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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, December 2005 - March 2006 (8 stories)

Story 1. Received: December 28, 2005

My step-dad passed in March 2004. I'm just now able to re-visit this site with clear eyes. Your journal was my guide and comfort during the final months of his life. I learned of Lewy body disease too late to spare him from some very unnecessary emotional grief and physical pain. Acting on the advice of his doctors, I faithfully administered the prescription drugs they wrote for him, based on their diagnosis of PD [Parkinson's disease] and AD [Alzheimer's disease]. As it would turn out, none of his doctors and/or hospital staff had ever heard of Lewy body disease. Too little, too late, I listed the drugs that he had severe reactions to, and that is when they were no longer administered. They were the very drugs that are listed in your story as ones that have adverse reactions with this type disease. At least during his final weeks, he was no longer agitated and/or combative, fighting the terrible side effects of incorrect drugs.

Long before his demise, he was able to communicate to me about his decline, his hallucinations and his fear of being a burden to my mother. Because he faced it head on, I too was able to take one day at a time. For as long as he was able, we carried on our dialog about his condition, the "trains on the tracks" across the street that, in the same breath, he knew were not really there, the imaginary little things he was always picking up from the carpet, and whatever was on his mind at the time. When he was no longer "in his right mind," we continued to carry on our same conversations. Sometimes he would snap back and would ask me if I was having a problem, but most of the time I hid my tears and agreed with whatever he had to say. This gave him no reason to have to defend anything he said, which eliminated any stress of not being understood. I must say that after a time, he seemed happy as I don't think he realized that he should have been unhappy. My mother and I wrestled with our own memories of what he used to be and what he was now. But, in his limited world, he still knew a gentle touch, a soft tone of voice and a kiss. In the end, all we had left was our love, and for that, I'm forever grateful.

Story 2. Received: January 5, 2006

Dear Lewy Body Journal,

I've read everyone's posts with great interest. My father has had Lewy body disease for probably about 4 years or so, but just got diagnosed (correctly) about a year ago. He has been in a nursing home for the past 7 months and is now hospitalized with an infection of some kind. We don't know what is wrong, or if he will ever come out of the hospital.

My dad was a highly intelligent, vibrant, loving, wonderful man. This disease slowly robbed him of his confidence, his interests, his freedom.

It was, and continues to be, very frustrating that Lewy body is quite unheard of. I always find myself saying, "It's like Parkinson's," or "It's like Alzheimer's." If Lewy body is the second leading cause of dementia, why hasn't anyone heard of it?

My family and I have all witnessed my father's decline, and now he is most likely nearing the end. I find this a terrible end to what was a healthy life. Dad was a very careful man when it came to his health how ironic that he would get something so out of everyone's control.

I sympathize with all of you who wrote to this forum, and hope that some day there will be early detection of this disease and others like it.

Sincerely,

MK

Story 3. Received: January 9, 2006

My father died on August 19, 2005, after a four-year struggle with dementia. His symptoms never quite fit the mold of Alzheimer's disease but were similar enough that all the health care providers assured us that Dad had Alzheimer's and treated him that way. In January of 2005 Dad's condition declined very rapidly and he went from living at home with Mom to being in an Assisted Living Dementia Unit to a Skilled Nursing Unit for Dementia (because the assisted living unit did not know how to deal with his hallucinations and other non-Alzheimer's behavior). Unfortunately, Dad "fell through the cracks" of the health care system, despite valiant efforts by my sister to get him the best care possible. (I live in Minnesota, my sister and parents in Illinois, so the majority of the hands-on and face-to-face care arrangements fell to my sister.) My parents had a Medicare HMO which seemed to specialize in denying care for anything other than physical ailments. We struggled to find proper care for Dad and he was not always treated in the best way. Fortunately, the skilled nursing unit he lived on for the last 5 months of his life was incredible. We could not have asked for him to receive better care. In retrospect, knowing what we know today, I only wish Dad had been properly diagnosed.

My sister paid to have a thorough autopsy done on Dad's brain. We just learned those results today (Jan. 9, 2006). It seems Dad did not have Alzheimer's at all; he had diffuse Lewy body disease. I had never heard of the disease until today when I received the call with the autopsy report from my sister. Ironically, she had heard of it before and even mentioned it to one of Dad's doctors because of some of his symptoms that matched something she had read about the disease. I suppose for whatever reason, the doctor did not take her suggestion seriously. We'll never know if or how different medical treatment might have changed the quality of life Dad had those last several months.

