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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, June - December 2008 (7 stories)

Story 1. Received: June 24, 2008

My sisters and I want to thank you for your site on LBD. Our mother was just diagnosed with LBD two weeks ago, June 11, 2008, which ironically happened to be her 48th wedding anniversary. This diagnosis comes after a very rapid decline in the past four months.

It is hard to tell how long Mom has been suffering with this awful disease, but my sisters and I noticed a decline after our dad had surgery for lung cancer in September 2005. One of my sisters contacted our mom's primary care doctor to inquire about what might be going on, even asking about dementia, and was pretty much told to mind her business. Over the several months, while Dad took his treatment and we thought he was improving, Mom seemed okay, too. However, in July 2006, things suddenly began to spiral downward. My dad, who had finished treatment in June and was given an apparent clean bill of health, began to have problems. Our mom was also having problems, and in fact had mistaken the gas pedal for the brake and had a crash, had a couple of falls, etc. Finally my dad, at the urging of one of my sisters, took her to a neurologist. After a battery of tests were run, a diagnosis of seizure disorder was given and Mom was put on Keppra.

Things did not improve. In August 2006, Mom, on her own and for reasons we don't know, stopped taking her Paxil. She was a mess. Dad in the meantime found that his cancer had returned and worse yet, spread to his brain. This was almost more than our mom could take. When our dad died a short time later, in October 2006, Mom's reaction was frightening. She kept saying over and over that she had been watching a play when our dad died, it didn't seem real to her.

Three days after our dad's funeral, we put Mom in assisted living. We caught a lot of grief from her friends, who I think thought we were just dumping Mom so we didn't have to deal with her. Not true. What these friends did not know was that Mom was not eating, had lost significant weight, not taking her medicine willingly, not bathing on her own, etc. And sadly, none of us could take her in and watch her. It was bigger than we could deal with.

Fortunately, within days of going into assisted living, Mom did make a remarkable turn around. While sad about what happened to our dad, I think she was trying to make the best of it. I took her to a geriatric psychiatry center for further evaluation. They put her on Aricept (she had also just recently started taking Namenda), and recommended a neuropsych exam. The exam was difficult for Mom and the result was a diagnosis of Alzheimer's, along with depression. This was January 2007.

Mom actually took the news pretty well. She was adjusting well to her new life and my sisters and I thought we were okay. We girls had power of attorney and kept watch over her money, which led her to tell her friends that we weren't giving her money and were mistreating her, even though she knew we were trying to care for her. She would also tell anyone who would listen how awful the place she is at was, how she wanted to move, etc. Of course, these well meaning friends would contact us, furthering our guilt. Why couldn't they realize that we were doing our best? Our family members, aunts and uncles, know we are, so I guess that is all that matters.

Fast forward to September 2007. Mom celebrated her 74th birthday on Labor Day weekend and was cute, in a good mood, etc. Then two weeks later, it seems the bottom fell out. She became severely depressed, very very unhappy with her living arrangements. Finally, in early November 2007, we decided we needed to hospitalize her for her depression. I talked with her that Friday night, and she was coherent. The next morning, at 7 am, one of my sisters called saying they had moved Mom to a different hospital as her heart rate was at an alarming rate. This happened after she received just one dose of Seroquel, which we now know is not the correct medicine for a patient with LBD (not yet diagnosed). When I visited her on Sunday, she was hallucinating. This was the first I had seen of this. It was very disturbing. Also, this hospital insisted that Mom needed additional help that they couldn't give her, so we had to hire sitters to stay with her round the clock when we couldn't be there with her. She was in that hospital for 5 days, then moved back to the psychiatric hospital. She was at that hospital for Thanksgiving. My family and I visited her there and it was the most heartbreaking thing I think I have ever witnessed. She was released from that hospital a week and a half later.

Instead of being better, she was worse. She walked into the first hospital talking, etc., and left 2 1/2 weeks later needing a wheelchair, shaking, etc. What in the world happened? She was back in a different hospital two weeks later after the assisted living facility called 911 when Mom was lethargic and non-responsive. She had pneumonia and was malnourished. She stayed at this new hospital for about 5 days. My sisters and I decided we liked this newer hospital better and switched all of her doctors to those affiliated with it.

Fast forward to early March 2008. Mom had shown some minor improvement. She was eating all right, in fact gained a good bit of weight to where she needed new clothes. I took her to buy some clothes and was horrified to find out she could no longer dress herself. Mom was not happy about this and kept asking over and over what was happening. Now, keep in mind, we were having pretty good conversations at this point. She went to her neurologist a short time later who diagnosed her with Parkinsonism and prescribed Requip. Mom took this news very hard, refusing to get out of bed, etc. It seems that once she heard this news, the decline was very rapid. I noticed that when calling her on the phone, I could no longer understand what she was saying to me. She would just blurt out gibberish.

