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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, October 2013 - August 2014 (4 stories)

Story 1. Received: October 20, 2013

My husband passed away in July of this year after 39 months of 24/7 home care aides, many trips to doctors and many medications. When he was first diagnosed I scanned the Internet for information and found your Journal. I printed them all and have them in a large note book which was required reading for all of the caregivers. I was fortunate to have good caregivers on the most part. There were a few I had to part ways with because they just didn't understand the differences between LBD and other dementias. Treatment has to be given lovingly and if it is not the tide will turn in an instant. The biggest challenge with caring for a person with LBD is the great extremes of behavior. The fluctuations from day to day and during any one day are trying to any caregiver.

I was fortunate that we had taken out long term care insurance back in the 90's. If we had not done that I would not have been able to have kept him at home. He received far better care at home and it was easier on the family. We have two children who both live near and four grandchildren who could continue to visit as often as possible and it was important to his well being.

When I started to read your stories in the Journal I could see threads of behavior that crossed through many of the stories. It was frightening to read what was to come but I had to face reality to be ready for it.

He had triple by-pass surgery in 2004 and for awhile he was fit and felt good. But in 2006 we started to see the beginning signs of what was to be diagnosed as LEWY BODY DEMENTIA in 2009.

As I read more about LBD I realized that there were many other signs that it was coming. The symptoms mentioned that are associated with LBD were there:

Those were the early signs which I helped to shield from others to protect him. That's what wives do.

But when the hallucinations and falls started we had a problem. One time he could not get up and walk on his own. I called the ambulance and he went to the hospital for 10 days while my children and I prepared our "hospital" room at home for him. We organized a schedule and caregivers started round the clock. I could not handle him alone. During the 39 months, I was hospitalized in 2011 and again in 2012 with some serious problems. But because I had a good built in system at home all went well.

I am on the monthly e-mailing list for the LBD Association (lbda.org) and I try to educate others about the disease. I also donated his brain to the Harvard Brain Bank to help with further research on the brain.

Thank you for being there for us.

HPB

Story 2. Received: November 10, 2013

Hi all. I was so pleased to find this site and I would like to share our experience with you. On the 21st of April In 2010 I decided to give my husband a surprise 70th birthday party and this was the first time I had noticed anything odd about his actions. (Although on reflection I had noticed he was a bit stooped and walked with a slight shuffle and was, I thought, a little bit depressed.) My friend and I came up with the idea that she was going to treat him to an Abba concert at the venue we were having the party. My hubby loves Abba and was not suspicious, although he said he hadn't seen it advertised. We were to be out for dinner at seven and were being picked up at six thirty. I went to the venue in the afternoon to put some final touches to tables and at about three thirty I received a call from him in an agitated state to see where I was. This was not unusual as he is a quite possessive man and liked to know where I was most of the time anyway and I took no notice.

I arrived home by four and he was in a state, wanting to get ready or we would be late. (He always has to be anywhere a half hour early.) He said he would get dressed and I persuaded him to wait a while as he was bound to pick up his little dog or spill something on his clothes. However he couldn't wait and I came in from outside to find him in the bedroom dressed except for his belt. He was holding it and looking at it as though he didn't know what to do with it. I might say this really scared me as I thought he may have had a mini-stroke or something. I went to him and took it and said can't you find the right side and he said no and I showed him and he asked me to put it on. This put a bit of a damper on the evening and I dare say the shock of seventy people screaming HAPPY BIRTHDAY may not have helped either.

My husband is a handsome man and was an electrician by trade and very clever. I could not help but notice that night he looked older than his seventy years and sometimes seemed a bit vague and insecure and kept coming up to me as though he needed me near him. After all of our family and guests had left to go home over the next two days, I really kept a closer eye on him. I noticed a slight tremor in his hands. I asked him about this and he said he had noticed it too. I also asked him if he felt depressed and he said yes. (My husband had a fall from a ladder about five years ago and shattered his heel. At the time he used to breed and show budgerigars very successfully and loved his birds. He had to sell them as I worked and couldn't look after our large lawns, garden and the birds as well. I loved them too and we were both extremely sad to see them go but he had to have lots of operations on his foot.) My hubby loved fishing and golf and had to give them all up as he lost confidence and I put his depression down to losing all of his pastimes. I know when I gave up work I found myself depressed but I found things to occupy my time whereas he was happy to sit around.

