The book is finished. It is odd to be able to find it on Amazon. http://www.amazon.com/gp/product/1517524903/sr=1-1/qid=1451427800/ref=olp_product_details?ie=UTF8&me&qid=1451427800&sr=1-1 Our daughter suggested that my husband and I begin to write blogs in order to help us to process the events of the past almost 3 years. She set us up in the fall of 2014 and told us […]
https://crlives.wordpress.com/2015/12/31/well-keep-the-memories/
I like to think about my childhood and living on a small dairy farm in Maine, USA. I grew up poor and didn’t know it. I always seemed to have what I needed and never complained about the clothes that were handed down from my brother Joe, to my brother Tim, and then to me. Yes, they were pretty well worn out by the time I got them but didn’t care. This is the life I knew. Toys were not common, but the ones that we did have, were important and had great meaning. I remember one Christmas morning where us kids all played in boxes instead of the toys that Santa had brought. My parents talked about it every single year, about how much fun we had with empty boxes and that they could have saved money had they only known we would have been happy with just the box things came in. That was more than 40 years ago, and I would give anything to experience those kind of feelings again, or feel the love that was generated around our Christmas tree by my family.
I am the third child out of six, all boys except one sister who came directly after me. I truly believe that being one of six kids may be the reason I am who I am today, or at least to some degree. I know that we brought many years of love and laughter to our home. When things were bleak and my parents were secretly worried about how they were going to pay the bills, they never showed that stress to us kids, but I always knew. When my mother was in High School she was voted the “most beautiful eyes and smile”, and it was these same eyes that showed the concern she had for keeping the finances. My parents always held a strong sense of ownership and pride in a job well done. One of the biggest life lessons, learned from my parents, was to set high standards and finish each job to the very best of my abilities. We were taught to not cut corners and always strive to try and finish each task on our own first, and if we could not figure out a solution, then it was okay to ask for help.
It wasn’t until my mother died in 2002 (she was 59 years old) that I realized how very much she did for my father. Up to this point I had always seen my Dad as a securely motivated man, with a strong sense of right and wrong, and a man that could figure out anything that was thrown at him. Growing up, he was a farmer, a carpenter, an electrician, a woodsman, a mechanic, and just about everything else under the sun. I always knew that my father only had an eighth grade education, but it never mattered. He was the smartest man I knew, and I loved him. After Mom died I started to see that my father lacked confidence. He was socially awkward, scared to go through the checkout line by himself, and was absolutely lost when it came to keeping track of his paperwork and mail. My mother always had been the one to do all of this and he never ever had to worry about it. Perhaps this may have been a disservice, but it worked for them for forty one years, so who’s to say what is right and what is wrong? Certainly not me.
Jumping ahead eight years to 2010, I lost my father to cancer. He was 69 years old. His illness started in May when he had a seizure and the doctor’s said they couldn’t get it to stop. He was sent to the biggest hospital in the state, (2 hours drive from my home) and stayed there for two months. He continued to have seizures which was damaging his brain, and was often unaware of who I was. He was sent to a rehab facility at one point but was put back in the hospital a short time later. Long story short, he was admitted to the hospital on May 9th, 2010 and died October 9th, 2010. There are times still when I get sad because he never made it back home for five months. But, my father who had always been a workaholic and loved being outdoors, did not want to sit in a hospital bed everyday. Though he was unaware of his surroundings for the most part, he wasn’t in any pain.
