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

Story 1. Received: March 9, 2007

As long ago as 2002, I knew my father, at the age of 80 was different but it wasn't until late in 2005 that I was able to convince anyone else that there was really anything wrong. His GP, who's nearly as old as he is, said the memory lapses were just old age, his best friends all said it was nothing. Anyway, eventually, we had some tests done and they said it was vascular dementia. Unfortunately, there is nothing wrong with his heart, he's never had blood pressure and has never had any hint of a stroke, large or small, so this diagnosis didn't seem terribly plausible to me. But, we were told to go away and come back in a year's time unless there was any significant change. Six months later, we were back for more tests and this time they tried Dementia with Lewy bodies. So it was back to Google for me to find out what THAT was! The symptoms did seem to fit better, so we settled on Lewy bodies. Now, in March 2007, I have to remind myself that I was quite amused, at the time, only a year ago, by some of the questions I was asked; can he do the shopping, take a taxi, manage his money, pay bills by himself? OF COURSE he can! Feed and wash himself? Of course! Now all of these answers are maybe, no he can't, or perhaps sometimes or sort of.

Dad's diagnosis and current situation are affected by the type of man he was. He had a very high IQ, shown by being a member of Mensa (putting him in the top 2% of the population) which was coupled with a near photographic memory and a very disciplined personality. So, in some of the neurological tests he still scores better than average for his age group. The doctors working on the diagnosis didn't know him before this all happened and perhaps doubted, just a little, my assessment of the magnitude of the apparent changes. His personality is different. He IS a different person. He's actually a nicer, warmer, fuzzier, more emotional person. I rationalise this as being caused by the loss of logic. He spent most of his life quietly, subtly, analysing everything and everyone and always knowing what was the best course of action, or inaction, to take and I suspect always feeling privately superior to the mere mortals around him. He was a loving father and husband but it was, at times, a hard love. That's all gone, not the love, but the hardness. He is now, at times, petulant or demanding like a child, but never hard. After years of only ever getting, at best, silent, tacit approval from him for anything ever I did, he now thinks and tells me I'm absolutely wonderful, so clever, so capable and just falls over himself to be grateful for whatever I do for him (most of the time). He has his times of frustration and I have to work very hard not to argue when he's being completely illogical or paranoid about something, but, and this is very helpful for his situation, he has, so far at least, retained his sense of humour and so I suspect is a bit of a favourite with the carers who now visit him twice a day.

He now is retreating more and more into his own little world. He sleeps a lot of the time and is becoming physically and mentally incapable of continuing most of the activities he enjoys; his lack of balance and muscle stiffness mean he can barely walk and lifting his piano accordion to play it is, sadly, too much for him now and he steadfastly refuses to take on a smaller, lighter one. He has given up bird watching as he can't see, or hear, the birds and lately can't work out how to focus the binoculars. He stopped replaying his old chess games some time ago and I suspect has stopped playing patience altogether, too. With a very understanding and loyal friend as a partner, miraculously, he still manages somehow to play bridge and, until quite recently, could still occasionally play very well, but his bad nights are now outnumbering his good or 'okay' nights so the end of this activity is in sight.

This is a slow, long, drawn out death. In many ways, it must be, in his more lucid moments, a kind of living hell for him. He said recently that sometimes he feels like cowering in the corner and telling 'them all' to go away and leave him alone. For most of his 85 years he has been a fiercely independent man, a very private individual who was always very quietly sure of himself. Now, he needs help with the simplest of things and is increasingly completely at a loss to know what's going on around him. At least with his diminished powers of insight, he is not capable of fully understanding what's happening to him. He knows he is ill, he knows he can't work things out the way he once could, he knows his memory is starting to fail him but he is protected from appreciating the full extent of his own decline.

I have read the average time to the end after a diagnosis of Lewy Bodies is seven years. We've got a long way to go yet.

L B (Australia)

Story 2. Received: March 22, 2007


Thanks for providing the information on LBD on the Internet. My Mom passed away a week ago, aged 68. While I am mourning for her, having seen her suffering so much, I definitely believe that there are worse things than death.

We only got the actual LBD diagnosis three months ago, when Mom "overreacted" to Risperdal, which was given to her because the "experts" thought she was suffering from Alzheimer's disease.

She lived in an assisted living situation for the past 4.5 months, having lived in the house she and my Dad had built 30 years ago before. Roughly a year before we took her to the assisted living situation my younger sister moved in to take care of her. However, at some point she could not handle the situation any more.

