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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, January - June 2011 (3 stories)

Story 1. Received: January 5, 2011

My father has recently been diagnosed with Lewy Body Dementia. I wonder when it really all began. My mother died in November of 2009. I remember her telling me about my father's vivid dreams where he would jump out of bed and run into furniture, sometimes knocking over things and hitting his head. I just don't remember what year it was that she told me this. I remember her telling me that he was falling down too often for no apparent reason. I remember her telling me that my dad insisted that every one of their calculators didn't work. I remember my father saying that he couldn't seem to get his check book to balance anymore. I remember my mother expressing fear about his driving... that he would run into the curb. He drove the car into the back of the garage and did significant damage to the room on the other side and to the car. When I would visit my parents in Ohio from my Virginia home, I would notice that my father would sleep excessively. He would just be at his desk and his head would just drop to the desk and he would stay there like that for a long time. His feet did seem to drag or make a noise on the floor — shuffling I guess. I thought this was normal for his age. I was so involved in taking care of my mother suffering from Ovarian Cancer that I couldn't concentrate too much on dad. Sometimes when he would wake up he would say strange things but he would come around and be normal when awake. Sometimes his words would be slurred. I had bought him a new computer but he just couldn't remember how to use it. He would often sit in front of it and fall asleep, knocking the keyboard on the floor repeatedly. I did call his doctor once about these symptoms and was told to take him to the emergency room for a possible stroke and he would not go. It was spring of 2008 when my mother was diagnosed and I spent time there and noticed these things.

One month after my mother died, I received a call from their home town police department. Dad had run into several mailboxes on his street and they had interviewed him. He didn't seem so dysfunctional that they needed to take him to the hospital but they were starting paperwork to take his license away. Later that same day, I got a call from his doctor. Dad had went there not feeling well and they had him transported to the hospital. The hospital called to say that he was dehydrated to the point of acute kidney failure and near hypothermia. He was diagnosed with dementia. He was pulling out his IVs and they had to have a nurse with him constantly. After three days, he was transported to a local nursing home. When I visited him at the nursing home, sometimes he would be his normal self and other times he was asleep/drooling and I was unable to wake him up. He fell several times while there. The nursing home staff indicated he would need 24 hour care and if I took him home, I would never be able to leave him alone. I needed to get him near to me in Virginia. He had never wanted to move but with the prospect of having to stay in the nursing home there, he agreed.

I figured I would give home care a try. I took him off of all the medications that the nursing home doctor had put him on. My theory was, he wasn't demented, and he was just over-medicated. I had noticed when my father moved in with us that sometimes when I tried to wake him up, his arms were incredibly stiff. I couldn't even move them. I also noticed that when he walked, he would often just look straight ahead, sometimes almost tripping over something that was right in front of him. The first week or two (February of 2010) was difficult. He fell several times. Once I found him naked in the bathroom, with a Depends totally shredded into hundreds of pieces and he was telling my "mother" that she needed to leave the bathroom. He seemed to get much better over time and I found that I could leave him alone. He still slept a lot but I thought that must just be normal for him. Things went well until early March, when he began sleeping even more and in the middle of the night he would get up to use the bathroom and was confused as to where it was, urinating in the coat closet or on a chair in another room. I took him to the doctor who put him in the hospital for tests on change in mental condition. They ran a lot of tests and weren't finding anything. Unfortunately he fell in the hospital and severely injured his eye. He had eye surgery and everything then centered on that operation and healing from that. He was in the hospital for three weeks. He experienced hallucinations and was again diagnosed with dementia. He refused to eat. He was eventually released to a nursing home for rehab and then released to home under hospice for dementia and failure to thrive. He came home again and made an amazing recovery. He required another eye surgery to save the eye not the vision but to save the eyeball. He had some urinary problems and constipation and dental problems. It seemed like there were a million doctor visits but cognition seemed normal.

However, in November 2010, things went downhill again and fast. My father has Obsessive Compulsive Disorder and has all kinds of rituals. He washes his hands often. They became very dry and many open sores occurred. I seem to time his downhill behavior with this problem. He started by not being able to find the bathroom, falling down frequently, not being able to dress himself. Each day he got worse, just when you thought it couldn't get worse. He wouldn't figure out how to flush the toilet. Somehow he overflowed the toilet and it leaked into the basement. Then he thought he overflowed it when he didn't. Then he saw water coming from the ceiling, water on the floor. His dead brother Mike was in the room. Basketball players were in the room. In the middle of the night I awoke to a pounding noise. He couldn't get the toilet paper off the roll and he was banging it against the wall. He told me the toilet was fake. Another night, there were turtles in the trash can and he wouldn't go to sleep until I pretended to take them outside. There were cats running through the house and bugs on the floor. In the middle of the night, he locked himself in the bathroom and couldn't figure out how to unlock the door. He would leave the water running in the sink. He couldn't figure out how to get the shower door open and he was banging things on the wall to try to do it. He went from sleeping all of the time to not sleeping at all. It was three weeks of nightmare for me, his only child.

