This is a long article, much longer than most but, because the content and the story are critical, I’ve not edited it down but published it in two parts.
The author is a friend I’ve met on the Internet and her story is compelling.
My husband and I met in church and were married on Valentine’s Day in 1987 after a short, whirlwind romance. I was a petite, 21 year old widow with two toddlers and he was a 31 year old rugged construction worker. I was attracted by his muscular physique, jovial personality and admired his outspokenness. He was known for his loud booming voice and eccentricity. He was just getting his budding company off the ground and after we married I quickly stepped into the role of secretary and worked from our home.
We added three more children within five years and I loved being a stay at home mom. As our family expanded, and he became more successful, we moved from our apartment into a trailer, then to house we bought, and finally built our “dream home” after 10 years of marriage. After establishing an office in town, it quickly became the hub of our lives with constant comings and goings. My husband’s commanding presence aided him in business and he made connections with the prominent men in our small town and the neighboring communities.
He also began to buy up real estate and flip them into rentals in preparation for our retirement. I kept busy homeschooling our five children and also was my husband’s confidante in business. He has said often that he didn’t become truly successful until he met me. I was soft spoken and tended toward shyness and therefore content to stay in the background of his business. Not very many people knew me and the ones that did referred to me simply as Charlie’s wife.
Our family was also involved with a local church which we attended every week. We would purposefully step away from our chaotic lives several times a year to take our kids on short vacations. Typically I would rest while he devoted all his time and attention to the children, playing tirelessly with the kids until he wore them out. My husband and I had a standing date, once a week, and we kept it best as we could. When we had no sitter we would put the kids to bed early, eat together, play board games and drink a six pack of beer. Other times I would meet him for lunch or dinner in town where we would catch each other up on life’s events, the children and business.
We had a lot of ups and downs in our marriage but we made it work until our children were grown and gone. Our first two grandchildren came in 2007 with four more in the next ten years. We began parenting our oldest grandson when he was just 11 months old and I gave up the teaching degree I had begun pursuing at a local university to stay at home with him. Our grandson quickly became the center of our world and the apple of my husband’s eye. He was a very devoted grandfather and threw himself into the task of teaching our grandson all his preschool skills as well as potty-training him.
We agreed that I would take care of him during the day and he would care for him nights and weekends. My husband made a bedtime ritual of taking him outside every night before tucking him in to look for the moon. He was a tender grandfather and he and our grandson were inseparable. As our grown children became busier in their lives we knew it was time for us to think about slowing down and prepare for retirement. We concentrated on getting out of debt and made plans to snowbird in Florida after we sold our mansion house.
It was about this time I began to notice subtle changes in my husband, which first showed up as forgetfulness and showing up late for appointments. These were easy to dismiss given our busy lives. He also had two secretaries and a wife helping him with constant reminders and so his struggles went unnoticed for a while. As time went on, though, his behavior became more bizarre and it would leave me scratching my head or simply questioning what just happened. He began to hide large amounts of cash in various hiding places, refusing to disclose their locations to me. I discovered this after finding a large wad of hundred dollar bills lying on our closet floor. When I questioned my husband about it he asked me where I found it. He broke into laughter as he suddenly remembered that he had hidden the cash in a suit pocket. I shuddered when I realized that the suit had been on my donation list and actually had gone to charity the previous week.
My husband also became obsessed with the topic of economic collapse and the inevitable “end of the world as we know it.” He built a hidden room in our basement for his growing arsenal and accumulated an obscene amount of firearms and ammo. He also began storing large quantities of food and supplies so we could survive the coming apocalypse. He began obsessively hoarding and had several buildings full of the items he collected. I was always met with panic or anger when I approached him about cleaning them out. At one point he was obsessively buying band aids and peanut butter and every time he came home he added more to his growing collection. He also began urinating in public places with no regard to who was around or the closeness of an actual rest room.
He became very accident prone and we had several frightening incidences that caused me to watch over him more closely. On one occasion he forgot to set the parking brake on a dump truck and it went flying down the hill. He began to drink heavily…more and more each day, his consumption increasing steadily over a few years’ time until I realized he had become an alcoholic. It would become necessary to pull him out of a bar or pick him up from his friend’s house, stone cold drunk and staggering. I was unable to completely keep him from driving while intoxicated and this kept me in a state of anxiety.
When our grandson was around five or six my husband began to be physically aggressive toward him. At first it was an occasional rap on the head or a twist of his earlobe. Then their wrestling matches became increasingly more intense and always ended up with my grandson hurt and crying. My husband began to call him a cry-baby or sissy, taunting him until he lost his temper. He would point at our grandson when I stepped in exclaiming, “He started it!!” I was shocked by this, of course, but my husband showed no emotional response, except to laugh, when I yelled at him about it.