My mother had all the symptoms typical for LBD, such as hallucinations, disorientation, sudden changes in intellectual capacities (back and forth). I believe that she had had the disease for several years, but was able to hide the symptoms at first, especially when my father still lived (he died in May 2004). After his death, things grew ever worse.

My Mom always was a very controlled person, and now she was suddenly very emotional in every way. At the same time, she still tried to control, to hold, to not let go. We all had to struggle with her demands and with the guilt we felt whenever she demanded impossible things. My Mom wasted herself trying to keep up the impression everything was fine. As things grew especially worse after we moved her out of her house, I believe that we had only seen the tip of the iceberg before.

The last few months were especially hard to endure for everybody. Starting in November Mom kept crying for her Mummy for hours, being inconsolable that her mother wouldn't come and get her. About a year before her death she did not recognize us any more. But while she still remembered faintly that she knew us at first, this capacity totally went away in November. At the end, she "unlearned" how to walk and to talk, so that we could only get in contact by touching and caressing her.

I think that is maybe the worst part if your parents are ill with LBD: Not only do you have all the responsibility, but you eventually become your Mom's mother.

Again, thank you for setting up this website and good luck to everybody who's affected by LBD. Let's hope that the experts will soon find better ways to deal with the disease than there are now.

A., Germany

Story 3. Received: April 11, 2007


I just found your web site yesterday. It's very helpful to have stories that are so similar to our own. ...

My dad's story is really more of a nightmare in medical mismanagement, which is continuing to this day. He is a veteran, and a VA doc told him a few years ago he had some "dementia". No workup was ever done, and the Dr. told me the new Dementia drugs had many side effects and little improvement, and would only prescribe if I insisted. I didn't. Looking back, I wish I would have found a Geriatrician who would have done a full workup.

My father went from living independently to now being in a Mental Health ward at the VA hospital. He was driving last June. In an Assisted Living in February and now in a lock-up.

I finally figured out that he has LBD myself, after a friend whose mother had it suggested I look into it. My dad has 100 percent of the symptoms profiled. Clinching it was the haldol they gave him sending him into a terrific Parkinson's episode which nearly killed him.

It's been a nightmare of the wrong medicines, physicians who never heard of Lewy Body, and a VA hospital that has ignored his Advanced Directives.

What is most frustrating is that I am a professional nurse — I am the Administrator of a Home Health & Hospice, spend a lot of time teaching and sharing — and find myself having more problems than if I had known absolutely nothing. I spend nearly every waking moment advocating long distance, trying to keep up with my job and home too. ...

I must add that without the faith I have in the Lord I could get nowhere, and He has certainly been with me throughout.


Story 4. Received: April 12, 2007

It has been another tough day. It's late and I have just returned from visiting my father in the hospital. It's very difficult to watch my Mother lose her soulmate.

My father started to really "slow down" about 2001. I noticed it first when his arms didn't swing. He started to really hunch over. He always had vivid "dreams" acting out in his sleep. My Mother told me of the time he knocked the lamp off the table — his arms would wave. That was when he was fit, energetic and healthy at the age of 37.

Dad started getting confused shortly after his posture changed in 2001. My father was a school teacher with a geography degree; he was a very brilliant man. Then, our family would have to explain things to him twice (comparable to a person in a bar that can't comprehend after many drinks). His perception was off. There was and still is very little problem with his memory.

My sister and I watched my father decline. My Mother sheltered him; she was in total denial. He went to the doctor who gave him an antidepressant, and racked it up to old age, or "mini" strokes.

As his disease progressed, more confusion, incontinence, loss of bowel control, my Mother agreed to take him to a Neurologist where he was diagnosed with Parkinson's Plus. I don't think my Mother really understood what the "plus" meant and what would lay ahead for my father. He was in rough shape.

He was given Levodopa in September of 2006. Almost immediately he improved. It was a miracle to see. He was joining the conversation again, walking outside for romantic strolls with my Mother. Our family was so very happy, things were back in sync again. We had a big Christmas, my father watched as his grandchildren opened their presents, we had a house full of family, friends and kids.

By the second week of January 2007, it's as if someone turned him off. His rigidity worsened, his speech and communication failed, he was back to being incontinent, his cognitive function declined. He began to hallucinate. The drugs had lost their effect.

In March of 2007, I got a call from my Mother's best friend. She had checked in on my parents condo, and things were not well. My Mother was sick. She had looked after my father until she became so sick that she was in bed herself with fluid in both her lungs.

