The Plague of Dementia Hit Robin Williams Too - What is Lewy Body Dementia ?

An underlying brain disease may have been the cause of his depression.

 

This past Tuesday morning as I always do, I sat enjoying my coffee watching the morning news when an interview took by breath away. The interview was with Susan Williams, the wife of the amazing actor and comedian Robin Williams. I sat silent, tears in my eyes as she spoke for the first time about the death of her husband. The heart wrenching interview struck quite a nerve for this caregiver when she revealed that Robin's autopsy showed he was suffering from Lewy Body Dementia or LBD for short. As a caregiver I have seen many people suffering from dementia - to many! LBD is the second most common form of dementia next to Alzheimer's. It is estimated that 1 million Americans suffer from LBD. 

Susan spoke about Robin's sudden rash of symptoms that started popping up about a year prior to his death. She said he complained about things like severe pain in his gut, sleeplessness and constipation. She even thought he might be a hypochondriac. But then he was diagnosed with  Parkinson's disease in May 2014.

Macular Degeneration and Hallucinations

Hello Everyone, hope all are well. As I mentioned a couple of days ago, today I will share some interesting information on macular degeneration and hallucinations. Although unknown to many of us, people with macular degeneration or other low vision problems often see hallucinations. I became aware of this one day when I took my mother to the eye doctor many years ago.

 
Macular Degeneration. The macula is made up of millions of light-sensing cells that provide sharp, central vision. It is the most sensitive part of the retina, which is located at the back of the eye. When the macula is damaged, the center of your field of view may appear blurry, distorted, or dark.



My mother's macular degeneration started some 28 years ago before there was any real research being done on the affliction. There were no shots to slow the progression as there are today, so she lost most of her sight in just the course of a few years. She was, as she is to this day, almost totally blind, having no central vision at all and only hazy peripheral vision.

One day before her sight was as bad as it is now I took her to a wonderful sight specialist in Grosse Pointe, Michigan. Her name is Lylas G. Mogk, M.D. She is a lovely doctor, very kind who had a father with macular degeneration. She also wrote a very wonderful book on the subject sharing not only medical information about the affliction but she also shared many personal items about how her father coped with losing his sight. As we walked down the hall to the exam room we noticed some drawings on the wall that looked like they had been done by children and we thought how quaint. As it turned out, those drawings were not done by children but in fact by her patients. They were drawings of the hallucinations they had experienced. Several of the drawings were remarkably similar, rows of houses with long stairs or children playing in the yard.

My mom could still see a bit better back then, and when she saw the drawings she said, "those look like the things I see". Until then I did not even know she was having hallucinations. She never talked about it, fearing people would think she was crazy. And that is how many people who have these hallucinations feel. They know the things are not real and if they talk about them maybe someone with think they are losing their mind, so they stay quiet.

There is in fact a real syndrome that people with vision problems relating to hallucinations may suffer from called - Charles Bonnett Syndrome or CBS.

If you would like to read more about this condition,  Charles Bonnett Syndrome, I have included a link to a web page with more information : CLICK HERE

If you are a caregiver and your client or family member says they see things that are not there, don't jump to the conclusion that they are starting down the road to dementia. If they have not had their eyes checked recently, then now may be the time. The things they see may be related to the development of macular degeneration, glaucoma or some other vision loss affliction. The sooner they can receive treatment the better is the hope that they can preserve as much of their vision as possible. I asked my mother yesterday if she still had these hallucinations and she said only very rarely, not like she did before. And the information on CBS does say that most of the time these hallucinations stop occurring or lessen with time.

If you know or care for someone with vision trouble, and they had never said anything about seeing strange things, maybe it's time to ask them in a kindly way. If they have had hallucinations, it could be a wonderful relief to them knowing they are not the only one seeing things that are not there. No one wants to be the only one.

I hope this information has been informative and helpful. The more we as caregivers know about such things, the better we can help those we care for and that in turn leads to less stress. And what caregiver does not want less stress! If you have information or experience with any of the things you read here or want to ask a question, please feel free to do so. We are on this journey together and remember it takes a village....We are your village!

Until Next Time Take Care

Ruth Anne

Helping Our Alzhemier Clients: Do They Experience Hallucinations ?

Today is a rainy cold day and I am off work, so I don't have to be at mom's today. So I thought I would share with you and interesting bit of information I have just learned about Alzheimer's clients.

Most mornings I will listen to NPR (National Public Radio). This week there was a piece on about Alzheimer patients and hallucinations. The report tracked a patient with Early-onset Alzheimer's disease, who is using a tape recorder to journal his experiences as he travels this very scary and unfamiliar road. A road which many of us may one day travel ourselves.

The report was titled - Seeing What Isn't There: Inside Alzheimer's Hallucinations.

Salvador Dali: Persistence Of Memory

What I find interesting as a caregiver is how this piece of information may in some ways help us understand our clients better. One case in point I can think of is showers. If you have the responsibility of showering a client with Alzheimer's you know it can be a very trying experience for both you and your client. My clients physician once told me that they don't see the shower for what it really is, and may perceive it as a threat of some kind. He had a patient who thought he was being asked to get into a boat and he thought the boat was sinking. That of course made him very fearful. Could it be that he was hallucinating at the time? Well maybe so.

There are other times when our clients behavior may seem odd to us, however if they are seeing things that are not there it would explain a  lot about their actions. This is just one more bit of information that we can have in our data banks to help us deal with the day to day issues that we face when caring for an Alzheimer's patient, whether it be a client or family member.

"Up to 50 percent of people who have Alzheimer's disease experience hallucinations, delusions or psychotic symptoms, recent research suggests." - National Public Radio

On a similar note my mother has severe macular degeneration, and it is common for patients with this disorder to see strange things also. I will share some insight on that with you tomorrow. And also I will have some links to information on just what it is they see, because believe it or not, when they tell about their visions - or draw them if they able there is a common thread...... so unusual you wont believe it.

Until tomorrow Take Care

Ruth Anne