He couldn't feed himself. He couldn't get the spoon from plate to mouth. He couldn't find words when he tried to speak. I took him to the Neurologist that had seen him in the hospital. At that point, she diagnosed Lewy Body Dementia with Parkinsonism. She gave us a prescription for Exelon. At this point, I decided that I could no longer take care of dad at home. I started looking for a nursing home with a dementia unit. I did a bit of internet research on Exelon and decided that I would not give this to him at home. I did not want to deal with any bad reactions. It could wait until he was in the nursing home. Then I came across a medical list from the nursing home that he had been in before in Ohio and I saw that they had given him Exelon there for a month and discontinued it. I didn't think he needed to try it again. I did find a nursing home and moved him there on 11/29/10. For about one week after he moved in, he was in the same condition, hallucinating and falling down, not able to feed himself and not interested in eating. Then he seemed to get much better. He still had a few hallucinations. He saw four men who wanted to rape him but he talked them out of it. He saw trains going through the nursing home but for the most part he has been back to his normal self. He is extremely unhappy being there and each visit he will only talk about leaving, how he cannot believe that I have done this to him. He cannot believe it when I tell him the things he has done. I have such terrible guilt. He goes on and on about how he can get a little apartment and live by himself where he can walk to a store... or get a motorcycle or bike. I've given up telling him that this can never be. I just let him talk about it now. That goes well until it is time for me to leave. Then he wants to know where we stand and when he can leave.

I really am beside myself with guilt but I know he cannot live alone and I know that I will never take the responsibility of caring for him again in my home. I admire all of you who do this but I can never live through another period like those three weeks in November. I perceive that my dad has had three bad "episodes" in the past year and I see this trend continuing. I can't even face the responsibility of having him try to live in an assisted living facility because I know that would only be a short term solution and I am not willing to go through the process again of finding a dementia unit with an opening.

I had a very loving relationship with my mother but more of a "non-relationship" with my father. It wasn't a bad relationship, there just wasn't one. I don't have a "love" connection... just a feeling of responsibility for his welfare. Yet, I still feel this overwhelming guilt because of how unhappy he is at the nursing home. He perceives himself as younger than everyone else there and in better shape. Dad is 83. I perceive some residents at the same level as him and some others as worse. I am hoping that he will stop resisting and accept his disease and his circumstances. At this point, he doesn't believe anything is really wrong with him. I am still committed to visiting him but I do dread it every time I have to go. I know it is still early. He has only been there about 5 weeks. We are both still adjusting. He has called me from there several times to complain however. I do have trouble sleeping on evenings when he calls. I think about him and his unhappiness almost constantly at times. Sometimes I have guilt even thinking of myself, because he has lost so much over the last year. His wife, his home, his independence, his health. I see the despair that others have on this site. It has been comforting to know we are not the only ones going through this.

I am so glad that my poor mother didn't have to see the worst of this. I do realize though that she knew my dad had problems and I'm sure it was difficult for her to deal with while she was so ill. She never let on to me how bad it must have been. She had horrendous surgery in 2008 and was in the hospital for three weeks. Not once did my father visit her. She would tell me that sometimes she felt like she was living alone because my father was either sleeping or out shopping. (Constant shopping and buying things was part of dad's obsessive compulsive behavior. If he found something for fifty cents, he would buy 20 of them because it was such a great bargain and then put it in the basement in a bag and never look at it again.) He continued on with this while she was home alone and ill. She was transferred to a hospice facility four days before her death and he did not come there either. Sometimes I have such resentment towards him for that but then I feel it might have been part of his disease. It has been a tough 2.5 years dealing with my parents' health issues and I feel like I've reached the end of being able to cope with it. I am ready for the nursing home staff to take over.

Story 2. Received: May 23, 2011

Well, I just finished reading your journal on your mother and was blown away. It seems to mirror my dad almost identically. Although, my dad is going at such a rapid pace it's not even funny. He was diagnosed with Lewy Body about a month ago. We have already gone through the "you are not my wife" thing with my mother and the "I want to go home" thing.

Last weekend, he kept falling. See, dad had a stroke in 2000. He is paralyzed in his left side. So, he already has trouble walking. Now, he is falling constantly. My mother is handicapped so lifting him up was not an option. He ended up being one big bruise. She finally had to call the ambulance. He ended up in the hospital. Come to find out one of the medications that was prescribed to him was lethal. So, he was in the hospital for a week being detoxed. The sad thing is, mom told the hospital that he had dementia but they didn't understand. They had him down as a patient who was being observed. They wanted to send him to a mental institution. I put a stop to that. We had decided to send him to a home that specializes in patients with dementia. It's right down the street from our home and it is Christian based. See dad is a preacher. He has a doctorate in ministry. He was a COL in the army. It has been HELL watching this brilliant man go... so fast. It's like he was there one day and gone the next. A lot faster than your mother. We fought hard with the hospital, but we got him transferred to the home that specializes in dementia patients.

