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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, February - April 2004 (4 stories)

Story 1. Received: February 15, 2004

Thank you for being my sounding board. My father died February 2003 after a 3 year battle with colon cancer. He was cared for at home by my mother and I. Because the focus at that time was so directed towards him, it was easy to attribute the early warning signs my mother was experiencing as "stress-related". Her memory was failing, her cognitive abilities were declining. Shortly before my father's death, my mother began experiencing delusions and hallucinations. After my father's death, she was diagnosed with LBD. At that time, she willingly moved into a senior residence, although she now claims she thought it was a short-term respite. We had taken steps to ensure I had power of attorney prior to my father's death.

My mother is now experiencing some physical decline (falls, digestive problems, etc.) Her hallucinations and delusions persist. We've had to remove all photographs from her room, as they upset her. She tries to prepare meals for those in the pictures, becomes agitated when they won't talk to her, believes my father has taken up with a prostitute. She is currently on Aricept and a mild anti-depressant (can't remember own failing memory frightens I next?). My current dilemma....she denies that there is anything wrong with her, says I have abandoned her and wants to purchase a house, says she'll seek legal advice, as the power of attorney is no longer her wish. I feel so guilt-ridden. I'm divorced, an only child, my 4 children are just leaving the nest, and, while they are sympathetic to grandma's situation, and visit when they can, they are busy commencing their own lives, away at school, working, etc.

If I could, I would quit my job and have mom live with me, knowing full well it would be more than challenging. Talking with my mother, trying to persuade her that she is in the best possible place, with 24 hour nursing assistance, planned activities, etc. is impossible. I visit weekly, yet she calls me throughout the day at work, imploring me to come immediately, to return something she's purchased (I must limit spending money, to avoid major problems and have had to take away her credit cards after many embarrassing situations). The guilt is all-consuming. My thoughts and prayers go out to all in similar situations.

Story 2. Received: April 7, 2004

Everything I have read in your journal and other people's journals all relate to my husband. We went to University of Michigan Hospital when my husband had REM sleep disorder back in 1991. That is where a person acts out their dreams. A research program in Rochester, Minnesota, said that 39% of white males who had REMs developed Parkinson's. That is an amazing high percentage. My husband's doctor and another who does movement disorders had my husband join their research program. He had MRIs and P.E.T. scans and psych tests.

He seemed not too bad in 1995 but in 1998 there was a change in his memory. Then in 2000 there was a dramatic change. His I.Q. was way down. He was having hallucinations at times. His perception was off. He would go into the bathroom and actually could not tell where the toilet bowl was to go to the bathroom. He would hit the floor instead. I tried to have him sit but when you turned him around to sit his perception was so bad that I got the idea that he thought I was telling him to sit down and there was nothing there. He just could not picture the toilet bowl there. He would sometimes come out of the bathroom and say there was a woman in there or someone. That was the hallucinations. The doctor said it is very real to him. It is like me saying you are standing there and someone is saying that you are not. It is very real.

With Alzheimer's you can go for years. With Lewy Body it is usually 5 to 7 years. My husband is at the end I am sure. In December he got sick and had to go into the hospital. After laying for two weeks he could not walk. He went to skilled nursing for two weeks for rehab but they sent him home because he could not follow directions. One of the true things is that hardly anyone knows what this is. After he left the rehab they sent him home with two bedsores which the home health tried to treat. They look as big as a quarter but underneath they are as big as a cup and to the bone. He ended up going into the hospital again to have them "debrided" and cleaned out and a muscle flap put over them. He is in a special Clinitron sand bed. He lay on his left side for 5 solid weeks because of the clamps and sutures. He cannot feed himself now or hardly talk and he will never walk again. Once you go through a hospital stay I think recovery isn't going to happen.

In Lewy Body the cells die in the core of the brain and the stem of the brain I am told. It is a very aggressive and devastating disease. I am lucky that he went from walking to being not able to roam. I never had that. He could not get words out to express himself. He did know everything that was going on around him so you have to watch what you say in front of him. Once in a while a phrase would come out ok. Hostility happens and aggression. If he gets angry the swear words would come out. The hardest part is no one knowing how to deal with him in the hospital. He is now in skilled nursing for rehab after laying in bed for so long. I just want him to be able to sit in a chair. I had two nursing homes turn him down because he required too much care. A lot of nursing homes do not want Alzheimer patients either. They would rather deal with a physically disabled person who they can talk to. No one knows about Lewy Body including doctors. I printed out a 7 page description and had one at the nursing station, one in his chart and one in his room just so the nurses and aides could be educated. Some made copies to take home. One nurse just had her daughter's father-in-law diagnosed with Lewy Body and they didn't know a thing.