I called my parents' doctor and explained that both my parents were sick with chest problems. I admitted my father into the hospital. I went back to my parents' condo and waited for the doctor to do a personal house call. My Mother has heart failure, so she is very prone to lung infections. The doctor ordered a heavy duty antibiotic and plenty of rest.

My father was cared for in the hospital, and he continues to be there now. He has declined so quickly. It's as if "pure evil was cast upon him, in the most wicked of spells." The doctors have tried different combinations of drugs, but nothing seems to have an effect. He has his bad days and then his really bad days.

Now, he sits in a chair, leaning over, strapped into a belt talking to people that are not in the room, in a very soft whisper. My parents had travelled and lived all over the world, so when I sit with my father now, I hear all stories of different places and timelines. It doesn't really make sense, but it isn't total blather either. My father understands much more then he is able to communicate out!

He then looks up at me in the most sober, concentrated effort, and asks if I would drive him home. "I'm tired and I just want to go home to my own bed."

It breaks your heart, knowing that you can't fix this for him.

He is now at the stage where he can no longer walk, he has bed sores on his feet, he is having difficulty swallowing, he has lost so much weight and muscle mass.

The nurses are good to him, but there just isn't enough of them in the hospital. We are waiting for a bed at the nursing home.

I have been reading as much as possible on Lewy Body Disease, I printed out some brochures and information and gave it to the nurses on my father's floor.

I am working on an article for a magazine that I work for. I would also like to set up a foundation to create awareness of Lewy Body Disease, and concentrate on drugs that are more specific to LBD instead of Parkinson's or AD.

One step at a time. I am not sure how long my father has left, but I want to put all of my efforts into him that I can. It breaks my heart seeing him go through this awful disease, but I have noticed that the hallucinations do not seem alarming to him.

I've made some observations on LBD and would appreciate any help that I could get. My father was born in England, and I have just found out that his sister has dementia, but we do not know what kind. Could be AD. Most of the people that I have read about that have LBD seem to be intelligent, fit individuals. I wonder if research has been done on genetics for LBD.

It helps so much to read everyone's journal. If it wasn't for this website, I would not have been educated on how to look after the best interests of my father.

Thank-you all so much.

J, Ontario, Canada

Update received: May 5, 2007

I am very sad to hear about your father's passing.

I wish our parents could have had one more dance, one more trip, one more country drive, one more day to tell us another story.

My sweet father passed away on Wednesday. He was 78. He had done his best with his fight against LBD.

Our last words a week before he died will last with me forever. I embraced him with the biggest hug, and told him, "You were the best Dad a person could ever want." He replied to me in a soft voice, "You were a good kid, J, a good kid."

J, Ontario, Canada

Story 5. Received: May 5, 2007

I am late in finding your information, but would like to extend my most sincere sympathy to all who have or are suffering from the effects of Lewy Body Disease — not only the patients themselves but the caregivers, relatives, friends and acquaintances who have been or are involved. Also, let me offer my deepest admiration for your journal. It is wonderful that you have taken the time and energy to provide this service.

My husband of 51 years died in October 2006 at 80 after a number of years of various diagnoses (Alzheimer's, Parkinson's, Normal Pressure Hydrocephalus), medicines, and treatments before Lewy Body Disease was determined to be the probable cause of his movement problems. Although there was some dementia, it was not pronounced, especially after some of the medications were changed or stopped. This may have been unfortunate, because he was aware of what was happening to his mind and body and suffered from being so inactive and the resulting depression. He had been both physically and mentally quite active until the last two or three years, regularly visiting museums, reading, attending plays, concerts, etc., playing senior softball, bowling, even volleyball twice a week until the last year. In his final year he had to be hospitalized and then sent to a nursing home since he persisted in trying to do things by himself and fell a number of times. Our home was not and could not be adapted to care for him properly. In the nursing home, despite having had the vaccine, he developed pneumonia, which was considered the cause of death.

I have been amazed that there is almost no public knowledge of this disease and less knowledge than you would expect in the medical field. When our doctor recommended that he go to the National Institutes of Health, I had some hope; but, they advised me that there were no studies being done there. I then took him to the Maryland Parkinson's and Movement Disorders Center in Baltimore, where I was told that his was a degenerative disease about which nothing could be done other than what was already being done for him — keeping him as comfortable as possible in a safe environment, while trying to bring as much pleasure as possible through music, reading, and television which permitted him to enjoy sports as well as other programs.

