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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, August - October 2010 (5 stories)

Story 1. Received: August 19, 2010

I came across your website last night and now I can't stop reading it. I have forwarded your Journal on to my Mum, who was moved to tears as I was. My Nan has Lewy Body Disease and despite having 'good days' the last couple of times I've seen her this week, I know that the bad ones are sure to follow soon.

So many of the things that people have written have rung true with me. Things like hallucinating items on the floor, creepy crawlies on the walls and people who just aren't there, things like the words just disappearing off the pages of books she used to love to read, as well as not being able to get her words out — all of these things are like someone's writing about my own Nan. My Nan is like a Mum to me. My own Mum and I are very close and out of my Nan's 3 children and 6 grandchildren, it's my Mum and I that are the closest to her. Nan had some massive strokes several years ago and was left completely disabled (a blessing it would seem as she is unable to go off wandering — something my Alzheimer's ridden Grandad did, God rest his soul xx). She's since had many more strokes (TIAs) and since being diagnosed with LBD, her decline has become so steep it's almost painful to watch.

The last couple of years have been difficult for my Nan and she's now in a nursing home full time. She can't be left alone and can literally go on the turn at the drop of a hat, refusing to communicate either verbally or physically. My Nan has always been the strongest influence in my life and was always the one I went to when times were tough. She's been my Nan, my Mum, my confidante and my friend all rolled in to one and as much as I love her, I now dread going to visit her in the home. Sometimes she looks and sounds like my Nan but the fragile woman in front of me just isn't my Nan anymore. Maybe in a funny way that's a good thing because when she does leave me to join my Grandad, it might be easier to deal with. Almost as if I've already said goodbye and dealt with the fact that my Nan isn't here anymore. The turning point for me was when she said, "You're just like a mother to me". I wanted to scream and cry and say, "NO! You're the mum! YOU look after ME!!", but in my heart, I know that's no longer the case.

She used to come and stay with me and it was like looking after a baby sometimes. She was so completely helpless and unable to stand or wash herself, so in a way it makes sense that she saw me as a mother figure. I didn't like the silly one o'clock "I need a wee" alarm calls though, but when I'd see her little wrinkled face and know that she needed me, I couldn't help but smile and tell her it didn't matter and that I would always look after her. I dread the day she dies and after having read other people's experiences, I now dread when she can't even communicate with me anymore. So for now, I will make the most of every single golden moment that I get with her and when it's a bad day, will just look forward to the next good one because one day, there just won't be any.

With my kindest regards,


Story 2. Received: August 22, 2010

When I first told a friend about my Mom and some of the things that I had been noticing about her, right away she said that it sounds just like Lewy Bodies. I hadn't even heard of Lewy Bodies. That was just about a year ago. Move forward to today, and my Mom is now in a nursing home where she is trying to hold on to life as she once knew it. Last year, we took Mom to a memory clinic to have her evaluated and hopefully diagnosed because she was having difficulty with confusion, "getting the right words out," with falling and with dizzy spells. She too began to hallucinate and to get confused more frequently. It seemed to happen more and more often and to progress very quickly. Many nights when I would watch her sleep, she was acting out her dreams. It would look like she was chatting with someone as her little hands moved along with her talking. Her facial expressions would go from happy to sad — almost in an instant.

Her condition has deteriorated very quickly. She constantly complains of a dry mouth and says that nothing tastes good anymore. When she does try to eat, she becomes very upset because she knows that she is having difficulty getting the food to her mouth without spilling it all over. She often throws down the fork with frustration, but refuses to be fed by anyone saying, "I haven't had to be fed since I was a baby." She tries so hard to maintain her dignity while dining with many others around her, but I can see that it is getting harder and harder. My sister told me that one day when she was visiting Mom, that she didn't think that Mom was eating simply because she didn't remember how to eat. When she tried to put the fork in her hand, my sister said that she could barely pry her hand open. I have read about these same symptoms on numerous WebPages, including the journal entries here from so many others and they have described my Mother in so many ways. The simple things in life like eating, dressing and managing household chores have become too difficult or impossible.

I am worried about her safety, because she has never been a woman who sits still and does nothing. Her home was everything to her and she maintained it and organized it to perfection. Even now, as she sits in the nursing home, she says that she needs to get up and get some cleaning done and do a load of laundry. If she isn't talking about it, then she is acting it out as she dozes in her chair. We continue to remind her that she needs help when she gets up, but she doesn't remember how to use the call button, gets frustrated, so she just gets up. That sets off the alarm which adds even more frustration. We even saw her brush her teeth and get upset because the toothbrush handle wasn't long enough — except that she didn't even have a toothbrush in her hand, but to her it was very real and she thought she was already in the bathroom.

My mother as I once knew her is gone. I want to remain hopeful. Hopeful that the drugs she takes will help her have more good days than bad. Hopeful that she will be able to smile a little bit every day. Hopeful that those caring for her will treat her like she is their mother — keeping in mind that one day, that little woman may be them. She is my Mom and I love her with all my heart. My heart was broken this past week as I sat there with her as she patted my hand and told me that she was sorry she was "this way" and she would try to do better. She is a "beautiful woman" with a strong faith and I pray that she can find some peace every day.

I am thankful that she can still give me a hug and tells me she loves me because I know that may come to an end and that kills me. For everyone out there caring for someone with LBD, you have my utmost respect and compassion. I know what you are going through and I hope that you and your family will remain hopeful as well. Thank you for sharing your stories. Thank you for letting me share mine. It is good to know that we are not alone and don't forget to have hope.

