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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, August 2006 - January 2007 (11 stories)

Story 1. Received: August 9, 2006

Mom just 2 yrs ago kept a clean house and could drive. Now she lives with me and it's nothing to find pictures in her drawers and bananas in the refrigerator or cabinet. I cry for her almost every night. I can convince her that there aren't horses in my kitchen and that no one is living in my car. I don't want to put her in a nursing home because I know she won't last long. But this is really killing me. I feel like she hasn't been my mom for almost 3 yrs. I am worn out and I have no help, esp $. She doesn't know that she's very ill. I can't work; I can't leave her alone because I am afraid she will get scared. This has to be the worst possible death that there is. Not only is it killing her, it's killing me. I am willing to do anything, ANYTHING to help fix her. She's my mom and I love her more than she will ever know. This is absolutely killing me keeping this secret from her. I thought, "Well, this isn't about you," but it is; I am her and she is me. And I am scared that I inherited it.

Story 2. Received: September 12, 2006

My husband, J, is in the hospital right now. The hospital seems to be giving him adequate care, although I don't think they understand Lewy Body. They act like if they give him walking practice then he's going to be good at walking again. He walked with a shuffle while still walking. Had a severe stoop. Sees animals and children much of the time.

The thing that makes me so sad right now...along with his suffering, is my total impatience with him. Well, not really total, but I'd argue with him way too much, even when praying for patience each night. He'd ask where something was, and I'd tell him, then he'd come back without it. I'd ask him where he looked, and he wouldn't have looked where I said. I'd say for him to look in the spot I just described to him. And he'd say that my directions had been inadequate. I'd reply that they were not, and I'd end up screaming at him. Then he'd cry and so would I...sometimes. Other times I'd stay mad for a while. He told me that he couldn't go on living with the tension that I created for him.

During his life he was a wonderful man, although very controlling. He has always been kind of obsessed with our financial situation. We had 5 children. And he was always stressed that we'd run out of money. Yet we have indexed annuities and the children are grown and are prospering. Right now he is still babbling some about money, although it is increasingly difficult to understand him. He talks without opening his mouth, although he can when really, really motivated.

He was just in the nursing home, but they said due to excessive fluids through IV's, that he developed congestive heart failure. So that is why he is in the hospital now. They are giving him diuretics in the hospital and have a catheter for urinating. He is not swallowing, eating or drinking at all. He hits out at the nurses and aides and they have big, bear-like mittens on him.

We're supposed to have a conference at 3:00 PM this afternoon. They don't want to keep him in the hospital. I would like to have him home with hospice care and other support, but don't know how to get it set up without costing me a fortune. Nursing care, around the clock, is over $500 a day!!!

He also has a PIC line because he has a heart infection. His valves leak and an infection settled on his mitral valve. He also has recurring pneumonia. Right now they said he has pneumonia in both lungs which they are treating. His mouth is cracked and dry and there is a coating inside it. He is wearing an oxygen mask some of the time, and at others just the little nose piece in his nostrils.

The hospital wants to send him back to the nursing home, but they aren't able to give him the close attention I think he needs. Yet they are able to do better then I can...without help. The other day he fell at home, and I couldn't get him back up. Nor could he lift himself. He is 74. I am 71.

Do you have any suggestions? I would greatly appreciate it.

Sincerely,

IM

Updates received: September 24 and October 8, 2006

Thank you for your response to my letter. This is what has happened to us. We considered in-the-home hospice care, but our children felt it would have been too much of a strain, so we ended up putting J, my husband, in Porter Hospice. It was a lovely place with such warmth and peacefulness. He was there just a little while, and then he died this past Tuesday night, Sept. 19th. All of our children, some of the mates, some of the grandchildren made it to say "good-bye". We believe he was aware, although he hadn't talked in several weeks. His passing was very peaceful. We had beautiful music playing all day in his room, and as he began his final journey.

...his final hours would have been so different if he'd still been in the hospital or the nursing home. The few days in the nursing home had felt chaotic. There was a man in the next bed just a few feet away with his TV blaring. There was noise constantly in the hall. There was no peace there.

