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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, February - October 2009 (10 stories)

Story 1. Received: February 3, 2009

After reading some of the stories I felt it would be beneficial to tell ours.

My wonderful father-in-law was diagnosed with LBD last February. Previously he was having difficulty walking and could not write anymore. He was a very active outdoorsman. His devoted wife did everything for him so we children were not aware of the severity of his situation. They went into an apartment in a tiered-care facility near us a few months before his hallucinations started. He had explosive nightmares where he would yell and curse. He never remembered any of them. We feared for our mother's safety. He was then transferred into nursing care which was just across the inside "bridge" of the facility. This allowed his wife to come and go as she chose. To this day she has not left his side except to sleep.

He progressed from a walker into a wheelchair quickly and now is bed-ridden and non-moving. A geriatric neurologist diagnosed his illness and meds were given carefully. His Parkinson's would be affected if his hallucinations were treated and vice-versa. He also has bone cancer so the pain has to be controlled which affects his condition. Now he sleeps most of the time but he can be aroused to look at you and smile. He has times of crying. The doctor wants to call in hospice but that would mean stopping all meds but pain and we want to continue the megas for stimulating hunger. He still loves to eat! This is a very difficult decision. Nothing can prepare a family for this type of disease. We don't know what tomorrow will bring. We are always asking ourselves, "Are we doing the right thing?"

DL

Story 2. Received: March 10, 2009

Hi. Great site. My mother had LBD and now, more than 10 years after she died, I'm getting involved with the LBDA. I've written about my experiences on my blog. Here is a relevant post:

Thursday, August 28, 2008: Letting my mother die

Sorry for two bummer posts in a row, but today would have been my mother's 75th birthday. She died in 1999, two days shy of her 66th, after suffering for about 10 years with an insidious neurological disease called Dementia with Lewy Bodies, or Lewy Body Disease. You can read more about it here. Suffice to say, take the worst parts of Parkinson's and Alzheimer's, combine them in the body of someone you love, and you'll get a sense for how devastating it is.

Frankly, Mom could be somewhat ditzy and forgetful, and was no graceful creature, so we really have no idea when her symptoms started. And for years, we had no name for what was happening to her. It really wasn't until the end that it was labeled and then we had no idea what it was or what it meant. But in her last couple of years, she was completely helpless and dependent. She didn't know her family, though she did smile at familiar faces. She was unable to communicate in any way. She couldn't move. Ultimately, she couldn't make the muscular contractions required for swallowing. At that point, we had a decision to make: keep her alive through forced nutrition via a feeding tube, or suspend nutrition and hydration until she died.

This woman gave me my life. Now I had to help make the decision to terminate hers. It was only mildly ironic. Though she was as defenseless as a newborn, she had no future. There is no cure for this mind-wasting disease. What little of her physiology still functioned was not capable of providing her with a meaningful existence. With sadness and regret, my sisters and father and I agreed she had suffered enough. An IV remained in her vein to give her morphine so that she would not feel distressed as her body's batteries slowly ran out from lack of sustenance. We were told that without food or water, she would die in 1-2 weeks. If I recall correctly, she lasted 15 or 16 days.

On her last day, I said my goodbyes to her, thanked her for being such a wonderful, selfless mother, apologized for what I had to do to her, and kissed her. I sort of wanted to be there at the end, but she went when she was ready. I know that her skin was drawn tightly against the bones of her skull, but thankfully I can't produce the image in my mind. When I think of her today, she is healthy and laughing. Even on the day she died, it occurred to me that it had been a very long time since she had been that way, her real self. Lewy Body Disease is like those pods in Invasion of the Body Snatchers. For a long time, she still looked like my mother, but if you knew her, you could tell that behind her eyes lay a soulless impostor.

A few weeks ago, my wife and daughters and I were in the Berkshires and we visited the Norman Rockwell Museum. Mom loved Rockwell, and the museum has become almost a shrine to us. As I gazed at his works, the silly minutiae of everyday life that can only be called Americana, the deeply felt images in his Four Freedoms and Civil Rights Era paintings, everything that my mother was, was there enframed. Simple, funny, unpretentious, decent, laid-back. When a staff person there, a woman in her late 60s-early 70s, saw my 2-year-old with her hair of copper wire, she said, "If Norman Rockwell were alive today, he would want to paint her. He loved red-haired children." I like to think Mom heard that and was proud.

