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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, August - November 2007 (9 stories)

Story 1. Received: August 3, 2007

I found this site just recently and was so relieved to find that there was an appropriate place to share the profound sadness I am experiencing of slowly losing my Dad to LBD. I hope it helps others struggling with the intense and prolonged emotions involved in helping your parent or loved one through this.

My father is 73 and in the final stage of LBD, combined with Parkinson's. Like so many other stories here I read, it is a long journey to a diagnosis, with many signs pointing to a disorder years before anyone accepts that something is wrong.

It's been over 7 years now since we started noticing major problems. In the beginning, it was easy to overlook the small forgetful things. The thing I first could not dismiss was that he was not able to add the tax on a restaurant bill. He must have known something was wrong much earlier but he was never much of a complainer.

Then, the incredible variability in his cognition. There were days that we could share a story and a laugh, his eyes would sparkle with rich memories of family times or mischief that only his kids could bestow on a dad. Then, more frequently, he'd pause, and search for a word, or forget the thread entirely. He was so brave, he would usually say, "Oh well, I forgot what I was saying" and begin a new conversation.

I remember the exact moment it occurred to me that my son and father were at the same developmental stage, capable of many things, but in need of constant supervision. That day, I watched my Dad struggle to do up his pants after visiting the washroom. I remember joking with him that at least he didn't try and run away while I helped him. We shared a laugh, but I knew that the silence that followed allowed us both momentarily to contemplate about another lost self-management skill.

With each visit, updates on what was happening to him, and how he was feeling. It was very scary for all of us to watch him experience the panic with confusion and deal with the frustration of "word salad". Sometimes he was articulate enough to say that he just couldn't find the right word, or he would substitute inappropriate words instead.

Then he got lost walking in his neighbourhood. I was with him on one of these walks to his favorite local stores to buy "treats" when he suddenly stopped a person on the street and almost chuckling as he said, "I live in this neighbourhood but I can't find my street. Can you help me?" My dad looked so cheerful & normal, the gentleman thought we were playing a prank. I offered that I didn't know the neighbourhood and could he point us in the right direction, and we were on our way.

So on it went. Stickers on light switches and doors. Reminder notes. His signature on the bottom of birthday and holiday cards became more and more illegible. The last one in 2005 had a childlike printed D A D that crossed through the line marked for him to write on.

But still, the conversations were often very good and there were days that I thought there was nothing wrong with him at all. When you got him talking about work and career, he could talk a blue streak without error or hesitation. Questions about recent events, however, were more and more often met with hesitation or silence.

He admitted there were days he was plain sick of thinking and talking about it. We made a deal that I would say "how are you?" and he could choose to say "fine thanks how are you" or tell me the updates about his condition. It worked well.

With each stage of decline, there is acceptance that this is the new reality. I adjust, adapt, and try my best to find pleasure in the shrinking world of my dad, his mind and body consumed with LBD. I often drove home in private tears, marveling at his bravery of how he could get up and face each day knowing where things were heading. He absolutely never showed any signs of giving up the fight. I am not so sure I could be that strong.

A year ago he fell outside his house and was hospitalized with a hip fracture. The decline was dramatic.

The drug interactions and hallucinations, the unfamiliarity of the hospital, the noise and confusion for him was unbearable to witness. I was shocked into tears to see the folds of skin hanging from his backside from the weight loss.

I learned to feed him, to shave him and trim his nails. I had to confront a very upsetting task which was traumatic for a daughter, helping him use a urinal. I was not prepared for the emotional reaction I had, doing this for him. It made me feel so uncomfortable — like a taboo of sorts. But I did it, for him.

I watched him struggle with pills and liquids, and more frequent toileting issues. I sat in the hot hospital room and continued our tradition of our father/daughter "dinner dates" the best I could. I spent more and more time talking to him than with him. He made happy noises while eating his favorite foods. In the entire time I have known him, I have never seen him miss a meal. His appetite goes on — and still does, even as so many other self-care tasks have failed him.

But still sometimes he was able to break through the mud in his mind and say powerful phrases or small sentences like "aren't you getting tired of this?". One of the last clear words I heard was "you're beautiful". He doesn't open his eyes much any more.

It was exactly a year ago since the last time I sat at his dining room table to share a meal. And each time I leave now I wonder if there will be another visit, and almost hope that there won't be. It is so hard to see him in this condition, waiting to die. There has been no glimmer of awareness or connection with him in weeks.

We were told to start preparing for his funeral in February, but he is still soldiering on. I am now wondering just how long he could go on like this in limbo.