As I am writing this it just occurred to me that this could be anyone’s story. As a matter of fact this probably hits home to many readers, as they can relate to parts of it. We always hear that we “don’t know what tomorrow holds”, and nothing could be truer. I am already starting to see subtle changes in myself since my Dementia diagnosis last year, and it makes me much more aware of what it is that I really have around me. The doctors best educated estimate is that I have between two and five years, though it is just that, an educated guess that is most likely spurred on by Traumatic Brain Injury. I truly am aware of the significance of each morning when I wake up and hear the birds singing. I am aware as to how very fortunate I am to have a wife that loves me unconditionally, and is willing to walk this journey with me despite what we know it will lead to. I am also aware of how very blessed I am to have three children (young adults now) who all know the importance of family and what is associated with that, and that they all love me the very same way that my parents loved each other, and each of us kids growing up. Family is everything, and I will never take that for granted. I worry about what this disease is going to do to my mind, but I have to concentrate on the now and not worry about the “what ifs”.
I am a strong man who chooses to believe that God is in control of my life, in control of my family, and most of all, in control of my future. I find no reason to stop believing that now. However, have you ever wanted or wished that you could just pluck your head in the sand to get away from circumstances, and when you came back up for air everything was okay and as it should be? Sometimes that is what I wish for, but know that that is an unrealistic idea. Life is unpredictable and we really don’t know what our tomorrow’s hold for us. And truth be known, it is probably best that way.
Through the years there have been many events in which I hold dear to my heart and will carry them with me till the day that I die. Growing up on the farm was something that I hold dear as well. I grew up as one of six kids, and we didn’t have a lot of money but I am certain that we were happier than kids are today. Some of my friends in grade school were always so special to me, and I can’t remember if I ever told them or if they even knew it. Another is the first day that I met my wife for the first time after being pen-pals, and going to high school at different schools. This memory will always be precious to me. She was, and remains to be my very best friend. It is these type of things in life that make life worth living, regardless of how long that life might be.
I am still in relatively good control of my daily tasks, am aware of what is happening around me, and still keenly aware of where and what I am doing with my family and friends. This is a disease of the brain and sometimes my brain plays tricks on me without me realizing it. I would swear on a stack of bibles that I just took the dog out to pee, when in fact it was two nights ago. I am certain that I took my pills and had dinner when in fact I hadn’t. I don’t always realize the significance behind these mistakes, in fact I don’t think I ever do. To me, it’s just pick up from where I left off the last time, but it’s not that easy. I am fortunate in the sense that I have my wife to hold me accountable and remind me all the time of everything that I am supposed to be doing. I often think about the people who don’t have family or loved ones to help them, and how helpless they may feel at times.
Physically I feel like a train wreck. Because of a a combination of side effects from medications and an inability to stay active like I used to I am gaining weight and feel like I am becoming weak and more tired with each passing day. I am holding water so bad that I gained over 30 pounds in less than a month and have now been put on water pills in an attempt to dispense it. If all of this is a glimpse into the future as to what it is like to be a senior citizen than perhaps I’m getting the better end of the stick after all.
Its getting harder for me to come up with the correct wording to write this blog now, spelling is a crap shoot, and staying on task is getting more difficult. Maybe I just need more sleep, or maybe I need to direct my thought process to something more worthwhile. I am hosting a family reunion on August 8, and it will be the first time the “Higgins” family will have gotten together in about thirty years. Some of these family members I have never even met, though we all live here in Maine and relatively close to one another. Hopefully it goes down as a day to remember. If nothing more I hope that my parents can look down from heaven and see that after all of these years someone is making an effort to move the family in the right direction….
I’m at a place in this journey in which I don’t know what to do or to expect? I tell others that I am at peace with the idea of me dying in the next few years, but the truth is that I am scared. It’s not the actual dying process that scares me, it is the knowledge of knowing that I am going to be leaving my wife all alone. We have the house to ourselves now that all three of the kids are living on their own and are self sufficient, and we get this bomb dropped on us. In many respects I still can’t believe that I have Dementia and that my brain is slowly dying. I am afraid for my wife and need her to know that I will fight this disease forcefully and heroically as humanly possible. I have never been a quitter and have no plans to start now.
No disease is fair, racially motivated, or separated. This disease targets anyone and apparently at years younger than anyone first thought. I have always believed that Alzhiemers and Dementia only occurred in older people of seventy years or older. This has to be a mistake, was my first reaction. I was 48 years old, physically fit, and still able to take on the world, or so I thought. I’m not ready.
