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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, December 2007 - May 2008 (9 stories)

Story 1. Received: December 21, 2007

My husband is 73 years old and was diagnosed with LBD in 2004, after several years of being misdiagnosed. I had been working 4 hours a day. After he fell and had a serious accident falling and hitting the fireplace and had a laceration requiring 37 stitches, I hired a caretaker, who was so good with him. She would take him for a walk of about a mile for the whole year she was with us. After that year, he began falling so much and was unable to get up, or to understand directions that would help him get up, that I decided that he needed more care than I or she could give him. We have an excellent nursing home in the area and I took him with me one day when I was taking messages to the home. He was shown around by the administrator. He decided it might be best for both of us if he went into the nursing home.

The doctor that he had been going to prior to being diagnosed took him off of all of his medications. I then found a very good doctor who suggested that he be taken to Washington University Memory Aging for a diagnosis. They immediately diagnosed him with having Lewy Body Dementia. One of the things that you feel is that you do not know when it all began. He had been acting out dreams for several years, and was impossible to awaken from these dreams; sometimes he would laugh; sometimes he would cry. I then noticed that when he was watching TV his head was shaking. When I questioned him about that he told me that his whole body was shaking. He was then diagnosed with Essential Tremors. I think I was fortunate in finding the second doctor who suggested the testing.

He currently is taking Namenda and Harriet, along with Effexor, Zoloft, and Sinemet. He can no longer write, feed himself or walk. His mind for the most part is fairly good, but he has hallucinations.

He is loved by all of the nurses at the nursing home. He has a private room, with all of his things from home. He seems, while not always happy, to have adjusted very well. He is getting therapy to keep his muscles from atrophying. He has not suffered any broken bones. He has trouble drinking without a straw because he can no longer tip his head back far enough, so it's necessary to use a straw. I feel very grateful that, while he is slipping away, he is not in any pain. His main complaint is from the tremors.

I, like so many of you, do not know what will come next. I do a great deal of researching this disease.

I visit every day and feed him every evening if I do not know the attendant who is going to get him ready for bed. His doctor has cut the Zoloft down to one pill a day. He does not believe in over-medicating.

It's heartbreaking to watch a man who loved playing golf, managing his portfolio, and all the other things he was so good at go down so quickly. My best recollection is that this all began about the year 2000. As I said it's hard to pinpoint the beginning of this disease. His sons were aware of it about the same time that I noticed it.

We traveled a lot before his illness. Our lives have changed so drastically. He is not the same man that I knew and loved. These last years have been a time where we have grown closer than ever before. D was a person who was very much in control. When he asked me to take over his checkbook and pay the bills, I knew something was horribly wrong.

I have gained a lot of knowledge from reading the stories of all of the other persons taking care of a person with LBD.

Story 2. Received: January 8, 2008

My mother has recently been diagnosed with Lewy body dementia, but I suspect that the early stages began at least two years ago, but were diagnosed as Parkinson's Disease. She went into a rest home in February last year as she had been assessed as no longer able to live at home on her own and she refused to come and live with any of us kids. Prior to that, she had had a number of TIAs and was becoming more and more forgetful: leaving elements on, etc., etc.

About 3 months ago, Mum told her friend that she was ready to 'let go'. 2 weeks later, she posted our Christmas presents (it was beginning of November) and my son's birthday present (January birthday). The next day, she 'went mad' and the rest home staff called an ambulance and she went to hospital where she remained for 6 weeks. She had also started to have delusions and hallucinations prior to this and kept packing her bags to leave the home.

Today, I visited her for the first time in 6 weeks ... and was horrified with the extent of her decline. She was verbally abusive the whole time I was there, screaming and yelling at me and the other rest home residents. It was really horrible. I feel as if I have already lost my mother: dementia truly is a 'living death'.

It was reassuring to discover this website and read 'real life' stories of people's experiences with Lewy Body.

Story 3. Received: February 4, 2008

First off and most important, thank you. I found such comfort in your site as I am sure many others do too.

In Jan. of 2004 my mom was diagnosed with Parkinson's, but after years of being treated she was rediagnosed with LBD with a new doctor in March of '07. Let me go back in time. My dad was trying so hard to care for my mom she was so timid, and afraid all the time, having hallucinations, frequent falls, just not able to do daily tasks anymore.

In Oct. of '06 Mom fell for the 2nd time in one day, and my dad tried to get her up and he too fell. To make a long story short Dad ended up with major health issues, was hospitalized and later in rehab. Now the hardest part (because we all worked) was left to us kids: What were we going to do about Mom?

