and it continues to worsen as time goes by. There is no remission or leveling off. Eventually the patient will lose the ability to even carry on a simple conversation, or even remember to use the toilet. The end result is always death. It is truly a dreadful illness.
I could go on and on but I have provided several links within this article that will take you to more detailed information about Alzheimer's Disease and dementia. As people live longer the illness is seen more and more. More resources have been allocated for Alzheimer's research. Prayerfully we will find a cure. 
Here is a sidebar to the above: The patron saint of Alzheimer's patients is St. Dymphna. Ironically, St. Dymphna has had a profound involvement in my family's life. My daughter's middle name is Dymphna. (See  Aleteia for more). When I discovered that St. Dymphna, the patron saint of nervous and emotional disorders, was also the patron saint of Alzheimer's and dementia patients, I could only smile. I love St. Dymphna.
Please remember to keep all Alzheimer's and dementia patients and their caregivers in your thoughts and prayers, not just during the month of November, but all year long. 
St. Dymphna, please pray for them and for all of us.

*This article also appeared in Aleteia on Nov 8, 2016

                                 ©Copyright Larry Peterson  2016

     

Alzheimer’s & Marty; Their First Anniversary

IT MAKES SENSE TO ME

By Larry Peterson

It is now almost one year since my wife, Marty, was diagnosed as having Alzheimer's disease. The doctor gave us the news as we sat together. She acted as if she understood. She did not. I have told her that she has Alzheimer's disease and she tells me that she understands. She does not. What she does understand is that something is terribly wrong with her memory. Watching her fight to remember simple everyday things such as whether or not she drinks coffee and she has been drinking it her entire life, is heartbreaking.

No one can tell she is ill, except me, of course, and several close friends that know about her condition.  When I take her with me to church and to the stores etc. and we see people we know, I always hear how "wonderful" she looks. Yeah, well the Titanic looked all bright and shiny as it headed out into the Atlantic that cold, April day in 1912. When the iceberg did its dirty deed the Titanic was doomed.  Nothing could have ever stopped her sinking into the cold Atlantic. 



A year after diagnosis Marty has become my new seven year-old existing in an older body. She is very insecure and becomes frightened if I am not nearby. She still tries to maintain her independence as a self-sufficient person even though she cannot remember where to put the forks or cups. As her caregiver my life has become disconnected and very unpredictable because of her needing so much while trying to not need anything. Alzheimer’s is never just the patient’s illness. On the contrary, it latches on to the love of those close to its victim using that love in a sordid attempt to destroy their spirit. Most times that  results in abject failure because the power of love often proves to be much stronger than the evil disease. Sometimes not.

For me, my work as a writer has become a bit scattered.  It has become a fascinating existence where focus has become an evasive shadow and cohesive sentences are written in pieces and then squirreled together at another time.  However, I am blessed. I have been given the gift of faith which allows me to trust the God above. This gift helps me to  realize that this woman is now a special treasure from Him entrusted to my care. I have told Him, “No problem Lord, I have her back and will do my best until whatever is to be will be.”  (But believe me, I do have my "knee-buckling" moments.)
 Today, more than 5 million Americans are living with Alzheimer's Disease and about 200,000 of those folks are under the age of 65. It is the only disease among the top ten that cannot be prevented, slowed or cured. The disease kills more people every year than breast cancer and prostate cancer combined. It is estimated that by the year 2050, 16 million people will have this disease. Someone in the United States develops Alzheimer's every 67 seconds. They have estimated that by 2050 it will be every 33 seconds. This is an epidemic growing before our eyes. It is also becoming a nightmare for more and more moms, dads, sons, daughters, grandchildren, cousins, aunts, uncles, friends and society as a whole.
Imagine that all around the country there are people like Marty having their brains slowly erased by an invisible demon inside their heads. Swoosh, swoosh, swoosh; back and forth, back and forth, the tiny eraser keeps moving--back and forth, back and forth. Slowly but methodically the demon goes about its work 24/7. After a while, the person under attack does not even remember how to go to the bathroom. And then, after a time, the eraser stops. It stops when the disease it is part of finally erases the person's life.
That is the course of the relentless, unstoppable, illness known as Alzheimer's Disease. It is at work at this very moment in different minds all over the world. Somehow, someway we will have to stop it. We will need God's help because this war cannot be won without Him.
                                       copyright©Larry Peterson 2015
     

Goodbye “Little Bro”–You and Your Watermelon are Forever in Our Hearts

IT MAKES SENSE TO ME

By Larry Peterson

The picture to the right was taken at my daughter's wedding and it was a happy day. Facing the picture, the young fellow on the left is my "baby" brother, Johnny. The one to his left in the back is my brother, Bobby. I am to the far right, my sister, Carolyn, is in front of me and my brother, Danny, is to her left in front of Bobby. The young man with the silly grin on his face is my son, Larry Jr. who was really having a "good" time. The little guy is my grandson, Darren. He is now in college.

