Skip to content
Lewy Body Journal: Our Family's Experience with Lewy Body Disease
Home What LBD Is Journal Other Stories Information Links Contact
Other Stories Introduction

Stories, January 2004 (5 stories)

Story 1. Received: January 2, 2004

Similar Symptoms but Same Diagnosis

Our family understands what you have been living with as our family is experiencing something very similar. It would take me hours to relate to you what symptoms we noticed first and the sequence. Below is some of what our family has experienced.

In 1997 at the age of 47, my father began experiencing Alzheimer's symptoms. His father had just been diagnosed with Alzheimer's and Parkinson's. My father was a very intelligent, active gentleman who had his own business. My brother worked for him and noticed that dad just wasn't right - something was terribly wrong. After going through numerous doctors, tests, etc, my father was diagnosed with Alzheimer's in 2000. This past spring he was diagnosed with Parkinson's as well. He was still living at home with my mother but it was getting extremely hard for her to take care of him by herself and continue to work full-time.

In August 2003 he had a possible stroke and his first seizure. He went down tremendously since then to the point to where we had to admit him to a nursing home (with a secured Alzheimer's unit). He has had several more seizures since then and is completely at the mercy of others now. Following are some of his symptoms (as of today): numerous falls, inability to judge distances (such as not knowing how far his foot is from the floor), will not speak (unless aggravated and then he curses which he never did before), very aggressive behavior, no recollection of who he is or anyone else; he now experiences hallucinations (and could have before now but we just didn't know it) and his head is always bent forward (looking directly at his feet) and can not feed himself; he can not do anything for himself now.

In December the nursing home sent him to a psychiatric hospital for evaluation due to his extremely aggressive behavior. Over a week and a half period, the doctors there have determined that he has Lewy Body Disease (he is now only 54 years of age). We are now faced with the dilemma over what kind of nursing facility to place him in. We have read that he should not be in a secured Alzheimer's unit due to the fact that he is not as mobile. For those I've spoken to (ombudsman or admissions) they are like 'He has what? What is Lewy Body Disease?'. It seems as if the nursing homes have never heard of LBD.

Do you have any suggestions over what kind of unit/facility that he would need to be placed in? We are at a loss and have only the option of a secured Alzheimer's unit as he does still walk (unsteadily) and wanders.

Thank you for allowing me the opportunity to relay our story, however brief it is. I plan on attending the Alzheimer's support group here in Texas so that I can relay to the others our experience and his new diagnosis.


Story 2. Received: January 6, 2004

We live in [city]. As I have done many times in the last years I was looking for someone that could tell my mother and I what is next. I am 44 years old, an only child. I have three children, two in college, one in high school. My mother is sixty-eight as of Nov.

My wonderful Daddy has Lewy Body. He is seventy-one as of May. Five years for sure, longer my Mother thinks. As your Dad knew.

I would like to Thank You from the bottom of my heart for this web. Had I not found you I guess we would have never been able to hear how other real people live with LOVE with LEWY BODY. God bless your Family. I am sure your Mother is a wonderful woman.

My Daddy is at the Dr.Jekyll and Mr.Hyde stage. My Mother has called me many times to come, always at night around eight pm. I can talk to Daddy on the phone and tell him I am on my way. He will say Just come tomorrow, we will get these people out and go to the court house and find out what is going on with these houses. My Mom and Dad have lived in the same house forty-two years. Mom and Dad have seven houses that are rent houses, So we kind of thought maybe that was what he was talking about for a while. But now as of Oct. we understand what is happening. Also he does not know which Wife my mother is - they have been married fifty-one years. My mother is the only wife he has ever had. He even asks me who my mother is but he does always at this point know who I am, for now. Back to mother calling: I always go to their house. Sometimes I can talk with him and with a little time, one hour or so, he will stay there, just for the night he will say. Then somtimes I have to bring him home with me for an hour or two, then he will go home for the night. I live about 15 min. away. My Mother is having a very hard time. She still works part time. My Daddy's childhood friend's Wife stays with Daddy at this point. Mom wanted me to ask how long this phase lasted with your Mother?

Thank You again so very much. ... Will always Love our MOM and DAD,


Update received: October 12, 2005

He left on a rainbow!!

Wed., Oct. 5, 2005 at 5:25 pm. My Daddy went to be with our Lord. He died very very peaceful. My Mother, My Husband, My oldest Daughter, and Myself were with him all the way. I was kissing my Daddy as he took his last breath of air. I will always Thank God for that time. God bless you all with loved ones living with this sad sickness. Good Bye I will never forget any of you.


Story 3. Received: January 8, 2004

I too am fighting the seemingly losing battle to lewy body disease with my mom. It is so difficult to watch anyone decline in this hideous way. My mom's condition worsened dramatically when last February she contracted shingles... Since that time her right arm (the affected area) became totally paralyzed and even now her right hand has become nothing but a claw. I have since quit my job to take care of her since she has no sense of balance and cannot use her walker. Her appetite as of late has become almost nil.