My mother ended up being moved 3x in a month. She was in 2 different assisted living places. The 2nd one she left twice only to be found on the street, not knowing who or where she was. Anyone with a loved one going through this, taking them out of their environment or routine is very troubling and confusing to them. One of the employees there suggested I call my mom's family doc to have him prescribe Ativan for my mother, because she said this would help with the agitation. By the end of Nov. it was her 3rd move but now to a nursing home. My mom was a mess, not truly understanding what was happening. She became this out of control woman nothing like my mother had ever been. She was nasty, angry, and she was hospitalized twice in that first week. I kept questioning the sudden change in this once gentle woman. I begged them to take my mom off the Ativan that was the only thing that had changed in my mom other than the moving. Finally one doctor agreed with me that the Ativan sometimes has a reverse effect and that's what was probably happening to my mom.

After a few weeks of being off the Ativan, the anger seemed to subside, although she seemed very sad and cried a lot over the next few months.

March of '07, she saw a new neurologist. He is the one who rediagnosed my mom. He said things were progressing too fast to be Parkinson's. He said LBD mimics Parkinson's but moves quicker.

In the months to follow, Mom would still hold conversations. Of course they didn't always make sense. Her voice was very faint and we struggled to hear her, but at least she was trying to communicate. By summer things were harder for her. She was no longer able to hold utensils to eat; she would eat with her fingers.

By fall Mom was no longer able to feed herself. Her hands were so clenched to her chest, she had tight fists all the time, it got to a point where she caused them to bleed. Things were changing rapidly. I would have to say our last good day with Mom was on her 77th birthday in Oct. 2007. I'm not sure she knew exactly what was happening but we sang to her, had cake and opened presents. She made some funny comments that day that I am sure none of us will forget. She made us smile that day.

In the weeks to follow, Mom went downhill fast. Her eyes were normally closed and if they were open she was crying. There was little or no conversation. One day in Nov. I was there trying to feed her and in her clearest, loudest voice she yelled NO as I was asking her if she wanted to try the chicken, pureed of course who would want it!!!!!! At that moment I was shocked and scared at the same time, as I hadn't heard her talk and that just blew me away, but it was at that point I realized my mom was still in there. She could still hear us even though she wasn't responding most of the time. At that time I told my mom everything I wanted her to know: I found it harder and harder to go why, God, why are you keeping her here? Are you listening? I asked over and over again.

The Fri. before Christmas they called from the nursing home and said her breathing was getting harder to control. She would get to where she would do like a blowfish kind of breathing till you could calm her down. They wanted to start Mom on morphine. I was against it only because years before she had a bad reaction from it. They suggested Oxycodene. We decided to stop all meds except for that and we opted not for hospice, just because Mom's nurses and aides had been wonderful. Mom was no longer eating or drinking. We would try to wet her whistle with one of those lollipop sponges. The only decision that became hard was whether to suction or not. The nurses were doing it to keep her comfortable and I kept asking, Are we prolonging this miserable life of hers by doing this? The gurgling at times was hard to take but Christmas day was the last suctioning day. And after making that decision it never seemed as bad after that.

Around 12:30 a.m. on Dec. 27th they called us that things were getting worse. When we got there we reassured Mom that we were there and she did not need to be afraid. She opened her eyes real wide. Those last hours I will never forget. She seemed at peace, her breathing becoming shallower and shallower, and when she took that last breath shortly after 9:00 a.m., I remember thinking, Mom, I hope you will finally find happiness again.

This was the cruelest disease the effect it had on the mind and body. She was so tense those last 3 months, so stiff, unable to move, not able to speak, how sad an ending for all of us. We can only remember the wonderful mother, wife and friend she was before this terrible LBD took over her body.

I thank you from the bottom of my heart for this site, because over the last 6 months I got to cry with other people who wrote in. It was a comfort to read that we were not alone. I wish the medical field will become more in tune to this disease before too many more people have to go through it with so much unknown awareness of this. But for now, may the people who read this find comfort in knowing you are not alone. And that your loved one will some day find peace again.

I loved my mom dearly and wish she did not need to suffer so much. Maybe some day I will understand the reasoning to it all. I will hold a special place in my heart for you, Mom. Love, M.

Story 4. Received: February 12, 2008

My husband was diagnosed back in 1996 at the Mayo Clinic with Diffuse Lewy Body Disease. He has a family history of 2 sisters and 1 brother having died. They were given Parkinson's drugs which, according to the doctor, may have led to their deaths. One sister had been diagnosed with Juvenile Parkinson's. The Mayo Clinic was able to get some brain matter from an autopsy of his brother to make a diagnosis.

My husband has had the illness all of his life. He is currently taking Topamax and Imitrex for migraines. He is also on Paxil for anxiety. I do not see any mention of people being young with this. Both his sisters and brothers died in their late 20's or early 30's. He is still alive and he is 58. He has one natural sister still alive in her 40's and one half sister in her late 30's. Both his sisters have some shaking, and now his nieces also are having problems with shaking. Are there any other people who have had this all their life like him or had a family history of it?

