LBD is Not My Daddy

My mother and father separated when I was 2. Not long after my father remarried and had two other children. Although we didn't see each other every day…I was still Daddy's Girl, and we shared a very special bond. After his mother (my Nanny) passed away in 1983, my father and his wife began to have problems in their relationship and separated. During their separation, my stepmother decided to move to Florida, where her parents resided and took my brother and sister with her. When they chose to reconcile, my stepmother stipulated that he move to Florida with her and the children, if they were going to make things work. For 22 years my father was thousands of miles away, and although I often felt abandoned by him, I was ecstatic each time he would make one of his impromptu visits to Pa. I even chose to go to Florida to live with my Daddy when Mom and I began the usual butting heads, that happens between parent and pubescent teen.

Of course, this never lasted more than a couple months. My stepmother and I never truely accepted one another and a few months into each stay, I would become homesick, and Dad would put me on a plane back to Pa. My last trip to Florida was as an adult. My father was no longer married to my stepmother (During a trip to Pa to give me away at my wedding she had decided to leave my Dad for his best friend, which he didn't know until he returned to Florida). My last trip to Florida came in 2006 during a time of complete chaos in my life. My fiance and I had come upon hard times and were going to he homeless, so we decided to move down there to make a fresh start. Our fresh start never happened; two weeks after we arrived in Florida, my fiance committed suicide. I began using crystal meth to cope with his death. This worked for about a month, when I became homesick for my mother and my children (who lived with my mother). Again Dad saw to it that I got home. In 2007 my father, wanted in Florida for failure to appear for a DUI hearing, moved back to Pa. Needless to say I was thrilled to have Daddy nearby and we became closer than ever. Then a year ago my nightmare began. Dad started calling me, complaining that there were people that he didn't know in his house and they wouldn't leave. He asked me to come over and make them leave. He sounded scared. Terrified that my father was in danger, I went down to his trailer (we live in the same trailer park) only to find no one was there.

Dad insisted they were there. Immediately I assumed he was withdrawing from pain medication he had been taking and had recently run out of. I got him his medication, and the hallucinations stopped (or so he told us). This happened several times over the next couple months, and each time we assumed that opiate withdrawal was causing the hallucinations. Two months ago Dad called and asked me to take him to the emergency room because he had severe pain in his legs and had no pain medication. I took him to the hospital's ER, and they were concerned with his heart problem and believed that was what was causing the pain in his legs. During his ER visit, he began to hallucinate and became combative with the hospital staff. He was admitted but the doctors all focused on his heart condition (which was cause for concern. They found blocked arteries but were unable to do the necessary surgery due to his weakened state of health and diminished kidney function) and soon decided to send him to a rehabilitation center, hoping to build his strength up so he could have the needed heart surgery.

During this time my father continued to have hallucinations and periods of being violent and combative. The staff seemed fully focused on getting him into rehabilitation and seemed not to address these problems. I don't have a medical degree and, although I knew something wasn't right, I didn't press the issue. After all, they were doctors. Dad was moved to the rehab center and put on Halodol for the hallucinations. It seemed to work for a while; he seemed like his old self, joking and flirting with the nurses, aside from a few conversations that didn't make sense. I knew that Dad might have some type of dementia, perhaps Alzheimer's, and although I didn't have much knowledge about Alzheimer's, I knew that most of those afflicted with it live for many years after diagnosis. My father still had not been tested for or diagnosed with any disorder, even though he had been off the opiate pain meds for over a month and there was no possibility that withdrawal could still be causing his hallucinations. At one point they had planned to send him home to live alone, but two days before his scheduled release he became extremely violent with the staff and was sent back to the hospital ER. This time the nurse informed me that my father was being treated for a urinary tract infection, or UTI, and the doctor believed the UTI was causing Daddy's hallucinations. I never quite bought that theory but, after receiving antibiotics, he seemed better and was sent back to the rehab center. For a week things were better, he seemed to himself again. He was up walking around and I was relieved, thinking maybe the doctors were right. Two days later I received a call at midnight from the rehab center informing me that Dad had threatened to kill everyone there and they were sending him to the ER…AGAIN.

When I spoke to the ER Nurse, she informed me that he was calm and polite to them when he arrived. Again they were planning to send him back to the rehab. At that point I became angry and told her that I had had enough of my father being tossed back and forth and demanded that someone address his hallucinations, delusions and violent outbursts. I explained everything that had been happening over the last year, and she agreed to have the Psychiatric Physician see him before discharging him. After speaking to my Dad for 20 mins, the Psychiatric Doctor knew my Dad was suffering from some sort of dementia and talked him into signing his self in as a psychiatric patient. While in the psychiatric ward my father was continuing to take his prescribed Haldol and the hallucinations weren't subsiding. Instead, they seemed to be getting more frequent. A few days later his Doctor spoke to me and told me that he believed my father was suffering from, Lewy Body Dementia, and gave me a few medical facts. I had never heard of LBD, and after almost two months of getting the run around from medical staff, I was determined to learn all I could about Dads new diagnosis.

I found your sight, and, although the information I found on LBD was upsetting and scary, I felt as though being informed would help me through the progression of this horrid disease that, over the years (or so I thought), would eventually cripple my fathers mind and body and eventually claim his life. I couldn't have been more wrong. Two days later my father was moved from the psychiatric ward to the progressive care unit due to tremors and rigid muscle tone. My once strong and extremely intelligent father quickly began having problems swallowing, had begun to lose his ability to communicate and, often, didn't know who I was. The disease has begun to progress more rapidly than we had expected.

Today, for the first time in all of my 42 years of life, I saw my father cry. For 22 years we barely saw each other and now that I have my father nearby, I am, unfortunately, alone in caring for him. My brother and sister are still in Florida, both have small children and demanding jobs that won't allow them to come to Pa. I have a 17-year-old severely handicapped child with cerebral palsy that I care for fulltime, I am attending college as a full-time student, and now have taken on the responsibility of becoming my fathers power of attorney. I'm used to juggling many tasks, and even all of these responsibilities are not as overwhelming as the pain in my heart each time I see my father cry out in pure frustration and anger, knowing there's no way I can help him.

This disease is PURE EVIL and as I sit by my father's hospital bed and watch this monster slowly kill my father and take over his mind and body, all I can think is " How have I never heard of a disease this horrible, that effects so many?" Looking back now I can pinpoint many of my father's symptoms that, by themselves, weren't enough to set for any serious alarms. Perhaps this disease should be brought into the limelight so others can be more informed. But that's not enough….we need more research to find out why this happens to our loved ones and of course more research into how to stop it. I know this wont happen in time to save my Daddy but I hope it happens in time to save some other little girl from having to watch her hero become a prisoner of LBD.

Kimberly Miller

Apr 08, 2018