Of course, S never knew her grandmother. Her older sister (by 10 years) was almost three when my mother died. Though my mother was far from her worst, the effects of the disease at that point made her stone-faced; she could walk, but had to be prodded. Mostly, her days were consumed sitting in one place, with a blank expression on her face. My older daughter H was a little afraid of her, yet also had a child's wonderful sense of frank acceptance and compassion. To distinguish between her maternal grandmother, a fit one-time dancer who loved to get down on the floor and play with her first grandchild, and my mother, she called the former Grammy and the latter The Grammy Who Doesn't Smile.

The truly ironic thing is that my mother would have found that very funny.

Well, happy birthday, Mom. Sorry I didn't get you anything this year. But someday when I get published, I'll leave a copy of my book open on a table somewhere so you can drop in and read it.

JMR

Story 3. Received: March 22, 2009

I have been reading your journals for quite some time. My husband was diagnosed with Lewy Body Disease in 2003, after many years of sleep disorders, forgetfulness, shaking, shuffling gait and stooped posture. He has many good days, but today was not one of them. He has slept almost the entire day, refusing to eat. I finally got some Ensure in him a little while ago. He has always had a very pleasing personality, so dealing with him has not been a problem. When our children, our other family members visit or see him outside of our home, they don't feel that things are as bad as they really are. It appears to me that when he is with other people other than me, he seems to come alive.

He has a severe back problem, and surgery seems to be on the horizon. It seems as though he goes downhill if he has to undergo any procedures. But his back problems are so severe something needs to be done.

Tonight he is unable to walk, and has a lot of Parkinson shaking going on. Hope tomorrow is a better day.

When other families tell of their problems and stories, it helps me to understand that we are not the only family with these problems. Please keep up your good work, and always look forward to reading the journals. Thanks so much for your web site.

JD

Story 4. Received: April 11, 2009

As I sit here getting ready to go to the hospital, I googled LBD as our father's doctor had asked us to do. I understand each and every letter on your website, as we have been trying to find someone to help my dad for the past 2 years. When we would explain to all those doctors how his personality has changed over the past 2 years and how he has gone down in health, we were told, "There is nothing wrong with him except old age". He is 82 now.

When he ran over Mom in their garage last week with his pickup because he became confused between reverse and drive, we knew something had to be done. He was admitted to the hospital this past Wednesday and they ran every test "known to man". One of the doctors came in yesterday and told us Dad has Diffuse Lewy Body Disease. We had never heard of it so he told us to go to the Internet. Now I am sitting here with tears streaming down my face as I realize we are not the only family facing this horrible disease.

I live 6 hours away from here so can only visit every few months. We were here for Christmas and Dad was slow getting around with his shuffle but he was still going. When I got to the hospital on Wednesday, I wondered where my Dad was because that man in that bed was not the man I hugged as I left here Christmas. And he has gotten even worse in the past 2 days. But we do know what he has and now we have to prepare Mom for what lies ahead. They will be moving Dad to a nursing home on Monday to do intensive physical therapy. I'm not sure based on what I have seen these past few days if he will ever leave that facility and come back home.

Please say a prayer for all the families involved with this horrible disease. I have learned one thing life is short and we better appreciate all the good times and memories we make with our families. You never know what's going to happen. Thank you for having this website and thank you to all the families who have written their stories to help the ones you are just now finding out what is happening to their loved ones. Thank you.

DCH

Story 5. Received: June 6, 2009

My mom used to hike 3-5 miles with me in a wilderness park everyday, her health was perfect, doctors would comment on the great health she was in. We would shop, go visit my aunt in the hospital, etc. 2 days after my aunt died my mom went into deep depression with psychosis episodes. I could not believe the drastic change my mother took on. Doctors put her in the hospital and treated her with antivan, remeron, effexor, zestril, and zyprexa. This was in May 2008. After her release she continued to see a psychiatrist who saw her once a month and asked how she was doing and increased her medications. Her entire visit would last about 15 minutes after an hour wait in the lobby.

My mother started to forget things frequently which didn't alarm anyone since they were normal age-related things that even I would forget, for example where I put down my keys, but the doctor also prescribed exelon. The morning she took the exelon, in April 2009 put her over the edge with the medication. It took her only one day and that day was horrific. She had anxiety and did not sleep that evening. Crying and pacing was all she did all day and for the next couple of weeks. In May 2009 I called the doctor and told her what was happening and explained that after one day of exelon she could not take it and that I no longer gave it to her. She told me to try again with more food. I tried for 3 days and my mother was worse. I took her in to see the psychiatrist and she immediately hospitalized my mom and in 3 weeks in the hospital my mom can no longer walk, feed herself or even talk.