He is well cared for and comfortable at home. But I am also very troubled with visiting him now, and I feel so guilty about that truth. I am at peace with the time that I spent with him in the last years and especially the last months, I have told him how much I love him and that I will be lucky if I can pass on his great parenting skills to my son. I remember the day that I suddenly couldn't think of anything I wanted to say to him, and probably because I don't think he is aware of me anymore. I struggle with the need to focus on my future and my family and my life. I am sure he would not want me to sit by his bedside and wait. People who know me know how devastated I am with the illness of my father. They also know that his gifts continue in his kids, as we all try and set the example my father set for us, for our children. His grandchildren.

The things that made my father unique and wonderful live on in the memories of his friends and family. We still laugh about his sayings, his fondness for food, his ability to have a nap anywhere, anytime, his wide reach of friends that have made a steady stream of visits to his home.

His signature style was humor, kindness, compassion, fairness, self-motivation and an ever positive attitude. Generous with his time, and advice, he always seemed to help people find the answers to their life and career questions, by listening. He asked questions that were sometime blunt but always honest.

My emotional journey of saying goodbye to a wonderful father has been full of tears, laughter, dread and satisfaction. I am happy that I was fortunate to have an incredible friendship with my Dad, I am told often how unusually special it was. The flip side is the total devastation of watching him whither away into a shadow of his former self. I struggle with the guilt of wishing something would take him away today, as I don't think he would like to live on like this, totally incapacitated. And even as I write this, I don't know where to use the past or present. He is still here, but he is not.

Though I know it is easier to push the sadness & anxiety away with the business of day-to-day life, I am deliberately feeling the pain as it happens. I think that I am trying to handle his dying like he has, facing it head on. Brave and honest, no complaining.

Just like Dad.

Story 2. Received: August 18, 2007


I start my story around five years ago. We had a happy family, until I found out my dad has LBD. He was so smart. I thought he would be here forever. I miss him so much now. I hate LBD — it is so mean. I often feel like my dad is in the water and is going up and down and I can't do anything to help him. I feel like I am so helpless. Over the last five years I have watched my dad roll down this huge hill, wanting to stop him but can only stand by his side and do everything I can to help him roll to the bottom softly.

It's been a really long five years and a really short five years. I hope you can understand what I am trying to explain to you. I cherish every moment I have gotten to spend with him. We have had some great times in the last five years — we have laughed a lot and we have cried a lot. I feel so sorry for the husbands and wives of these wonderful people, the people who see them on an everyday basis. It has been so great to spend the time I have with my dad the last five years. I have told him almost every day that I LOVE HIM, and I have really tried hard to make every day special. And I still feel like I could have done more. I hate this monster called LBD.

My dad is in the bed and he can't eat or hardly open his eyes, but I know he can hear me, so I tell every day how much I love him. This has been a long hard road for my family. My dad is so brave he has only cried a few times. I wish I could just wake him up, but I can't. I know heaven is waiting and he will be in a better place but it is still so hard. I pray all the time for the LORD'S will to be done. I just already miss him. They only give him a matter of time now. I hope one day we can find a cure. We can only pray. Please keep us in your prayers, and I will keep you in mine.


Story 3. Received: August 19, 2007


Thank you so much for your site. My dad was diagnosed with lewy body dementia about 4 years ago. He was managing very well, going out each day on his own, walking and meeting up with friends at a Care Group for coffee and biscuits daily. He hurt his wrist, which we then discovered he had broken, and was taken into hospital. On discharge the next day he went home by ambulance to my step-mother, ate his supper that evening. She then found him on the floor in the bedroom unable to get up. She struggled to get him up for 6 hours, then called the emergency service. When I got to see him a couple of days later (I live on the other side of the country) he was bedridden, and unable to communicate. The consultant said once the infection in his wrist cleared he probably would be much better and almost back to how he was before.

That was 2 months ago and he has not recovered any faculties to date. He has to have pureed food and thickened liquids. When he is awake he is trying to talk but it is hard to hear or understand what he is saying. He is trying to get out of the bed the whole time, moving his legs and arms, but is unable to. He cries as he looks at me — I feel like he is wanting me to rescue him. On my last visit on Wednesday he suddenly said very clearly "I can hear you" — it was lovely to hear his voice again. He can do nothing for himself — it is so heartbreaking to see my dad going through this. I've been told by my nursing friends that he couldn't live too long like this — but I hear so many different stories, it's hard to know what to believe.

Yet I am a Christian, and I know my dad's times are in His hands. My dad also became a Christian a year ago and I pray God will give him peace and release from this prison of LBD.

We are in the process of trying to find dad a nursing home. His name is down for one but they have no bed at present, though he is top of the waiting list.

Thank you again for this invaluable site.