Getting back to his depression, we went to his GP who prescribed antidepressants. These in fact made him quite ill. I asked his GP if it could be Parkinson's Disease as I had looked it up and read a lot and he quickly told me it wasn't, it was just depression and he needed to get out and do things. I partially agreed with the making himself busy bit but my gut feeling was telling me there was something else wrong. We had been married for almost fifty years and I know him very well. For twelve months we kept on but the GP was relentless that it was depression. We were visiting him at least twice a week and my husband wouldn't change. Suddenly one day the GP out of the blue said I think you have Parkinson's. I was gob smacked and never felt more like slapping someone than I did then. It took nine months for us to be able to see a neurologist and he confirmed Parkinson's Disease. He said that some people also developed Dementia and I knew deep in my heart that my man was going to be one of them.

It wasn't until April 2013 that we received the news that he had Lewy Bodies and were told to prepare for a rapid decline in his condition. I was shattered as the father of a friend of mine had passed away in June 2012 with this dreadful disease. He too was diagnosed with Parkinson's five years earlier and then Lewy Bodies three years later. It is true the decline has been rapid with hallucinations and anxiety among the many changes. Obsession with our little dog who he can't bear to be away from. I have had to give up my part time job (which happened to be at a funeral home) mainly because he didn't like me out of his sight, and also I volunteered at the local hospital. I loved both of these jobs and miss them, but I felt his self security was more important.

He is obsessed with money and is afraid of not having enough for when we are older. He doesn't understand his prognosis is not good. He is always pulling cotton out of his food and sees it coming out of the heater. We have ants and spiders crawling all over the floor and people in the room with us but he doesn't talk to them. He can not count money, use the remote controls or the telephone. He was once a beautiful hand writer but alas that has gone now his writing is legible but just. I, like many others who have written in, believe his symptoms started as far back as twenty years ago that was when the nightmares were happening.

Thank you for giving me the chance to talk about our life as it is, as my family are finding it hard to deal with and tell me "I am exaggerating, he is not as bad as I'm making out." I understand they are probably in denial as it is all so sad.

KIND REGARDS AND THOUGHTS OF EVERYONE WHO HAS WRITTEN IN, JVS

Story 3. Received: January 31, 2014

Dad had been slowly declining mentally and physically for a few years when we read an article about Lewy Body Dementia. He had every single one of the symptoms. In October 2013 I convinced him to move out of his house (at age 92 he was still insistent on driving) and into an independent living facility with my mom, who was tired of taking care of the meals, house and Dad's nighttime wanderings and hallucinations. When he moved we realized the extent of his illness. He could not find his way to the bathroom that was right next to his bedroom. He could never have found the communal dining room which was down a hallway and one elevator flight down. Every night he asked where he was supposed to sleep. I can only assume that at home he was on autopilot but when faced with a new location was unable to imprint anything about it. I lived far away and whenever I had come back to see him he did manage to fool me about the extent of his condition. Only Mom really knew how far gone he was mentally.

I was about to write to his doctor when in November 2013 Dad fell and broke his hip. He had started falling with increasing frequency, out of bed, when getting into his chair, and now just walking in his room. After the operation he was vastly diminished. He could barely whisper a few words, couldn't eat anything other than thickened liquids, couldn't walk and became totally incontinent. His hallucinations were constant and when he did speak he rarely made any sense. He had to move into a nursing home and did not realize where he was and why but he hated it and constantly kept asking to go home. His weight dropped steadily over the next couple of months and then he left us on January 27, 2014. A few days before he passed, Mom had been in to see him and he took her hand and held it for an hour. That was very unlike him; when you took his hand usually he didn't appear to care. I think he realized he was going to go soon. When Mom came by a couple of days later he was laying in his bed, completely unconscious. He passed later that day. I can say that it was a relief for us as it was hard seeing him in that state, and being unable to help him.