The hospital was better, but we often waited for half an hour or more for pain medication when he began to show signs that he needed it. The hospice was so quick to bring him relief. While the hospital nurses were compassionate, they didn't have the tenderness of the hospice nurses.

Story 3. Received: September 19, 2006

Just a quick thank you... your site continues to help my family deal w/ my dad's LBD. He was diagnosed this past March, at the ripe old age of 64! In July, he was hospitalized w/ severe paranoid delusions and hallucinations. After a month-long stay (trying to get meds leveled out) it became apparent that Mom could not bring him home, so we placed him in a dementia unit of a nursing home. He declined VERY rapidly. After two weeks, his mental status had gone down so severely they sent him to hospital. After IV fluids, it was like a miracle. We have since determined that he was neglected. We continue to be frustrated by the amount of "professionals" who have no clue what LBD is or how to treat the patient. My dad can't verbalize his needs, nor can he help himself. If someone is there to be sure he gets water, he remains OK. Unfortunately, as you all know, it is impossible to have an advocate with your loved one in a nursing home 24/7. Reading all of your notes helps me realize that we are not alone. I have also gained insight and valuable hints from others' past experience. I continue to read your new entries, and thank you from the bottom of my heart.

K & J Q
New Jersey

Update received: October 24, 2006

Dear LB Journal,

On October 16 my father's suffering ended. Thank God, and thanks to all the prayers of friends, family and even people we didn't know. He died peacefully. Unlike some of the others' stories that I have been reading, his was a relatively short duration from the time he was diagnosed to the time he passed. It was only seven months. Though, one day enduring this horrid disease is too long.

I continue to be amazed by how many in the medical world have no clue what LBD is, or how to treat the patient and family. Because my dad's decline was so rapid, we had to place him in a nursing home, at the age of 64. Because they had no idea what they were dealing with, he was denied hospice by his doctor, who said, "He could live 8 years"! Though his advance directive was quite clear and concise, because the doctor felt he would live so long, we were forced to allow them to treat pneumonia, and one week before he passed, we had to allow them to debride a decubitus that due to their neglect got necrotic and completely out of control. Finally, the surgeon who did this procedure offered to give the order for hospice. Unfortunately, he passed away the night before it was to begin.

All I can say is thank goodness his pain and torture is over. On the flip side, though, I feel like the medical world needs to be made aware of this most horrible disease, and medical professionals need to be held accountable.

Keep up the wonderful works that you are doing... just having a place to go and read others' stories has helped.

K & J Q

Story 4. Received: October 3, 2006

Hello,

I found your site yesterday after searching on the net for Lewy Body Disease and want to thank you for making this information available and to express my sadness for your loss. My mother was diagnosed with Lewy Body Dementia last week she has just turned 69 years of age. As hard as it is for me to read your journal and know what the future might hold for my mother, it is better to be prepared and the information you have provided will guide me as I help my mum in the coming years.

Mum's story began with a severe psychosis back in Feb/March this year. She lives on her own in Sydney and I live approx. 10 hours' drive away from her. Mum became paranoid about her neighbours, suspecting them of trying to harm her, of listening to her phone calls, amongst other things. She even called the police at one stage when she believed the neighbours were planning to hurt her. It was difficult from a long-distance phone call to know what was real and what wasn't, but as the problem escalated I encouraged her to visit her GP and seek counselling, believing she was suffering from anxiety as Mum does have a history of depression and anxiety over many years. She was sent to hospital where she was "scheduled" in the psychiatric department and held for about 8 weeks. She was discharged home with a diagnosis of schizophrenia and treated with Risperidol, both by injection and orally, with a community nurse to visit her each fortnight to administer the injection and monitor her progress.