Story 4. Received: August 28, 2007

Today has been a most difficult day. I met with the neurologist this a.m. in reference to my mom. Back in 1998 she had a stroke that left her with aphasia. She then had another in 1999. Since then she has had many mini strokes. Several years ago she lived in a condo. Her friends began calling me at work saying she wouldn't get out of the car, was seeing things in trees, etc. After taking her to her regular MD, it was decided (after a year of this) that she should no longer live alone. She had a choice of going to an assisted living or get 24/7 care. She refused the 24/7 care and opted to go to an A.L. After only 6 months she was so unhappy and I was so displeased with the facility that my wonderful husband and I brought her to live with us. We only have a small 2-bedroom, one-bath house but were going to make do. She wanted more.

The next step: I took my inheritance (which wasn't mine anyway but belonged to her and my deceased dad) and built a mother-in-law quarters onto the back of our home. It is just off the living room so we can keep an eye on her. She still has to have care when we are not at home. Mom only has approximately $1500 monthly and my husband and I don't have any savings so getting and keeping a caregiver for $200 a week is extremely difficult. All the while her hallucinations have been getting worse and worse. She is extremely afraid of snakes and this spring started seeing them everywhere inside and outside of the house. Of course there are people in the trees, on the rooftops, horses and mules in the trees, etc. She has a little man with silver toes that sleeps on the end of her bed each night. At first she was afraid of him but I have convinced her that he is an angel there to protect her and so she seems better with that. She seems to have a lot of anger towards me and isn't afraid to vent it. We also take care of our 2.5 year old granddaughter in the evenings until her mom gets home from work and my mom seems to be jealous of her. To make a long story short, her hallucinations were getting much worse and she was getting terrified of them and I decided to make an appointment with a neurologist. He sent her for several tests but before she could finish getting them, she fell out the back door and broke her back. That was another difficult journey that we have been on this summer. She is now able to go and sit still for the EEG and we proceeded on to the Neuro.

He told me this a.m. that she has Lewy Body Disease. It was ironic because way back when she first began hallucinating, I researched and had diagnosed her with that myself. When he looked at me and said I had probably never heard of the disease I was shocked to know I had been correct. I immediately came back and began the research once again myself only to find the devasting news. I am so sorry you and all the others had to go through so much and am devasted to know that my future holds that as well.

Thank you so much for your journal. Although it was difficult to read, it gave me a glimpse of what was to come and to begin to prepare. If it is alright with you, I will bookmark your page and continue to seek your guidance and ask questions through the journey. Thank you once again.

JD, North Carolina

Story 5. Received: August 29, 2007

I would like to chronicle the odyssey I was on with my Dad with Lewy Body Disease. This website has been such a help. Reading the experiences of others and realizing we are not alone in this is very beneficial.

The first experience I had with my Dad that was frightening and out of the ordinary was in August of 2004, right after my daughter's wedding and before he faced aortic aneurysm surgery. He was 75 at that time. The aneurysm had been monitored for about 3 years (found after he had his gall bladder out), and it was now the size for surgery as it had grown. Just before the surgery, my Dad came to my house with a story about a funeral policy that he had taken out for my brother (who is on disability and living with my parents). While he did take out the policy, he suspected that there was fraud, that he was being spied on by a neighbor he thought was a detective, that people were opening his car trunk where he kept the document at the time and that I was also being spied on and not safe. He was losing weight and not eating. This all snowballed into him having their home on lockdown, drapes shut, wanting my mom and brother under the table, hunting pellet rifle ready. Before it got to that point, I took both Dad and the policy to my daughter's father-in-law who is an attorney, in order to look it over. It was determined to be above-board and valid. I let my Dad know it was fine and not to worry. When my Dad locked the house down — even getting some plastic bags and duct tape handy — I called his doctor in panic and took him to the emergency room. It was determined he was a cautious man under too much stress and I got him an appointment to see a geriatric psychiatrist. It was then determined that he suffered an "episode of unknown origin" and he was given a prescription for Risperdol. This seemed to help. He had his surgery and hallucinated for 2 days while in the hospital. He thought he was at a party, he took off his electrodes and went down the hall to go home, he was just not himself while in the hospital. I believe it to be a type of delirium. My Dad has always been a very stable, although sensitive, man with a wonderful sense of humor and very kind — an amazing person whom I love very much. This was all out of the ordinary.

We got through the surgery and things seemed to coast, although we did notice changes in him. He had let the checkbook go and could not figure out how to balance it any longer. He would bring me more papers to read involving things for my brother and the family. He was struggling more, but I put it down to aging, etc. His back was bothering him and he was starting to walk so much slower. He got someone to mow his lawn and do the snow.

In spring of 2006 he was diagnosed with prostate cancer. He got hormone shots and 8 weeks of radiation in August. He was showing some confusion with working the combination locks and getting into the gown, but we attributed it to being upset and worried about the cancer. He got through the treatments, but seemed mentally fragile.