We are now considering purchasing a second house that is almost next to my wife’s school. Her idea is that she could walk home and check on me at lunch time every day and we wouldn’t have to fight these rough Maine winters and an eight hundred foot driveway. This would allow us to live on the mountain in the good months and the other house in the winter. We are both very hopeful that I can stay at home for the next couple of years at least. I hope to be of sound mind and able to express myself for as long as I can, for my wife and children, and also for myself. I have built my life becoming who I am, only to become someone I don’t want to be. The horror stories I read about is what I dread the most. I am so afraid of saying or doing anything that is out of character for me. Ultimately, I don’t have a choice.
I have subtle attributes of the disease and quite frankly I don’t notice them unless someone points them out to me. I might forget someone’s name today but remember it tomorrow without a second thought. I have forgotten how to tie my shoelaces, something that I have done a million times before but now can’t remember. My wife has put new elastic laces in all of my shoes so now the only thing I have to do is slide my foot in them. They are so easy I wish I had known about them before I got dementia.
As I try to simplify my yard, lawns, and gardens I am trying to do it so they are as maintenance free as possible. I have cut back on lawn sizes this year as this may be the last year that I am able to do them mself. This makes me sad as it is one of the things that I enjoy most. While on my mower, I am not bothered by the phone, people in general or any other distractions. On the other hand, if we get another house I would now have two yards to maintain. Sometimes I feel like I am on a treadmill and going no where. It’s really hard to know for sure what to do to prepare, yet in some ways it is good that I have the time to so.
In some twisted way I feel fortunate to have the time to get my affairs in order before I get to the point of not realizing either way. I took the time with my wife to shop for a gravestone and we are having it placed in August after it gets here from Norway. We have taken the necessary steps with Elder Care lawyers and I have started writing down the things I want done at my funeral, right down to the music that will and will not be played. This is afterall, about me, so why wouldn’t I want to be a part of the planning?
It has been a year now since I was diagnosed and as I think about the changes that I have noticed I have to wonder what another year is going to bring? This journey is not an easy one by any stretch of the imagination. It is so very subtle, yet 100% percent deadly. First of your mind, and then of your body, and finally your life. The stages are somewhat the same for everyone, though the speed in which it progresses can be very different. I’m going to be fifty years old next year and know that I will never see sixty, and quite possibly mid fifties. From what I understand I won’t realize it, though that brings very little comfort.
I can’t believe that you just turned 22. It seems like just yesterday when we were told that we were expecting. I was flat on my back in the hospital. I had run over some wires left by Central Maine Power. One of the wires shot back like a missile and went through my leg wrapping around my tibia and fibula. It took the doctors a couple of hours to get them out in surgery. Your mother was milking the cows at the time and I remember hopping into your Mimi and Papa’s house and asked Mimi to pull it out. Your grandmother was so funny running around the house looking for her purse so she could rush me out to the hospital!
I will never forget the night that we went in to have you. I had sent your mother in for a hot bath, candles, a book, and a wine cooler. I had read that people in Europe often did this for their wives when they were due to deliver their babies. A couple of hours later, she told me she was having what she felt were gas pains. When I asked her, “Just how far apart are those gas pains?” We decided together that they were actually contractions and that we ought to get you to the hospital. In the early hours of January 29th, the snow was falling more gentle than I think I have ever seen it. It was cold, and peaceful.
Nine hours after those “gas pains” began we had a “whoops I was wrong” from the doctor who wore his Mickey ears that we had brought home two weeks earlier from Anaheim, California. (We had won the trip for being Maine’s Young Farmer’s of the Year.) The doctor had been telling us all through the pregnancy that you were a boy, but instead we got the most beautiful baby girl in the world. I became the proudest father in the world. At that time, I now had a very beautiful son and two of the most gorgeous baby girls I had ever seen. I felt so proud and there was nothing that could make me more proud.