Story 4. Received: August 3, 2014

Dear LBJ,

My father just went into hospice. Your journal has really helped me. My brother and I (both in our early 40s) are the only siblings living near my father. Our parents divorced not too long after his first symptoms appeared. At the time they divorced, he was in his early 40s. By the time they divorced, he already had a severe sleep disorder and behavior issues. We didn't attribute either to dementia and neither did any of the doctors. In hindsight I now wonder if his poor decision making could have been caused by changes occurring in his brain at that time. He never remarried. It has been particularly hard on us not to have the help of another parent. At the same time it's been a blessing to be able to serve him the way we hope someone would do for us if we were in that condition. It has brought us closer to him and made us more empathetic individuals.

We too could not provide him with all he needed for his care and had to find an assisted living facility. There are many facilities that know nothing about treating LBD, though many will claim they are capable. Because we were able to get him to a functioning stage for a good year (because of the carbidopa/levodopa), he was able to function quite well with some minor assistance with medications. Once the decline occurred, we moved him to a new facility with better care and a week later he was put in their hospice care. The end decline was quite rapid once it began. He had about three months when we first started noticing some minor changes to where he is in hospice today.

He has followed much of the pattern you list in your journal, including at one time telling me that a picture I was showing him of our family was "a fake family" similar to your story. He is now 70 years old. He doesn't want to live any longer. This past week he has found very little enjoyment because he realizes his dementia has taken a quick course downward and now he has "no power." The doctors say he is unique in that very few people recognize what is happening at his stage but that he is aware of it which is causing a lot of his frustration and agitation. He was always very intelligent, but I'm not sure why he was able to comprehend this for so long.

He still speaks but the majority of it is does not come out properly. His understanding is better than his vocabulary, though we find ourselves repeating phrases often and learning to listen more than talk so that we can try to understand what he wants to communicate. His lucid moments are more like flashes now, in between confusion. Those moments are bittersweet because you want to grab onto them, yet at the same time it is those moments when he is most aware of what he has lost. That is painful for him which is painful for me to see. Did you notice during the bad episodes that their eyes go very distant and it's like they are looking beyond you? I think maybe his pupils are not dilating which may be why he looks so distant, but his eyes look so different when he is not lucid. I was just wondering if you noticed that happening with your mother.

There is a lot of guilt associated with this disease because as a child you feel neglectful when you aren't visiting every day. I know that logically this isn't expected nor should it be, but it's very hard to quantify spending time on other things when you know his time is limited. He doesn't expect it of us. He also feels guilty because he knows it puts a burden on us. I do know that he appreciates us visiting, even when he's not lucid. I'm just grateful for the time we did get with him and I hope more people will learn about this disease so that it can be properly diagnosed and treated. There are far too many physicians who know nothing about this disease and throw medications and diagnoses that are not only wrong, but often harmful to LBD patients. People need to know that Lewy Body Dementia begins for many people much earlier than other dementias. The changes in the brain begin long before symptoms appear or are understood to be symptoms and not attributed to a personality disorder. It isn't uncommon for an LBD patient's first outward symptoms to begin in their 40s.

As for caregivers, there are far too many caregivers who think because a person cannot communicate verbally, they are not still in there. LBD patients comprehend far longer than they are able to communicate. They are still people who deserve to be treated with respect and love. They are often aware of what is going on around them regardless of whether they can communicate it properly. So much needs to be learned by the medical community regarding this disease.

I too worry that I will get this dreaded disease. It's hard not to worry, particularly with a disease that has cases diagnosed as early as 20 years old! For me, I think one of the defining differences between LBD and other dementias is the response to carbidopa/levodopa. It truly was a miracle drug for a few years. The Alzheimer's medications did next to nothing to help my father but the carbidopa/levodopa once prescribed were like night and day. They extended his quality of life for about four years. If he had not been given the carbidopa/levodopa, he would have remained in a near catatonic state, which I can assume may also have lasted four years. He was able to care for himself for three of those four years with some minor assistance and the last year in an independent/assisted living facility.

Thank you for your journal. It helps to know what to expect as well as knowing that others have similar feelings and know what we are going through.

KM

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