The abuse he inflicted upon me was entirely different and sexual in nature. Our physical interactions gradually went from being playful in nature to violent and frightening, eventually progressing to the point where I was never safe from his aggressive, random advances. I did my best to leave the room when I felt him looking at me ‘in that way’. There were many occasions where he blocked me from leaving, pinned me against a cabinet or door, and vulgarly groped me while I fought him off.
The more I fought and screamed, the more he laughed, and the more aroused he became. I began to lock my door when I was changing my clothes or bathing and made a point to never be undressed in front of him. I shamefully kept this a secret from those around me upon realizing I now found myself in a completely abusive relationship.
While this horror unfolded around me my beloved mother was suddenly diagnosed with stage four lung cancer. We were very close and I was now facing the most tremendous loss of my life as I became her chief caretaker. I spent countless days with her in the hospital and running her back and forth for treatments. It was at this time that our adult children began noticing something was not right with their dad and asked me what was going on with him.
In my absence my husband started randomly calling them, demanding to know where I was and when I was coming home. Frequently I came home exhausted and emotionally spent after long hospital days only to find my husband cold and angry at me for being gone. Not once did he ever offer me even a shred of comfort or a shoulder to cry on. I was now juggling the care of my mother, a six year old boy and a husband who was losing his mind.
Alzheimer’s disease ran in his family and so I began to do research on it, reading every article on the subject I could get my hands on and watching countless Youtube videos looking for answers. . I was always puzzled when I read through the list of Alzheimer symptoms because only half of them matched my husband.
I had been caring for my mother several months when my Father was diagnosed with pulmonary fibrosis after a hospital stay and put on oxygen with a prognosis no better than my mother’s so now I was taking care of two dying parents. This took me away from my home even more and triggered worse episodes with my husband. I had to start finding places for my grandson to stay so that he’d be safe while I was away. This was challenging because no one really believed my husband was not able to care for our grandson anymore.
In the meantime, my husband’s construction company was ailing and had dwindled to a shadow of its former self. Our nine rentals had become rundown and my husband had started renting to very unsavory characters. On several occasions my husband took out hefty loans at the bank we had used for thirty years and I had to step in and insist the loans be canceled. My husband also became very apathetic and started napping throughout the day whenever he could, even while talking to customers.
This was by far the hardest time in my life up to that point. I had been working to get him better health insurance for some time and finally secured a plan that would enable him to see a specialist and hopefully bring us some answers. I made him an appointment with a local neurologist as soon as I could. The doctor put him through a few tests and scheduled him for a cranial MRI.
The results came back with the phrase “frontal lobe atrophy” embedded in the hard-to-understand medical terminology and, during our follow up appointment I heard the term FTD for the first time in my life. His neurologist did her best to explain the brain disease but all I was heard was the word terminal.
As we drove away that day I quietly wept when I saw the tears roll down the face of my husband. We spoke about the good life we had had together and how we would make our last years together the best. We would home school our grandson and travel the country while my husband was still well enough to do so. It was devastatingly sad and surreal at the same time.
From that point on we were thrown into a confusing barrage of appointments, referrals, more tests and an overload of information. I was given pamphlets to read and a large “to do, and not to do” list. We secured POA’s and hired attorneys to handle our estate planning to prepare for our future with FTD. I joined several on-line support groups after I exhausted myself trying to find one in my small rural area. I found myself in a suffocating, whirlwind with too many weighty decisions being thrown at me all at once.
Of course I panicked, and as a result made several missteps. I desperately needed the support of family and friends to help get us through the tsunami that had now overtaken us so I typed out a brief letter describing the struggles we were facing with his diagnosis and ways they could help. I mailed this letter, and an FTD pamphlet, to each family member and close friend and waited for the support to come. But the support only trickled in at best and, on the contrary, I was met with a lot of suspicious questions.
It seemed to be the general consensus that I was either losing it or exaggerating due to the extreme stress I was under in caring for my parents. The responses of our church friends were equally baffling and their religious, verbal sentiments left me feeling extremely frustrated. I began to distance myself from them and anyone else that I perceived as less than supportive. Even the on-line support group wasn’t completely helpful. There was always an odd blend of responses after posting about a particular problem or dilemma I was going through. I received comments such as, “your husband doesn’t know what he’s doing”’ or “he can’t help it” and there were always criticisms (veiled as tips) on how I could’ve (should’ve) handled the situation differently.
My grandson and I were suffering terribly as my husband was become increasingly out of control. Eventually I became an angry woman, really angry. I kicked into brute, sheer survival mode and began to make the conscious choice to disregard the opinion and judgments of others. I’d like to say I didn’t care anymore but that would be false. I just didn’t let their feelings effect or alter the decisions I needed to make or to define who I was as a person. I began to assert more authority when dealing with my husband’s unruly behavior. I postured my body and spoke forcefully to gain control over my now manic-husband.