Thank you for allowing me to write to you.

P W (Mrs. JPW)

Story 6. Received: June 11, 2007

Dear Lewy Buddies,

I have printed out every word of this site twice and have distributed kibbles and bits to my husband's brothers and have left various stories in my husband's bedroom so they can all be prepared for all that is sure to come.

I thank everyone for their experiences and willingness to share. For those shy about sharing, let me say that it is the little puzzle pieces which have been "thrown in" that have been the most reassuring, and welcomed. The "weird" is that baffling part of the disease, and each time someone has added a bizarre bit, I have highlighted it as I have read. It is easy to cross-reference when it is time to go to another doctor appointment to add new behaviors.

The very first story I read from the site was from a woman whose mother was in Fort Myers, Florida. That is where we live so I could readily identify with the woes of finding the right doctors. We were fortunate that the first doctor who did the mental tests nailed Lewy Body on the first try. However, the prescribing doctor was a real jerk and so we sought another neurologist, but firmly hung on to the Lewy Body diagnosis.

Finding your site then was pure gold to match symptoms and behaviors. It has made it less frightening when we had to deal with "the kids" in the house, and the appearance of the deceased husband and parents of my 81 year old mother-in-law.

Another wonderful suggestion from the neuropsychologist's office was the book "Validation Breakthrough". It has helped me be able to ride whatever ride my m-i-l is currently on, and communicate at the same speed. Only once was the roller coaster (out of left field) too fast for me to jump on. That morning I cried all the way to school, stopping at an assisted living facility to be put back together before having to face middle-schoolers all day.

Every conversation contains a puzzle piece, I have found, and we are slowly completing the borders of our picture. The other middle pieces are coming more slowly as we see more and more of the picture.

What has prompted me to write this day is that my mother-in-law picked up the 50 page journal and has been reading it for two whole days. It has allowed us to have some good conversation about the future. She is reassured that she is not going crazy and that tomorrow may be better, or worse, than today. The journal gives us hope that we can cope with whatever comes knowing we are among Lewy buddies all over the world.

Our milestone clue was Millie's (mother-in-law abbreviation, not her name) inability to balance her checkbook. She had been the bookkeeper at the electric company for over twenty years, handling payroll and accounts. It took great courage for her to admit to her middle son that she needed his help with checkbook math. That was several years ago.

Millie's favorite sister died three years ago and when Millie was coping poorly, we attributed weight loss and befuddlement to grief. Now we know we were seeing the Lewy Body peek-a-boo signs. I guess it is nice to know you probably have several years without a diagnosis under your belt when you really weren't worried about the rotten future that Lewy Body holds.

Millie is down to 103 pounds from a lifelong 130, or so. She has lost the ability to heat things on her own in the microwave, as the buttons baffle her. On occasion she has forgotten where to turn off her heat and A/C. Several nights she has asked me which room she should sleep in and we have had a recurring theme of "this is not my house" and "when are we going back home?" I have told her I would be happy to take her "home" if she could tell me where that might be. She then is able to remember that her parents and siblings are all gone and that her childhood home is not really her home. She calms down when she is able to reestablish her location.

We have had "a man sleeping on her sofa" and "kids that are not here, that need to be found". When she is asked their names, she can never come up with them and sometimes I tell her that I took the kids to school with me in the morning. She has confabulated train trips with the kids and trips to the store to get things that the kids needed. These confabulations have not been frightening in nature, so far.

I am the d-i-l (daughter-in-law). We live less than 50 yards from Millie and I have chosen to spend nights and weekends with her for the past few months. I figure every day we can keep her in her home is a comfort to her. I have to set out her pills, warm her a prefab sausage, egg and cheese biscuit before I go to work, and leave snacks and leftovers in the fridge for her to eat while we are at work. Left to her own devices she would survive on cookies and ice cream. Because she has lost so much weight and her sugar seems to be fine, we are delighted that she can find satisfaction with such high calorie choices.

Now it is summer and we have to make new decisions for the fall. She has gotten very possessive of my presence, and often greets me at the door when I come home from school, with "I am so glad you are here!" She does best in her own environment and even if she wanders, the only place she goes is to our house next door to sit under our stilt home to watch the boats and kayakers go by. Her back bothers her if she is on her feet too long, so we do not worry about her walking up the road to where traffic could be an issue. We have dogs who are penned up during the day, and they provide some stimulation for her, besides warding off any strangers who might drive back our dirt road to our homes. She remains afraid of the water and never goes near enough to the river to fall in.