DMJ

Story 5. Received: February 25, 2008

Thank you so much for your web site it has been an incredible source of information and support.

My father is 73 and was diagnosed with LBD/Parkinson's in 2003, though we noticed symptoms of cognitive decline/nightmares and REM sleep problems for the past 12 years. My mother (68) and I have been caring for him at home, however due to the fact he is frequently up at night and is starting to experience morning and early evening hallucinations (in addition to all the other care he requires), the doctors are urging us to place him in a nursing home. My mom's health is declining due to 5 years of sleepless nights. Although my parents live with my husband and I in a suite, we have 2 small children ages 7 and 9, so there is a limit to how much more I can do.

The hard part is that my father experiences night terrors and frightening hallucinations which he believes were real for days at a time. After a few days he finally accepts our word that they were not real. During the middle hours of the day he is quite lucid and has insight into what this illness is doing to him, although he does not fully understand the level of care he requires. We had to put him in a nursing home 2 weeks ago for respite when my mother and I and my kids came down with bad flu and we could not care for him. He walks independently but has had many falls and is sometimes very unsteady. We are trying to get him to use a walker. He is still able to eat although his appetite is a little low and he is extremely thin. He needs some assistance with showering and personal care although he can still do some for himself. He is devastated and depressed in the nursing home and says he will "crack up" if he doesn't come home soon. He comes home in 2 days, however my mom and I are meeting with the Community Nurse today to get his name down for permanent nursing home placement. I don't know how we are going to tell him, since the nursing home is his biggest fear. It is going to be hard.

My father cannot tolerate tranquilizers, and a small dose of Seroquel a year ago had a very bad effect on his movement. His specialist says she does not want to try any more meds as he already is a high risk for falling and there is basically nothing we can give him to ease his anxiety or reduce the hallucinations and night terrors. We tried him on Sinemet for the Parkinson's but he had a severe reaction to it. My question is have you had any feedback with regards to naturopathic or homeopathic/natural tranquilizers or meds that could help my dad? It's so hard to see him suffer and not be able to give him anything to relieve it. What's also disturbing is that in the nursing home at night, when he gets the worst symptoms, they are short staffed and often no one even knows he is having an attack. Any info would be most helpful.

Thanks so much.

Story 6. Received: March 30, 2008

My mom, L, recently passed away, March 14, 2008. She was diagnosed with Lewy Bodies Dementia approximately 2-3 years ago. Although I heard about it, since I've read so many Frontal Lobe Dementia stories, we weren't sure as to what the exact type of Dementia Mom had. We now know for sure, Lewy Bodies was the culprit to her demise. What a sad horrible disease. Mom lived with the struggle of dementia for, what we know, 5 years. It most likely started before the 5 year "onset", only we didn't notice.

We moved her into an Assisted Living 3 years ago, after I looked after her for 2 years in our home. Right up until 2 days before she passed, we moved her into a wonderful Hospice. Hospice nurses and staff truly are angels in disguise. They were wonderful, they take care of our loved ones and give them the care and respect and dignity right up until the time of death. They are not given all the credit they truly deserve. Don't be afraid to find out about the Hospice services in your town or surrounding area.

I cannot even begin to tell of the story of our journey with Mom's Lewy Bodies Dementia, as I am drained and tired. I am mourning the death of my dear sweet beautiful mom. I've learned to love the new mom we have had for the past 5 years, but I am missing my old mom, the mom I always knew and loved more as a child and adult. I am missing her more than words can ever express ... it's infinite, the ache I am feeling and will continue to feel. I know she's at peace, and her brain is well again, and she is a free spirit, finally able to soar to new heights. I also know that she is most definitely "gone too soon".

DF, New York

Story 7. Received: April 10, 2008

Dear Lewy Body Journal,

My mom is 84 and has LBD. She was also a school teacher and mother of six. All three of the antipsychotic drugs my mom was taking (for her diagnosis of Vascular Dementia) for a little over one year cause Parkinson-like side effects. We were never told of these side effects and had to find out the hard way. She never had Parkinson-like symptoms until she started on these drugs. Did these drugs cause her Parkinson-like symptoms, or did her undiagnosed Lewy Body Disease's high sensitivity to antipsychotic drugs bring on the Parkinsons? The doctor also stated that he is seeing more people with LBD. Is it a result of all these antipsychotic drugs? I just hope this information can help others.

My mom was just diagnosed with LBD (4-3-08), after initially being diagnosed with vascular Dementia then Alzheimer's, officially about 1 year ago. She had been on antipsychotic drugs since Feb. 2007 for her erratic behavior as a result of the Dementia (i.e., take me home, I am leaving, etc.). The drugs included:

1. Risperdal (calmed her, helped with her anxiety but caused muscle cramping and Parkinson-like symptoms). Took her off Risperdal (5/07) and put her on Seroquel.