Story 3. Received: August 23, 2010

Dear Lewy Body Journal,

My story is a bit different. Although Mom exhibited some obvious Alzheimer's symptoms, for at least 10 years prior to her death at 95 she had been phoning me some 600 miles away about the devil knocking on her front door in the middle of the night, or my older brother's making so much noise with his friends working on his car in the front yard that she couldn't sleep (my civilian-budget-director brother had already passed away), or that her deceased husband often visited her and slept in her bed at the assisted living center where my sister-in-law had helped me place her.

However, Mom's complaints grew so constant that after she fell and broke her hip I finally moved her by ambulance across four states to a center where I could visit her on a daily basis. But her complaints about thievery, mistreatment, and physical insults became so obviously over the top until I moved her to a nearby memory care center. I'll never forget my former-public-librarian mother announcing to my wife and me following one troubled evening that if she had a knife she'd cut her throat. I remember feeling miserable that I had failed her so terribly. At the end of another six months Mom mercifully died in her sleep from congestive heart failure. But I couldn't help believing it was from a broken heart and that I had failed her in her time of greatest need.

Now Mom's story is continuing in me, because at 70 I have been diagnosed with DLB [dementia with Lewy bodies]. A developmental psychologist and former university professor of education and psychology, I've read and reread trying to understand a way out, but no ultimate cure is out there at this time.

I'm currently enduring confusion, trouble calling up correct words, and an inability to follow complex directions; I even awakened one morning several months ago unable to divide by fractions — and I used to teach advanced statistics! (My wife re-taught me the fractions bit.) But my most painful and embarrassing problems currently seem to emanate from Parkinsonisms, like an unsteady gait, slow cogwheel movements, severe shoulder and hip pain from constant turning and twisting in bed (I'm guessing), loss of 50% of my voice volume, and my constant drooling. And hallucinations and vivid participatory dreams are now hounding me (like fearing for my life after awakening in a strange house that turns out to be my house, or seeing my youngest son and his family sitting in my bathroom in the middle of the night, or observing darkened giants ascending and descending the stairway). I usually recognize that these "visions" can't be true, but at the time they are very disconcerting.

I guess I must steel myself against an almost certain mental and physical "disintegration" at some future date. —But I'm still reading!!

From GC

Story 4. Received: September 15, 2010

My father, like most it seems, was initially diagnosed with Parkinsons. I consider the very first sign of anything wrong was when we noticed at Christmas 2006 that he had very quickly lost 20 lbs. We were all worried so Dad had a lot of tests to rule out any serious digestive illnesses. Shortly after, he started having trouble walking — slower, shuffling, unsteady movements. More weight loss — another 20 lbs. for a 40 lb. total! My sister pointed out that Dad's mental state seemed different but I argued that he was fine. Eventually I couldn't deny it, as he would ramble on for ages about random things and was fixated on the same nasty doctors, etc., etc. He was diagnosed with Parkinsons in Sept. '07. His feet became swollen and after his second fall, we got him a cane. Dad started Sinemet in March 2008.

Because my mother was showing signs of Alzheimers (which we had seen coming but put to the back burner because of Dad's illness that was moving like an out of control freight train), it became apparent that he wasn't taking his medication reliably. He would have episodes of severe rigidity and low blood pressure which would result in going off to the hospital by ambulance for an overnight stay. All would return to "normal" and Dad would come home. More missed medication. Dad off to the hospital again and this time he stayed for a month — we thought it might give us a bit of a break and that he would go through all the necessary tests, etc. However, he ended up just tanking during his stay there. This is when we noticed he was having delusions and hallucinations. We were terrified. Once out of the hospital, Dad was in diapers almost 24/7 and was now using a walker and sometimes the wheelchair. The dr. put Dad on Exelon. The Exelon made Dad vomit and he was then put on Aricept. He takes Seroquel to help with the hallucinations at night — it has worked well.

Anyway, flash forward to today — Dad is still on Aricept, Sinemet and Seroquel. We have tinkered with these medications to see what controls what and feel that we have a good balance. Dad is not quite bed ridden yet but he only moves, with the help of 2 people, from his bed to an electric easy chair and back again. He needs help eating and drinking and is 100% incontinent (has been for 2 years). He rarely talks anymore (he really responds to our dogs) and will not usually respond to you unless you stand right in front of his face or touch his arms or legs. His responses are usually bizarre laughs — my mother thinks that means he's happy (thank goodness) but they are usually kind of random and inappropriate to what's being asked.

My father has been gone for a good 2 years — he is now like a helpless child. We just deal with the symptoms as his body breaks down and do everything we can to keep him comfortable because there is really nothing else we can do for him. We have live-in caregivers (24/7) because my mother cannot take care of my father at all and has deteriorated herself quite quickly in the last couple of years (and as a matter of fact her symptoms keep us hopping even more than my father's — and she doesn't even have any physical symptoms yet). Having two parents with dementia, at the same time, has been the most difficult, painful, horrible experience of my life. And the worst thing is that there isn't any hope — we know it's just continually downhill. Trying to stay positive is a challenge. Anyway, it really helps to read other people's experiences and I thank you for providing us with a place to vent and share.



Story 5. Received: October 20, 2010

Dear Friends,

I wish I had found your site five years ago. This journey ended for us in 2007 when my husband passed away at the young age of 60. Like so many others, we endured endless changes in medications and fluctuating symptoms. There were long nights of up and down and seeing people who did not exist. There were hours of trying to help him understand the TV remote control or even the simple button on his lift chair. I watched this avid reader not be able to understand the words on a page, and saw the hurt look on his face when he could not remember a three word list. I picked him up from the floor more times than I can count, helped him bathe and dress and eat. There were moments that broke my heart, like when he asked who our daughter's mother was, or when we were going home as we sat in the house we'd lived in for thirty years.

This is a painful burden for patients and caretakers alike. For everyone who is going through this now, I pray you the strength you need and the comfort of love.

L.K., New York

Stories, January - June 2011
Stories, February - July 2010
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