Millie is on Lexapro 10 mg once a day for depression, Razadyne 12 mg twice a day for cognitive functioning, I think. And we are weaning her off Amitriptyline with 25 mg at night. We also give her Omega fish oil, CoQ10, Vit. C and E. The CoQ10 and fish oil have helped a lot. The vit. C helps with her immune response and the E is good for her skin. She has probably suffered some stress fractures of the spine and cannot stay on her feet for extended shopping or outings. She still loves to eat out, and although by her own admission is the slowest eater in the world, it stimulates her immensely. We share an entree as she does not eat huge amounts anymore. Her middle son usually spends Wednesday nights at her house so she gets to dine with him, and it gives me a night to sleep in my own bed.

It is very hard on my husband to be mistaken for his dad, and hubster avoids his mother to avoid the pain for either of them. We are right next door, and he is available when she takes walks for a change of scenery.

She has taken up with my Chihuahua and cares for her like a baby. They eat, sleep, and watch a little television or read together. Chia has figured out the beggin's are great at Millie's and tolerates the smothering of being the baby.

Millie does not remember the times she has forgotten things which I feel is a blessing. I am glad she has read your journal while she still can. I would never have thought she would want to read it, but she is compelled to complete it. I know she will soon forget what she has read, but she has opportunity to express thoughts and feelings about her disease for a brief time.

In trying to describe Lewy Body to my students and to Millie as well, we talk about flakes of pepper traveling in her brain. If they do not settle in too thickly, they seem to move along and we have better times. Eventually, we know the Lewy Bodies will take root and the damage will be irreversible. I believe this migrating is the reason we all have such different stories. I know if the cerebellum is ravaged that falls and the inability to read will surface. Knowing there are pluses and minuses to every location, at least we are not expecting a cookie cutter pattern. Each case is different, and for that reason, harder to anticipate. It gives me peace that it will be "what it is", and that we will deal with wherever our Lewys latch on to.

My granddaughters are 5 and 4 and a half. Millie is mentally about at the same stage of reason. As the girls grow more independent, Millie is growing more dependent. Millie tries to engage any children she sees when we are out, and frankly, they can have a pretty decent conversation. It is wise to expect this decline back to childhood in figuring where you are now. Reading in the baby book what 3, 4 and 5 year olds can do, you can sort of keep pace with how the Lewys are proceeding.

My husband has an appointment for a baseline cognitive functioning for himself. If there are genetics involved, he wants to be proactive in preventing some of the eventualities. There is Parkinson's on both sides of his family tree, so he knows he should be on the lookout. ...

Without this site I would only have a clinical definition of LBD and a hopelessness in the isolation I would otherwise be surely feeling. I hope others will contribute so those in Lewy Body Caregiver Limbo can gain knowledge and understanding of how this disease, and our reactions to it, play out. To all Lewy Body Buddies, published, or not, I share your grief and frustration, and look forward to your continued support as we both travel the treacherous trail of LBD.

Godspeed and compassion to you all,

A humble caregiver

Update received: June 15, 2007

We have developed a urinary tract infection and declined drastically in just a day or two. I am trying to stay positive as she now wants to go live with her deceased parents and says we haven't been taking care of her in her own house.

We will probably go to a nursing home from the hospital as the reality of keeping her in her own house is rapidly disappearing. ...

I am ready to call Hospice, even though it is probably premature. It seems Millie (not her name, MIL for mother-in-law) is ready to seek green pastures, and I don't want anybody to stand in her way. I would hope my family would have this same attitude if I get into the same shape. I just don't want people to think I am being cruel taking this position. Truly,if she were one of our beloved pets, we would know that the time to put her down would be drawing closer. It is sad that we can be more compassionate with our furry family than the ones who have real skin.

I am just the daughter-in-law, so it will not be my call, but I will have the courage to support those who choose the most humane route for a woman who is clearly mentally ready to give up her ghost.

Thanks for the space to be real. Love to my Lewy Buddies,

Millie's daughter-in-law

Update received: June 23, 2007

LB Buddies,

Millie has kept us going the past two weeks. We have done all the necessary things to get her into daycare while we both teach school. We had a durable power of attorney for her, but it did not include medical. Trying to get a new form signed and notarized was a real challenge. She was in the emergency room last Friday because we thought she had had a stroke. She didn't know she was at home and complained the help didn't bathe, dress, or feed her, and that if this was how it was going to be, she'd rather go back to her parents' home in north Florida. They are long deceased!

