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.

Moving Mom Into An Adult Foster Care Home For the Aged

Hello Everyone,

After another fall and a return to rehab for several weeks my sister and I have finally taken the steps to move mom to and Adult Foster Care Home ( also called Homes for the Aged ) on a full time basis. This was one of the hardest,  heartwrenching decision we have ever had to make, but it was best for all.

AFC - a house like you or I would live in, only with some modifications inside to accommodate the residents.

My mom as you may know from my previous posts has lived with either myself or my sister since 2001 when dad passed away. She is now almost 92 and has started to develop dementia. My sister and I are not getting any younger and the increased care my mother required was making it very difficult. She could no longer be left alone even for a few hours to go shopping so we had to have someone with her around the clock and night time care literally meant no sleep for my sister, who has and needs to keep her daytime job as her husband was laid off after 27 years, leaving them with one income.

We therefore decided it was time. Time to make things better for all involved, especially mom. We searched and searched and finally found a wonderful Adult Foster Care Home only 10 minutes from both of us.

Do You Know About the Treatment for Edema In Legs ?

Today I want to share with all of you a treatment we just started using for my mother's edema*.

Until about 6 months ago my mom's legs were fine, no hint of edema at all. Then after her last hospitalization she started having problems. The pitting edema** would go up and down until it finally would not respond to the actions my sister and I were employing at all, such as elevating the legs. We even got her a hospital bed to help. We also used compression stockings, which my mother hates as do many people who have to wear them.  Then one day at a routine foot doctor appointment the nurse asked if we had a 'bio compression system' for her. I had never heard of it. The doctor who explained a little about how it worked, said 'Medicare pays for it and would we like to try it?'. So I thought why not, anything to get the edema in her legs down.

About 3 days later the rep from the Bio Compression Systems company came by and set us up. The system is very easy to use. It consists of a small compressor, and two ( what I call Moon Boots) sleeves that fit over each of the legs and zip up on the front of each boot. They each have a hose attached that you plug into the compressor. Once they are on you turn the compressor on and the boots begin to inflate in sections, starting at the bottom moving up to the top. The idea is that as they inflate in this gradual progression they push the water up the leg, and increase circulation at the same time. 

I must say we have seen an improvement. Mom is suppose to wear them for one (1) hour twice a day. Again the name of the company is Bio Compression Systems out of New Jersey. Their phone is 800-888-0908. They may be able to recommend a doctor in your area who can write a script for this. It has to be used under doctor supervision and not everyone is able to use this, but it may help some as it has my mother.

Until Next Time

Take Care

Ruth A

"Love me my Moon Boots!"

* Edema: A condition characterized by an excess of watery fluid collecting in the cavities or tissues of the body.

** Pitting edema: Observable swelling of body tissues due to fluid accumulation that may be demonstrated by applying pressure to the swollen area (such as by depressing the skin with a finger).

Wikipedia link describing "Pitting edema" with photos - Will

  Important notice: PAL Caregivers.com - This website and its content is available solely for your information, interest and education. It is not affiliated in any way with any of the goods and service providers listed. We highly recommended that you interview and check references for any providers, goods or services. You should not rely upon this site as the sole basis for any decision or action you may take after reading one of our articles. We do not provide specific endorsements for other goods, sites or services.

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

Today Is Another Family Caregiver Day

This morning I don my family PAL hat, as opposed to my professional PAL hat.

 

Monday is one of my days to care for mom. So up at 5:30 a.m. to be to sisters by 8:00. Mom needs to go for blood tests today and can't eat, so we're going to get an early start... well so I thought.

Mom is getting very slow these days so I need to be super patient which isn't always easy. Most of us are so used to doing things fast - just donning our clothes and jumping in the car. Not so when you are a person of 91 years. An hour to dress an then 15 minutes to load into car before we can go. But that is just the way it is, we must move at their speed, we cannot hurry the family member we care for.

After blood tests mom wants to go to lunch. I can't say no, she doesn't get out much and lunch out means so much to her, and its worth the effort. I then spend the rest of the day with her at my sisters house while my sister is at work. I know how stressful this is becoming for my sister and I try to do as much as I can to lighten the load. Tomorrow I have my client I care for but must spend some time looking into a place for mom. Will update you on the search process and how it all progresses.

Until then Take Care

Ruth Anne