My daughters and I have started to puree her food in the processor which sometimes works. Of course eating by herself cannot be done now. Even with the great new utensils (fat handled) that can be purchased at medical supply stores, she would fall asleep during the middle of a bite. Sleeping approximately 20-22 hours a day is not uncommon. I try to get her up a few times during the day so bed sores do not get to form.

This disease is so unknown even to medical professionals that I wonder what they would do without the input from their patients' families.

Thanks for sharing your journal, it is so hard to deal with all the issues that come along with lewy body disease and although at times we feel so alone, it is some consolation to know there are folks like yourselves who are also coping and trying to get the word out about the monstrous disease.


Story 4. Received: January 14, 2004

Hi! I read over your journal very carefully as I am experiencing almost the exact same situation with my father. He was diagnosed about 1.5 years ago with LBD. Before that, he was diagnosed with depression and possible pre dementia. We never officially bought into LBD because the signs were infrequent. Sure, he had the slower reflexes and the confusion, but we honestly thought we could straighten him out by joking with him or telling him to focus, etc.

He is 71 years old and he is much too young to be experiencing this dreadful disease. In the past three months, we have seen a rapid decline. He lived at home with my mother and my disabled sister until he fell on 12/19/03 and broke his hip. He had surgery on the same day, and by the next day, he had aspiration pneumonia. He was on a ventilator in the ICU for one week, then was moved to a regular room. There, he caught influenza A. During all of this, we noticed his dementia significantly worsened, and he seemed to be in pain not caused from the hip. He seemed to be hallucinating more and more. To go from my house at Thanksgiving and knowing everyone there, to not knowing most of us in the hospital and now being on a g-tube for food is as heart breaking as it gets.

The doctors informed us that there was no way he could go home. He would have to go to a nursing home where they would attempt some therapy, but weren't expecting too much due to his inability to follow direction. He is being admitted this week. My brothers and I are positively wrecked from this. My mom has just had open heart surgery in September, and now this has destroyed her even further. She cries night and day.

I guess my main question/concern here is what to expect next. I am so worried about my dad regaining his cognitive thinking and realizing he is in a nursing home (which is possible, as he was in and out of it at the hospital) and going into a deep depression. He sleeps constantly. Could he be at the end? I'm just trying to get a grip. In some ways I wish the Lord would put him out of his misery and I'm afraid the g-tube is going to keep him going in a way he might not really have wanted. I know lots of people think this of their dads, but mine is/was the greatest. He is a good man who raised seven kids who have the utmost respect and love for him. He was incredibly patient, sweet, and had a wonderful sense of humor. This disease robbed him of his personality. For the last two years, he had the dementia mask.

I'm sorry to ramble and I"m sorry for your mother too. I wanted to get an update since you last wrote in August. I also wanted your input into our situation. Finally, have you heard of any promising drugs out there other than all the previous ones mentioned on web sites (all of which my dad has been on)? How about that new one for Alzheimer's folks in their advanced stage?

Thanks for listening.


Update received: February 28, 2004

I was story 4 of January 2004. Just to update it for you, my dad passed away on 2/11/04. He would go back and forth between the hospital and the nursing home because of fevers and infections. They had him on the strongest antibiotics, and they were doing nothing for him. As a family, we came to terms with the doctors and nurses as they repeatedly recommended hospice for my dad. The papers were finally signed, and my dad died after only two days in hospice. The weird thing is that my uncle, a close relative of ours and a friend of my dad's, died two days before him of pancreatic cancer. I truly believe that my uncle was waiting for my dad on the other side. In life, my uncle worried a great deal about my dad and his illness, despite the fact that he was battling a nasty illness himself.

I miss both men a great deal, and believe me, the world is two people lonelier without them. Needless to say, my family had had it rough for the last six months beginning with my mother's heart surgery, watching LBD rob us of our dad, then experiencing two wakes and two funerals in the same week. Although it is somewhat of a relief to see him out of his pain, it still hurts so bad to think that he isn't here anymore. I keep looking for signs of him, just to know that he is ok wherever he is now. He was a very religious man, and he died on the day of Our Lady of Lourdes. I can't help but think that he is being comforted by the angels now.

One more thing. About three days after my dad died, we found a live bird in our house. I didn't think anything of it, but was told later that it was a sign of someone's passing away and now being free. I sure hope that is the case. My dad was a great man who deserves to fly free of the troubles he had here on Earth.

Thanks for listening,


Story 5. Received: January 22, 2004


My name is [name] and my Mom recently passed away from complications of Lewy Body Disease. Your website and journal came in so handy for me, I just wanted to thank you. As you've said, Lewy Body Disease is not commonly known - not even by professionals in the medical field, I've discovered. Allow me to give you a brief synopsis of my Mom's experience with this disease.