Two weeks after we brought you home, we ended up in the hospital with your sister. She fell down the feed hole in the floor of the barn landing on the concrete floor, fracturing her skull. This meant that you had to share our bed with your sister when your mom nursed. Not to be left out, that meant your brother also had to join us in the water bed. Looking back on it now, our family bed captivated some of the most special times we had while you kids were young.
Your mother was a hostess at a local restaurant at the time, and shortly afterward, returned to teaching. This meant that I got to babysit a lot. One of the funniest early memories was when your siblings drew on your head with marker. You were a fairly easy baby, as you were often entertained by your brother and sister. You weren’t bothered at all!
You also weren’t helpful at mealtime. While your siblings would drink formula in a pinch, you would not. In fact, you would fill your cheeks and blow it back at me, time after time. It apparently was a taste in which you wanted no part of, and it was not going to be in your diet. You definitely had, and continue to have, your own spin on the way that you were going to do things. That is one of the things that makes you so special.
You loved to toddle after your older brother and sister. Matthew (5 years older) was particularly helpful, getting you out of your crib and bringing you to the barn. One day we asked him to show us how he got you out of bed and he proceeded to show us. It wasn’t pretty, but you never cried. It was absolutely precious watching him hug you while pulling you up and out of your crib, while landing you on your feet. Then he’d put you in your boots, put on your coat, and bring you out to us!
When you were 2 years old, you were quite a handful. We couldn’t take you anywhere. Restaurants were especially challenging. One time when you were having one of your fits, you threw your fork up in the air and it went flying into a neighboring guests mashed potato. More than once either your mother or I had to take you out into the car kicking and screaming, making us so very proud, while your siblings finished their meal.
When you were 4, we signed you up for dance in an attempt to civilize you. One day your mother carried you out in a football hold because you didn’t get your way. You were always so very cute all dolled up in your dance outfits, but was a regular Tasmanian Devil under them. Eventually you grew out of your unpleasant stage and were a joy to be around, always bringing a smile to my face, even on the darkest of days.
Everything was precious to you. Remember Wormy, when I was building the deck? He was a tiny caterpillar that inched across a board while I was building the deck. When I pounded in nails to attach the board to the frame, the boards bounced, which caused the caterpillar to fly up in the air and out of sight. We must have searched for that thing for 30 minutes while you were wailing about how I was “trying to kill” your newly found friend.
When you were 7, we sent you to Camp FAir Haven. I don’t know if it was you or your sister who
wrote and said, “Dear Dad, I love you but I don’t miss you.” It was there that you learned to swim, do archery, ride horses, do crafts, and really socialize with other kids your age. You would have been fine if we had dropped you off on day one and picked you up 2 months later. You didn’t seem to miss home or us at all.
I loved helping you memorize your AWANA verses, and being one of the leaders while you kids were little. Do you remember the AWANA Olympics? Many churches in the central Maine area would all get together and we would compete for the gold, just like the real Olympians. It was always a crazy day of events and one thing that always impressed me was that no matter if we won or lost, we came home having a great attitude and anxiously talking about what next year would hold. All three of you kids lived for the AWANA program, the people, and the games. You always loved the competition of trying to memorize the most verses.
I remember watching you play field hockey, softball, and cheer. But most of all, I loved to watch you dance. You and your sister used to put on dance shows and practice your acrobats in the living room. I remember making you a practice room upstairs after your brother moved to Florida. You both would dance for hours on the hardwood floors we put in for your tap shoes. For years we would be downstairs listening to the tapping of your shoes as you would practice your routines in preparation for the long-awaited dance recital every Spring. You were truly happy when you danced, and all of the other stuff just seemed to melt away.