This past November 2006, right after the longtime next door neighbors were moving which was very emotionally sad for him, he said he was seeing bugs. They were very vivid to him — even sitting on furniture. He started losing weight and sleeping with clothes on and snoring louder, falling out of bed sometimes. He brought me 5 bunches of bananas in 2 days' time (I live on my own). He always remembered the banana incident and joked about it. He was walking slower and had to lean on things often. At one point in August 2006, he seemed to not know what to do with utensils. He started to really have trouble with getting his words out and this bothered him no end. He would also interpret the words he was hearing wrong. He had trouble reading a watch. He'd call me very often at work and he became paranoid again at home. He thought there were conspiracies. He went back to the Dr. and we were just about to schedule neurological testing, but the next day, he fell down the stairs at 4:30 AM and broke his arm in 3 places requiring surgery. This was in February 2007. He had morphine and anesthesia. After the surgery, he was fine one day and the next could not recognize the Dr's. He began hallucinating more. The Dr. decided to keep him at the hospital to do testing. He failed the tests and kept hallucinating to the point of the Dr. thinking he may be bipolar (since he had that other episode in 2004). He started him on lithium.

After about 15 days in the hospital and seeming to be better (I now think it was a coincidence, since LBD fluctuates between episodes), I picked him up and we went home. At the time I picked him up, I couldn't get him to understand he needed to wear a coat since it was cold out. He was cranky and he had to stop every so often because he was having trouble walking. There were days he seemed 100% himself and days he seemed so confused and not in touch with reality. Also, before breaking his arm, he had lost all the tax documents for their taxes. Some days, he could recall all the banking information. It was all very strange. He remembered where everything was in all his favorite stores, yet couldn't remember where his glasses were. It was so up and down. He started to think someone was trying to steal his car. Silk flowers had faces. Kids were in the house. There were two of my brother, two of my Mom, two of me and two houses. Also, little robot things were in the house, people were in the trees and machines like go-carts were in neighbors' backyards. His vision seemed off and sometimes it almost seemed like he was dreaming, or had dreamed and didn't realize it wasn't real. One day, he'd be absolutely fine, the next day, he didn't recognize my Mom. He could no longer dial a phone without help or recall phone numbers. He started to get agitated and I was fearful for my Mom, so I called the Dr. and we went to the emergency room. This was the end of May 2007 — Dad was 78. I never imagined when we left the house he would never walk again within 2 days in the hospital or come home.

Dad's first week in the hospital, he was given antipsychotic medication (a lot of it) hoping to force results: Ativan, Haldol, Depakote, Aricept, eventually lithium was added back in and an antidepressant. Dad received a full battery of tests (all appropriate), EEG, CT Scan, lumbar puncture, MRI, etc. The neurologist thought he had a dementia, but the psychiatrist thought it was an elderly onset of bipolar and slight dementia and thought he could help him with these drugs. I was praying he was right. He never walked again after 2 days in the hospital. He stopped being able to feed himself and he became incontinent. He could barely open his eyes. He was often agitated and yelling, or singing. He had periods of being himself, but those were few and far between and I treasured them. It was a living nightmare for both of us and the family. I held my breath each time before I visited because I never knew how he would be. It changed so much from day to day.

I went to the hospital pretty much every day because I did not feel he was safe or maybe misdiagnosed. I felt he had so much medication and he's never been on things like that in his life. In early June, I mentioned Lewy Body Disease to his Dr. because it fit him, but the Dr. really was hoping for him to react to the medications and get better. After six weeks, he wanted to send him to "rehab" on all those same drugs, even though he could not function on them or even open his eyes. His "diagnosis" was possible bipolar, possible dementia, and delirium from all the medication. No one was sure. I called the psychiatrist about his condition and not being able to open his eyes and ended up being, basically, yelled at (to be fair, I did page him rather late in the evening, after we had already spoken, but I was so afraid for my Dad to be sent to Rehab in the condition he was in) that I was not giving the medication enough time to work, that maybe in a month more it would, that it was partially my fault since I reduced his lithium level at home (after observing he could not walk or function on it and I was afraid he would fall). The next day, that Dr. called apologizing since his primary (medical) MD said he had lost too much weight, was on too much medication, and was dehydrated. He ended up on an IV with his medications reduced. He immediately became more alert, eyes open, interacting, but still having hallucinations and agitation.