I posted this photo because there are very few photos of the five of us together.  There has been a lot of death in our family over the years. Bobby died in 2007 from cardiac failure. He was 53. Carolyn's husband, Bob, died back in 1993. He had a brain-stem tumor. He was almost 53. My wife, Loretta, died (melanoma) in 2003. She was 58. Danny's wife, Annie, died (emphysema) last April. She was 64. Our mom died at 40 from leukemia. Our dad died at 53 from Pancreatitis. We had a stillborn daughter, Theresa. Her life span ended while entering the world.  And then, the other day, our brother Johnny, (I also called him "Little Bro" and he called me, "Big Bro") died. He was 56. Unlike the others, Johnny's death was self-inflicted. This I do not understand. Therefore, I have turned  it over to God....totally.

It  is a beautiful thing when you do have an abiding faith in the God above to help you climb over the rubble of life. And yes, this left a serious pile of rubble for sure. I will not analyze or try to figure out "what happened".  I just ask anyone who might read this to say a prayer for "Little Bro" and for his wife and family. We have the peace of knowing that Johnny is now with his most loving and merciful Father and is in "GOOD HANDS".

Also, maybe say a prayer for me. I am unable to attend Johnny's funeral today and I am quite "in the dumps" about it. I should be with the rest of my family. However, being a caregiver to an Alzheimer patient (my wife) can sometimes leave you unable to act on unexpected life situations. I will go to 8 a.m. Mass in my parish and I will be OK.

Anyway, today we say GOOD-BYE to the "baby" of the family. It is a hard day for all of us but God and His Son and our Brother, Jesus, do have our backs.  WE will feel their comfort and the loving hand of Mother Mary will guide us along.  Love you "Little Bro".
                                                            ~~~~~~~~~~~~~~~~~~~~
PART II