One night watching Larry King Live, Kathy Lee Gifford was on. She said she also left the Regis show because her father had Lewy Body. She then explained to someone who telephoned into the program what it was. She was the first person I had ever come across who had or knew someone who had this disease. Everything she said was exactly as my husband has acted.

One day my husband said let's go home and we were home. He got very upset that I wasn't getting ready to leave. He put on his shoes and opened the door. We live in an apartment and the minute he opened the door and saw the hall he closed it. I really thought I was going to go into this really bad time with him taking off. I have been fortunate in that part. We had gone to an attorney a couple of years ago for me to have Power of Attorney and he has stated his wishes on no respirators or feeding tubes or CPR. I am so glad I know his wishes. I am afraid the part of the brain that controls chewing and eating will go. He is just holding his mouth open and not chewing right now at times. The Dr. said if he quits eating it would be a matter of only two weeks to a month. He still has recognition of me and our kids. That is the hardest part. If he was totally not himself it would be easier to let go. But when he knows who we are at times it just breaks your heart. Right now I just can't let go.

Story 3. Received: April 27, 2004

I am 32 years old. I had my first child March 2003. I was at home recovering when the police called me. My mother (who lived alone) was paranoid & thought that someone was living in her bathroom. The police took her to a mental health facility in her town (I live about 1 hour away) . The facility diagnosed mother with dementia. My mother is only 58 years old. We tried to get her in to an Adult Day treatment program but that lasted for 1 week. My mother's best friend came to take her to the program, mother was in a state of confusion and was barely speaking. They went to the hospital instead. This hospitalization determined it was Lewy Body. They suggested that she needed total daily living care. While in the hospital our family noticed mother stopped doing several things: dressing herself, going to the bathroom alone, and she only spoke when spoken to.

Currently she is living in a personal care home (I learned in our area some personal care facilities aren't covered by Medicaid). Since mother is not old enough to receive Medicare, our situation is tough. My mother decided to retire early from her job of 23 years (on her 25th year she would've gotten FULL retirement instead of only 70% she receives now). We found out she began calling in sick a lot and her job performance declined so much her career was in serious jeopardy. Mother did get to keep her medical insurance. The personal care home has been wonderful in every way. They have worked with us financially and transported mother to other medical appointments when needed. I now know that if a person can receive Soc. Sec. Disability for 2 years, they will automatically become eligible for Medicare regardless of age.

Unfortunately, my mother's future is very uncertain because we do not know how long she really had Lewy Body. As far as how she is doing... we are maintaining stability. Every visit our familiy talks and determines how much mentally and physically she has declined. Mentally she still has hallucinations (telling us she has to leave to cut the neighbor's hair? or she has to go fold the load of clothes by the dryer?). She doesn't refer to friends or family by name, we are her "buddies". She still only speaks when asked direct questions. Physically, she weighs 86 lbs (her normal weight was about 125 lbs). Walking up and down the halls has made her metabolism high. Since Nov 2003 she wears adult diapers. Thank goodness she feeds meals to herself and eats it all. The shuffle (almost tippy toe) walk has also set in.

Now our problem is aggressive behavior. Mother is slapping, choking, and scratching other residents and facility staff. She has been moved to a new mental hospital to fix this problem with medications. They removed her off of Resperidal (sp?) because of the side effects. Her side effects were a weird pelvic thrust with every breath and she seemed agitated to the point of distraction every meal because she didn't want to sit down. Everyone assumed her new symptoms were due to the disease. The personal care home will take her back once this situation is under control. They tried the drug Tegratol (sp?). It didn't work. They even increase her dosage 3 times, still no results. Too much Tegratol can cause blood poisoning. Her doctor informed us that mom's blood tests were ok.

All we knew about Lewy body was the following: more men than women get this, the younger the age of the Lewy body patient the quicker the course - and it was described "if an Alzheimer person and a Parkinson person had a baby it would be a Lewy body baby". Lewy body causes moments of clarity one minute and moments of hallucinations and confused forgetfulness the next. Also the hallucinations by a Lewy body patient are very vivid and can be described in detail.

Last year was one of the best and worst years of my life. The hardest part was cleaning out my mother's apartment since she was never going back home. It was like she had already passed away. And the second was when visiting my mother at her "new home" she would follow us back to the doors & before we could enter the codes to get out of the secured floor, she was softly knocking to be let out of the special unit. Heartbreaking!

