Dementia Combined with a Blood Colt Sent My Father to Heaven at Age 77

In the summer of 2012, I stood in a bare hospital room at Cartersville Medical Center in Cartersville, Georgia where harvey_ray_cartermy father — once a strong, stubborn, flawed and loving man — lay, now a frightened, crying and helpless dementia patient. Over the past year, he has lost much of his cognitive ability. And worst of all, with his type of dementia, he is aware of what is happening to him, even as the rate of his decline accelerates. Like a caged animal, he’s desperate to escape.

Despite the long-shot comebacks that sometimes happen for patients in other situations, there is nothing that can restore my father or the millions like him. Worse, there is nothing that can delay his inevitable descent. As adults, we give lip service to the idea that we can’t control the world around us, but most of us don’t really understand what that means until we’re faced with a curse like my father’s. We don’t really believe that a lifetime of work and plans can be erased by the crumbling of our minds or bodies.

My father had sundown syndrome dementia. The doctors say it is perhaps the most difficult form of dementia, leaving him with no control over his emotions, no short-term memory and no ability to make sense of the world. He lives in the instant, repeating the same question just seconds later, unable to remember that he has just been given an answer. When I saw him during visitation, he knew something was wrong, but he couldn’t understand why he was in the hospital and in the adult mental health ward.
When diagnosed in 2006, he became one of at least 5 million Americans suffering from some version of Alzheimer’s or dementia. He woke-up one Sunday morning and did not know where he was at. He couldn’t even tie his own shoes. Rushed to the emergency room that day to discover the issue. Three years before, during a minor operation to implant a snit in his heart artery, something happened to dramatically worsen it. Perhaps a series of small strokes, doctors tell me. Whatever it was, he was never been the same after that operation. Ever since, he suffered from hallucinations, rapid mental degeneration, sundown syndrome, agitation and fatigue.

During my last visit, he couldn’t understand what was wrong. He knew he was not at home, where he wanted to be, and enraged by the fact that he was not in control of his life. Over and over, he asked what he did wrong and why he was in the hospital, and he apologized for hurting me. I was in tears as he repeated “Please take me home” and “I love you.”

He stayed the same, committed to his family and his work, while I went off to college,, got married, and became a writer. No matter where I was, he reminded me that I always had a home to return to and a father who would protect me.

Yet when I last saw him, curled up in twisted blankets on a single bed in a bare room in the geriatric psych ward. He was 77 years old, and his body, though weakened by years of his disease, is strong enough to keep going — and keep fighting. Our presence in his room agitated him. He beat his fists against his head, saying over and over: “I wish I were dead.” Seeing what he’s cursed with, a heart attack, perhaps even cancer, seems merciful.

I stroked his head on the pillow, trying to calm him, the way he did for me when I was a sick child. This man, who protected me when I was little, I now have to leave alone at night in a dark room in a cold hospital ward far from his home.

I know that, given half a chance and a second of lucidity, he would kill himself.

What is most frightening is that none of the many doctors and specialists he has seen have found a way to keep him stable, to dampen the rages that cause him to strike out at his caregivers.

It was my senior at Berry College when I made a major decision about college and my family. I left school to take care of my father’s health needs. The money used for to pay for school had to now be used for my father’s health care needs. So I dropped out. And applied for social security disability. That was the only way I could have a monthly set income. The whole process of applying took eighteen months from beginning to end before I started receiving a monthly check to live on. The check is not a lot but its better than having nothing for an income.

My father was my rock. He believed in me and believed I could what ever I put my mind to in life. Always a big supporter of my education because he would tell me that education is one thing people can never take away from you. He passed away on January 31, 2013 in Rome, Georgia. I sure do miss him! But I know he is in a better place now feeling no pain.

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James Carter

James Carter has a real passion for online "stuff", is an avid WordPress fan and user, and gets great satisfaction out of helping others. -- so in his spare time, he's busy doing community service with his church, spending time with family and friends while creating post for this blog.

2 Comments:

  1. My heart goes out to all of you who are doing any 24/7 caregiving…for one or for both….part of the year….or sharing with relatives….I just don’t see how you do it! I’ve been handling things for both parents for 18 months. Dad with dementia, placed in a facility last January, so almost a year ago. Mom newly diagnosed last summer with early dementia now…Alzheimers….and home alone. I live 5 hours away and have the help of an eldercare case manager and an eldercare attorney whose office helped get Dad qualified for Medicaid finally, last month. Yes…one goes through what money there is so fast it isn’t funny. I am the only child, since my brother died at age 37. I am 68, married, husband may have early Parkinson’s (and THAT IS depressing to consider!) and I still run a home based business. I am so stressed all the time, I cannot imagine if I had to add actual caregiving into the picture….and I am a retired RN! I’ve had to pay to fly daughters in x3 in the last year just to help me, because I couldn’t be down with the parents AND meet the deadlines for all the applications and paperwork necessary for the Medicaid and VA work. Parents would have a crises….and I would miss a deadline, and it would start all over again the next month with submitting all the financial info. My business fell off by 50% this past year due to them….and the reason for the business to create something sellable to shore up our own lost retirement savings in 2008…..thank you Congress and government…. And, of course, NOW….I couldn’t even look forward to any inheritance since it’s all being spent for their care. It’s not that I am upset about that…but I AM upset about our own financial future….that I cannot secure at the moment. Life is VERY frustrating and if I didn’t have GOD in my life, I know I would break down over all this. I just know He won’t give me more than I can handle. My parents are almost 92 and just turned 88. I just don’t know what’s going to happen next…..don’t have much time to reflect on it….and generally just take one day and one crises at a time! I am glad to have this fsMy heart goes out to all of you who are doing any 24/7 caregiving…for one or for both….part of the year….or sharing with relatives….I just don’t see how you do it! I’ve been handling things for both parents for 18 months. Dad with dementia, placed in a facility last January, so almost a year ago. Mom newly diagnosed last summer with early dementia now…Alzheimers….and home alone. I live 5 hours away and have the help of an eldercare casemanager and an eldercare attorney who’s office helped get Dad qualified for Medicaid finally, last month. Yes…one goes through what money there is so fast it isn’t funny. I am the only child, since my brother died at age 37. I am 68, married, husband may have early Parkinsons (and THAT IS depressing to consider!) and I still run a home based business. I am so stressed all the time, I cannot imagine if I had to add actual caregiving into the picture….and I am a retired RN! I’ve had to pay to fly daughters in x3 in the last year just to help me, because I couldn’t be down with the parents AND meet the deadlines for all the applications and paperwork necessary for the Medicaid and VA work. Parents would have a crises….and I would miss a deadline, and it would start all over again the next month with submitting all the financial info. My business fell off by 50% this past year due to them….and the reason for the business to create something sellable to shore up our own lost retirement savings in 2008…..thank you Congress and government…. And, of course, NOW….I couldn’t even look forward to any inheritance since it’s all being spent for their care. It’s not that I am upset about that…but I AM upset about our own financial future….that I cannot secure at the moment. Life is VERY frustrating and if I didn’t have GOD in my life, I know I would break down over all this. I just know He won’t give me more than I can handle. My parents are almost 92 and just turned 88. I just don’t know what’s going to happen next…..don’t have much time to reflect on it….and generally just take one day and one crises at a time! I am glad to have this space to share my personal expedience with dementia as I don’t have many other resources for support.

    • Kate:
      Can really relate to what you went through caring for someone with dementia. My father had dementia and I was responsible for his care in 2012. He was a veteran and story with dealing with the government and all the paper work was a real challenge for me. Thanks for sharing your personal story with me and my readers. Hope things get better for you. You are in my prayers!

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