Excerpt for Mom and Pop, A sons story of the joys and pitfalls of being a careger by , available in its entirety at Smashwords

Dedications


To my beautiful wife Angie. I pray that one day she will find forgiveness in her heart, as I forgot how to have fun; not to forget to add my absenteeism and neglecting her of needed time for us. I have always and am always happiest with her by my side as we do things with, and for our children. My greatest sin in life is, I put my family on cruise control, set my wife aside and worked too much. Angie, you will always be the most beautiful woman in every room to me.

To Belle and Reagan, my youngest daughter and son and Tony, my oldest boy, all of whom I love with all my heart. Belle, my mom’s best friend and the entertainment she gave Pop in his last days, and Reagan, my youngest son, who I thank for doing so much work for his grandma and keeping her entertained. That kid can do some serious laundry and even caught mom cheating at UNO. Tony, my oldest, who could not be there for mom, but did make several journey’s to see Pop before and after he passed, as he gave me needed help around and about their property when he visited. I love you kid. I thanked God you are a Clydesdale and not a Shetland.


To the families of caregivers that have to put up with so much loneliness and absenteeism, physical and mental when your loved one is away, physically and mentally doing the hard things. If you feel ignored, it is not done on purpose.


The friends and caregivers I befriended at marrowforums.org and the loved ones they are losing and those they have lost. Thank you for your support.


To my local and distant support system.

My work family (and my work wives and brothers) at the Murphy Medical OR and Surgical Services , so many other departments in the hospital that pass out needed hugs, and my childhood and college friends that kept me afloat... Like Wahoo (Julie) McDaniel, Bennie Richards-Baxter, Del and Mary Beal and my many friends in town that would require a separate book of its own to mention; as well as those families strong in God at the Murphy Middle and High School Shooting Team that have fed me and passed out hugs to boot. God Bless you all for being there for me when the bottom dropped out of my life.


Finally, and who could ever forget not mentioning these heroes of the sick… The OR Staff, the wonderful ladies at Katie’s World, and the Same Day Surgery at Murphy Medical. I also want to thank the Good Shephard Home and Health for the Hospice care and support they provided my parents in their last years on this Earth.


God bless you all, and a Huge Thank you to those I missed. There are so many people behind the scenes willing to help care, and willing to help you back to the surface if you hit bottom. You just need to remember to ask, or ask loudly if you do ask and they do not hear you.


Prelude



I have been dabbling with this book for about five years now; however, things like retooling for a new career, kids growing and their activities, sick family, the announcement of a separation after mom passed, that last one for me, my fellow employees and our friends, came totally out of the blue… so you all know that old cliché’ “life gets in the way.” Yes it did, and also realized I was not paying attention to my surroundings. Tunnel vision will get you, and possibly destroy you.


This book started out as my father’s journey from life to the afterlife, and then as mom got sick later on while I was dabbling, I got busy. I did not forget about the book, nor will I ever forget my father or mother. I don’t think anyone that ever spent any amount of time with my Pop could ever forget him, as those that met mom; well, she was usually where my father was, picking up after him and working beside him. They mostly worked, sailed, worked to pay for sailing, moved to the mountains and rode horses, worked to pay for the horses, worked to play… well, to put it into prospective, they pretty much never retired, worked a lot, played when they could, but were mostly seen together working or playing together. I am guilty of that. I find it hard to do things with others unless I am with my wife. Call it a connection, call it security, but I call it love and sharing. No, I am not that guy, the weird one that has to know her whereabouts all the time. My wife could always go out, travel and be away to see family or friends without me, as well as play with others whenever she felt. She is very independent, and only a fool would take that away from a woman; furthermore, she has the capacity to pull that off, and I never would, or ever had in the past had said she could not do whatever it was she wanted. I have actually, always encouraged it; the spending of time with her friends, family and doing what she wanted, as long as it was within our means. Pop, well, he always liked mom at his side. She never had a separate life from him, never traveled without him and didn’t go out with friends without him. That is the big difference between Pop and me. The picture on the cover says it all. He loved mom with his everything and latched onto her like a Blue Crab and clutching a mullet head. Sadly, at times, he could not show it, especially as he got sicker, but he did love her and she knew that, as did we all.