2. Seroquel (calmed her, helped with her anxiety but caused even further Parkinson-like symptoms, broke her hip 11/07), very briefly took her off Seroquel for uncontrolled shaking (3/08) and put her on Depacote.

3. Depacote was only given to her for 2 days. She had such severe shaking/seizures that we had to bring her to the ER. They could not find anything wrong and the diagnosis was Dementia/confusion.

Shortly thereafter, April 3, 2008, her doctor said he suspected LBD. On Monday of this week, we made the decision to call Hospice. Hospice almost took her off the Ativan to put her on 4. Haldol. Fortunately, my sister immediately looked up Haldol's side effects which are, once again, Parkinson-like symptoms. My sisters and I were amazed that the two hospice nurses had never heard of LBD.

My mom now sleeps most of the time and we have her only taking Ativan with an occasional Ambien. The Seroquel/Depacote will be out of her system for one week now, and she still is experiencing epileptic-like seizures, only when awake. She is at home with my incredible dad and a wonderful 7/24 caregiver. We are so fortunate to be able to care for her in her own home. Her family and friends are blessed that we have been able to have her with us for so long.

EP

Story 8. Received: April 11, 2008

My mother was diagnosed 2 days ago with Alzheimer's with a Lewy Body variant at UCLA's memory clinic. She is 54 years old. There is no family history of any kind and most of my family is still in shock and/or denial of the condition. My father and I noticed some minor memory problems as far back as 3 years ago. I told her to see her gynecologist thinking it was associated with menopause. The memory decline was very gradual but when she became confused over everyday activities I knew something more was going on but didn't know how to address it with my father who was dealing with his own mother's Alzheimer's condition.

Three weeks ago things took an abrupt turn for the worse. For a few days, my mom was making off the wall comments such as calling my dad by his full name when talking to me and using "they" or "them" when talking about my dad. My parents had planned a trip and about an hour into the trip my mom began to hallucinate that there were multiple people in the car and then looked at my dad and asked him where he had been. From that day on my mom has had the delusion that there are multiple "Ms", but she is only married to one. It changes by the hour who she thinks my dad is. We took her to the hospital immediately. They ran a battery of tests, all coming back normal. Even in the few days she was hospitalized the symptoms began compounding.

When we got home, she started seeing and hearing people in the house. She called the cops twice. Her memory is on and off. Some days she does pretty well, other days she is unable to finish a sentence. She is constantly asking my dad which M he is and introducing me to him. Her delusions about who my dad is are very detailed yet he is the only person she has trouble with. She doesn't sleep due to nightmares or simply getting up thinking it's morning. Her sense of time is completely out of whack, 15 minutes is like 2 hours to her. She has started hiding things around the house. Believe it not, four weeks ago, she was the primary care giver for my children, ages 1 and 2. She never had a problem handling them. Obviously she no longer watches them and hasn't asked me anything about who is taking care of them now.

During the diagnostic interview at UCLA she became very upset about what we were telling the doctor, crying, screaming, it was horrible. But 20 minutes after leaving, she forgot my dad had been there and didn't remember much about the appointment. The doctors are quite baffled at the progression but all agree it is Lewy-body even though there are no physical symptoms at this time. I asked the doctor what we should expect and he said every case is unique, especially in my mom's case. We are holding onto hope that the Aricept will slow the progression. I am only 26 years old, I still need my mom.

A

Story 9. Received: May 1, 2008

My father was misdiagnosed with depression in May 2001 at the age of 66. By that year's end we were able to pursue a doctor that would more fully recognize the symptoms for what they might be. Sadly Lewy Body disease is not well understood in the health field. By summer of 2003, my Mother and the family recognized that his care was too dangerous and taxing at home and we began the search for nursing homes. His hallucinations and sleep walks and falls became worse while we waited, and at times his stiffening up would leave him and my Mom frozen in location at all hours of the day or night until his muscles would relax.

He was entered in a fine nursing home in early 2004. It should be noted that he was one of the youngest there but the most misunderstood as staff would see him cooperate mostly, but when he would lapse they would assume he was faking it or being miserable. Nursing home staff are accustomed to the full Alzheimer's patients, but not the come and go episodes of lewy body patients and the shaking. In his final year at the nursing home, the need for straws to drink and manual feeding to carefully swallow accelerated quickly, while his body became much smaller and weaker. In the final year his attention span to hold a thought went from 30 seconds to about 5 seconds. But his memory of his homeland Holland and old pictures was amazing for those short seconds and we valued the smiles we could obtain from him. We buried my Father in February 2008. So that was seven years from suspected symptoms to succumbing to the ravages of the disease.

I want to thank this site for its testimonial stories and advice that helped prepare us and give us notice of what to expect for those family decisions on his care.

J for his Dad

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