Whilst in hospital and immediately afterwards I was concerned at her rapid personality change. Mum withdrew into herself and seemed unable or unwilling to engage in any conversation, answering with 'yes' or 'no' to most questions. The psychiatrists told me this was a depression which is part of the schizophrenia and common after a psychotic event. Over the coming weeks and months her speech and movements became extremely slow. She stopped watching TV, reading and listening to music as she had always done. She stopped preparing and eating meals and experienced dramatic weight loss. Mum also began to "shuffle" when walking, and sit for long periods of time staring at nothing. I expressed these concerns to her psychiatrist and the home-visit nurse I believed the Risperidol was the cause of these changes. The psychiatrist did not believe the medication was the cause, however was perplexed and concerned by her symptoms. Eventually after 6 months at home she was again hospitalised, but this time under a geriatrician who immediately took her off the Risperidol and has now diagnosed Lewy Body Dementia. I can't say her condition has improved since then, although she does seem better on some days and worse on others. She has symptoms of Parkinson's (blank face, shuffling gait, slight tremor) which I am told is all part of Lewy Body. At times she is quite clear in her thinking but at other times she gets confused.

I want to alert people regarding an incorrect diagnosis of schizophrenia as I now believe my Mum's psychosis was actually the beginning of Lewy Body Dementia. I have now learned that people with Lewy Body Dementia are very sensitive to the side effects of antipsychotic medications such as Risperidol, and it was unfortunate that she was on this medication for 6 months. Mum is unable to return to her home and live alone, so I am now searching for nursing care accommodation near my home and will move her here as soon as possible so that I can spend as much time with her as I can. I understand that the road my mother faces will be very hard for her and those who love her, but I will take it one day at a time and try to give her as much happiness as I can.

JR, Australia

Update received: May 22, 2007

Hello,

I continue to return to your website regularly since I first came across it when my Mum was diagnosed with Lewy Body Dementia last year. It is a wonderful resource for me with information and links to other sites, but most importantly I can relate so well to all of the stories I read, so thank you for making it available for everyone to share.

I wrote to you last September to tell you how my Mum was incorrectly diagnosed with schizophrenia and prescribed Respirodol (an anti-psychotic drug) by a psychiatrist this was a disaster as she became almost catatonic and developed Parkinson-type symptoms, before being taken off that drug and diagnosed with LBD. Not long after that I was able to find a place for Mum in a secure high-care unit specifically for dementia sufferers within an Assisted Aged Care facility which is close to my home. Over the next few months as the drug wore off she gradually improved, but since then her confusion and delusions have increased, she has sudden and frequent changes in cognitive function, episodes of being mute and unresponsive and behavioural disturbances. At times she is more lucid than others, although this is short-lived, and although it is wonderful to hear her speaking "normally" for a little while, it can also be the saddest time for her because she seems to have some level of understanding of her circumstances.

The staff are very kind and caring, however nobody had heard of Lewy Body Dementia before my Mum arrived. I was very surprised that a facility with a specific "dementia unit" does not provide its staff with a basic level of education or information on different types of dementia. As a result there is a real lack of insight and understanding of Mum's behaviours and symptoms and in fact some of the staff think Mum is a "psychiatric patient" rather than a dementia sufferer. One nurse commented to me that Mum may need a "psych review" and that her behaviour may be "attention seeking". This is so far off the mark I really didn't know how to respond, but I do try to talk to the staff about Lewy Body so they can better understand Mum's symptoms. I also wrote to the Director of the facility providing him with a fact sheet on Lewy Body Dementia and asked him to share this information with his staff (not sure if this was appreciated, although he was very gracious).

Sadly it appears that in many cases the families are the educators when it comes to Lewy Body and we can only continue to do our best to protect our loved ones by challenging the establishment and hope that in the future other families may benefit from our experiences.

By the way, I recently asked Mum's new GP to prescribe Reminyl after I spoke with a specialist who said that he had had some good results in reducing confusion & delusions in LBD. Unfortunately we had to cease this drug after 3 weeks as Mum's delusions became more distressing for her, she became quite agitated and also had an extended period of unresponsiveness, so things definitely seemed to take a turn for the worse on Reminyl. Because of her previous bad reaction to Respirodol, I am reluctant to experiment with any other medication so she receives only the occasional Valium as required to relax her.

Best wishes to your family,

JR, Australia

Story 5. Received: October 7, 2006

Hi there.

I read your experiences with your mom and kept thinking about the symptoms you mentioned and early signs. My mother was just diagnosed with this unheard-of disease. I am quite familiar with Alzheimer's as my dad has late stages of that disease...so I never dreamed I would have the 2nd parent with this kind of dementia.