I am eager to read and learn more about this disease. The little bit I have read this afternoon has already answered some questions and put some pieces of the puzzle together in my mind about what Dad suffered from. Thank you for posting this site and for letting families share their stories. I hope that the level of awareness will increase rapidly so that more people are not denied proper diagnosis and treatment of their dementia symptoms.

PH

Story 4. Received: January 26, 2006

Hi everyone,

I was up really late last night reading all your stories. My heart goes out to all of you. Lewy body took my beloved dad in April 2005. I too had never heard of it until I went on the Internet in search of answers to his mysterious symptoms. I had to tell the Dr. what it was!

I am not quite sure when it started; in hindsight there were many "red flags" and I guess I just didn't want to accept them. My dad starting obsessing about his will and his personal belongings for quite some time. I thought it was creepy and asked him several times, "Are you planning to die soon, Dad?" Looking back now I am sure that is when he knew something wasn't "quite right." He lived alone most of his 79 years after my Mom and he divorced in 1960. He was a retired Lt. in the LAPD and was in the Navy, and fought in World War 2. He was so strong and healthy, working out 6 days a week, jogging, swimming and loving life.

I first noticed something was wrong in 2002 when I took him on a weekend trip to Palm Springs. His driving was horrendous and we kept getting lost. Being a former policeman, he was always an expert about finding his way around. Next came holidays when we would all get together, and he seemed "uncomfortable," almost scared. He would leave early. Then, he started having trouble writing checks and remembering what day it was. Then came the bad stuff. He had dental surgery and was given Vicodin for the pain. This sent him into full delirium. He was in the hospital for 6 days with what they said was a reaction to the pain medication. I knew there was more to it.

Then all was well for a few months until one night he woke up doubled over with abdominal pain. A neighbor called 911 and they came, but decided he was fine, just a little dementia. The next day when the pain became worse, the paramedics came again and this time took him in. After 10 hrs. lying in the ER a doctor finally decided he had a ruptured appendix and did immediate surgery. I was hoping that was the problem and that now he would be OK. That wasn't to be. He went home and was really good for a couple of months, then things changed again. He called me one day and said there were people sitting on his couch and that he was calling the police. Then there were children playing outside his bedroom window. Then he would be found wandering outside in the middle of the night with his handcuffs and his billy club looking into cars trying to make an arrest. He became paranoid. I thought at first maybe it was some sort of post-traumatic stress syndrome from his many years as a policeman. I was hoping it was anything but what it really was.

My dad always expressed his fear of "losing his mind." Did he know? I think he did. One day in March, he went out to his garage to start packing (he was moving, 'cause he thought his neighbors were after him). He fell and hit his head. We went to the ER and he was stitched up and then discharged. I refused to take him home and had to jump through hoops to get him evaluated. He went to a psychiatric hospital for a week and then back to the hospital. Nobody had any idea what was wrong with him! One Dr. said a stroke, the other said dementia. Like I said earlier, I had to find the diagnosis. After being in the hospital, he deteriorated very rapidly. One day he was eating a regular diet and the next day, he couldn't swallow anything. Seeing his brilliant mind slip away is beyond devastating. He spent 35 yrs. of his life protecting people and saving lives, and now nobody could protect him from this suffering.

After a zillion tests and antibiotics, we decided enough was enough. He couldn't speak, eat or walk. They inserted a feeding tube, but when he kept pulling it out, I said, "No more." I knew he would never come out of it this time. He would not have wanted to live like that. He went home on April 19th on hospice and we put a hospital bed in front of the window overlooking the Pacific Ocean as he had requested years before. He held on for 6 days, then went to his heavenly home on a Sunday night. His body was so strong, but his mind just left him. When he died he weighed only 115 lbs. My poor dad. I still have a lot of guilt because I know he was afraid for years and he hid it so well from so many people. He must have been so scared.

I can't believe how fast this disease progresses. I work in a hospital and I have yet to meet anyone who has ever heard of LBD. We had a brain autopsy and it was confirmed. To all of you who are going through this, you have my prayers and sympathy, it is a horrible thing to watch. Thank you for this journal and know that you are not alone.

God Bless,

M

Story 5. Received: January 28, 2006

A very dramatic introduction to this disease happened June 2003. I was in England for my father's funeral, when I got the call that my husband had hallucinated a double death, of our daughter and her friend, in our home. He called 911 and all hands arrived to find only him in the house. Fortunately our son was near at hand and averted him being put in psychiatric care. However, he was referred for analysis. After many months of tests, an MRI and a second opinion, it was concluded that he had DLB [dementia with Lewy bodies].