He went to Rehab (after finding one that would take him — they saw him on a "good" day, 2 others refused him as they did not feel they could handle him). The good thing was that on less medication, he could again feed himself and was gaining strength back. Bits of my old Dad were back again, however, he was still on strong antipsychotic drugs, but a couple were removed. We had some nice visits and good conversations. On a good day, I'd call people to say Dad was on the rebound and seemed to be so much better — but the next day, a cloud would be over him and the agitation would return and the hallucinating, that never really stopped. Dad could not understand why he could not walk, so kept wanting to get up out of the wheelchair, but was so weak he would have fallen. He had no concept of time or place. In fact, he did fall in the morning twice. They called me because he was next to the bed. The Rehab nurses did not know how to deal with his agitation at night, so got prescriptions to start the Haldol again. Also, he was sent to rehab with a prescription for Ativan, even though the hospital nurses knew it "makes him crazy", however the Dr. wrote it up. Eventually, it became listed as an "allergy" and taken away after I said it would only make him worse. The medications were all wrong for him and he ended up, after two weeks, in the ER with seizures and during the last 2 weeks of July in both Medical Intensive Care and Cardiac Intensive Care on ventilators. He kept losing weight. He was tube fed for a short while. He pulled the ventilator out of his throat the 2nd time. After that, he could not swallow properly and could not eat anything but the smallest amount of pureed foods. He could not focus if he looked to the right — his vision did not follow.

After two weeks, the hospital again sent him to "rehab", even though he had a pic line in, a catheter, and could not swallow properly. We found a good place that works with people with Alzheimer's and dementia that would not accept him previously, but because of his deteriorated condition (not as agitated), they took him in. Dad seemed to have good care there, but, unfortunately on August 13, 2007, his Mom's birthday, he passed on from cardiac arrest. He was only there for 4 days. My Mom called me at 5:00 AM that morning to say he was not doing well and they were working on him. I was in the yard with my dog, whom he also loved, looking at the stars and a shooting star went by at 5:10 — he passed away at 5:10. I believe he was letting me know he was happy and okay. I had always hoped he would give me a sign. He went from a robust, happy man to weighing next to nothing.

At a hospital meeting the week he went to the last rehab, I listed all the symptoms of Lewy Body Disease, including the extreme hypersensitivity to antipsychotic medications, the seizures, the problems swallowing, the type of hallucinating he was having, etc. All of that seemed to clinch it. His primary medical Dr. agreed that it does seem likely and it seemed he had already considered it, too. All Dr's. now agree that he had an unusual form of dementia that they do not see often. I know Lewy Body is not rare, but it seems it is not diagnosed often and they had extreme difficulty diagnosing my Dad. Also, they have determined that what they have learned from my Dad is to "go slow". We did not do an autopsy as my Mom said no to having it done, but ALL the symptoms match Lewy Body Disease. I feel 100% that this was what my Dad suffered from and that it was not diagnosed. The misdiagnosis and all the medications sent him into seizures and cardiac arrest. He could not control his tongue and if lying flat, it was falling back, contributing to some of the breathing difficulties. It was two months of living in a nightmare. It progressed very quickly in the hospital and after surgery. It is a horrible, horrible disease. I wanted to share my Dad's story so that it might help someone else see these symptoms and to be sure the Dr's go easy on the medications. They can definitely be life-threatening.

I miss him so much, but I know he will always be guiding me. I cannot understand why, when it was so obvious he could not tolerate the drugs, they were not backed away from sooner. I believe the blessing from all of this is that he did pass quickly. He drove a car up until February. He would have been miserable if he lingered for years and been unable to go out or do hobbies. He was someone who worked with his hands and was always busy outdoors. I believe he suffered from this in some form from at least 2004-2007. I believe his medical problems and surgeries did cause it to rapidly advance. I am sorry this is so long, but I wanted to get it down while it is fresh. I have lost my Dad, confidant and friend to a terrible disease. I took him to the hospital for help and he never got home. I feel immense sadness because I miss him and could not help him. I don't understand why, when it seemed obvious he had something "different" going on, more things were not tried or explored. Why did it take my own research to figure out what, most likely, was wrong? The blessing in all of this is that he did not suffer for an extended period of time and is now shining down on us and is happy and at peace. It has only been two weeks. I truly miss him and I felt so inadequate to help.

Story 6. Received: September 13, 2007


My sweet precious mom died June 3, 2007, at the age of 75. My story begins back in April 2000. My mom sustained a subdural bleed in April of 2000 caused from a fall where she hit her head pretty bad. At the time she was taking the medication Coumadin (keeps your blood from clotting) for a condition she suffered called atrial fibrillation. Neither my mom nor any of her children had been made aware of the dangers of this medication by her doctor. The day of her fall we called her doctor upon my mother's insistence rather than go immediately to the emergency room. His staff told her and me she need not go to the hospital, however watch for signs of concussion. 24 hours later my mom was in the emergency room because she was becoming paralyzed. A scan showed she was bleeding internally in her brain. Surgery could not be done to stop the bleeding until her blood would clot. 2 days later she was rushed into the operating room because it was apparent she was not going to make it. My mother's 8 children, grandchildren and numerous friends and family prayed she would survive. Miraculously she did. She underwent rehab for the effects of the injury for about 3 months. She moved in temporarily with one of my sisters until she was OK to move back to her own home.