For a long time, I thought that she had hallucinations because I didn't visit her enough. She became clingy as you said too...and I thought that my lack of more frequent visits brought on such a severe loneliness that she became this way. My kids are 8 and 9 and didn't find much of interest with my mom. I moved her to a small apt near my house so the kids could go and visit all the time but because of this dementia even then she was not appealing to them and they only visited 3 times in a year. I myself found it hard to visit as she had nothing to tell us ... she just seemed confused. She began to tell us that the neighbour above was coming down from his apt into her bedroom at night. I showed her that there was no way for him to get into her apt but she insisted that he was there at night and that he wanted her out of her apt.

This was very disheartening as she had already been in 6 other apts where she had hallucinated about other people bothering her. One place, it was the neighbour making noise with dishes at 3 am; the next place was people purposely stealing her things; the list goes on.

I didn't know where to put her...and the money spent on moves...it became a joke within the family. We stopped filling out the change of address for the post office as we were doing 2 a year.

Well, finally, tonight I am told that she had Lewy body disease. Now it is all fitting together. Your website confirmed it ... along with the diagnosis. She is currently in a hospital recovering from a fractured spine which she got while trying to get up to go to the washroom at 3 am. She had to go constantly. She is awaiting placement for a nursing home...preferably in the same one as my dad.

She was more or less normal 4 years ago. I have never seen anyone deteriorate so fast in my life. I knew it was not just a normal rate of dementia. In one way, I'm happy that we have a name for this but I was very sad to see the life span and prognosis. I can't say I'm surprised.

Thank you for your stories. I now know that visiting her every day is not a drag. It is a privilege and I will go every day to spend all I can with her...and the kids with all their attitude, computer games, friends and reasons not to go can also spend a little time as well.

Godspeed,

M in Canada

Story 6. Received: October 13, 2006

Our mother has Lewy Body disease. She often calls for help when she is very anxious. This has become a nuisance to the staff and nurses and we have been asked to find another place for my mother within the next four months. She has been subjected to double doses of medication, as well as other patients' medications. The nursing home charges between R10000 and R13000 per month (excluding medication and nappies). My sister has taken a second bond on her house and my father has no pension left. My father lives with my sister. All children (three sisters and one brother) contribute, but this is not enough. The emotional impact on us all is relentless and sapping us of all our energy. We have not had a break for more than eight years.

In South Africa there is no structure in place to cope with Lewy Body, nursing homes are under-staffed and corruption, theft and abuse are rife. When one complains, the nursing staff take all their frustration out on the elderly person. We can only pray.

...my mother is one of five children. Of the five, three (including my mom) have been diagnosed with Lewy Body Dementia, and one is thought to have had Lewy Body. The fifth child was diagnosed with Alzheimer's. We (four children) have been advised to have ourselves tested for LBD. My daughter also has to be tested because an uncle on my husband's side has been diagnosed with LBD. This uncle passed away this year. He was diagnosed seven years ago. It seems as if genetics do indeed play a role.

A, South Africa

Story 7. Received: October 21, 2006

My Dad was misdiagnosed with Parkinson's disease in May 2005. He was put on an increasing dose of Sinemet, Exelon and Abilify until the hallucinations got so bad they became his reality. My Mom has retired to take care of him as of June 2006, and since we have taken him to a reputable neurologist, he has been properly diagnosed with Lewy Body disease. He now only takes a small dose of Seroquel, which has been a blessing. The hallucinations have all but disappeared, and his emotional state has calmed down tremendously. The physical symptoms are slowly entering the picture, but we try to keep him as active as possible.

My father went from being an extremely brilliant, active, working 69 yr old who could mow his own lawn, fix his own car, and build a stereo from scratch to a 70 yr old man who looks and acts like he is 90. It is unbelievable how fast this disease has taken over his entire being. The saddest part is he is smart enough and alert enough to know that something is terribly wrong, but there's nothing he can do about it. He also has severe sleep apnea, which can increase the cognitive problems of this disease.