I can't believe in one year she has declined so much and no one ever saw it coming. They have diagnosed her with Lewy Body dementia with parkinson-like symptoms. I don't understand this disease at all and need to know how it affects people. My mom in one year, in mind, is no longer with us. Does this disease come one day and within a year take someone's life? She now needs 24/7 care. I don't know how to deal with this and blame the doctor. If anyone has seen this before or has any information on this disease please let me know. It has been hard.

Thank you for listening and letting me get my feelings out. I don't know where else to turn. My mom in one year is gone and the doctor says that this is how this disease takes on. I am not sure. I pray for myself as well as everyone who has a family member going through this. It is horrible to watch and see and I cry every day. This is not my mom! Reading the stories on this website has been good for me, thank you for it and my heart goes out to everyone. God Bless.

Fondly,

HM

Story 6. Received: June 24, 2009

My mother was diagnosed with Lewy's Body Disease today. For ages, we assumed it was Alzheimers. My grandmother (her mother) and two of Granny's four siblings all had it. There were some differences though mainly the hallucinations and the paranoia, which only happened very late in my grandmother's illness. The professionals seemed reluctant to make a diagnosis and I realised when I went with her and my step-father to a previous appointment, that he was refusing to admit to them or to himself that anything was wrong. He wouldn't tell them what was going on at home.

I am so grateful to you for publishing your journal. I found it extremely moving, and I believe it is a wonderful tribute to your mother. I am sure she would be very proud of you all.

Our situations are pretty similar. My 77-year old mother too was a teacher heavily into Shakespeare etc. She was an amazing and brilliant woman who made the most of the swinging 60s nightlife of London whenever she had the opportunity! My step-father is 83 and not in brilliant health. Mum had three daughters, though my youngest sister died from cancer five years ago. We have three step-brothers.

What worries me most is that they live in a five-bedroomed pile with half an acre of garden (probably pretty small by US standards but still too big for my step-father to manage). They have an en-suite and are having an extra handrail installed on the stairs. But he is not strong and I would rather they moved somewhere more sensible, before it is too confusing for mum. (My step-father is an ostrich and seems to have understood today's diagnosis as brilliant news, simply because she doesn't have Alzheimers.) I shall tell him about your site, but I don't know whether he will read it. Like you, I am concerned to prolong the quality of her life, rather than the length of it.

Our problem in the UK is that living wills are ignored. A former colleague with MS is being kept alive artificially despite her living will, even though she can no longer even blink. We do have the NHS, but people with even a moderate amount of money have to pay for anything other than hospital or doctor's treatment.

Sorry for off-loading on you. Like you, I had never heard of this disease until it was diagnosed.

I cannot tell you how grateful I am that I found your journal on-line. While I was in tears, I also found it incredibly helpful. And some of your tips will be very useful in the future.

Thank you again.

KO

Story 7. Received: September 10, 2009

I stumbled across your website and am thankful for doing so. I now know that I'm not alone in this and confused as to what is and might be happening to my mother. When people ask, "So how's your mom, is she getting better?" I now can explain to them what she has. A few years ago is when it all began. Mom fumbled with words but nothing that set off alarms that anything was wrong. Mom was a wonderful cook and entertained often with dear friends of many years, then it completely stopped. Primary doctor said she was having anxiety and depression and put her on an anti-depression drug that did nothing for her but made things worse. My dad never mentioned little things that were occurring. Not seeing my mom on a daily basis I would have picked up on things that weren't right such as her falling backwards and her gait walk. Her balance was and is terrible and needs assistance with a walker or someone guiding her walking. When I had to stay with my mom for a week when my dad was hospitalized is when I saw the full picture. Mom was hallucinating and seeing animals and people that weren't present. I took control since I figured my father was in denial and insisted she see a neurologist. Several appointments & tests later we finally got the diagnosis, and knowing there is no cure is very upsetting and sad. Doctors started her on arricept to see if it helps with the hallucinations. Knowing that I now have a place to come to for info and support is comforting. Thank you and keep the faith to all.