Finally, we arrive at the LBD diagnosis. The doctors would like to perform tests on Mom to be sure. My sisters and I are unsure if we should subject Mom to this. What would the benefit be? The diagnosis of LBD is a relief in that we at least know what she has. It is remarkable how many of the symptoms Mom has of this horrible disease.

I miss my mom, who was my best friend. I would talk to her daily and ask her advice. I wasn't ready to role reverse and be the one to take care of my mom. Like many of your other posters have said, we have come to love our new mom and appreciate what she has to offer. Some days we get a happy mom, who may be speaking gibberish and hallucinate; other days we have a mom who is quite negative. I just wish there was more information out there and that doctors were more aware.

Thanks for letting me post this unreasonably long email.

DM

Story 2. Received: August 7, 2008

Where to begin? My mum passed away 18 months ago very unexpectedly! Before she did, she asked me to "look out for your father". He was starting to get forgetful. Her loss hit us all very badly. She was much loved by us all and the centre of our universe! Sadly, my father was almost in a spiral of despair, loss, pain and confusion! And has been like that ever since the odd day of happiness with the 'here and now' but few and far between! I took him under my wing and 10 months ago after seeing various professionals, he was diagnosed as having Lewy Disease. New to me was the name, but not the way he is! There are days he is very lucid, funny and, as my kids say, "with the programme!"; others, falls asleep instantly, forgets simple words and gets down as he cannot remember how to do things of his hobbies which were once his job! Model making, painting, etc. So much inside that he feels unable to express. Loneliness probably playing a major part of that, coupled with fear, though he would never admit to it!

I will arrange to do things with and for him and he forgets what was arranged from one moment to the next, making him miss out on what he has left. I could go on but I won't. I read some of the things on here and see people worse off. I don't know what tomorrow will bring. But if he gets as bad as some people predict, then I hope for his own pride, when he is ready, that he just slips away to join his wife. Everyone deserves dignity.

Story 3. Received: August 26, 2008

I have been reading all the posted letters and I must say I feel an overwhelming closeness to all of these people. My dad H passed away from LBD just 8-16-2008 at 12:21 to be exact. He took his last breath after about 3 years of LBD.

I remember the first time I actually knew that there was something definitely wrong with my dad. I was visiting him at his home and there he was sitting at his dining room table trying to do his bills. He had them all scattered and he could not make out what he was doing. I was watching this from the couch in the living room. My dad then cradled his head in his hands and just sat at the table. Not a sound to be heard, just silence. I got up and went over to him. I said, "Hey, Pops, are you confused?" He just said, "Yes." I then told him, "That's okay. Let's do them together." That was when I knew in my heart that my dad was sick and he needed me. I made it a point to visit weekly to get his bills done. I would fill them out and he would sign them. As time went on, even his signature was not legible. And eventually he could not even write.

I know exactly how this disease destroys a person. A man that was once an army sergeant, a loveable father of four (three daughters and a son), a husband, a grandfather, someone who never asked for help. He was "The Provider" for our family, never sick and never missing work. Just 75 years old ... time came too soon! I never had time to truly prepare for what I was about to get myself into when I got Power of Attorney over my dad and moved him onto our property in a little cabin that my sister and I found for him.

I lived with LB as my dad did, although it was not actually in my body. I witnessed firsthand every day what it did to him. It was a roller coaster ride for 2 years from hallucinations in the middle of the night, him calling me and saying he couldn't breathe, emergency room visits, medications causing more hallucinations, anger, confusion, depression, no patience, demanding of my time, etc. From burning food on the stove in the cabin to not being able to cook and me having to take all of his simple tasks away, telling him repeatedly, "Don't worry, Dad, I'll do it." Always making light of a situation, never letting him know how hard it was on me to see the man that always was the strong one and now I had to be the strong one reversing the role of Father and Youngest Daughter (the Baby), with LB diminishing him everyday. I now was his strong one. I had no choice. I loved my dad!