We all watched her very carefully making sure she was completely recovered. She seemed to be doing very well. She was anxious to drive again and insisted she was fine. After about one year from the injury her neurologist said it was OK for her to resume driving. This is around May 2001. She returned very quickly to her normal self of driving here, there and everywhere. She was 68 years young at this time. Her favorite pastime was to gad about seeing her 14 grandchildren and her friends. Church was very important to her and so was the Blessed Mother.

Slowly she started showing signs of decline. She got lost going to my sister's home. Her inability to write checks and pay her bills began. She didn't remember you telling her something. She left the stove on. I thought this was caused by the head injury but wanted to make sure. So I asked her doctor (a new one), a specialist (geriatrician), what did he think. He ordered a neuropsych test. My Mom was so angry about this and argued with me about not going to the test. I pleaded with her to please take the test, even though I didn't know what it really was. I thought it was some kind of scan. The poor thing did take the test against her will. Looking back, she probably knew there was something wrong and just didn't want to know what it was.

Her doctor called a meeting and asked that all of us attend. My siblings and I gathered at his office to get the news, "Your mother has Alzheimer's". My mom and most of us thought he was wrong and that he hadn't taken into account the head injury as a possible cause. This was the beginning of 6 years of what I call hell.

It would take way too long to outline our story from that date until her death in June. However, if anyone wants to know I am very willing to talk about it. The most important issue is that the medical profession does not know about Lewy body disease. In fact we took my mom to the emergency room in a very prominent hospital here in Chicago this past January and when we told them her medical history they asked us what is Lewy body disease and how do you spell it.

How we found out about Lewy Bodies was only by chance a few years ago when my mom complained repeatedly about her vision changes. An optometrist in 2004 suggested a different neurologist than she had been seeing to check her for some condition and it was that doctor who told me about Lewy Body Disease. For 3 years my mom was being told she had a disease (Alzheimer's) she didn't have and it scared her, bringing tremendous worry to her and her family. Of course in hearing about this new disease none of us had ever heard of, we thought it was another miracle. I know we all thought she may very well have had Alzheimer's but could not come to terms to accept it and thanked God when this neurologist gave us what we thought was an answer to our prayers. She doesn't have Alzheimer's, we rejoiced. Only to find out Lewy Bodies in some ways is worse. Shortly thereafter my mom had begun to shuffle at times, was very stiff, became depressed and lost a considerable amount of weight fast. The downward spiral began.

My mom continued to live on her own until the beginning of 2006. I had hired a very good friend in May 2005 to spend 4 hours a day, 3 days a week with my mom, making sure she ate and to be a companion for her since she now no longer could drive nor see very well. My siblings and I spent weekends with my mom either at her home or she at ours. I was there many times a week and spoke to my mom 4-8 times a day on the phone. I took her to as many doctors as I could find to figure out what was going on with her. I spent nights on the computer researching, trying to find answers. It could be 5 AM and I would realize I was still up reading words I could not even pronounce. I was losing my mom and did not understand why. We would go see the neurologist every 3 months and now a new geriatrician hoping to find someone who could stop her decline and give us hope. We did not even know what was to come. None of the doctors told us. I didn't want my mom living on her own anymore. I had wanted her to come live with me and my partner. She, however, wanted to stay at her home. I respected this and honored her with that request for as long as possible.

Then on or about Jan 3, 2006, my Mom fell and twisted her back. She did not complain of any pain until about 3 days later and then she was in a lot of pain. Ironically I had hired someone to move in with my Mom and this woman was to begin on Jan 5. I had convinced my mom she would be better off having someone 24 hours a day, 5 days a week. This way she could remain at her own home and she would be with one of her children on the weekends. I of course was there nearly every day anyway. I was always so afraid to leave her especially since we nearly lost her back when she had her head injury in 2000. She was still able to dress, bathe and do quite a bit of daily living items. She couldn't work the TV (that she once was more technologically proficient with than anyone I knew) or see the numbers on the phone very well so it troubled her that she could not dial our numbers. I knew it would not be long before I would be able to convince her she needed to come to my home. Having this woman stay with her may help my cause to get her to come to my home.

However, due to this fall we thought we should get her checked out so off to the emergency room we went. They believed she should be admitted since her back hurt her so much. They gave her morphine in the ER. My sister and I stayed with her until she was all settled into her bed, we kissed her good night and said we would be back first thing in the morning (it was the morning already). She was fine. Before either of us returned in the morning another sister had gone to see her. My mom had told her that her back was really hurting her, so my sister asked that they give her something for the pain. She was given Dilaudid. A little while later I returned with my other sister and my mom's condition was changed considerably from just hours before — she had become delusional and seemingly out of her mind. We did not know what had happened to her from when we left her only a few hours before. We were told they had to strap her into the bed. My mom was gone without any warning or any notice. She had been there all of our lives and now she was out of her mind, gone. I was outraged. What did they do to her? Their answer was: "This is very typical with older people". My mom was not just some older person, she was living alone, this answer did not fit my mom's condition.