Our dear cousin, Vicki Nelson, had a wonderful memory of Johnny back when he was seven years old. She wrote an essay about it and it came straight from her heart and I am posting it now--in honor of "Little Bro".  Thank you Vicki.

~~~~~~~~~~~~~~~~~~~~~
The Watermelon Story
  by Vicki Nelson
To look at him that summer morning, no one would ever guess he had a care in the world. And in that moment, I suppose he didn't. Still, it must have been confusing for him. Here he was ‐ a seven‐year old kid from the Bronx suddenly transplanted with his eleven year old brother for the summer in his uncle's new house in the New Jersey suburbs. The brothers were recently orphaned after a short span of time where first their mom, then their grandma, and finally their dad died. The two boys had three older siblings, one of whom was a bonafied teenager and the oldest two were barely old enough to be considered real grown‐ups. How it was going to work out, no one really knew. Uncle Larry had four kids of his own, plus a wife and mother‐in‐law to support. He had just bought a larger house to accommodate his growing family and they barely had two nickels to rub together in those days. He was a one man show with his nuts and bolts business that was touch and go lately. Still he did what he could for his sister's kids. He was their beloved Uncle Larry even if he did live in Jersey.
And in Jersey, everyone had lawns. Having a lawn and then complaining about cutting the grass was the main reason people moved across the Hudson River. Uncle Larry had not put in the backyard lawn yet. Hundreds of weeds needed pulling and rocks needed removing. The earth was soft, however, and Aunt Gloria promised to pay each working kid a penny a weed ‐ easy work for a bountiful harvest that awaited. Brother Bobby got the bright idea to remove some of the leaves from each weed thereby maximizing his profit for each weed. Aunt Gloria, originally a city kid from New York herself, quickly wised up to the shenanigans and so we all picked weeds for free from then on. I don't really remember how the next part came about ‐ maybe we just finally had enough land to do it. Or maybe it was just that we were already outside so much anyway, digging in the dirt and pulling weeds. Somebody got the idea to plant our own vegetable garden so we picked a nice flat spot way out back and sowed seeds from little packets. We planted the usual ‐ tomatoes and zucchini and bell pepper plants and ‐ Johnny's special request ‐ watermelons.
New Jersey is the Garden State and our plants just grew like crazy. The watermelon plants grew hundreds of leaves that spread out all over the place. Johnny would jump out of bed first thing every morning and run to the garden patch in hopes of spotting his first watermelon. The tomatoes eventually turned red, the bell peppers and zucchini grew in abundance too.  Meanwhile, Aunt Gloria was beginning to suspect that the watermelons were not going to produce much more than green leaves. So she planned a little surprise for Johnny.
The next morning, like clockwork, Johnny ran out the back door to check on his watermelon patch. In a few minutes we could all hear his ‘hootin' and ‘hollerin.' "I got one! I got one! I got my very own watermelon! Everybody ‐ come look!!!" 

We could see him from the window. He jumped up and down, hopping from one foot to the other with that blond curly hair bouncing and his blue eyes shining.

We all went running out the back door to meet him as he continued jumping with that toothless seven year old grin, as he proudly displayed the roundest most beautiful little Sugar Baby watermelon any of us had ever seen in our entire lives. Of course we older kids were in on it but congratulated Johnny heartily on his superior gardening skills and his prize watermelon. He just beamed from ear to ear. Aunt Gloria put it in the fridge so it would be a nice cold dessert on that hot, summer night.
I will never forget his little face or for a moment, the sheer happiness and delight that one watermelon could bring to one small boy. He never forgot it, either. Many years later, when we reconnected over the telephone after going our separate ways for a long time the way adults just do, we spoke with delight of the watermelon story again.
And just for that moment, remembering, we were those two kids again. Rest in Peace, Johnny. You and your watermelon are forever in my heart.
Love from your cousin,
  Vicki
     

Alzheimer’s Disease–The Growing, Unstoppable Epidemic

IT MAKES SENSE TO ME

By Larry Peterson

My wife, Marty, began undergoing chemo treatments for Lymphoma during the spring of 2011. In the summer of 2013 cognitive disruption began to rear its ugly head. When I asked her oncologist could it be  "chemo brain",  he more or less gave me an I'm not sure, maybe shrug followed by a "I don't think so.",  answer.

During the late summer of 2014 the "cognitive disruption" I had noticed  was officially diagnosed as Alzheimer's Disease.  So much for my "chemo brain" theory. The mental "fog"  was never going to go away.  On the contrary, I quickly found out that her newly discovered illness would hang on to her and not leave until it succeeded in taking her life. Alzheimer's Disease is the only cause of death that cannot be prevented, cured, or even slowed down.

Marty did not understand what was happening to her and I was having no luck trying to explain it. All she knew was that the rehab center she was in was not her home and that I had put her there and did not stay with her anymore. She had no idea where I (we) lived and was as frightened as a child whose parents at dropped her off at a strange place and left her there with strangers.  The whole situation actually sickened me. When I would leave after four or five hours of visiting the pathetically sad and forlorn look that appeared on her face was almost too much to bear.

It is now almost eight months since the official diagnosis of Alzheimer's. She has been home since the end of last October. I have told her that she has Alzheimer's Disease and she tells me that she understands. She does not understand but, since she forgets the conversation within minutes, it does not matter anyway.

Marty has become my new seven year-old existing in an old body. No one can tell she is ill, except me, of course, and several close friends that know about her condition.  When I take her with me to church and to the stores etc., I always hear how "wonderful" she looks. Yeah, well the Titanic looked all bright and shiny as it headed out into the Atlantic that cold, April day in 1912. (Oops, sorry, I try to avoid being "down" about this but sometimes it just bites me, especially when I write about it.) Moving forward---here is a link to Alzheimer's Disease .