Then the falls came. And the assisted living since I could no longer take care of him the way he needed and the way I knew would be best for him. With every move he went downhill. I cried every night worrying about him, still getting calls from the aides regarding his falls, confusion, etc. It was never-ending and continued more frequently. He eventually fell and broke his ankle in Feb. of 2008 and was in the hospital for surgery and then to a rehabilitation center. He never recovered and he eventually could not even walk anymore he was in a wheelchair. His body was deteriorating every day. He then had to be moved to a dementia care facility in May 2008. I still visited him every chance I could, even though it was killing me inside to see him this way. And every time I visited him he would ask when am I gonna take him home?! I did not know how to respond. I would just tell him, "I can't today, Dad. I'm sorry! Poparoo!" I'd tell him, "Don't worry, Dad. I've got your back!"

I would hold his hands doing the thumb wrestling. Just a simple child's game but he enjoyed it as if it were something special. It was special, very special and I know I no longer will ever feel the warmth of my dad's hand or his strong grip. I will never hear "T" again, my nickname since childhood. I will never see the sunshine on his face as we sat out on the patio to warm him up he would just close his eyes and tilt his head back to feel the warmth of the sun's rays on his handsome face. So many visits he wouldn't even talk.We'd just sit with each other and there was an understanding between us. I felt my dad knew he was sick, even though there was confusion he always knew who I was.

The last time I heard my dad's voice was on Sunday, 8-10-2008. My brother was visiting my dad and he called me and said that he was with the pops and asked if he wanted to talk to me. I then heard my dad in a low grumbly voice say, "T, where are you? Hurry UP!" I replied, "Hurry up, Dad? Hurry up for what?" He just replied, "Hurry up!" I said, "Okay, Pops, I will be in tomorrow and I will bring you a chocolate milkshake!" He said, "Okay."

Monday morning came and I went to see my dad. He was lying in bed with his eyes open, looking in a blank stare up to the ceiling. He never spoke again. He was going into a coma state. I got him to suck a few swallows of milkshake and some yogurt with the help of my sister. I tried to comfort him and talked to him all day. He would move his eyes around and eventually make contact with mine. I'd smile at him as tears welled up and would drop on his cheeks. I truly believe he knew what was going on but had no control over it. It was killing him inside his heart just as it was killing me. He was on comfort measures only at this point. Morphine as needed.

Tuesday came and I never saw my dad open his eyes again. He was in a coma. Tuesday evening, his breathing started to change. Wednesday came and so did the gurgling noises as the fluid started to build up. Breathing labored. Wednesday evening, worse. And the smell of death. I will never forget that ammonia smell, but just slightly. Thursday, fever, loud gurgling, intense smell even after bathing his body. Shallow breath, upper chest only, no longer in his abdomen. His body changed so drastically within those five days. Thursday evening, stopped periods of breathing, high fever, mouth swabs of mucus, intense smell. Friday, very shallow breathing, stopped periods, heart beating irregularly but still strong. Friday evening, his wife by his side with his four children all touching and holding him, telling him it was okay to go. "Dad, please go. We will be okay, we will take care of each other."

I was fanning my father with a newspaper, praying "Please go, please no more suffering, please." And then I got an overwhelming feeling of tiredness. (Was it from not being able to sleep those past five days, being at my dad's bedside worried he might pass all alone? I forced myself to stay awake holding his hand waiting for the moment to witness something I knew nothing about death.) I laid my head down next to my father's shoulder and felt a peace overcome my body. And within a few minutes, I do not know if I fell asleep or what happened but at a point I heard, "T, I'm going!" I then lifted my head to my sisters' loud sigh and I witnessed my dad taking his last three breaths. I said to my family as I was lifting my head, "Did you hear dad? He said he was going." My oldest sister couldn't believe what was happening. She assured me that that is exactly what happened. No one heard him though. Did he really talk to me? After 5 days of not a single reaction from my dad, he had so much expression on his face as he took those last breaths. And then tears streamed down his face. My dad was at peace.

I know this seems so graphic but I feel a sense of healing. I am numb still, since it's only been just over a week. I cried the first 2 days and haven't been able to cry since. I don't know why. I miss my Dad my Poparoo! more than words could ever express. I miss my old dad before the LB disease, but even the LB man I knew, and that's because it was still my dad.

I love you, Dad. Forever in my thoughts and in my heart! Remember, Dad, I've got your back!

T

Story 4. Received: August 27, 2008

I have spent the last 4 years trying to get a proper diagnosis for my 72-year-old mother. We have seen a primary care physician who refused to see the obvious symptoms of Parkinson's-like shaking and serious memory loss. He dismissed our concerns early on as "normal aging processes". After 2 transient ischemic attacks he finally tried Aricept which only made matters worse. He then put her on 10 mg. of Zyprexa with no noticeable change. He increased the dose to 20 and all she did was sleep all day. We went back to 10 mg., but there was no change. I requested an MRI, which he reluctantly did. The results were undeniable. She had obvious damage throughout the brain.