She stayed in the hospital for 5 days and then returned to her home. Thank God I had hired this caretaker not knowing we really were going to need help starting that January.

It was quite evident Dilaudid did this to my Mom. Please be careful with medications. We did not believe she was ever going to come back to us. Her hired caretaker stayed with us until May 2006. Then my mom was going to finally move in with me. However one of my sisters with children asked that I allow my mom to live with her. I knew my mom so much wanted to be around her grandchildren so I agreed. This move miraculously brought my mom back to us. She was back. We totally believe this was a miracle. The doctors did not believe she would come back. They had given her 6 months to a year to live. This miracle lasted 7 months.

This past February my Mom fell again. Once again a bleed, but this time in her buttock. Again a hospital stay. Again pain medications. Since the time before morphine seemingly did not do her any harm I said OK to it. (I thought it had been the Dilaudid that induced the delusional state of mind the year before.) Once again my Mom entered the ER able to have complete conversations with us and within an hour of morphine she was gone mentally again. This time never to return to us. She remained at my sister's until her death on June 3. My sister is a saint and so is her family. I would go there nearly every day and stay a few nights a week to help. We had a caretaker come 5 days a week for 7 hours a day as well. We contracted with Hospice as soon as she left the hospital in February. That is a decision I am not sure I would do again. I have issues with how they helped us during my Mom's dying process. Interview more than one hospice agency and do not always use the doctor's recommendation.

My mom's last 4 months (especially the last 11 days) on this earth may or may not have been devastating to her, I do not know. However, they have left a tremendous amount of guilt, emotional pain, a lot of anger toward the medical profession, bewilderment, fear, distrust, and mostly loss for me, my sister the other caregiver and my whole family. I am still grieving and am not able to engage in any mission at this time. However, I intend to. I have been in contact with the Lewy Body Association and plan on starting a foundation in my mom's memory in hopes of raising money to aid in research and hope for the future for me and my family.

My Mom's sister died in Dec 2006 at the age of 67 of the same illness. We had my mom's brain and my aunt's family had her brain autopsied at two different prominent hospitals here in Chicago. Both came back with the same outcome, Final Neuropathologic Diagnosis: Diffuse Lewy Body Disease. It amazes me the pathology departments of a hospital have heard of Lewy Body Disease yet the doctors treating the living have not.

Thank you for giving this forum to talk about my mom. Hopefully our story will help someone else. I am available to discuss her condition and path to anyone who wants to know. I do not wish to let my Mom's life and death be for naught. She was a very dignified, extremely intelligent, hard working mother of nine children. She has 17 grandchildren and was the oldest of five. She cared for my grandmother until her death at 76. I now believe my grandmother may have had the same disease. Her symptoms were very much like my mom's and my aunt's. Where does this leave us? What is going to happen to us?


E. B.

Story 7. Received: October 2, 2007

My sister called me this morning to say she found your journal on the web. She cried, not only for your mom, but also because she recognizes so many symptoms in our father. He is at the stage in eight months that your mom was in after four years.

When he started to show symptoms, I did Internet searches until I came across Lewy Body disease. It fit his symptoms perfectly. When he went to be diagnosed by a geriatric practitioner, she interviewed him for an hour only, refused to talk to my sister and me, and came up with the diagnosis of Alzheimer's. It took another 2 months for the family doctor and the geriatric hospital team to agree that it was Lewy Bodies. He declined so rapidly that when the hospital team was starting to think about my mom getting some help for his daily activities, he suddenly overnight became so bad he had to be admitted to a hospital immediately. He is now waiting in the hospital for placement in a home. He cannot walk, cannot feed himself, and still hallucinates.

I think almost that it is a blessing that his decline is so fast, and I hope the end comes soon. He was healthy before, and still sailed his boat two years ago. He would not be happy living the way he is now.

Vancouver, Canada

Story 8. Received: November 12, 2007

I was thirty seven. My youngest son was six. We had just returned from a few months' placement abroad. My husband had been dragging his feet, his grip was troubling him, his writing was a problem. A visit to a consultant brought an immediate diagnosis of Parkinson Disease. The appointment had been brief and almost brutal in its lack of sensitivity. It was a huge shock. A later diagnosis of Lewy Body Dementia was to add a more alarming dimension.

My husband reacted with denial to the initial diagnosis. Inevitably, this created a lack of honesty and communication and an inability to deal with the illness. His personality changed and changed and then it changed even more until it reached a place where I didn't know him. It was a horrible place to be. I felt angry, frustrated, and irritated as gradually my kind and loving husband became firstly, introverted and selfish and then a childlike dependent who was clingy and a danger to have around.

