Just as the picture says, that has been my life lately. Honestly, it's been that way most of my life. I have such a good memory that I can purposely find a scent or touch something and be transported back to another time and another place, just like that. For someone with an excellent memory, like me, it's hard to understand those who can't remember something as simple as what they had for breakfast.
Feelings...I've never been good with feelings or emotions. I'm great with anger. I was raised in it. As for sadness, I would much rather pretend that things are okay instead of crying openly in front of others. As for emotions, I can't even display them properly. As a matter of fact, to avoid my feelings, I will hide behind humor and wisdom. (The humor part is more fun.) The only way I can truly display my emotions is through writing. So here I am? Are you ready for this display? Because here it comes.
My father-in-law, John, has Lewy Body Dementia. Have you ever heard of that? I read about it in the book, "Making Rounds With Oscar," written by Dr. David Dosa who was featured in the New England Journal of Medicine. He is a gerontologist, a doctor who specializes in the care and treatment of diseases of the elderly. Dr. Dosa writes about his experiences as a doctor and some of his patients who have dementia, (One lady he spoke of only had arthritis, and her memory was amazing!) and his experiences with Oscar, a male cat who would sit with dying patients. He was the cat that would "predict" their deaths. He would stay in the room with the patient until after their body was removed. The book is also a collection of stories and memories from the families of patients who have had experiences with Oscar, but it's so much more than that. For example, one couple's story was so amazing. I sobbed as I read about Frank and Ruth Reubenstein and how they met in a concentration camp, and how they were separated, how they promised to meet in a church somewhere if both of them made it out alive, and they did. They married, had many wonderful years together, and then Ruth got dementia. It was so difficult for Frank that he couldn't visit her anymore and he died of a heart attack. Or the two sisters who spoke of their father calling in the middle of the night, asking who the strange woman sleeping next to him in bed was. I had no idea that this book was preparing me, teaching me how to deal with dementia. If you have a loved one who is going through dementia, it's a good read.
Allow me to tell you my father-in-law's story. John Newton Townsend was born on May 17th, 1943 to Harley Vance and Mable Varner Townsend in Barboursville, West Virginia. He is the first born child and has a younger brother, Todd V. Townsend and sister-in-law, Nancie Townsend of Fremont, California. His father, Harley was born September 15th, 1900, and his mother, Mable was born September 15th, 1906. Both Mable and Harley were school teachers and Harley served as the mayor of Barboursville for a while. John attended Barboursville schools and graduated from Barboursville High School circa 1963 or 64. He became a small engine mechanic. John met his wife, my mother-in-law, Ruth Ann Sommerville, because the families were close friends. Ruth Ann's dad (born in April 1896, I was never told the day of his birth) was a school teacher. Ruth Ann's car broke down, so John took her to school. That's how they got connected. They married on July 7th of 1967 and had one son, Douglas B. Townsend, nine years (and approx. 50 weeks, 357 days) later on June 27th, 1977. I guess you could say he was an early 10th Wedding Anniversary gift. After a stint of three years in Cincinnati, Ohio, where they managed several properties, (Doug was born just outside of Cincinnati) they returned to Barboursville, WV, where their parents lived, where they raised their son and where they currently live now...sort of.
My father-in-law's display of dementia symptoms began on April 4th, 2009 on Easter Sunday. (Looking back, there were minor symptoms before that.) My family and I went to Golden Corral to eat together on Easter Sunday. My friends, Shelly#2, Crystal, and her fiance, Amos joined us that Sunday. Doug prayed before we went to fill our plates, and Ruth Ann, who is notoriously last minute with birthday cards and gifts, brought me a birthday card that she had to sign, and told me not to look. She read it and signed it and handed it to John. I watched him read it (I couldn't see the front of the card), sign it, and hand it back to Ruth Ann. He looked at her and said, "Whose birthday is it?" When I looked at the card, it had DAUGHTER-IN-LAW on the front, written in large enough letters that even a person with pop bottle lenses in their glasses could see it. I waited for hominem for laugh. When I realized he wasn't joking, I turned away and started to cry. Shelly#2 was eating. She was about to faint from needing food. Amos was eating. (That man loves to eat.) But Crystal saw me. When I got up to get a bit more food, she went with me. She said, "Shellye, what is going on? Is John okay?" I told her that I wasn't sure he was or not.
During this time, I was reading the book I mentioned, "Making Rounds With Oscar." I got to the part where a family member was describing Lewy Body Dementia. Dr. Dosa took a moment and explained Lewy Body Dementia. For those of you who haven't heard of it, allow me to share a little about it.
Dementia with Lewy bodies is characterized by abnormal deposits of a protein called alpha-synuclein that form inside the brain’s nerve cells.
These deposits are called “Lewy bodies” after the scientist who first described them. Lewy bodies have been found in several brain disorders, including dementia with Lewy bodies, Parkinson’s disease and some cases of Alzheimer’s.
Symptoms of dementia with Lewy bodies
- Memory problems, poor judgment, confusion and other cognitive symptoms that overlap with Alzheimer’s disease.
- Excessive daytime drowsiness.