I was frustrated with him and determined to consult with a neurologist. I requested that her MRI be sent to our local stroke specialist. He examined her quite thoroughly, read the MRI results, and determined that she has diffuse lewy body disease. He instructed me to "google" this topic. As I read the symptoms I could see that this diagnosis was a distinct possibility.

However, after I read the accounts of your mother's experiences with this disease I knew that this is exactly what she has. So many of your comments mirrored my mother's symptoms. Your journal was honest, raw emotion mixed with so much valuable information I could scarcely take it in. It was comforting to know that someone had been through what I am now experiencing. Accepting the diagnosis today is only the first step in what sounds like a long journey. I will be forever grateful for your willingness to share your experiences. May God bless your family.

Thank you,

BP

Update received: January 2, 2009

My mother passed away on December 3, 2008 after an eight month struggle. It was indeed frustrating that there was not more information available to us regarding this disease. Even the health care professionals I dealt with were unaware of this disease and had to do their own research in order to help me. Because of your journal I realize now that we had been dealing with the disease much longer than we realized.

I plan to speak out in my community about this disease and help others in this situation. I am currently working with the hospice group who served us in trying to educate the CNA's and nurses about this. I would appreciate any materials that might be available in the future.

LBD will be a continued area of research for me and my family. I have two children in health care professions and they are going to speak out and continue the research. Thank you for sharing a very personal story. It provided a bit of a road map for me as we progressed deeper into the disease and helped me to cope with what was happening and to prepare myself for the future declines. I will be forever grateful for your journal and I will refer others to your website.

Bless you! I wish you a Happy New Year.

B

Story 5. Received: September 23, 2008

Hi,

thanks for your website it has been the most illuminating one about a disease which is still all but unknown here in the UK.

My lovely dad has just been diagnosed with LBD (which I can't help but think of as little black dress ..). He was 64 today.

He had been treated for Parkinson's with disastrous effect, and is now working his way out of a psychiatric ward where he was sectioned after becoming increasingly angry, violent, confused and upset as well as being troubled by horrific constant hallucinations.

His consultant said he would "put this one down to experience". Hopefully dad's terrible decline in the past month under PD drugs has taught this man a lesson for future patients: look for LBD first.

It is such a comfort to read other people's experiences although I am now very anxious about the future. at least I have my dad back for the time being, back to his strong-willed but lovely old self.

S T,
UK

Story 6. Received: October 22, 2008

My mother has LBD. She has been living with me and my son and daughter-in-law for the last year. It was very hard to get her out of her home. In May of 2008 she had a stroke. She can no longer feed herself or go to the restroom; she is now in a wheelchair. It has been very tough caring for her because we all work full time. We have my granddaughter who is 22 watch her during the day. Mom is surrounded by constant love. On the weekends the three of us take turns running errands etc so someone is always with mom. Her doctor recommended hospice about 2 months ago. Hospice has been a great support system for all of us.

At this point in time mom seems to have trouble remembering to swallow. She will hold food and liquids in her mouth for long periods of time then start choking. I have read everything I can get my hands on but it is very hard to learn about the stages of the disease. I want to say the year we have had my mother with us has been wonderful. I have learned to love her in a whole new way. She is a very special women. ... As I type this note I can feel the emotion. Mom is in so much pain but still smiles. Thank you so much for this web site. You do need support through these time.

JG

Update received: January 2, 2009

Mom passed away on December 5th 2008. I miss her so much. Our family has remained strong but our house is so empty right now. She brought so much Joy to all of us everyday. She was a very brave women with great determination.

JG

Story 7. Received: December 8, 2008

My dad was diagnosed with Lewy Body Dementia last October. He didn't survive the year. My beloved dad went to heaven on July 17th, 2008, leaving a family in disbelief and anger towards the medical field that seems to be misinformed of how to treat patients with this horrific disease.

My dad was a strong, ambitious, caring man, who was a "people person" and lit up a room when he walked in. He never knew a stranger they were his friends. My family believes my dad may have started his demise about 8-9 years ago. He was a square dance caller and he was not able to recall the "steps or calls" to the squares. Other symptoms were the loss of desire to do things, to take situations in his hands, depressed, balance was off, and forgetting to do things or remembering words. In early 2007, these symptoms seemed to worsen. My mom and dad sold their home and moved in with my brother and his wife for a couple of months. My dad's license was taken from him and with that, his independence. He was so angry to know that he would never drive again. It was the one thing that he blamed us for and said he would never forgive us.