I read your journal when the doctor first diagnosed my Dad, and I was so saddened by the story, but so grateful to you for sharing your experiences so others can learn from them. Bless you for being so generous with your private life. I see my Dad at least 4-5 times a week and help as best I can (luckily I only live 5 min away don't know what I'd do if I lived far away). My goal now is twofold to make his life as good as it can be for as long as I can, and also to document his life until now so I never forget what a great man he was and still is.

D
Indiana

Story 8. Received: November 4, 2006

Having just read your journal I would like to thank you.

My father died a month ago he had Lewy Bodies. My Mum was the first to notice that Dad wasn't quite himself and the family all put it down to old age. When it became more noticeable we all decided that Dad had Alzheimer's. We took Dad to a neurologist and he diagnosed Parkinson's as Dad seemed a little stiff and he walked with a stoop (Dad had always walked with a stoop!). Dad would forget who my Mum was, would often say that he wanted to go home (even though he was home) and would often remark that everything in this house was exactly like his own home. He suffered with hallucinations often seeing children and animals, and would think he was in the house on his own (even though Mum was there with him).

For 2 years the doctors kept saying that Dad was suffering from Parkinson's and in July this year it was confirmed that Dad was suffering with Lewy Body. For us it was the answer when we were told of the symptoms. At this stage at 78 Dad, although unable to do a lot of things, was still able to play badminton and bowls!! It was only due to a heat wave that Dad gave up his beloved sport.

Dad became stiffer and more rigid and Mum had to assist with most of his hygiene needs. She would often have to change the bedding a couple of times a night where my Dad had perspired so much. He also became a lot more agitated at night and would sometimes hurt my Mum. (My Dad was such a gentle man that we knew this was his illness.) He would wander out of the house and turn up at friends' houses which resulted in my Mum locking Dad in the house for his own safety. Sometimes Dad would be unable to move at all as his brain would not be able to tell the body part to move, and at other times he would be up and dressed within seconds. Dad found it difficult to eat the normal things and Mum would have to cut his meal up for him it caused him to choke.

At times Dad would supposedly have a TIA causing him to not be able to wake up, resulting in my Mum calling out the paramedics. He was also having stomach investigations to see why he was losing weight.

In October this year Dad had another TIA attack and he was rushed in to hospital. They, like previous times, wanted to discharge him that day as there was nothing medically wrong with my Dad!!! Eventually they agreed to keep him in and that afternoon we were told he had a chest infection. Sadly my Dad died 9 days later of pneumonia, five days before his 79th birthday.

It has been a difficult 2 years watching my Dad (an intelligent and active man) deteriorate with this awful disease. There has not really been the medical assistance he deserved and although I miss my Dad deeply, at least there is some consolation that he is no longer suffering.

Story 9. Received: December 18, 2006

My husband had been diagnosed with Parkinson's Disease about 6 years ago. He was on a combination of drugs including: Miraplex, Elderpril, Bensotrophine, Ryzadyne, Seroquel. In March he was diagnosed with Lewy Body Disease. He was doing okay until May 2006. He did however have severe hallucinations. When his walking, etc. went so down hill, we asked the neurologist if there was anything that could be done. He prescribed Carbo/levadopa 25/100 (3x a day). He also took him off of the Bensotrophine. Within three weeks, the hallucinations were gone. He plays golf and is doing so well. I have no idea how long this improvement will last. I wanted to share this drug regimen with you and to ask if anyone else is on something as detailed as this.

Story 10. Received: January 15, 2007

HI LBJ -

Great information, thanks for continuing to gather it.

My mother was diagnosed with LBD six weeks ago after spending a week in the hospital where she was sent by her assisted living facility due to overwhelming hallucinations. She has, however, been taking medication for Parkinson's for 4 years and had many LBD symptoms for many years as well (periodic loss of consciousness etc).

Since her diagnosis and moving to the local skilled nursing facility, she has fallen off a proverbial cliff. She has gone from running her own home completely alone, driving, shopping, to being practically bedridden and barely eating because of chewing difficulties within 5 months. I can't keep up with her level of functioning. For instance after eating just fine, two days ago she began to have trouble eating on her own and now she is on an almost liquid diet which needs to be fed to her. Her doctors are evaluating her medications on a daily basis, but haven't found anything that has worked particularly against the debilitating hallucinations and confusion. I am the only one who can give her medications, she doesn't trust her care givers, and on bad days I'm the only one who can get any food down her. I am beginning to give up hope and I'm physically and emotionally exhausted despite the fact she is in a skilled nursing facility. I can't even imagine how it is possible to do this on your own in your home.