I am sad. I am heartbroken. I am so surprised at how taboo this sickness is. I can't believe it. It amazes me how little is written about it. Thanks for your journal. Thanks for all of the information you have provided. I really appreciate it. I see your love for your mom. I love my daddy. I miss him. I will go see the shell of him until he dies... as much as I can, which will be about everyday... Thanks again...


Story 3. Received: June 14, 2011

My Dad's journey with Lewy Body Dementia:

Two and a half years ago my Dad went in for sinus surgery where he was under anesthesia for three hours. The surgery went well, but my Dad wasn't the same after that surgery. Balancing his checkbook took over an hour. He couldn't understand how something that was once so simple could now be so challenging for him. He'd also get confused while driving familiar routes. When I look back to this time I remember how hard just these minor memory issues were to accept. Hard for him to accept and hard for myself wondering what was the cause and often wondering if that surgery had caused these lapses in his memory.

The following two years his memory didn't get any worse until September 30, 2010. He woke up and didn't know who my Mom was — the person he had been married to for 39 years he had no recollection of. He could remember that he had two children, and that I was one of them, but couldn't remember raising us, even asking my brother if he had been a good Dad to us growing up. He started to believe there were people in the house other than him and my Mom and started to get really paranoid. A call was put in to his primary doctor who took him off the tranquilizers he had been put on a couple of weeks earlier to help him sleep at night. The doctor thought it could take a week for the drug to get out of his system so it may take a short bit for his memory to come back given my Dad's age of 74.

After that week and his memory not coming back he was put on Aricept and told it was likely Alzheimer's, but referred him for a CT scan of his brain to see if he maybe had a stroke. During the CT scan they found he had not had a stroke. Also, during the CT scan my Dad mentioned he has an abdominal aortic aneurysm that he hasn't had checked out in 10 years. He was told to make another appointment to have that checked out. The following day during that appointment he was given 60 days at the most to live if he didn't have the 9.5 cm aneurysm taken care of. My Dad's memory issues were put aside and now the focus turned to repairing the aneurysm. He was hospitalized that day and had successful surgery four days later. During that surgery he was again put on anesthesia for the six hour surgery and was given drugs in the following days that changed who he was. In the week following his surgery there were days in the hospital he'd be grabbing things out of the air that were not there, he couldn't use utensils to put food in his mouth, days he wouldn't open his eyes and he'd look at his grandchildren, which were once a highlight in his life, as if he had never seen or met them before.

About 3 1/2 weeks after the aneurysm surgery and recovery from a heart attack, that happened 10 days after the aneurysm surgery, he had to be placed in transitional care but we had a tough time finding a place that would take him. He lost the strength to walk and couldn't remember that he didn't have the strength so he would often try and get up from bed. Since he was a fall risk he needed 24/7 care. We finally found a place to take him which turned out to be a really good fit. It was a smaller hospital that specializes in medically complex patients whose illnesses or injuries have long-term effects. Prior to being admitted the doctor that works at this hospital in the dementia wing met with my Dad, talked to my Mom over the phone while going over my Dad's records and thought that my Dad had Lewy Body Dementia. The first we had ever heard of this type of dementia, but after reading up on the disease so many of the symptoms really fit my Dad — the falls, the gait walk, drooling, vivid dreams, restless sleep, the blank look in his eyes and of course the confusion. This doctor immediately changed the medication my Dad had been on in the hospital — medication that was affecting his memory — and was put on a higher dose of Aricept and Namenda, to name a couple. After three weeks in this new hospital he certainly made great strides. He now knew who his wife was, wasn't having hallucinations, knew and talked about stuff that brought him great joy and though he wasn't 100% he certainly was a lot better than he was when he first entered the first hospital 7 weeks earlier. We finally had my Dad back and he was finally able to come home, something that I doubted many times that he'd be healthy and strong enough to the point my Mom would be able to take care of him.

It took some time for my Dad to get used to the idea that he would never drive again and that he could never be left alone. He's well aware what disease he has, but has yet to ask too many questions about it so he is unaware of what will most likely happen to him in the years to come. He's been home for six months now. Probably the first 5 months I didn't notice any changes with regards to his memory getting worse and actually there were times I would forget he has the disease. I cherish these times. The past month I've noticed small changes as he seems more tired and disinterested in things, but for the most part is still doing well. I try not to think too much about what the future holds for him as this is the most difficult thing I've ever had to deal with and quite frankly I'm scared of the future. Scared for my Mom who is his primary caregiver. It's certainly not the life she ever envisioned but accepts it and is getting used to her new reality.

Thank you for sharing your stories and thank you for letting me share mine.

Stories, July 2011 - March 2012
Stories, August - October 2010
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