Now Millie has never required help other than checkbook, meds, and socialization. This was totally out of the blue. We called the doctor's office and he said to go to the emergency room, although there was no rush. She needed to have the health department read her TB skin test on that day, or have to have it redone another time. We were assured keeping the appt. to have it read was important. Any elder facility in our state requires a TB test.

Within the hour she was pretty much normal and we took her to lunch, then to the health department, and to the emergency room. She bathed, dressed, and put on lipstick for the outing, all by herself.

After jumping through every last daycare hoop, we were ready to sign the contract. We did check into a sitter at $20 an hour, minimum 2 hours, and thought it would actually be easier for someone to come in and not have to fight the dressing game before work each morning. Daycare had been quoted to us at $66 a day, but had recently jumped to $104. But as quickly as we thought we even had a choice, a new wrinkle! Millie turns violent. Millie was trying to kill the Chihuahua we allowed to sleep with her. She went after our other dogs with a 2x4 after we drove out the driveway. My husband decided to turn around, just to check on his mother and she was trying to smash our car windows and to get to the other 5 dogs. She had a look on her face that was new to us. Enter Mrs. Hyde. Dr. Jekyll had left her hemisphere.

We called 9-1-1 because she was so irrational but they didn't want to take her because she actually knew the day of the week and where she lived. They could not Baker Act [Florida law calling for mental health evaluation] her under those conditions. We had two deputies in two separate cars, a fire engine, and an ambulance at our house for over an hour.

My husband got the psychiatrist on the phone and we talked fast and furiously. Eventually the psychiatrist called the sheriff and insisted the deputy transport her to the hospital, whatever it took. That being settled, Millie then decided to get into the ambulance voluntarily. We figured this was more kidney and UTI related, so we assumed there was a "get better" in the cards. After running all the tests, we are informed that the infection was all but cleared, and so now we are facing the reality that it is no longer feasible to allow her to live in her home, or for me to sleep over there, now that the violence had surfaced. So, put all your plans away, and make arrangements for a nursing home with a dementia unit. We knew a hospital stay precedes an admission, so we are now making arrangements with the social worker 'on call' for the weekend. So far we have one doctor's note indicating incompetence, and surely someone at the hospital will give us note #2.

The home they are suggesting is two towns north of where we live. Tomorrow we will get serious in tracking down our options. To go from a casual sitter for two hours a day to a full blown dementia unit in 8 hours' time is Lewy!

We are afraid to transport Millie ourselves because she can get violent, and has so much strength for 102 lbs. of skin and bones. We know she could break a hip easily twisting and kicking to avoid being taken anywhere. We called 9-1-1 to establish a paper trail like we were taught in foster parenting classes. We don't want to be accused of abuse, and yet it seems so silly to have to involve 8 adults into all of this to transport an 81 year old Lewy lady.

We gave her a cold soda but she couldn't get it open, so she used it as a threatening weapon. How sad to know she desperately wanted a drink, but she was too oppositional to let us give her one. Had she been capable of killing me yesterday, she would have. She believes I am a real tramp and have slept with every man in town. I apologized to the doctor for not giving him his turn. He laughed, knowing our frustration. I am three separate people to her. I am her caregiver every night, her son's wife, and certainly not the mother to her grandchildren. She has talked badly about one of me to my face and wanted to know if I knew this other harlot. I explained I knew her, but that we didn't get along well.

When my 32 year old son called me "Mom" in her presence, she wouldn't believe that he would call me that. She didn't know they knew the woman who gave them up (didn't happen) would be a friend to them, and even be called "mom". If this confuses you, you read it correctly. Lewy, or looney, is just that crazy. So even though I spent the most time with her, and tend to all her needs, I am not recognized, and might even be worth killing.

The deputy said to get all the sharp knives and other objects out of the house. That is why she is going to a home next week. If we had ever had to restrain her, I believe I would have bound her hands with pantyhose to avoid injury. One has to think ahead, just in case. I guess Millie left her home not knowing it was the last she would ever see of it. Fortunately, eventually, she will not remember it anyway.

Things I read in other people's stories are coming true, even if how they happened were unexpected. One of the nurses said that Lewy Body patients eventually all turn mean. It is what it is, but it helps me take it less personally.

So, here we are at yet another fork in the road. Lewy Body seems to be a huge maze of forks. I will get back to this letter as we choose the path of least resistance, or the safe one, for sure.