Thanks to anyone that has read this. I tried to keep it short but then thought about anyone going through a similar type of situation. I would have wanted to know as much as possible. I really appreciate this website. The information about this disease is limited and it was therapeutic to type my story. I'm an only child so every decision made about my mother's well-being is mine. I have a wonderful husband and aunt (my mother's sister) that have been loving and supportive. My mother used to tell me, "You have to learn to do certain things because I won't always be around". She'll never know how we watched her forget how to live and it seems all we can do is keep remembering how she used to be. It feels like my mother is lost and she is a Lewy body patient that has become a stranger. But we love her and try to decide what's best.

Update received: May 11, 2005

I was story #3 sent April 27, 2004 so it has been exactly a little over a year to the day since I contacted this great website. I'm not sure how to just jump right back into my story so... here I go.

I ended my last letter by describing my mother's aggressive behavior. Wow, did it ever get worse! She was in and out of the mental hospital 3 more times. They tried Aricept and it made her paranoid. There were talks of ECT (electroconvulsive therapy) and our family didn't want this treatment for my mother. We felt it was a quick resolution mentioned to us by the Alzheimer facility staff. My family did some research and felt it would have been much more harmful to her. We also tried forms of meranol (which is like medical marijuana of some kind) for the paranoia, which didn't work well either. So they kept working with her meds until she was under control again. This lasted until July 4, 2004 when I was called because my mom had a seizure. No one in my family has had a seizure ever. This was scary because of two reasons. The first reason was the nurse that called to inform me (had become really attached to my mom and treated her special) was almost hysterical and made the situation much more elevated than it already was. The second reason was even though there wasn't much physical damage (meaning when she collapsed she wasn't harmed, only bruised) but mentally she changed again. The emergency room ran several tests on her and only minimal damage was done to her brain. Any recognition she had with our family was gone. She was always nice to us when we visited but it just felt different. Our family knew that her body was not going to last long for this disease.

My mother still continued to pace around. Eating became our next concern because she also seemed to be losing weight. We thought it was because she literally couldn't sit down long enough to even eat a meal. We found out that her body was not processing the food and she wasn't really digesting anything. This was a very bad sign. Then around the first week of August the living facility called to notify us about my mother falling down for no reason. Our family thought this was strange and when the doctor came by to do her weekly visits, we asked her to examine Mother. The doctor suggested hospice. She explained that Mom was running herself slowly to death. Mom's body wasn't accepting nutrients. This also meant it wasn't accepting her medicines either. There were too many risks involved for my mom to continue living at the Alzheimer facility.

So we decided to take the doctor's advice and she contacted hospice for us. I had heard of hospice before but didn't know the details. They offered to come to our home and explain everything. If you are unfamiliar with hospice as I was, let me tell you how wonderful they really are. THEY DID EVERYTHING! They offered many different options for Mom and were considerate about our family's wishes. We chose to have her removed from the Alzheimer facility by ambulance and taken to the hospice center.

At the hospice center, Mom was sedated the first day. She kept trying to get out of the center. We gave my mom a second day to calm down and adjust to her new surroundings. The third day was when we visited Mom. It was quite a shock. She looked awful. She had gotten a black eye from falling at the Alzheimer facility (they did call to notify me but I still wasn't prepared). She was in a very deep sleep. I didn't know they put pads around the patients to keep them comfortable and safe. Mom was finally able to rest and slow down from all of her pacing. She declined in a matter of days and went from solid meals to liquid meals to thickener they put in a glass of water. We had to use a swab to moisten her lips.

On the next day's visit, Mom was awake and got very upset when we were visiting her. We were told there were too many family members in the room and it overwhelmed her. Looking back on it now, we believed she knew something was wrong and she was dying. Mom kept crying. When the nurse asked her simple questions my mom answered "yes" or "no". It was hard to understand her speech but we were shocked she even answered. I think about that day A LOT. I worry that she was present mentally and knew what was going on and she was so upset because she didn't want to die. As I stated in my first story, I am an only child and I think she fought to stay alive. I felt like it destroyed my mom not being able to verbalize her thoughts and couldn't say goodbye. I know she didn't want to leave me, even though I would whisper to her that it would be ok to be with her parents in heaven and I understood if she didn't want to suffer anymore. I assured her I would be all right without her.