Today, more than 5 million Americans are living with Alzheimer's disease and about 200,000 of those folks are under the age of 65. The disease kills more people every year than breast cancer and prostate cancer combined. It is estimated that by the year 2050, 16 million people will have this disease. Someone in the United States develops Alzheimer's every 67 seconds. They have estimated that by 2050 it will be every 33 seconds. This is an epidemic growing before our eyes. It is also becoming a nightmare for more and more moms, dads, sons, daughters, grandchildren, cousins, aunts, uncles, friends and society as a whole.

Imagine  that all around the country people like Marty Peterson, are having their brains slowly erased by an invisible demon inside their heads. Swoosh, swoosh, swoosh; back and forth, back and forth, the tiny eraser keeps moving--back and forth, back and forth. Slowly but methodically the demon goes about its work 24/7. After awhile the person under attack does not even remember how to go to the bathroom. And then, after a time,  the eraser stops. It stops when  the disease it is part of finally erases the person's life.

That is the course of the relentless, unstoppable, illness known as Alzheimer's Disease. It is at work at this very moment. Somehow, someway we will have to stop it. We will need God's help because this war cannot be won without Him.

For more information click on this link  Alzheimer's Info

                                       copyright©Larry Peterson 2015

     

Celebrating Our First Alzheimer’s Christmas Together; Laughter Allowed

IT  MAKES SENSE TO ME

by Larry Peterson

I guess the first time I realized that something was really wrong was about a year and a half ago. I have a bedroom I turned into an office and I was sitting at the keyboard clicking away. I sensed someone behind me and turned to see my wife, Marty, standing there. She had a strange look on her face. I remember the moment because fear was etched across her face. "Hey," I said. "What's the matter?"

Then I noticed she was trembling. I stood up and went over to her and put my hands on her shoulders.  She stammered and sort of whispered, "I don't know. I think I need your help."

"Okay, what is it?"

Marty turned and headed down the hall past the living room and into the kitchen. I followed and noticed that she had her "cookie" stuff out. As she had done so many times in the past,  she was about to  make the best, old fashioned, home-made, chocolate-chip cookies I have ever had. Like a child, I said, "Oh, awesome, you're making cookies. So, how can I help?"

"She sighed and shook her head, She began to cry and, looking at me, said, " What is all this? I don't know what it is for?"

The woman who had made thousands upon thousands of these cookies over the years had no memory of previously doing what she had done so many times before. She had placed the needed supplies on the counter and went to use the bathroom. When she returned a few minutes later what had been virtually second nature to her had been erased from her mind. It was all gone. She had come back to me for help because she KNEW something was terribly wrong inside her head and this time the sudden, specific memory loss was scaring the hell out of her. She sobbed, "What is happening to me?"

She had been sick with Lymphoma since 2011. She had endured numerous cycles of chemotherapy to fight the disease. Anesthesia required because of surgery in August (needed to repair a broken ankle) and an attack of A-Fib (Atrial Fibrillation) in September exacerbated the cognitive dysfunction. She was officially diagnosed as having Alzheimer's Disease *on September 28. And now we are approaching our first Christmas together with  Alzheimer's as our unwanted Christmas guest. Guess what---it is OK. He will not ruin our Christmas. He is welcome to join us. That is because we have started to laugh again, more and more. And we are laughing at the insanity of living in Alzheimerville. And trust me, it can get quite wacky.

I have always had a bit of a "flip attitude". It probably has helped me get through some tough times. So when Marty goes to the cardiologist and goes to sign in and cannot remember her name she looks at me for help. I smile and say, "Who cares Lucy, they know who you are. Just put down Lucille Ball."  She starts to laugh and I laugh and I write her name down for her. Not an issue.

The past ten years of her life seem to have literally vanished from her brain. She does not remember us getting married. (We were both widowed and married eight years ago. She has no clue.) So she asks me if we are really married. I show her our marriage license and pictures from our wedding. She is shocked. "I can't believe it, " she says. We really ARE married." Now, every night I say to her, "Okay, we can sleep together tonight. Its not a sin."  She always laughs at that.

There are so many little, extraordinary things that happen every day. Being asked the same question over and over can become unnerving. I have turned it around where I start by giving her the answer.  For example, she asks me ten times a day, "How do you feel today?"  After  a few times I answer, "Today I feel like seeing you and that makes my day shiny."  It is a ridiculous answer but she likes it  and I like it too.

I cannot count the things that have been moved to the strangest places. I have found the Parmesan cheese in the towel closet,  unwashed clothes in the dryer. She makes coffee and tells me it is the worst coffee she ever had and I should let her make it. She has hair curlers that keep vanishing. I have found them in the garage, in the refrigerator and under the kitchen sink. We had been searching for them and when I found them in the refrigerator I said loudly, "Here they are."

She was standing nearby and turned to see me lifting the bag from next to the milk. I quickly asked, "Can  I use these for curly fries?"  I began to laugh and she shook her head and smiled. I gave her a hug opened the freezer door and tossed the curlers in. "They are not frozen enough," I said.  She began to laugh and so did I and, although shrouded in a dark moment, we laughed our way into the brightness of a new moment.