As many of you know, time is tight with two young children, well, not that young… a teen, and a preteen; as well as work, home repairs, making dinners, sports, coaching, me on call fifteen days a month at the OR, my wife having to work overtime, as she and me took care of my parents place as well as ours for eight of the last ten years, and then piled on all of that, add me becoming a fulltime caregiver to my mother at nights and on my days off… sometimes life takes charge and you forget who you were to the ones that love you and needed you the most.


Well, like I said, I was dabbling. I am not even sure if anyone would be interested in a book that was about my father’s journey into the next life, or even how he died, but then I realized, “Hey! I was looking for answers and a relief valve; maybe others are too.” Sure we have family we can decompress on, but as family, we mostly see the same thing, and sometimes, we decided not to decompress the same thing to each other, or you don’t decompress enough and keep the stress inside to protect your loved ones and eventually strain a relationship to the point it ceases to exist; furthermore, I will remind you throughout this book to make sure all loved ones are on the same page, if you are thinking of becoming the caregiver to a loved one or a family member, or even someone out of your immediate family, listen up. If you think you are doing the right thing, and your family has other ideas, make sure they are clear and honest with you. Why? You might discover when the caregiving is over, you will find yourself outside looking in, or worse. All on board, all in, all understanding or all nothing. What is “all nothing?” Do not take it on unless your relationship and family can take the extra strain.


So, getting back to the prelude, I originally reached out and shared my father’s story with people on the internet from all over the world. One seems to forget at times, especially me, the internet is enormous and not just in our own backyard or town. As you will read, most of the book is about my father; however, while being a primary caregiver to my mother years later, many other things that eventually happened in my life had actually started snowballing with the diagnosis of my father ten years earlier.


I also wish to show you, the reader, the love, compassion, stress and an unknown factor that can come with caregiving if you are not careful. This book will also show you the state of mind I was in, especially when my wife and I separated. You will see raw emotion and pain. I thought about changing it, and editing more out, but to get the real understanding of what can happen when you do not communicate with those you care about the most in life, you can, for lack of a better term, screw the pooch. No, I’m not sorry for that phrase, as I am prior military like my beautiful bride, so sometimes blunt is what it is, accurate and to the point. I realized I was not the mountain to my children they believed I was, I was weak, sad, depressed and alone.


With my wife and I being newly separated, I being, essentially alone and not sleeping but a couple of hours a night, I found the time to continue this endeavor, as my children were uncomfortable with a crying, blubbering idiot that couldn’t seem to get over their mother wanting to be away from me, as I explained to them what I did was what a responsible adult does. Or was it?


Having just lost my mother to colon cancer, and an eighteen year relationship with my best friend and wife ten days after, I had many things I could reflect upon as the book took a new direction. As many emotions ran through me like a raging river with each parent’s death, and my marriage careening into a guardrail and over the cliff so soon after my mothers passing, I had an opportunity to expand on this endeavor and warn future caregiver’s of the joys, and pitfalls of taking on such a responsibility. I had essentially experienced, as my therapist stated, the death of two people I loved the most in this world a week apart, my mother and my wife, and had the pleasure to deal with my demons alone when the dust settled.


No! Not all due to my parents being diagnosed and passing over a ten year span, or my even mothers passing taking place in our home a little less than eight years after my father passed. Mom being sick, living with us and passing in our home was just one more thing added to the strain of family, finances, work, a failed economy, bankruptcy, starting over with new jobs and careers, everyday life and being a caregiver; as being an absent husband and a father didn’t help either. Add to that a dash of promises made to my parents, my wife and I attempting to honor them. It just added to the cornucopia of stress already in our lives. I was essentially driving on the interstate at breakneck speeds as I sent my family down the backroads to avoid the impending accident; so as I could steer them and help them avoid the realities of life, as that in itself ended up becoming a huge fail on my part. Big mistake? You betchya.


Earlier I said absent, but I was physically here. I was doing life. Like I said, being a husband, father, land maintenance, house remodeling and repairs, caregiver, coach, blah, blah, blah. Sometimes marriage gets put on cruise control so you can try to be the person you think you family wants as you forget what it is that they really need. You.