Our family would visit often but she wasn't awake anymore. I can proudly say I fed her her last real meal. It would just be a matter of time when her breathing changed, that hospice called us. I knew I didn't want to really be in my mom's room when she passed because as her child there was a part of me that felt like I should prevent it. (In my heart anyway, my head knew it wasn't preventable). I think my mom knew that because when my aunt and cousin had stepped out of her room she took her last breath and peacefully passed away on August 24, 2004. She was ONLY 59. My husband, daughter, and I were in route to the hospice center when she died. We had only missed it by 5 minutes or so.

Our saga lasted only a year and a half. It's hard to believe it ever happened. It was like my mother had been a missing person. The lady I knew as my mother: strong, smart, witty, and pretty is now in heaven. I find myself wondering why life is so cruel. I keep reminding myself... Life is what you make it. Thanks to anyone that has read the rest of my story. Remember you're not alone and neither is your loved one. My mom's an angel and maybe she can help in some way. My thoughts and prayers are with you always. One thing is for sure... I will NEVER FORGET!

Story 4. Received: April 30, 2004


As I write this, Dad is dying. It is April 16, 2004. Dad is 77 years old, he recently had his March 21 birthday. I have just finished cleaning his mouth out with wet washcloths. He keeps choking on his lunch, which seems to be coming back up, instead of staying down.

S put it very well. Dad is in a dream, sometimes he can communicate in the present with us, but he is still in the dream, and he communicates mostly with those he sees in the dream.

In 1995 my daughter J graduated from college. It was then I noticed how stooped Dad was and his head drooped in all the pictures. He was also very slow to walk. Wondering why, but putting it down to old age, I did not mention it to anyone. Now, I know, it was the start of Lewy Body Disease.

There are four children in our family, and Mom, age 75, is still living here at home, with Dad. I am the oldest, J, age 52, then my sister C, age 51, our brother S, age 47, and our youngest sister J, age 45. Right now, I have left my husband to be a bachelor and moved in with Mom to help her care for Dad. While we have hospice care, one older person cannot do it alone. The two of us make a pretty good team. In a month, C will come to help, and I will go home. J helped every night while he was in the nursing home for 3 weeks, and visits every day, as she lives here. S came in a month ago for a visit, with his wife and daughter. They were a good help for Mom, both physically and emotionally.

As Dad slowed down over the years, J's kids said their Grampa had two speeds, slow and slower. A man in the church jokingly told J she would have to stand Dad up next to a fence post to see if he was moving! Dad would just smile his beautiful peaceful smile, which he still has today. During the past five years Dad has nursed Mom through two knee replacements, a broken pelvis, a car accident and a broken ankle. He never complained, even though he got slower and slower. His only statement to his condition was to Mom one day during her broken ankle episode, that it was kind of hard to be the patient and the caregiver. He did the dishes and ran the sweeper up until he could not walk. While Dad went to doctors regularly for many other reasons, including bladder cancer, none of them picked up on the advancing disease. Mom was constantly telling him to get up and move, don't sleep so much, cut the grass, keep going, he was not an old man yet.

In the fall of 2003 Dad went to his regular doctor for a regular checkup. This doctor had, a couple years previous, told Dad he probably had Parkinson's Disease, but it was slow moving, and that Dad would probably die of something else, not Parkinson's. This doctor would never let Mom or Dad get the whole story out about any symptoms of anything else. He would always say to concentrate on one thing at a time. Finally, during a visit this late summer, Mom insisted he let her talk. The outcome was medication for Parkinson's Disease. Dad was put on Sinemet.

Immediately the hallucinations started at night. Dad had always had nightmares, so it was hard to decide between the two sometimes, he would wander all around and be very confused at night. The confusion and hallucinations continued into the daytime. Finally, a trip to the doctor was scheduled. Upon being told of the hallucinations, the doctor said he had dementia, took him off all medications, including blood pressure, and incontinence drugs. Dad was given Rispordol. The doctor said he had to deal with the hallucinations and dementia, and then he would go back to treating other symptoms. This was the beginning of the end I feel. Rispordol is the one drug that should not be given to LBD patients, as its side effects mask Parkinson's Disease. This drug was given to Dad in October. By Christmas, he could barely walk, he was in diapers, he was confused more and more, he was asking to use the toilet 10-15 times a night. This meant someone helping him up from the bed and putting him on the potty chair, then back to bed. Sometimes it was not 10 minutes and he would be calling again. Even then, if he slept an hour or two, his briefs would be soaked, sometimes clear through and soaking the bed. Dad's muscles were so stiff and he was so tottery he could not get up or down from a chair or bed without assistance. Mom was taking care of him full time and wearing thin. Occasionally she would get a nurse to come in at night to give her a break.