Time has moved on. Nothing stays the same. Recently his medication has been altered. There is a lot of it. He needs it eight times a day. Reminyl, Mirtazapine, Venlafaxine, Madopar, Oxybutinin, Comptess, Amantadine. The change has been in dropping the REQUIP. This has caused a huge change. He has been on this drug for ten years. Since coming off it, he is SO much easier to live with and manage. I CAN LEAVE HIM ON HIS OWN FOR SHORT PERIODS OF TIME WITHOUT WORRYING THAT HE WILL BURN THE HOUSE DOWN OR DESTROY other things in our home. He has stopped CONSTANTLY eating. He is not as obsessed about everything.

The typical Lewy Body switching around in ability still manifests itself. I have managed everything in our home and in our family life for over ten years. I wash, dry, shave and dress him. I administer and manage all of his medication and his daily needs. He is physically very slow and can't cope with normal clothes, situations or pastimes. He is often frightened of everything and doesn't want to leave the house and rarely talks. HOWEVER when we are with other people he can still perform at a different level. This has always happened. It is SO hard to deal with and has constantly made my sons and me question how much of his behavior he can geniunely control. I DREAD assessments fearing that he will perform really well. I feel resentment, not joy, when he maintains a conversation with friends and comments about world economy as if it were a normal thing for him to do. Having spent months not being able to read and years not being able to write he filled in a hospital registration form correctly last week. Yesterday, he tried to sign a family birthday card, and couldn't. He had no idea what to write, or where on the card to write.

It's only other lewy body carers who would smile knowingly at this!!!

Story 9. Received: November 24, 2007

About 8 yrs. ago my husband started getting slump shouldered and having a shuffling gait. It was so slight at first we ignored it but after a couple of yrs. he started having trouble even moving his legs — the classic freezing of Parkinson's. He was diagnosed with Parkinson's and was started on Mirapex. He had terrible side effects, initially drowsiness but quickly deteriorated to getting so sleepy he would fall asleep while eating. We were not satisified with the medical care he was receiving and got a referral from another Dr. to a neurologist in another city. We have been satisfied with his care. That m.d. told us that people 60 and older couldn't take Mirapex without bad side effects and prescribed Sinemet instead and later added Comtan to enhance the effects of the Sinemet. He was also put on Zoloft for depression. That was six yrs. ago. He doesn't have the tremor of Parkinson's. He can still walk some but is mostly confined to a wheelchair and until recently a motorized chair. His physical decline went fairly rapidly from halting gait, to cane, to chair.

We noticed a rapid deterioration of his memory 2 yrs. ago and he was prescribed Aricept but there was no improvement and was subsequently stopped. He was then given Excelon twice a day but soon started having side effects and the dose was cut in half, but we saw little or no improvement after several months. He was then prescribed Namenda but had immediate terrible side effects of uncontrollable rage and was taken off that. In March his neurologist suggested that he probably has Lewy Body Dementia. His short-term memory has deteriorated rapidly in the last few months. While he can still say all the 'pat' phrases of old memories he gets confused and usually loses his train of thought within seconds and either talks gibberish or goes from one unconnected subject to another. In the last two weeks he's become obsessed with sex. He is almost 79 years old but apparently he's thinking like he did as a teenager. It's frustrating and many times embarrassing. He was a very successful, brilliant engineer who built his own company from scratch and was proficient with autocad engineering drawings but now can not do simple math.

He has periods of rage and periods of quiet. In the last two weeks he has started moving around constantly in his wheelchair from place to place and doesn't want me out of his sight. His attention span is so short he cannot even watch his beloved football games.

On October 30th he was admitted to a Senior Care facility for assessment of his mental status and adjustment of his medicine. He was there 10 days and it was determined by the psychiatrist that he does have Lewy Body and that he is in the severe dementia stage. After consulting with his neurologist his Parkinson's meds are being reduced and he has been taken off the Zoloft altogether since all of these can cause hallucinations and mental confusion. He has been hallucinating for a year or more but now thinks there is a man coming into the house to see me!

I have now reached the point of physical and mental exhaustion and have been advised that he should be put into a nursing home facility. I never thought I would let that happen but the family, who consists of four sons and their wives are urging me to do just that. I know his condition will only worsen and soon he won't remember anything. So I'm seriously considering it.

In the last 10 days or so he is having problems with constipation and he's never had those problems in the past.

I could go on and on about the confusion, inability to decide on anything however small, the staring into space, etc. From what I have read he fits the Lewy Body description well.

Can anyone give me any insight on what to expect? I've read the very troubling journal of the family whose mother had LBD and was in tears before I finished it. What a horrible disease.

Thank you for reading this and I'd appreciate any help you can offer.

By the way, I'm a registered nurse.

Stories, December 2007 - May 2008
Stories, March - July 2007
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