I remember when your Mom would take all of you kids on her very own “Summer School” field trips that she researched out for you. I remember getting home from work and having all of you talking at once about how much fun you had on each particular trip. Looking back on them now, I realize just how much I missed out on, and should have been a part of.
I loved playing on the trampoline with you kids and making you pop like popcorn. I truly loved to hear you all belly laugh. It is a real wonder that we didn’t ever have any real serious accidents on that thing. 
One of the best times we had, was when your German Exchange Student, Jana, came from Germany, and we got to canoe down the St Croix river together. Camping out was so much fun and canoeing for eight hours every day was simply breathtaking. The people were great and the food was even better. Who would have ever thought that we could make a cheese cake in the middle of the woods over an open fire and a bed of ashes?
Then you got to go to Germany to visit Jana after your dance competition in Pennsylvania. Your Mom and I got lost in Newark and was glad I had talked her into buying a GPS at a huge Cabella’s store. We are still using that same GPS today.
You are our free spirit. You are always the one trying desperately to not make waves and have everyone just live in harmony. Your heart is so good, and is your very best attribute. If the world were full of others that loved as deeply as you, we would all be living in harmony, and not in the total disarray that we have in our society today. You bring out the very best in everyone honey and I wish for you this day, that you never lose sight of all that you have to offer. Hold on to your sense of right and wrong, and always know that you make my days brighter. It is your awesome sense of loyalty and love that you portray every day that defines you. Please don’t ever lose that.
I know as a Christian I am going to have a home in heaven. That is a promise to me, from God. As a child I learned about heaven, about God and Jesus. My parents had a series of books called “The Bible Stories”, and I remember reading them with an awe that at that time was not fully understood. My great Aunt Muriel used to pick me up and bring me to a small church in Albion, Maine. I loved learning and was fascinated by the stories my Sunday School teachers used to tell through the felt board figures. I don’t think I ever fully comprehended what those stories meant at the time, but as I matured and grew older I was starting to realize the significance that these would mean in the growing up process.
I’m not 50 years old yet and have started to plan my funeral. It’s not something that I want to do, but something that I must. I don’t want to leave all of the plans for my wife to have to do herself. I know what I want and don’t want, so it only makes sense for me to contribute and get it over with. I’m not at all afraid to die, but I am afraid of leaving my wife and family. The biggest problem with Dementia is the long goodbyes. I understand that this process may take a year or so and I won’t realize it, but my family certainly will. So, I will try to simplify the property management and chores as best as I can, so that my wife will have to do as little as possible.
This home had been a dream that was two years in the making. It was something that was equally important to both of us to make it “ours” with our own gardens and clusters of woods up and down the driveway. This was our dream together for our retirement together, but God has a different path and plan for us. He wants me to go to heaven first and help prepare a place for my wife and family. I can do that. Like I have a choice right? One thing that has become very evident to me this past year is that God doesn’t make mistakes, ever. So, I will continue to simplify life and make the very best of every single day. I will continue to love my wife and kids for as long as I humanly can.
I hope that as this disease progresses, my family understands that my love for them will never falter, despite what may come out of my mouth at times. I know that this disease will completely take over my mind and that it is likely I will become someone I am not. It is a scary thought, yet I cannot allow it to consume me and I refuse to let it. I will make the best of every day, no matter what.
Have you ever noticed all of the art that is plastered all over the refrigerator? Or when you walk into a friends house and you can’t help but notice the little drawings of stickmen and women that represent you and I as moms and dads? Have you ever taken the time to really notice the report card that has always seemed to go unnoticed by everyone?
As I step back and look at the amount of “refrigerator art” that my wife and I have collected I can’t help but smile. Every single picture, every name, every stickperson, every report card means something so much more significant than it seems to have had way back when. Every picture tells a story, they are all dated and a brief description is written mostly by my wife as to the story it tells, at least according to our children. It reminds me of how innocent children are, and how these pictures relate to how they are today.