Then Dad asked that all his children come home for Christmas. We all arrived a couple days after Christmas, and we were shocked to see his appearance. He seemed to have one foot in the grave. The Parkinson's face was in full swing, and all the above mentioned, gave us all a scare. Then there was anger that this had not been taken care of properly and the ones of us that lived a distance were not told of his seriously deteriorating condition. Mom and J did not see it as the emergency the rest of us did.

Meanwhile, Mom had been trying to get Dad back to his doctor and the doctor's office was closed, due to ill health of the doctor. His office staff gave no assistance. Finally the week after Christmas we took Dad to Mom's doctor, who would not see him or advise on another doctor's patient. Thankfully, this resulted in a call to the original doctor's office who were very surprised that Dad had not been to the neurologist appointment they had set up for him. Well, how could he go if he was never notified? And we were just continually told the doctor was unavailable? What a mess. So an appointment was made for the next day.

The neurologist made an initial diagnosis of Lewy Body Disease, which we had never heard of, and for which there is no cure. He said Dad had all the symptoms, except he could still follow a penlight with his eyes. He took away the meds Dad was on, very upset with the course of action from the original doctor, and prescribed Requip, the drug for Parkinson's, the only part of the LBD he could treat. Dad immediately started to improve. He was still confused some, but the Parkinson's face went away, and he was more stable on his feet. A trip to the urologist gave back some control of the bladder. He still had "sundown syndrome" and restless leg syndrome. So he was still up a lot at night, often by himself, pacing the floor or getting something to eat. He wasn't as confused or having hallucinations. He was improving until the fall.

February 8, 2004, J got a call about 11:00 pm. Dad had fallen and would she and her husband come and help get him up? Apparently, Mom had heard something, but did not get up immediately. Finally she heard him calling her and when she got up, there he was on the kitchen floor. He said one leg moved and the other one didn't. He said he wasn't in much pain, so they put him to bed. Later in the night, he called Mom and was hurting. Still nothing was done. Finally around seven in the morning, he could not get out of bed and was in pain. Then the emergency squad was called. He was taken to the hospital where a fractured hip was found. The surgery to replace the ball of the hip joint was scheduled for the next day.

I drove down the day of the surgery, and got there in the evening. I spent the next four nights and days in the hospital with Dad. He seldom regained his mind. He was confused 99% of the time. He was unable to respond to physical therapy because of the confusion his mind was in. When I asked the surgeon about the confusion and if it would ever go away, I was told, probably not. He explained that most older patients with hip fractures became confused from the fall and/or the surgery, and most of them did not regain their mind. That was very sad news, as none of us had been told this or expected it. We had no idea our Dad would never be the same again. His body was just not able to handle the shock of this and all it entailed. In his already fragile condition, the fall took him over the edge. Leaving Dad in the hospital that day to return home was one of the hardest things I have ever done.

It has been a long journey from the hospital to the nursing home for 21 days of therapy. There he was still confused so much he was not able to respond to therapy. He got stomach flu twice, which weakened his condition severely. Finally, after 23 days in the nursing home, he was sent home under the care of hospice. He has never walked on his own since the fall. We semi-carry him to a chair and back to the hospital bed. He looks at us with one eye open and one closed. His eyes tear constantly. Both eyes are now bloodshot from burst blood vessels, the cause of, we do not know.

He had been home three - four weeks when I got here April 2, 2004. What a sight he was. He is still confused 95% of the time, is diapered, fed, bathed, hugged and kissed often. I love him so much, it breaks my heart. Sometimes I don't see how he will make it through the next few days, and then a few days later he is looking stronger and falling out of the chair as he pulls himself up and over the arm of it!

After reading about Lewy Body Disease when we were informed of it from the neurologist, we could tell Dad had the symptoms of this more than any other one disease. The hospice nurse wondered where the Parkinson's face was, if that was the diagnosis; he certainly didn't have the face, or severe tremors. She too agreed with LBD. I suppose, short of an autopsy, we will never know for sure. What I do know for sure is that a sweet, intelligent, kind, loving, soft hearted, giving, sacrificing, peaceful, Christian, lover of Jesus, preacher of God's Word, scientist/chemist, husband, father and grandfather, is just a shell, waiting to go Home.

We also know that he is in God's hands and He alone knows Dad's condition. He will care for Dad and for us, his family and caregivers.


Stories, May 2004
Stories, January 2004
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