I am so glad all of you Lewy Buddies are out there! I am assuming you are all listening, and learning, and sharing. I assume the roller coaster will pick up speed any time now, but I know the final descent will be hard to recognize.

Story 7. Received: June 26, 2007

My story began about 3 years ago when my husband's behavour changed. He would get out of bed at 2 a.m. to have a shave and was quite aggressive when I asked what was he doing. There were other signs of confusion and I knew something was wrong. I didn't quite know what to do about it so spoke to our GP telling him of these strange goings-on and that I thought his memory was also a problem. He made an appointment for him to attend a memory clinic and also an appointment to see a Neurologist. Fortunately the doctor we saw at the memory clinic was the Neurologist whom we were to see at a later date, privately. After several tests the doctor said he was sure he had Parkinson's, one clue being his gait. We continued to see this doctor at his private practice where he told us it was Lewy Body but could not confirm this until after his death. After reading much about this disease I am sure this to be the case.

His medication started with Exelon, I think for the dementia. He sometimes has a reaction with vomiting which I am told can happen. He was having trouble at times eating, unable to hold his knife and fork and freezing up and in danger of falling. One day he went for a walk and had a fall which resulted in facial injuries and ended up in hospital. A witness told me he was galloping; he says the footpath became very steep and he could not stop. The footpath was not steep. After this incident the doctor prescribed Madopar for the Parkinson's. It has made a huge difference to his mobility and I feel the disease has slowed down. I don't know what the future holds but I am making the most of his well being. One problem is he has an urgency with his bowels and the doctors have no explanation for this, I am more afraid of the embarrassment this may cause him.

Y.H., Australia

Story 8. Received: June 28, 2007

Thank You everyone for the support. I am an only child. My mother was diagnosed with LBD 7 months ago. The Doctors feel she has had the disease for 7 to 8 years and I tend to agree. We buried my dad last year. My mother and father were married 54 years. My Mom was my dad's primary caregiver. God bless her she did this job well. Once dad died, this disease moved much more rapidly. I let my Mom live in her home up until 4 months ago. I would not let her cook. She has not been permitted to drive in 2 years. She and my father actually lived with me for 8 months while I had a house put up next door. Dad was under Hospice care. He passed away in his new home. We all knew something was wrong with Mom. I can look back through family photos and see when my Mom stopped smiling and her face became expressionless. I kept telling Doctors my mother has dementia. But my Mom was a brilliant woman and had been a registered nurse for 25 years. She could talk her way through any DR. appointment. Those mini mental status tests, I think she was better at them than I was.:)

Four months ago our luck changed. My Mom was putting herself in the tub at 3:00 in the morning and could not open her front door. She was hallucinating more. She was starting to fall more often. My husband and I made the decision to move her in with us. Of course she wanted to move everything from her 4 bedroom house into my fully furnished house and that was not going to work. I inherited another dog on top of 3 others. She was very confused when she got here. She kept calling my house upstairs and her house downstairs. You have to remember they were right next door. Then she could not understand why we could not move her kitchen over here and put my kitchen in her house. Then she started hoarding everything in her room. But not only her things, our things as well. This went on every night till midnight or later. Mom would walk the hall with piles of papers or clothes and move them all over the house. One night my entire pantry got cleaned out. I am still looking for everything.

About 2 weeks ago Mom got really bad. She thought she was living in an adult care facility and that we were charging people. But it is only my husband, my Mom and I that live here. I have a nursing agency that we bring in if we have to go to Doctor appointments. I had hired them for 4 hours Tuesday morning. The previous Monday night my Mom kept waking up and she would be standing at the end of my bed. I asked her if she needed to go the the bathroom; she said no. I walked her back to her bedroom. She said she did not want that bedroom anymore. I offered her the other bedroom; she did not want that one either. I finally got her back in bed; this went on all night. The next day my husband and I went out to run our errands and my Mom hallucinated and got delusional. By the time I came home,she said my husband and I and the nurse had been killing people and burying them in the yard and selling bloody sheets in a flea market and that cats with crowns were running through my house. She was out of breath from fighting people off that she thought were trying to hurt her. She went into my family room and was thanking all the elderly people that really were not there for helping her fight. I started crying because she told me I was going to jail and that I was not her daughter and that she did not want me. I tried to hug her; she pushed me away. I called the Neurologist. He said to take her to the hospital and we did and they Baker acted [Florida law calling for mental health evaluation] my Mom and they kept her for a week. I found an adult care facility that is beautiful. It is a home, 5 people live there, it is for dementia patients only. So I got the hospital to release her to the facility, as they have a Dr. on call 24 hours and an RN there. But I can't stop crying. Because I honestly thought I would be able to take care of my Mom at home until the end. But when this all happened there was no way I could take care of her. I could not get thru to her and I know it is the disease. But it's so hard when the disease is inside the face that you love.