He is now on Exelon which does indeed help diminish the hallucinations. According to our provincial government these drugs only mask the problems, and do not help the pathological condition, hence they will not approve covering these costs. Others believe that over-the-counter medications, such as anti-inflammatories, are the "way to go". This was apparently concluded from a study showing that people with rheumatoid arthritis are not known to suffer from dementia. Of course, the pharmaceutical companies are only interested in research that captures them a patent, earning them millions of dollars; therefore research for effective natural remedies are out of their domain. One day at a time is our philosophy!

Thanks for listening.

L

Story 6. Received: February 11, 2006

My mom has been diagnosed with Lewy body disease (last October). She is now 77 years old. Mom's story is so similar to the stories I have read on this web site. Back in April 2001 Mom had an aortic valve replacement. This was the third replacement in 8 years. After the surgery, while still in the hospital, Mom started hallucinating. The doctors thought it was from the anesthesia. We realize now that was most likely the beginning of LBD. To make a very long story short, over the next few years, after seeing doctor after doctor, telling them all that Mom was not Mom, she has been diagnosed.

My mom knows that she has LBD, but she doesn't know exactly what LBD is. When she found out that she didn't have Alzheimer's, she was happy. I asked my dad today if Mom knows that eventually she will not be able to walk, talk, feed herself, use the bathroom, etc. and he replied sadly, "No, I haven't been able to tell her that." Right now Mom is still able to do all those things. She attended a six-week program on handling depression, and the doctors seem to have found the right doses of all her meds to keep her stable. Dad is looking into selling their house and buying a single-level condo. This is getting Mom very upset.

My question is, Do we tell Mom what her future looks like? Would she be better off knowing or not knowing? We (my dad, 2 sisters and brother) discuss selling the house, how to provide for Mom's future care, etc., but we don't take it any further. We have no idea how long Mom will be like she is now.

Our concern now is that Mom doesn't sleep well at night and gets out of bed and wanders around the house. Dad is a very sound sleeper. We are afraid of her falling, which she has done many times, but luckily she hasn't been seriously hurt. Dad has found her in the middle of the night searching under the kitchen sink for something to gargle with. She has appeared on my father's side of the bed with a cooking utensil thinking she is cooking. Last week she fell out of the bed. She was lucky in that she hit her arm on the night table and not her head. The doctors have prescribed sleeping pills to keep her asleep at night so she won't get up. The sleeping pills have made her dreams, nightmares, hallucinations worse. Mom has a history of climbing out of hospital beds so we are afraid to put bars on the side of the bed.

It seems my dad doesn't know what to do. We have mentioned him getting an aide to be there at night, but he doesn't want to talk about that, nor does my mother. We mention re-arranging the set-up of the bedrooms, but again they won't hear of it. We, my sister and brother, just don't know what to do. Do we become forceful with them or just back off, which is what we have been doing?

Any advice you could share would be greatly appreciated.

JG

Story 7. Received: March 7, 2006

I have followed your journey with great interest for some time since my husband's diagnosis of LBD. As far as dealing with hospice I think you will know when the time is right! I think my husband had this disease for many years, I would say maybe 8-9 years, maybe more. I will try and tell you briefly if I can.

We were married in 1970, we had 3 girls and when our youngest daughter would be 15 years old that year, we were thrilled to find out we were having another child. I was 39 and J was 53 yrs old. We thought this child was sent to us for a reason.

J was a welder by trade and was in the boilermakers union and traveled a lot. The same year our child was to be born, J came home from work with a violent headache. To make a look story short, he never returned to work except a year later for 6 weeks and he couldn't do it. He applied for early retirement. To this day we never got a concrete reason for the headaches. We went along for many years and about 8-9 years ago, the changes started. J would have episodes of outbursts, and J was a very quiet even-tempered man, and as time went on the outbursts got worse. J ran from Dr to Dr and nothing was raised other than possible depression which they did try to treat him for but he never gave the meds a chance. He also had suffered some mini-strokes along the way.