 Marty has been captured and imprisoned by the most insidious of diseases. It is like a computer virus slowly deleting what is in memory. So far the last ten years are gone. That cursor is still clicking, delete, delete, delete.. The day will come when she will not even know who I am. I will do my best to keep her laughing and smiling as long as I can and as long as she understands why we laugh.

As for me, I must admit, this entire situation has been wearing me down. There is a lot to do as a caregiver. I traveled a similar road with my first wife, Loretta, who died 12 years ago from cancer. She was sick a longtime but she never lost brain function. That is a very difficult thing to deal with 24/7. But you do what you have to do.  If a man and a woman love each other that is the way it should be, HAPPY to be there for each other, "no matter what". We both took vows before God and man to that effect and, for me, they remain in full force until death.

Our biggest friend in all of this is our Catholic faith. It is there for us through the Holy Mass, through Our Lord Jesus, through Our Blessed Mother and through the examples and intercessions of so many great saints and reinforced every day by prayers from our family and friends.  In fact, I did attend Mass this morning and I had a bit of an 'epiphany'. I was feeling a bit sorry for myself when I realized I had been given a Christmas gift from God Himself. (If you think I am crazy, I don't care).

This gift is my ill wife afflicted with a disease that is unstoppable and incurable. She is foremost, God's child, and now she needs someone to take care of her just as she did years ago when she was a child.  We met at church and were married in church. An unlikely couple, I know that God brought us together. Maybe this is why. Because during the Christmas season of 2014 I realized that besides a wife, HE has given me one of HIS children to care for. I will do my best to make Him proud. I will also do my best to keep us laughing. It is all GOOD.

MERRY CHRISTMAS
________________________________________________________________________

* In case you do not know this, Alzheimer's Disease and Dementia are NOT the same thing. Alzheimer's is the number one cause of Dementia but there are over 150 different causes.                                                                       copyright Larry Peterson 2014

     

A Piano Concert Given on the Road to Nothingness

IT MAKES SENSE TO ME

by Larry Peterson

Until about four years ago, Marty, was never sick a day in her life. That is when the Lymphoma was discovered and the chemo began. The cancer would come and go and so would the PeT Scans and continued chemo treatments. Truthfully, it was never much more than an inconvenience. She never got sick, lost weight or had any of those stereotypical cancer fears materialize.
What did unexpectedly occur were the ever more frequent cognitive disruptions. Memory lapses, asking the same question over and over and things like that. I spoke to her oncologist and he silently said with raised eyebrows, tightened lips  and a shrug, ‘there might be a problem’.
Anesthesia administered during surgery for a severely broken ankle on August 1, dragged her deeply into the nether world which, up until then, had only been toying with her.  Now it grabbed her and yanked her in. On September 24 a heart attack (A-Fib) resolved any uncertainty. Her “Fog” or CRCD (Cancer Related Cognitive Dysfunction) was diagnosed as Alzheimer’s Disease. Quicksand could not have been more efficient.  Onward and downward.
The hospital and rehab stay after the ankle surgery had lasted 20 days and the days spent in the hospital and rehab after the A-Fib attack lasted 33 days. She thought I had moved her into a new apartment and was wondering why I would not stay there at night. Like a good “soldier” she would wait patiently, hour after hour after hour, until I returned the next day. Then, like a three year old who had been found by her daddy, her face would light up and she would say, “Oh thank God, you found me.” She knew she was “saved” and would hug me tight and not let go.
I freely admit that every damn day on the way home I cried thinking of how sad this was. My intelligent, independent, wife had become a lost child, the victim of an insidious demon inside her head who was erasing her brain. I had turned into a blubbering idiot. This Alzheimer’s thing was surely a despicable foe.
Marty returned home on October 26 with a bag full of new medications and a mind that was telling her that I had moved her into a ‘new’ house. She asked me if we “were married’, if we would sleep together in the same bed and if, in fact, her piano was new. After two weeks she had recovered some of (not all) her sense of belonging  in “her home”. She was still not sure where things should go and kept moving items from here to there without me knowing. I have (so far) had to search hi and low for the shampoo, the toothpaste, parmigianna cheese,  combs and hairbrush etc.  So be it—together we plod forward with her doing whatever she will do and me learning to (at all times) expect the unexpected. This is a minute to minute journey, unplanned, without a destination and very spontaneous.  But—there can be beautiful moments and yesterday one unexpectedly came along.
Marty has played piano since she was a child and is quite an accomplished pianist. A concern of mine while she was in rehab was that she might not remember how to play. I have been told she will actually forget how to. Yesterday, those concerns were put on hold.
I was in my cluttered, paper strewn office staring at the computer monitor when piano music began filling the house. I smiled to myself as I began to listen and then I realized this was something different. This was not the usual Marty, this was a transcendent  Marty. I could not believe what I was hearing. She was playing the most beautiful music I had ever heard  her play. “Stella by Starlight” filled the rooms followed by “Autumn Leaves” and then, my favorite, Chopin’s Major in E flat. I watched from the hallway and saw that she was lost within the music that she was bringing forth on that old piano.
Watching her play was like observing one of God’s magnificent flowers fully bloom. Realizing that these were now fleeting  moments soon to be no more I had the good sense to record the entire hour  that she played.  I figured that when she does forget how to play and does not recognize the piano or maybe even me, that music will still be here. That is when I will play it for her.  Maybe, just maybe, from whatever world she is in, she will take pause and smile. Maybe she will remember some of her music. Maybe, just maybe…