Update received: August 31, 2007

I feel as though you all have become part of my extended family. So I want to share my last 8 days with you. My mom checked into Hospice 8 days ago. I checked in with her. They are all so wonderful there. She drank 2 glasses of water the first day. 2 sips the next day and that was it as far as any fluids. The 3rd day I talked to mom quite a bit. She did not make much sense but she was saying lots of funny things. She kept the day upbeat. Then it went downhill. She stopped talking and went to sleep. Mom slept peacefully for a few days. Then she filled up. That went on for 3 days. She did not seem to feel it. I think the family feels it worse then anyone. The doctor said that dementia patients hang in longer then most. They are not sure why. It seemed like forever. Mom had fluid coming out the side of her mouth and they kept suctioning her. Her battle ended tonight. She went home to be with the Lord and be where angels belong.

Thank You everyone for your support and my prayers are with you and your families.


Story 9. Received: July 6, 2007

Dearest friends,

Your website has been so helpful to me and thereby, I think of you as close friends. I thank you for sharing your story and now I feel compelled to write our story as a warning to other people who are encountering LBD.

My love of 36 years was misdiagnosed with Alzheimer's in 2001.

In 2002, he fell and needed an operation to repair the ligament to his knee; nothing major: it should have been one night in the hospital. Apparently, to reduce the pain after the operation, a doctor of New York Presbyterian gave him a valium or something related. The night after the operation, he started hallucinating. The next day, his cardiologist thought it was alcohol withdrawal and put him on Ativan. (He was not an alcoholic, and although he enjoyed wine with dinner, he had gone days without alcohol previously without any withdrawal symptoms.)

Immediately, the hallucinations and delusions erupted. Since he did not stay still, they could not do a scan, so they gave him every psychotic medication for Alzheimer's, schizophrenia, encephalitis and epilepsy. His condition continued for a month without getting better. A pharmacologist was called in, and he was taken off all the medications and placed on a whole new array including Librium. His condition stayed the same for another month.

Luckily, the insurance company refused to continue to pay the hospital as they were not making him better, and he was sent home, where he was weaned off the medications. After another 6 weeks, he was off all the meds and was almost back to normal except for the Capgras Syndrome (where a person thinks that everyone or everything is a copy of the original). After 4 months, he was back to his own self. BEWARE of doctors' ignorance of Lewy Body Dementia.

If the neurologists had asked me about the lack of spatial cognition (he thought I was always driving too close to the car in front when I wasn't) or the violent nightmares (one night he sprang out of bed to avoid a bus in his nightmare and made a huge dent in the wall or he would punch in the air fighting an attacker — our schnauzer stopped sleeping in the bed), we would have gotten to the correct diagnosis earlier. Unfortunately, no one asked and I did not know of LBD. When the neurologist finally suggested LBD and I read about it on your wonderful website, everything finally made sense. Thank you!

It is seven years since I noticed something wrong. I thank the Aricept commercial in 2000 for making me aware that it could be dementia. He still knows who I am and who he is; there are moments when he seems almost lucid. When his blood pressure rises way up, he can almost get up by himself and walk a few feet (before falling). Thankfully, he sleeps through the night usually. He has his appetite and can still eat steak, etc. although he must be fed, and washed, and changed. After all this time, I believe he still has his personality and memory inside, and if there were the miracle pill tomorrow, he could return from this mental limbo.

At the beginning, I did not want the illness to be prolonged. Now, I cherish every day with him; at least he is alive and I can say "I love you" and sometimes he gives me a kiss or a smile. He is not suffering now. He hallucinates good times with old friends. He talks a mile a minute and even carries on business dealings. He has no trouble breathing when he is on his side (although he makes horrible sounds while sleeping on his back). And when he cries, he usually thinks his mother or father has just passed away. He is, now, unaware of his illness, and has almost stopped battling with his daytime aide.

I read what you went through with your mother, and my heart goes out to your family. However, you have prepared me for the future, and for that I will be eternally grateful.

All the best, R

Stories, August - November 2007
Stories, August 2006 - January 2007
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