Communication with family, loved ones and significant others is very important. I can never overstress that. It should really be at the top of the list. You all should be thinking as you read this, “Note to self. Communicate… NOW!” If you decided after reading this book that being a primary caregiver is what you need to do for your grandparent, parent, spouse, or child, please remember this one important thing; Do Not Do It Alone! Be clear in your communication to others around you and ask for help. You will find that even family has a life too, as you may be carrying more of a burden than you reasonably can. If need be, seek help from a therapist, community center or a church you may attend if you find yourself alone in the end; but please, do not go it alone if you don’t have to, or you may find yourself taking medications meant to help you cope with the sadness that will actually mess with your head and drive family further away instead. Or you may even end up having problems at work that could get you unemployed, or worse.


You may find that simple things like trying to get your children to be around you become difficult, and the meds you are put on to cope with your new reality are not even a guarantee that you will dry up and be less of a blubbering idiot when you are around them. Yes, I am guilty of being a sad husband and father as I was projecting that onto my children, my wife and my coworkers after the separation. I was a total wreck after my mother’s death with the news from my wife, as were the children, and none of us understood how to communicate that pain to each other. My children and I were missing our family unit and our commitment to each other after mom had passed, and we desperately needed that, as I and my wife realized over time, so did we. As far as work went? Wow! Had it not been for their support and picking up my load when I collapsed, I would have been unemployed in a second. Their understanding, support and compassion was more than anyone could ask for from a work family. In all actuality, I should have been dismissed, and I would not have blamed them if they did.


I will continue to repeat the following message throughout the book so you understand that from all angles, being a caregiver, along with life, can be overwhelming for the strongest of us; furthermore, don’t forget those loved ones not acting directly as a caregiver but watching from the sidelines. They could develop a feeling of being abandoned which will affect them far worse than you could ever imagine in your absence.


Now, back to the story. Pop? I didn’t call him dad very often, and I really didn’t even call him father very often. Pop was the name I had for him as I grew older. Hey Pop, what’s up Pop… and it stuck so well that my youngest daughter, Belle, called him Pop when she started to talk. Pop was a very public man. He had his hands in everything around the community I grew up in. He was a volunteer firefighter, and then eventually chief of the fire department, ambulance driver, being one of the members on the board of directors at the local hospital in the Upper Florida Keys and a small business owner. Those are just a few of the hats that he wore when I was growing up. Even when he retired to the mountains, he found a way to help an injured man keep his business operating by sweeping chimneys and installing fireplaces and stoves for him until the gentleman healed. Pop then continued to work for the gentleman clear up until he got diagnosed with leukemia.


Yeah, now there was a sight. Pop in his short, shorts balancing on a chimney chase or on a ladder. “Don’t look up” we’d say, as Pop climbed a ladder and would fly commando all too often. Even before he and mom moved to North Carolina from the Florida Keys, I am sure he shocked a few Marine creatures below and Marine Patrol officers on the surface as they boated past. Yes, there are stories… true stories even from the officers. Pop was definitely one of a kind.

Yes, pop was a very public person. Mom, not so much, as you will not see too much of mom’s treatments or much of her cancer story here, even though I was her primary caregiver at night and weekends until the last weeks when I finally begged for help so I could spend time with my wife and best friend, which for my relationship, ended up being too late, as I was not paying attention to the signs of the impending doom of those helping being as time constrained as I was.


Later on I found out that my time spent with my mom on the many nights and weekends with little help from outside our unit was the straw that broke the camel’s back. The damage was done. Just to reiterate, my mom’s death was not the cause of my hardship, but just one more thing added to everything else I did wrong in life. I didn’t press for help and I didn’t push until it was too late. It is on me. I kept saying I was fine, and it will all be good. It was not.


My mom? She was a very private woman, and now, as I write this, she has been gone for just under five months. I can tell you that her treatment was only management of her colon cancer until she sold her home, as she also wanted to see my niece give birth to her greatgrandchild and spend time with my children, Belle and Reagan. What happened with mom? She had received an ileostomy due to a mass in her colon, and the chemo was to shrink the mass and help slow the spread of the cancer. That was how she was able to manage a little more time to be with her family.