In early 2008, the symptoms worsened. He had very vivid hallucinations, often with children. They were so real to him and he would get upset that we didn't see them. He was given Seroquel (sp) and was told to increase it as needed. As the months passed, Dad became incontinent and required Depends at night. Mom often found him wandering in the house at night and he would be naked, in the garage, or he may have urinated on the floor somewhere. This was so hard for my mother. They had been married 52 years and were inseparable. It devastated her to see him deteriorate so rapidly. When I would go visit them, I would notice physical changes in Dad. His eyes would be rimmed with red, his smile had changed, almost sinister looking at times, his brows were always furrowed, and he was slightly bent when he would walk. Dad became very agitated easily and would sometimes become verbally abusive towards Mom.

The hallucinations were severe by May and caused us alarm because they became violent. In June, my parents stayed with my family for a week. Dad was doing okay I felt relief that he was able to converse with me. However, by the middle of the week, his behavior took a turn for the worse. With this disease, Dad always thought Mom had a twin, and you never knew which one he was talking to. He would get very angry at the "twin" and say things that would be hurtful to Mom. By the weekend, Dad was disoriented and left my house several times. We decided to take him to the hospital to be checked by his doctor. This action was the "beginning of the end" of his wonderful life. When my father entered the emergency room on June 7th, he was able to walk to the bathroom, to eat by himself, to talk, to laugh, to know who we were. It took less than 24 hours for my dad to go to a new level of this disease. Who do I blame: the doctors. They prescribed a high dose of Geodon (sp), which didn't even put Dad out for an hour. The hospital staff was in shock. They gave him more once he was in his room. The next morning, mom and I returned to the hospital to find Dad strapped to the bed, in the middle of the nurses station. We were appalled. Evidently, in the night Dad became very aggressive and security was called to help restrain him. After that night, my father never spent a night alone in any hospital. Many of the nurses were not willing to work with Dad because of his agitation and aggressiveness. He was restrained for 17 hours and we became very angry. We would ask for the restraints to be taken off, but they would only loosen them. We finally went to hospital administration and requested a new floor. We became known as the"problem family". My father was given Haldol, Imbilify (sp), Valium. After doing some research, there is documentation that these drugs cause an allergic type reaction to LBD patients. (Go to YouTube.com and search "Lewy Body Dementia".) After that first night, my father could no longer talk, walk, go to the bathroom, feed himself, or recognize the family. He was mean, angry, and sad. I believe the medications that the doctors gave him caused the downhill spiral of my dad's life.

At the end of June my mother and father moved north to be with my sisters, one who was a nurse. Dad continued to worsen at my sister's home. He slept very little and lost the desire to live. One day he told my sister that "when you don't eat or drink you die". This was a lucid moment for my dad. He slowly started to starve himself and deprive himself of liquid. On July 6th, I received a call that Dad was once again in the hospital with dehydration. I flew to be at my father's side and support my wonderful mother and sisters. When I arrived at the hospital, he was on his 6th bag of fluids. It was his last bag because my mom said they had living wills and it was stated to not keep either of them alive by feeding tubes or artificial means. They were going to hook my dad up to a feeding tube. We made the decision not to have this done. Dad had won he did not want to live with this disease anymore. He knew this was a way to beat it. The days that followed were not easy. Dad would be in and out of consciousness. He was given Valium to calm him. We would feed him when he wanted to eat and give him liquids when he wanted to drink.

After a few days he was moved to a Veteran's Home where he had impeccable care. The staff was absolutely wonderful. They cared for Dad and made him comfortable. We stayed with Dad 24 hours, slept on the floor, we were fed, we were allowed to sleep on couches it was fabulous. Dad had a lucid moment with each of us, where he actually knew each one of us and talked with us. My moment rings in my ears forever he told me, "You take care of yourself". I was alone in the room with him and it was beautiful. My mom never left his side, she held on to him for as long as she could. Then on July 17th, at 7:15 AM, Mom and I watched Dad take his last breath. It was beautiful because Dad's skin became so soft and no wrinkles, the pain had left his face and I knew he didn't have to be angry anymore or agitated. I knew that he was at peace and I knew he felt victorious over this disease.

I miss him terribly and now have to do all the "firsts" after losing a loved one. I know Dad is watching over us. We reported the hospital to the state board of health and we are debating what to do with the doctors. It won't bring Dad back, but it could help other patients not to be given these medications that don't help LBD patients. I love you Dad ... you were the best Dad a girl could ever have .. you were robbed of your time here ... I miss you.

JS

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