I remember as a child I had once drawn a picture of my brothers and I having a competition as to who could pee the furthest. Yes, I did that! My mother asked me what it was and I told her that it was of course me and my brothers peeing. The part I did not tell her is that the contest was to see who could pee as far as the fence, the one to do that was victorious. My brothers let me win and I quickly found out why. The fence was electrified, and let me tell you it really is a significant shock to your system!
I was in serious accident a few years back and my son was at a friends for a sleepover. My wife was at home at the time and she got in touch with our son to let him know what was going on. We live in a very remote area and our nearest hospital was about a 45 minute drive. My son Matthew, who was 13 at the time made a bee line on his bicycle to where I was (I was at a mens retreat at a christian camp, and we were all on ATV’s getting ready for a eight hour ride) but I was told later that he watched the ambulance drive by him as he made his way to me. He later wrote about that experience, his thoughts and his fears. He thought for sure he was going to lose me that day. I still have the letter that he wrote, and I will never part with it.
My middle daughter Elizabeth who for the longest time was tongue in cheek around everyone except us was and remains to be a treasure. She was analytical then and remains to be today. She has always put alot of pressure on herself to be the best she could be. Her refrigerator art was precise and beautiful. She liked to use all the colors available to her in her pictures and in her stories. Her name was always beautifully written in color. My wife and I still have every single piece of “art” that she made in her opinion, refrigerator worthy.
And then I have the baby of the family, Cailea, who is today exactly who I expected her to be. She is a free spirit and has a true passion for life. She is beautifully poetic and artsy. She has a love of children and surrounds herself with them at the local YMCA where she works part time while in school. Her creativity is breathtaking and it shows in everything she does. There is so much of her energy that I can’t help but smile about the fact that her mother and I did something right with her as well.
As the years go by and those memories remain on the refrigerator, I hope that we are all able to back on them as “good times” in each of our lives. Our children are the ones responsible for bringing so much joy to our lives, and if there is but one person who doesn’t understand this than they must be wearing dark glasses and not able to see the true joy those refrigerator memories bring to us later in life. Cherish those thoughts, those ideas, and most importantly, cherish the true memories that you have filed in your memory banks all these years. These are what really matters.
I wonder sometimes about the life that I have led up to this point, and if what I have around me is deserved? The wife that I have had for almost 28 years, the three children, 2 grandchildren? Or the home that I live in and the acreage surrounding me? Then there is the materialistic “stuff” like a garage full of tools, lawn mowers, vehicles etc…? Do the materialistic things that people possess really define who a person is? Sadly, I think it does.
My wife and I tried for over two years to purchase the house that we live in now. It was a foreclosure that involved multiple banks and was a complete fiasco. Fortunately, my father-n-law who is Real Estate savvy, was able to guide and direct us through the process of purchase. We moved in on Thanksgiving weekend, back in 2010. We were finally secluded and out of the hustle and bustle of the farm where we had been for the prior 23 years. We built a new house on the farm back around 2000 or 2001 and sold it to my brother and sister-n-laws who had been living off the farm in a neighboring town. It was a great move for both our families and allowed us to finally be by ourselves and have our own identity away from the farm. It is sometimes very hard to escape the everyday comings and goings of a very active farm, when there is a progressive compost business, a thriving maple syrup supplies business, a sawdust business, a maple syrup business, and multiple apartment complexes and many business district buildings. We were finally alone and plenty of breathing room that we had never had before because we were surrounded by so many businesses.
We were hit with news that neither my wife of myself could have ever been prepared for. I was fired from my job of 17 years for forgetting things one too many times. I had been noticing for some time that I was becoming forgetful but always attributed to the fact that I was tired, I was getting older having just turned 48 years old, and my workload was becoming heavier and faster paced. This was totally new ground for me, and my wife. In a single morning we lost half of our income, literally. My wife is a school teacher and we both knew we couldn’t pay our bills on a single income. Due to many health problems that I have accumulated over the years we decided to apply for disability and was denied twice. I went seven months before finally landing another job doing the same thing I had done for the first company and I was elated.