Goals, Pop set them, as you will read, and so had mom. Mom’s goals were simple; all she was looking for was just a tad more time with the children, one more card game with Reagan, one more talk with my daughter Belle, her granddaughter and best friend. Mom wasn’t worried about herself, or even worried about leaving Angie and me, the grandchildren or my sisters. We were, with exception to my failing marriage, good. I, like many men believing they were doing the right things for what ended up being the wrong reasons, was oblivious to my surroundings and my eventual fate. My children and I didn’t ask for it, nor the delivery method it came in, but is it what it is. The joke with my wife and me for years was, if I were a super hero, I would be Oblivious Man. My life consisted of do the project, do the job, and do what I believed to be the right thing. Get it done no matter what. Drag everyone kicking and screaming to the finish line if you have to. My Pop? Oh yes, as these are the traits that were instilled in his children by him. It’s in the DNA. No play until the work is done and there is money to afford it. Swing that hammer, build the better wheel and be a responsible citizen. My Mom? Hide the stress, be strong, make sure the plan works and carry the burden so Pop didn’t worry about the finances when he wanted to do things. Yep, I was their son and held all the traits. Wow, was I ever screwed from the get go.



Yes, we all have our lives to live as some of us find ways to cope with the stress that comes with being a responsible adult, while some lucky ones skirt the responsibilities of being an adult all together and amaze us as they carry on with no worries in the world.


What were my goals? Let’s just say after the bomb was dropped, I prayed every night that I could fix a marriage that I screwed up due to a communication, over working and an absenteeism factor. I was not seeing me being very successful, nor did I possess the ability to cope without my wife and children at my side. Usually I am the guy that normally bounces back from setbacks in life rather quickly; however, I found this setback extremely hard to bounce back from, as I truly love my wife and children and needed to have my family back as a unit, because they are my entire life, my support and my shoring.


After a death, the caregiver needs to decompress with their loved ones; I didn’t get that option and was left alone, and the result was extremely painful, physically debilitating and personally embarrassing, as you will read more on that further on in the book.


So, what prompted me to write this book in the first place? The sheer fact that I could not find firsthand accounts of caregivers, patients and their personal journeys; furthermore, I had something to add to the story with my emotional distress. I searched and searched on the web, went to a major bookstore, and decided that I would continue, with the blessings of Pop, to write his story on marrowforums.org, or as I had said, “The journey he took from life, to life,” for those looking to find out, or answer the questions to, “My (fill in the blank) is sick, and may die, what is next?” Years later I found out from one of the thirty five thousand readers that visited the thread that she had typed in MDS to AML in the search engine and found Pop’s story. Who knew? Obviously, not Captain Oblivious.

Even though every disease is different, the endgame with mom and Pops final days were pretty much about the same from their last, lucid days to their crossing over.

I do hope that Pops story and the bits of moms journey helps you, the reader, whether you are a patient or a caregiver, to find the strength and the comfort they exhibited throughout their journey to death.


The basic rules of life my parents instilled in me is the fact that death is a part of life; life is, ultimately, a part of death. If I had learned one thing helping Pop and my mother in their crossing to their next life, it was how one can leave this life with courage and the knowledge of being loved. Those that need caregivers that are alone, they can utilize nursing homes and hospice when ready. Hospice was so compassionate when we called them for mom and Pop. Do not forget they are there. They do care, and for some, those individual’s and couples that are alone, using Hospice is only contact with a carer they will have until they die.


Love, Compassion and Caring. That was my parent’s legacy to their family, their gift to their children and all that we mortals should ever ask for. That is the gift my parents gave me. I was raised with the belief that things or the money needed to buy them wasn’t what mattered in life. As for me, just to be a good husband, a good father, to be able to be there for my parents and just be a good son, a son that caused them many a grey hair, and to be Loved by my parents and the knowledge my wife and kids loved me and would be there to help guide me back into the life we shared when all the dying was finished; that alone, the family unit, that dynamic was more than enough for me and all I ever craved and prayed for. My family. It doesn’t get any simpler than that.