This change in my behavior was successful in controlling his acting out perhaps 50% of the time and although he was on a calming drug his behaviors increasingly became more difficult to manage. He was up with the sun and didn’t go to bed until after midnight. At every doctor’s appointment I would speak up about his physically aggressive behavior but to no avail. Secretly, I wished they, someone, anyone would remove him from our home instead of leaving the burden totally on me. I felt like I was in the middle of a crowded room screaming for help but no one was listening. I called the FTD hotline and was told that he needed to be placed in a facility but no local facility wanted a strong, fit man of 62 with dementia. There was the additional difficulty that, even though the BMV had only given him limited driving privileges, he was still fairly functional and driving. His alcohol consumption had increased and now marijuana was added to the mix. His speech grew increasingly vulgar even in front of our grandson. Since he forbade me to speak at his doctor appointments anymore or he would ban me from all future visits, I began to deliver a typed letter to the office the day before to update the doctor and give topics that needed to be addressed. We could no longer travel together and in fact I couldn’t even take him into Walmart because he behaved like an unruly toddler bouncing balls in the toy aisle. When we ate at restaurants, he would no longer stay at our table but would be up wandering around, talking to the other patrons. I would typically sit and eat alone trying not to show my embarrassment. Our lives had become a living nightmare.
My husband began hiding loaded weapons around the house and had three pistols under his mattress and in his bed frame. Then he chased a little boy after a soccer game because he kicked our grandson. I was still caring for my parents and most of the time took my grandson along with his bag of snacks, toys and an iPad. Our only reprieve at this time was when my husband stayed with his ailing father to helped care for him. My husband would stay two weeks at a time and this stay had a very calming effect. His father’s home was very quiet and low key and my husband thrived on the strict, regimented schedule his father adhered to every day and enjoyed spending time there. He was much happier there than he was with me and our grandson. My house would calm down immediately upon my husband’s departure and we would relish the peace while he was gone. But there was always a cloud that hovered over us as we knew it would be short-lived. When he returned home things would seem okay for about three days and then it would all start up again.
During one these times home I had a terrifying experience with him as we lay in bed watching TV together one night. He began to force himself upon me and the situation quickly went out of control and turned into a vigorous wrestling match as I fought him off. The episode only ended after I screamed at him to stop. He finally came to himself like someone waking out of a dream.
I was traumatized by the assault. For the next two to three weeks I couldn’t be within 6 feet of him without flinching involuntarily. It was the last time he touched me and my heart became closed to him from that moment on. I detached my emotions as much as I could and no longer considered him my husband. I went to his doctors and secured the documents needed to obtain guardianship of him when the time came. I informed the sheriff’s office of my husband’s condition and his violent nature in case I needed to call them in. Each night, I slept with a knife tucked in my mattress with a gun and ball bat close by at all times.
I gave our construction company to our youngest son and took control over the rentals to clean them up. My mother was my only true confidante during this time and she was lingering between life and death. When she finally passed away I went into a terrible state of grief and depression that was so bad I questioned I would live through it. My bvFTD spouse had absolutely no sympathy for me and would become agitated when he saw me upset. Grief in his presence was impossible so I began to walk for an hour every morning on a back road and cry over the loss of my mother. I tagged this the Mourning-Walk and it ended with a mountain hike on the one year anniversary of her death.
After that I couldn’t cry for the longest time and it really concerned me. I was also caring more and more for my badly declining father because his grief over my mother’s death seemed to do him in and he more or less had given up. I had only disclosed the abuse to my mother and so my father fluctuated between sympathy and irritation toward my husband. They had been close friends and golfing buddies so I found it hard to tell my father what he had done to me. I had kept the secret from our children as well because I didn’t want them to have that lasting memory of their father.
My husband had begun to go around town and to our family members, telling lies about how mistreated he was at home and that I had taken all of HIS money. I no longer allowed him be alone with our grandson or take him anywhere alone and so he told everyone that I was keeping our child from him. He vilified me in the public’s eye and even to our own family members to a degree. I wouldn’t let him tuck our child in anymore because he kept the boy up way to late which made him tired the next day at school. I could no longer allow him to make our grandson’s meals because the portions were huge and full of fats, salt and condiments. He wouldn’t let him get down from the table until he finished every bite unless I stepped in. When I had to take a task away from my husband that he was accustomed to doing I was always met with an onslaught of insults and days of agitation. His alcohol abuse was becoming increasingly worse and I made threats to him after several unpleasant, scary episodes and sleepless nights. I would frequently find the stove burner left on, entry doors wide open and once I found him passed out drunk in front of the wood burning stove with the door open and flames shooting out.
No matter how much I threatened the drunken FTD episodes continued. To make matters worse his father passed away and consequently we no longer had the periodic two week break we’d had before. Now our torment was constant and with no end in sight.
Please go on to Part II for the resolution
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