- Visual hallucinations.
- Cognitive symptoms and level of alertness may get better or worse (fluctuate) during the day or from one day to another.
- Movement symptoms, including stiffness, shuffling walk, shakiness, lack of facial expression, and problems with balance and falls.
- In about 50 percent of cases, dementia with Lewy bodies is associated with a condition called rapid eye movement (REM) sleep disorder.
- REM sleep is the stage where people usually dream.
- During normal REM sleep, body movement is suppressed and people do not “act out” their experiences while dreaming.
- In REM sleep disorder, movement is not blocked and people act out their dreams, sometimes vividly and violently
Treatment of dementia with Lewy bodies
- There are no drugs currently approved by the U.S. Food and Drug Administration (FDA) specifically to treat dementia with Lewy bodies.
- Some experts believe this condition may have the best response of any dementia to Alzheimer's drugs called cholinesterase inhibitors.
- If the movement symptoms are severe, medications used in Parkinson’s disease may be considered.
- Antipsychotic drugs should not be used in Lewy body dementia.
- Individuals with Lewy body dementia are extremely sensitive to these drugs, which are sometimes used to treat hallucinations or behavioral symptoms of dementia.
More information
- National Institutes of Neurological Disorders and Stroke
Dementia with Lewy Bodies Information Page
Information from one of the National Institutes of Health (NIH).
- Mayo Clinic - Lewy body dementia
Information from Mayo Clinic’s consumer health information Web site. - Lewy Body Dementia Association, Inc. A nonprofit organization providing information and assistance to individuals with the disease, caregivers and medical professionals.
Here is a more in depth explanation of symptoms and facts about the disease:
Facts
Dementia with Lewy Body (DLB) is also called "Lewy Body Dementia" (LBD), "Diffuse Lewy Body Disease", "Lewy Body Disease", "Cortical Lewy Body Disease", "Lewy Body Variant of Alzheimer's Disease" or "Parkinson's Disease Dementia." It is the second most common dementia, accounting for 20% of those with dementia (Alzheimer's Disease is first). Dementia is a gradual, progressive decline in mental ability (cognition) that affects memory, thinking processes, behavior and physical activity. In addition to these mental symptoms, persons with DLB experience physical symptoms of parkinsonism, including mild tremor, muscle stiffness and movement problems. Strong visual hallucinations also occur.DLB is named after smooth round protein lumps (alpha-synuclein) called Lewy bodies, that are found in the nerve cells of the affected parts of the brain. These "abnormal protein structures" were first described in 1912 by Frederich Heinrich Lewy, M.D., a contemporary of Alois Alzheimer who first identified the more common form of dementia that bears his name.
Lewy bodies are found throughout the outer layer of the brain (the cerebral cortex) and deep inside the midbrain and brainstem. They are often found in those diagnosed with Alzheimer's, Parkinson's, Down syndrome and other disorders.
The cause of DLB is unknown and no specific risk factors are identified. Cases have appeared among families but there does not seem to be a strong tendency for inheriting the disease. Genetic research may reveal more information about causes and risk in the future. It usually occurs in older adults between 50-85 years old and slightly more men than women have the disease.
Symptoms
Initial symptoms of DLB usually are similar to those of Alzheimer's or Vascular Dementia and are cognitive in nature, such as acute confusion, loss of memory, and poor judgment. Other patients may first show the neuromuscular symptoms of parkinsonism—loss of spontaneous movement, rigidity (muscles feel stiff and resist movement), and shuffling gait, while still others may have visual hallucinations as the first symptom. Patients may also suffer from delusions or depression.Key symptoms are:
- Problems with recent memory such as forgetting recent events.
- Brief episodes of unexplained confusion and other behavioral or cognitive problems. The individual may become disoriented to the time or location where he or she is, have trouble with speech, have difficulty finding words or following a conversation, experience visuospatial difficulty (for example, finding one's way), and have problems in thinking such as inattention, mental inflexibility, indecisiveness, lack of judgment, lack of initiative and loss of insight.
- Fluctuation in the occurrence of cognitive symptoms from moment to moment, hour to hour, day to day or week to week. For example, the person may converse normally one day and be mute and unable to speak the next day. There are also fluctuations in attention, alertness and wakefulness.
- Well defined, vivid, recurrent visual hallucinations. These hallucinations are well formed and detailed. In DLB's early stage, the person may even acknowledge and describe the hallucinations. They are generally benign and patients are not scared by them. Hallucinations may also be auditory (hearing sounds), olfactory (smelling or tasting something) or tactile (feeling or touching something that is not there).
- Movement problems of parkinsonism, sometimes referred to as "extrapyramidal" signs. These symptoms often seem to start spontaneously and may include flexed posture, shuffling gait, muscle jerks or twitches, reduced arm swing, loss of dexterity, limb stiffness, a tendency to fall, balance problems, bradykinesia (slowness of movement), tremor, shakiness, and lack of facial expression.
- Rapid Eye Movement Sleep Behavior Disorder. This is characterized by vivid dreaming, talking in one's sleep, and excessive movement while asleep, including occasionally hitting a bed partner. The result may be excessive daytime drowsiness and this symptom may appear years before DLB is diagnosed. About 50% of patients have this symptom.