In August 2003, I noticed one day that she was walking "kind of funny". I'd never seen her shuffle her feet like that before. I didn't mention it to her, as I figured maybe she was just tired. She was 83 at that time. Several days later, on 8/27/03, she called me and asked me to take her to Home Depot, as she was feeling "kind of wobbly". This tipped me off, as she was very independent and still drove. She'd never ask me to drive her somewhere. I held on to her walking up to the store and inside. When leaving however, in the parking lot she had trouble walking to the point where she was falling over and I was trying my best to hold her up by one arm (her other hand was almost touching the pavement). At that point, I knew we had to go to the emergency room, which we did.

The emergency room nurses and doctor checked her out - the usuals - CAT scan, blood work, EKG. They determined that there had been no stroke and released her since she had an appointment with her doctor the next morning anyway. He suspected hydrocephalus, but referred us to a neurosurgeon. We visited the neurosurgeon on 9/12/03. He did the standard series of tests with her and she did very well. He ruled out stroke. I spoke with him a week later and he mentioned something that he suspected called "Lewy Body Disease". I asked about the disease, and it's prognosis. He said that the disease progresses, is untreatable, and the patient "does the best they can from day to day". I asked him "How can a disease just appear in a day, or week?". He said there were probably signs that I didn't notice, or that she was hiding from me. He said the Home Depot incident was what he calls "a milestone event". So there it was.

My Mom was at home throughout September. I saw her daily as she actually continued to improve. Her confusion abated and her walking was almost back to normal. I thought somehow the worst was over and she beat the odds. On Sunday, September 28th, I stopped to see her and when I walked in her home, she said "Where's Dad?". I said "Whose Dad?". She said "Your Dad! He was just in the dining room and I wanted you to get a chair for him". My Dad passed away in 1987. My heart just sank. I knew she was in trouble. The following Monday morning, I stopped to check on her at 8:00 a.m. on my way to work, and found her on her bedroom floor, beside the bed. She was semi-conscious and very dehydrated. I called 911 and she was taken to the hospital, where she stayed until 10/23/03. Because of her fall, she had broken two ribs and the lumbar vertebrae, which was VERY painful for her. They determined that she had also suffered a heart attack (MCI) at some point during all of this. She was in the cardiac unit of the hospital for four days, then a regular room, then skilled nursing to help her walk. She was in skilled nursing for almost two weeks when the nurses & doctors realized that she wasn't making any progress. (I think she realized her fate and had given up.)

On the morning of October 23rd, the social worker on that skilled nursing floor advised me that she would be released the next morning and I had better find a place to move her where she could receive care. I found a very nice Assisted Living facility that would accept her with her condition. It was Sunrise Assisted Living in Rocky River, OH, but they are headquartered in McLean, VA. I highly recommend them. My Mom proceeded to get worse. More confused, then better, then even more confused. The hallucinations (some sinister) began. She could no longer express her thoughts. She wanted to, but the words just would not come to her. Cards and letters began to make no sense and the phone was no longer usable. I realized "I'm watching my mother die".

The last week-and-a-half to two weeks she did not know me. She would sleep often, usually with one eye half-opened and the other closed. Waking her was torment for her. She'd awake with a start and look terrified. The last week of her life was the most debilitating, naturally. Two days before she passed away, she no longer took food or drink. There was no evidence that she could hear me or feel my touch. She was now basically vegetative. It was so sad. I signed the papers for hospice only two weeks prior, so at least she was comfortable at the end. I received a call at 7:00 the morning of January 12, 2004 from the nurse at Sunrise Assisted Living. She informed me that my Mom had passed away. I kind of already knew that though. I had awakened in my home at 5:30 a.m. At 5:33 a.m. my bedroom was filled by a soft flash of white light. I'd never seen that before and tried to determine it's source. At first I thought maybe car headlights, but there is no road, driveways, or parking lots on that side of my home - plus, my blinds were closed! Then it hit me - I wonder if my Mom just passed? And she had. We were always very close and I had suspected for a long time that somehow I would know when her time came. I told someone back in October when she was hospitalized that "I know she's OK when I'm not with her because if she died, there'd be some kind of sign". And there it was. I'll miss her. I just can't believe how quickly this disease took her. While there must have been signs that I missed, it was basically from 8/27/03 until 1/12/04. She was 84 when she died, having had her last birthday 11/03.

Thank you for reading this. While my information may help you, typing this was probably therapeutic for me. Reading your journal (probably back in November '03) really helped me understand what was happening. I hope your mother is doing as well as can be expected, as well as your family.



Stories, February - April 2004
Stories, November - December 2003
Home What LBD Is Journal Other Stories Information Links Contact