Unlike that last paragraph, I am a simple man that loves his family with his whole being. As you will read in this book, sometimes, that just isn’t enough, and having such a strong love pulled away at a crucial time, along with the death of a mother, well let’s just say it is nothing less than catastrophic. The term “train wreck” does not even come close to describe what I became. According to the doctor that diagnosed me for having Broken Heart Syndrome, I had actually experienced the death of my mother and my wife less than two weeks apart. I didn’t see my wife’s news as a death, but when the heart and mind matter, it guess it actually was when you get down to it.


To be clear, being a caregiver is time consuming. Even being a part time caregiver is going to take time from family. It will rob you of your life with others. It will make you tired and possibly undesirable to your significant others. You will find that you will lose stamina, possibly put on weight, not be fun to be around; furthermore, you may even become snippy and moody. It isn’t only the death phase over the last few months, but the years leading up to it, including home and land maintenance that is not your own.


Remember this, anyone can throw a loved one into a nursing home or hospice care and wait for that call that their loved one had passed when they actually have the room for caring for them in their own home; however, true love, showing true love through being a caregiver was the best gift I could ever give my parents, and the best example to my children of how a child helps their parents; furthermore, it showed my wife that if the need had ever arisen, this was a gift that I could share with her, her parents and my children, along with being the compassionate husband she needed and deserved. I only wanted to be the model husband, father and son to my family that lives in a world littered with its share of those in it for self-gain, or the wife beaters, child abusers, voluntary unemployed, alcoholic’s, under achiever’s, lurker’s, felons and predator’s. I wanted and needed to be different. I needed to be the man my parents raised me to be and my wife needed me to be. In the end I failed miserably at some of those tasks and succeeded at others; yet, the final result was me being an absolute failure to my wife and children as I became the legacy my parents left behind.


Isn’t that what a husband, father or a mother are supposed to do for their children? Live by example? Show your children and your spouse how to love unconditionally and care unconditionally? Here is where I will step out on a limb. If you are a spouse of a caregiver, there needs to be compassion and the knowledge that you need to be there when the hard times are over and help the caregiver recover the joy and happiness they may have lost during the ordeal? What could they have lost you ask? “All work, stress and no play makes Scott a fat, dull and snippy boy.” My advice to the potential caregiver is, “You have better make sure all involved in your personal life are in it to finish it or you may find yourself alone.” Here is where I go out on a limb again. Don’t be an idiot. Demand help! If help will never be there as much as you and your family need, maybe a nursing home will be a better thing to consider. The one you care for will see it, and probably recommend it if they love you that much. My parents both wished to die around those they loved. Selfish? No. They put a lot of years into their son. They had it coming to them.


There it is again. These are questions you will need to ask yourself before setting out on, what can end up being the proudest moment of your life, or a difficult ending beyond the death of the loved one you were caring for. There are some things that you may not be prepared to see happen after a loss of a parent or loved one. I hope none of you reading this ever have to live through the extreme pain I have had to endure because of a lack of clear communication by all parties and my blatant stupidity.


By no means is this book written to scare you out of a commitment to become a caregiver. This book was originally written to show you Pops journey; and now, it expanded into a book on what could happen if you assume you had clear communication with your loved ones.


Now hear this. It is an enormous blessing to be a caregiver, but it can also be a curse. It is up to you and those around you that you trust to be there and help you back after the caregiving ends. I pray no one has to go through what I went through while I did rewrites on this book; furthermore, I pray you never experience what I had put my wife, children, coworkers and friends through as I hit rock bottom, twice. My coworkers, they were all saints in a dark world that I created. I don’t even want to imagine what I would have become, or done without them all looking after me during the days when my wife, my soulmate and best friend was no longer there. Nights, well, they all had their own families to take care of. That was when I was alone and the demons came to visit and wanted me to atone for all my sins. Yeah, right out of a Stephen King Novel.


My coworker Susan, and my best friend Del both told me that I am guilty of holding myself to that higher set of standards, thus creating my own problems in the process; however, I was raised to push myself and to live by a code, a set of standards that included caring for others and not becoming a burden. Give me a time limit, and I will do what I can to beat it. Create a project, and I will do it the best I can with all the research needed to complete the task to the best of my abilities. Isn’t that what we all should strive for? As far as my friend Del and his comment? My response is, “Now there is the pot calling the kettle black.” Back at you Del.