My father-in-law has had noticeable symptoms since atleast 2008. Excessive daytime drowsiness, movement symptoms such as falling and his hands shaking. I shrugged off news of John's constant falling because my in-laws are hoarders, like on the television show, and there are newspapers and boxes everywhere. I assumed that he slid on newspapers. But Ruth Ann and I would hang out everyday and she would say something atleast five times a week like, "John fell today," or "I fell today." And I always assumed it was from the mess. John was even tested for Parkinsons several years ago (circa 2006/2007) and I have never heard about the results of that test. And in 2008, Ruth Ann asked Doug and I to pray for John because he was seeing "faces on the highway" which concerned us.
On Tuesday, November 10th of 2009, John had a cyst removed from his knee. He was in the hospital overnight. On Friday, May 14th, 2010, John had another surgery on his knee. He had spinal anesthetic, and he was happy and ready to eat after surgery. He chatted away as he munched crackers and begged for more food. He was in the hospital from that day to May 29th, on a Saturday. Ruth Ann was still working at the time, and I remember the week of Monday, May 17th, he called one night, freaking out, nearly in tears asking where Ruth Ann was. I looked at the clock and said, "John, it's only eleven-thirty." He said, "I could have swore the clock said it was after midnight." (She got off work at midnight.) "Okay. Thank you. Love you. Bye." Then he hung up. I reported this to Doug and to Ruth Ann who said that the clock in his room was fast. I asked how fast. She said five to seven minutes. So at eleven-thirty p.m. his clock read 11:35 to 11:37 p.m. not 12:00 a.m. or something after.
Doug and I had been in Louisville, KY visiting the newlyweds, Crystal and Amos. We went up for their wedding in March/April 2010 and then again in June of 2010. While we were in Louisville, Ruth Ann called and informed us that John was back in the hospital for nausea and abdominal pain on June 24th on a Thursday . They were going to release him on Friday, June 25th, but Ruth Ann begged them to look more into his complaints, and they found an obstructed bowel. Things are a blur from there. He was in the hospital and had atleast two more surgeries, one for a twisted bowel, and another for intestinal problems. During this time (prior to receiving anesthesia) he was confused and had no idea where he was or what was going on. Doug would have to go watch him so his mother could go to work or go home and get things. (Ruth Ann had to quit her job to become his full time caregiver.) While we were there, he didn't know who we were, he kept thinking he was at work, he kept having hallucinations, he slept 90% of the time. Doctors kept saying it was the anesthetic. I wasn't buying that. He was in the hospital for almost two months. Finally, he was taken to H--------- Health and Rehab, where he was still confused, but in a better mood. He would hold part of a conversation before drifting off to sleep. He remembered Shelly#2's cat Biz and our cats. Then in late August, he was taken to Chateau Grove in Barboursville to get rehabilitated, and every single day there, he walked with the use of a walker to the dining hall for breakfast, lunch and dinner. He didn't have very many days of confusion there, but again, that's how Lewy Body Dementia works. The person is perfectly fine for several days, weeks, maybe even months, then they return to their state of confusion and fear.
In November, circa the 30th of 2010, John was sent back home to live. The house was still in the same condition as it had always been, except the outside was cleaned and painted. The physical therapist was coming in, but they refused to come back until the house was cleaned up. In December, the 22nd or 23rd, John was hospitalized again for a stomach virus.
In May/June of this year, a person who was helping John and Ruth Ann get to doctor appointments abused John through carelessness and being rough when he was helping him in and out of the car and in and out of their house. He complained about the mess, he complained about Ruth Ann, saying she was neglecting her own husband, then he reported her to Adult Protective Services. (If I ever see that man who abused my fnl out in public, I will abuse him!) Several people called Doug from APS asking a bunch of personal questions. I was certain that John would become a ward of the state of West Virginia, but for some odd reason, the case was dropped, even after the social worker seen the state of the house. I'm glad for some many reasons that it was dropped, but I'm also shocked!
On July 21st of this year, John was rushed back to the hospital for muscle degeneration. Dr. Ferguson recognized the symptoms of dementia, and ordered an MRI. They got one clear picture that showed more atrophy than normal for a man who is in his 68th year. Dr. Ferguson said he had Lewy Body Dementia, which is what I've been saying for the last two years! Then, the hospital shipped him off to Heartland of Riverview and away from Dr. Ferguson, who can maybe help him, although I'm not sure John would benefit from help this late in the game. My mother-in-law is in denial. She still thinks it's a permanent issue from the anesthesia from the surgeries he had over a year ago now. We could tell her all day that he has dementia, but she's still hanging on for dear life to her fantasy. She doesn't want to lose her husband. She still believes in the power of prayer and that God still heals today. Don't get me wrong, there is power in prayer and God can heal and still heals today, but until God intervenes, we have to look at and deal with the now situation. That's good advice that I need to live by as well, but I have OCD and I'm afraid of getting fat, but that's another story for another time.
This was him at H--------- Health and Rehab in late July/early August of 2010:
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