About 4 years ago he became so violent that I moved out, he would not let me go to Dr's with him nor talk to them, and it was a matter of my safety at the time. I had a 10 yr old child at home and he would say things like you better not go to sleep tonight and things like that. About 6 weeks later, I moved back home and J went into an apartment because we both felt it wasn't fair to our son for him to not be in his home around his friends. In 1 year's time the slide in this disease was unreal. He came to the house, I managed his meds, and the falls were more on a weekly basis. During this time he did everything to get me to let him back in the home and I told him only if he let me become involved with his Dr's and he agreed. He moved back home and the next 2 years were a roller coaster. He couldn't drive anymore. We went from Dr to Dr, thinking it was a form of depression. With the mini-strokes, he started to have pain in his legs and the neurologist told us he had polyneuropathy so he referred us to another neurologist and they did the tests and when we went back that same afternoon the Dr told me, "Yes, he does have polyneuropthy but he also has Parkinson's." I was stunned but in hindsight I was reminded in my mind how he dragged his feet, fell, and at times had mild tremors. They started him on the meds and the mood swings were unreal. After about 6 months the same Dr told me he was sure it was LBD and in his office there was a tiny booklet on dementias and one small article on LBD. That's when I turned to the Internet because I just never heard of it and there I was educated.

The ups and downs of this disease are unreal and most people not dealing with it wouldn't even begin to understand it.

In April of last yr J had a very bad fall in the bathroom, he fractured the T-12 in his spine, and shortly after that within weeks he got the first aspiration pneumonia, with many to follow. By now his care was 24-7. He no longer could walk or get into a shower. After the many bouts with the aspiration pneumonia, the Dr finally said, "Let's call hospice" and they came in from June on. In October he went into hospice house for me to have a respite. I knew the end was near. They just didn't know how to deal with him. I printed off much reading material that I had saved from my own research! J went into hospice on a Saturday afternoon after being out of control for a full week and by Monday they were telling me I could take him home, that they adjusted his meds. I remember thinking, "OK. Sure!" I knew the ups and downs of this disease and by late Tuesday they were handing me end-of-life material to read. I chose to bring him home to die. It was a promise I made to him early on. Hospice was against this but when they realized how determined I was they did everything in their power to get him home on Friday. My sister flew in to help; she is a nurse (LPN). J was not aware of anything after Saturday and he slipped away Monday afternoon, 10/10/05. His battle was over. But I have to say as a family we did everything we could to make him comfortable. He died with all of his children with him and grandchildren and he did get to come home!

There is a great deal more to this saga of LBD for us but I tried to cut corners and maybe one day someone will read it and somehow it will help them with their journey!

I wish you well with your Mother!

I

Story 8. Received: March 8, 2006

My mom was just diagnosed with Lewy body disease. She woke up one morning in late January unable to move her legs. She was taken to the hospital and went through a battery of tests for 2 days. Nothing was diagnosed and she was released barely able to stand. We had found out in late 2005 that she was suffering from hallucinations and nightmares (she finally felt we needed to know). Her doctor said it was probably from the stress of having my dad in a nursing home now and her having to sell the family home. After several visits to many doctors trying to find out what was going on with Mom, we were finally told by a neurologist (second opinion) that she had Lewy body disease. It is a relief to know what is causing all of her problems, but it is frustrating to watch the decline. Unfortunately her disease is causing rapid deterioration physically and mentally. She is lucid about 50% of the time and has lost her ability to walk. I've noticed tremors in her arms and slurring in her speech at times. I've appreciated all the stories I've read and have passed information on to the nursing home where Mom now resides. The home is working feverishly to accommodate Mom and working at keeping on top of things with her. They are bringing in a speaker in April for staff in-service. I have great concerns about this being a hereditary disease. Nothing in Mom's relatives that I know of, but she has 8 kids!

Thanks again for all the information about this dreadful disease and for all who shared their stories.

CS

Update received: April 4, 2006

Just thought I would let you know that my mom's fight with Lewy body was very short and is now over. She passed away on Thursday, March 30th. After having read the stories about how long some people battle this disease, I feel Mom was lucky to have suffered only for a short while. The disease progressed exactly how many of the journals said, only at a much more rapid pace.

I will keep reading information on this disease and praying for a cure. Thank you again for providing such valuable information and letting us know what we were up against. I have passed this website on to someone else who has just heard about this disease because of a friend who was recently diagnosed with Lewy body.

The nursing home was wonderful with my mom and have planned an in-service for staff on how to deal with any future residents with this disease. They truly were willing to do whatever they could to make my mom more comfortable. Hospice was present the past few days and had only recently been with someone else with this disease. Hopefully, with the help of this website many more people will know and understand Lewy body and the devastating hold it has on its victims.

C

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