My question is do you have any experience or can you point me in any direction for information on how this disease progresses if she is experiencing such a fast decline in function and progression in disease? Does the disease usually continue on its steep decline once the patient starts these free falls? Or do they "level out" at some point? I absolutely abhor the fact that my mother is hardly there. She has been eaten up by these insidious Lewy Bodies. She does have the occasional day where she is her old self, but these are coming less and less frequently. We cherish each one.

Thanks.

SH, Colorado

Update received: April 11, 2007

HI LBJ -

I'd like to add an update to Story 10, January 15, 2007.

The nursing home staff, including a wonderful physician's assistant, discovered that my mother was becoming psychotic after taking an oral cortisone: fludrocortisone. She had been taking this particular drug to control fluctuations in blood pressure, and developed the psychosis after years of taking the drug successfully. She is now on seroquel and namenda and they are trying to wean her off seroquel. She still has vision difficulties, cognitive issues - cannot read, cannot carry a train of thought, and her physical strength is deteriorating rapidly now that she is off sinemet. We only discovered the medication was causing so many problems when she started refusing to take anything.

I urge you all to critically examine medications that your loved ones are on, and the side effects. And don't discount the meds as possible causes of hallucinations and/or psychosis because they have been on them for years. My mother certainly developed a sensitivity to cortisone after many, many years on this drug. Maybe the sinemet too as that was discontinued at the same time.

S

Story 11. Received: January 25, 2007

My Dad died in 2005 from Lewy Body disease at the age of 85. At first the doctors thought it was Alzheimer's, but after a while, they agreed that it was Lewy Body. He also had heart problems, but that problem was relatively kept in check with pills.

My Mom passed away in 2003 and when Dad started telling me that Mom was visiting him at night (by coming through the closet) and laying beside him (but never letting him see her face) I thought that this was strange, but it seemed to comfort Dad as he had just lost his wife of 60 years. This went on for about 6 months, until one morning Dad said he didn't want to see Mom anymore, because the night before he had seen her face and he said it was horrible. I didn't know then that that was probably the start of his Lewy Body symptoms, because before that he seemed to be normal. He attended Lodge meetings, fixed things around the house, drove the car, etc., all without any problems or incidents.

While reading your experiences with your Mom, I realized that my Dad had almost EVERY ONE of the symptoms that she had. Fortunately though, he never reached the point of being bedridden and was still able to shuffle around the house. His hallucinations were more severe though he saw faces on walls, people painting and building things in his bedroom, people sitting in the living room, etc., but of course no one was there. (He would get extremely frustrated when I could not see what he could.)

The only difference was that my Dad passed away in mid-2005 and did not really show severe symptoms until mid-2004. For that I am thankful, because although he went through the same symptoms, he went through them so quickly and eventually passed away from heart failure. He was at home, looked after by me, until 2 weeks before he died. While he was at home, we laughed at his mistakes (trying to put his gloves on his feet), and taking up smoking again after quitting 24 years earlier. (I figured it would not hurt him and he thoroughly enjoyed it with his occasional beer!) Because of his age, the doctor did not give him any medication to deal with his Lewy Body symptoms and for that I will be eternally grateful after reading about your trials with different medications.

I guess my purpose for e-mailing you is just to say that I had not been able to come to grips with his death until I read your article. I can imagine it was very hard to write, especially near the end of your Mom's life but I want you to know that it has helped me and for that I thank you. (I don't know why I logged onto the Net tonight, why I picked the disease to look at, or why I picked your message to read I only know that I did for some reason.) I now am grateful that he had to suffer this terrible disease for only a year. I remember asking God (and my mother) to please take Dad soon, because it wasn't fair that he should have to live in that state. Whether you believe or not, my Dad died of heart failure 2 days later. I might mention that I am not a religious person at all, and have put it down to coincidence.

THANK YOU.

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