CC

Story 8. Received: September 17, 2009

My father who is 81, was recently "diagnosed" with lewy body disease/dementia after almost three years of searching for the problem. In hindsight, the deterioration of his mind and body is obvious. The disease really reared its ugly head around Easter of this year. Things seem to really spin out of control. His auditory hallucinations were getting worse and the paranoia was frightening. He became increasingly aggressive and verbally abusive. This is a man who would never raise his voice, the kindest most gentlest person I've ever known. In order to treat the hallucinations, doctors prescribed haloperidol (sp?) which really affected his walking and general demeanor. In addition, he had taken a fall and fractured his upper arm and tore his rotator cuff near the end of June. It seems we can't treat the symptoms without worsening the others. If hallucinations are treated, he becomes a vegetable. Each day brings a new adventure.

Near the end of Summer, our mother suffered a major stroke and although she has almost fully recovered, with the exception of some cognitive issues, she has been unable to care for Dad for the past few months. In an effort to keep him at home as long as possible, we took him into our home. He has been admitted to the hospital to adjust meds just recently, but as mentioned above, all symptoms can't be treated at once. You can set your watch by his "sundowners" which are getting increasingly worse. It is difficult to dismiss everything he says because it is hurtful to everyone. He is currently taking vistaril to calm him, although the effects are not stellar. I guess I'm looking for a "magic pill". He also takes a host of various drugs with varying degrees of success. Other than this disease he is relatively healthy. I realize how ridiculous the last statement sounds. We try to find things to laugh about and to cherish the few fleeting moments of sanity in our home but we really do not know what will happen next.

Story 9. Received: October 7, 2009

My mother was diagnosed less then 6 months ago with the disease. She had been having problems with her memory for a few years but was still living alone in her home where she had hoped to remain with her dog which has been such a loving companion to her. My mother's memory was going down very quickly. She would forget to eat, feed her dog and not know where she was some days. We were somewhat surprised when she was diagnosed because she had tests after test to check on well being. For approximately 2 years she would complain about something being in her head and indeed she was right. They finally did a brain scan and found she had Lewey Body Disease. My mother was doing hallucinating during the day but even more at night. Her thinking became totally confused about things. She was spending her nights up cleaning, hiding things because she believed people were stealing from her. Most of her things she would bag or package up and then not be able to find them. I worried for her safety and her going outside to find "the person living in the woods." She was having a lot of difficulty with her speech and understanding what people were saying to her.

I found a facility for her which was long term care unit. They have been trying to find the right medication to put her in a happier frame of mind. In 2 months she is not able to communicate or understand what people are saying. I know she must be so scared with all the changes going on and this strange place she thinks is her home.

My mother is in great health physically and is able to walk/run the halls. She is in there somewhere and when her dog comes in to visit she weeps for hours when he leaves and looks for him for days. She often thinks someone has killed her dog which puts her in a very agitated state and it is very hard to calm her down. We are hoping that they find a good balance for her soon. Life has certainly changed for all of us.

Story 10. Received: October 12, 2009

My sister (61) has recently been diagnosed with Lewy Body. She has been treated for Parkinson's for about 3 years. The Neurologists had gone back and forth on that diagnosis. Five weeks ago she went to a facility for an evaluation of her depression meds. This is a mental facility. She was there only 4 days when she started showing signs of hallucinations. She acknowledged them to me by phone (I live out of state from her).

I would speak to her every 2 days and I could see a decline in her speech and actions each time. By the end of 2 weeks she couldn't walk, was in a diaper, and was seeing snakes everywhere. At this point she was transported to the local hospital for an MRI. She had been given meds for Parkinson's and our family was convinced that her change was brought on by the meds. After 5 days in the hospital she was moved back to the facility. We were told by her psychologist that she had been taken off all the new meds they had tried. She started showing some improvement by the 3rd or 4th day. She has now been released to go home with her son and wife. Her speech is still slurred and she is walking with a walker. This is the same person that originally drove herself to the hospital 5 weeks ago. I'm sorry I've made this a long story... I guess my main question is: Has anyone else had worse conditions brought on by the meds? We are at a loss as far as what our next step should be. She was teaching the first of September. My nephew is trying to get info on her retirement/disability. We aren't sure if she would be covered at an assisted living facility. Her son will not be able to keep her with he and his wife long term. They have a 5 month old and a 3 year old. My sister needs help with the stairs, bathing, and most other issues. This is too much for them to deal with in addition to their little ones. Thanks for letting me vent. As you know this has been an overwhelming issue.

PB

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