I was holding my own at the new company for the first month but then started falling apart there as well. I was once again starting to forget things and my co-workers could see it. They addressed it with me and I assured them that I could get back on task and not to worry. Much to my dismay, it was starting to happen on a daily basis now and my coworkers suggested I seemed to be having trouble holding onto my short term memory but could recall things easily from years past. This employer also had to let me go, though they did it with so much more class than the people did where I worked for 17 years. I made an appointment with my doctors and after many tests it was revealed that the frontal lobes of my brain had dead and dying parts and I had a condition called FTD (not the flower people) or Frontal temporal Dementia.
So as we continue to adjust to a new normal, we are slowly drifting apart. It’s subtle at first, and some days I would swear that I was in fact “normal”. But, the truth of the matter is I am losing ground every day. I’m not mad about this anymore, as I feel for the most part I have accepted the “what is” and have resolved to try and make the best out of every opportunity. If I don’t learn something from this experience than it is a wasted experience. I hope that my wife and family realize how very much I love them and how important they are to me. It appears I may be blazing the trail to Heaven for my direct family, but know that I will most assuredly be reunited with them once more someday.
Picture from my front deck.
Have you ever been in a funk where you were just not yourself? People tell you that you are “off” today from your normal self?. You know there is something that you feel, but are are uncertain if what you are feeling is good or bad? You want people to just shut up and leave you alone?
Well that is what I’m feeling today. The part about people leaving me alone is not difficult for me, as I am home from 6:45 am to 5:00 pm every weekday. For the most part I enjoy my alone time, but this has been a very long winter cooped up in the house. We have had more snow this past winter than I can remember, and keeping the driveway cleared out has been a challenge in itself. I have had to hire it all done this year as my snowplow wasn’t working properly, and that has been an added cost on an already tight budget.
Picture of Me, my son, and grandson!
I wish I was able to go back to work, but I know that that is not possible. Physically I could manage a lightweight job I think, but to keep my thought process alive in my brain has proven to be a challenge. I will start a project and walk away from it, just to start another project somewhere else. It drives my wife crazy. I find it fascinating that my brain is working like it is, different than last year, short circuiting now and then. Before I was diagnosed with Dementia I had only known one person that ever had it, and I believe she had it for years before succumbing to it.
Me and my youngest brother Mel, with our dad, shortly before he died.
There are many different types of dementia, mine being Semantic Dementia. My doctors believe that I have had this for a few years, possibly being sped up or brought on by TBI or Traumatic Brain Injury. I’m grateful that I have the time to prepare for the end. If I were to die unexpectedly, for example in an auto accident I would not have the time to say good bye to those that I love. Whereas with this I have an opportunity to tell them every single day, up till the time I am no longer able. I have learned that I need to take advantage of the time that God has given me on this earth, realizing that I will see them again, and soon.
Confusion is starting to become my normal now. I’m tired most of the time and could fall asleep anywhere. I don’t feel good about the way that I am right now. I’m moody and don’t mean to be. I’m punchy over the silliest things, and would rather not be in large crowds. People with loud voices and large groups of people can be crippling for me, but I have found ways to get through it. I look at the floor and try and drown out the high pitch sounds concentrating on the grip of my wife who is always by my side during any type of gathering. My family has been great, though I know this has taken a toll on them as well. They all know that I long to be the way that I used to be, but understand that I will never achieve that.
There is no doubt that the past two years have been a roller coaster ride of emotions for me, my wife and children, and my wife’s family. They have all taken this new path that I have been placed on with concern and a whole lot of love. They are all my support system and I need them more than they could possibly know. I need them to know that though I don’t remember things, I love every single one of them unconditionally. I am relying on them to make me feel normal, appreciated, needed, and most importantly, loved.
rustyhiggins2015 