So, as not to be too much like Pop in setting the stage… on with the story. Yeah, he was a good story teller when we kids wanted to listen. He always had a point and a moral for us to ponder. I only ask that you, the reader please pay attention. The relationship you may save with a loved one is as priceless as the days you spend being a caregiver and guiding someone to the other side. The blessing is being there for the dying and experiencing that with them. All the good and the bad, and I will tell you again and again, blow off the bad. They are dying, not you.


May God bless you and may he give you and your family the strength you need if you decide to take on such an endeavor. To this day I cannot believe how well I functioned off the little sleep I was getting. Only through the strength my God above and my family had given me, as well as the many that care for me at work and in in my life through the aftermath, could I have survived what I had gone through while helping my parents pass on to their next life. My other regret? Some of the people I trusted along the way were not in it for my family, but self-gain. Beware of the lurker’s, beguiler’s and those you allow into your home posing as friends.











One


We all have had times in our lives when we realize that we have changed, as a person… for better or worse, and many of us remember those days as we mark the events with a song, weather anomalies a scent or some such thing that will trigger the memory in the future. Things like special holidays, first dates, the first real kiss, the day you got engaged, married, the pain of separation or divorce and even the birth of a child; many people, like myself, tend to match these events with, for example, a song or a tragedy. Years later when the song is heard, the memory hits us like an approaching storm. The memory is then as clear and as strong like the rain hitting your face or the smell of fresh bread baking… or the taste of your mom’s homemade cookies. Me, for the most part, it is usually a song.

The day I found out my father was dying was one of those days. It was in September of 2007. I was sitting in my parent’s kitchen. While we were waiting for the oncologist to call with Pop’s results, he and mom were talking about the day’s events as I was sitting on a kitchen barstool busying myself with things on mom’s breakfast nook. There was always a pocket knife, pens, pencils or a slew of vitamin bottles to fidget with or build pyramids with. Hearing their voices drone in the background I began to ponder the reality of waiting to hear if my father was going to be diagnosed with an illness that he could manage and eventually cure, or was I waiting to hear his death sentence. I had drifted off and started thinking about the first memory I had of my father. A tragedy.


Hi Dad”, I had said. As the story goes I was a bit more than three and a half years old. Some of what I remember is bits and pieces as Pop’s stories over the years had filled in the rest of the gaps. It was a cool, spring afternoon in Mountain Lakes, New Jersey. The year was 1967. I had run down the neighbor’s driveway and ran into the street without looking and had plowed right into a moving car. Many say that you cannot have memories from that young of an age; however, I believe that if there is major trauma, it can make a pretty large brain wrinkle. I remember seeing a flash of light and being bounced pretty hard. I also remember my legs were weak, and I could not walk. The lady driving the car had taken me back to the house thinking I was the neighbor’s child. I also remember crying and my friend’s mom picking me up and covering my face.


My heart sunk when I saw you. I knew you were dead. “ Pop always told that story with the passion of a father that thought he might had lost his only son. Funny how my first memory of my father was on a day he thought I had been killed, and I was reliving that day in my mind on the day I was going to find out his fate. “I saw our neighbor carry you into the shop and your body was limp in her arms. She had your face covered with a towel, and the only reason I knew it was yellow was because of one corner not being drenched in blood. You were so still.”


The telephone ringing brought me back to the present and it was who we had been waiting for, the doctor. Pop put the doctor on the speaker phone so we all could be included in the conversation. “Bob” He said, “I got the last stain test back from the bone marrow tests.” The last of the tests had taken ten days to show a result because of the rarity of the disease. “Bob, I’m sorry to tell you that you have been diagnosed with Hypo cellular Bone Marrow Leukemia.” I had asked the Doctor what we could do to fix this and I was told there was nothing they could do. I could tell by the doctor’s voice that he had a real problem notifying a patient that they were going to die. This guy, as I would learn overtime, was all heart. I had wanted to ask more questions, but


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