Hiding Dementia Causes More Harm Than Good: Casey Kasem

A few days ago, I was listening to a local radio station, and they briefly mentioned that Casey Kasem (Top 40 radio host) was missing. I did not pay too much attention to what they were saying, but I remember they mentioned that Kasem's wife and kids were upset with him due to the way he was acting and that he was mean to them. I figured it was just another misreported story with people making assumptions in order to sensationalize the story. True, it was a misreported story, but I did not know that this story would be near and dear to my heart because, apparently, Casey Kasem has Lewy Body Dementia, which is what my mom has. It is unclear what has happened to Kasem, except that he was removed, supposedly by his wife, from the medical facility he was being treated in and no one knows where he is.

There are a few interesting things I noticed in just the few news reports I have heard and read about Kasem. First there were the radio shows comments on some unknown bad behavior on Kasem's part. I remember how their statements changed the way I thought about this man who I did not know, but had never heard stories about him being mean in any way. I thought "Just another person who sounds nice, but then you find out he's actually not." Clearly there were rumors about his "behavior," and instead of anyone being honest from the beginning about Kasem having dementia, the family and media hid it, making everything confusing and painting him in a negative light.

The other thing that was interesting was an interview with Kasem's daughter who says Kasem's wife took him out of the medical facility (this is not confirmed to my knowledge.) Of course the reason the daughter gives for the wife acting this way: mental illness. Just another time people blame mental illness for any behavior they do not like. Then, in that same interview, dementia is again hidden and they only say Kasem has Parkinson's, which is seen as a more "acceptable" illness. (Technically, that is not a lie. Lewy Body Dementia is dementia with Parkinson's.)

I am so tired of everyone trying to hide dementia, and in that hiding, the stories that come out usually reflect negatively on the person with dementia- implying that they are mean or in some other way just not a very good person. Denying the illness and not getting the proper treatment only makes behavior issues worse, which then increases stigma against the illness when it is finally revealed. Now that the story has come out about Kasem having Lewy Body Dementia, anyone who heard reports that he was mean to his family, now just blames that on dementia, rather than looking at the care he received and communication issues that can lead to behavioral problems.

I am also tired of people automatically blaming any supposed negative actions or behavior on mental illness, like Kasem's daughter did with her step-mother. Again, this adds to the stigma against mental illness, implying only people with mental illness do negative things. In reality, there are a lot of perfectly mentally stable people who do far more negative things than anyone I know who has mental illness.

This small news story about Casey Kasem just brings to light the fear and misunderstanding we have over various illnesses of the brain. What I wish is that someone would have thought of Kasem first, and considered the best way to help him have the best life he can living with Lewy Body Dementia. Hiding his illness resulted in a serious risk to his life, and that is a tragedy. I hope he is found and that his community rallies around him, treating him with compassion and respect in the end years of his life.

Blessings,

Rev. Katie

Our First Montessori Based Activities for Dementia

Over the past few weeks, we have tried a few Montessori based activities with Mom. We are learning what will work for her as we go along. It has been really interesting to try different things that you think will work and are accessible for your loved one and find out there may be more limitations for them than you realized. It all depends on what kind of dementia and other issues your loved one has as to what will work for them.

Mom has Lewy Body Dementia which means she has Parkinson's-like symptoms so her hands shake and movement is hard for her. In the two activities we tried, it was hard for Mom to do the motor skills to complete the projects, but our son was good at helping her out. We did both of these projects with me and our eight year old son assisting Mom.

Our first project was to make templates for setting the table. Montessori uses templates in many different ways in the classroom. For instance, the world map puzzles have templates (control maps) in varying degrees of detail (labeled and unlabeled) in order to help the children learn where the states and countries are and start to memorize the maps. We made place setting templates with Mom because Mom likes to set the table but does not remember where the items go.

Placemat Template. Photo by Jeff Norris

Part of Dr. Cameron Camp's suggestions for Montessori Based Dementia Care is to have your loved one help you make materials for activities as much as possible. So with the place setting templates, making the templates was an activity and now she has the activity of setting the table each day if she wants. Mom had a hard time following directions with this one as she needed to trace things, like a plate, with a marker. Those directions were a bit to complicated for her but working together we got the project done and she said she liked it. Mom is able to use the templates to set the table although she does sometimes question if she should be using them because she does not always remember we made them with her for her; she thinks they belong to us instead.

Our second activity was pouring sand. I always loved to do this when I was little, and now there are many more jars and things to pour colored sand into which can actually make pretty decorations in your home. We put each color of sand into a cup and used a funnel for Mom to pour the sand into the glass block display. We did find that Mom can not lift the cup high enough on her own, her arms are too weak, so we needed to help her a lot with that. While she enjoyed the project, I am not sure it is really that accessible for her.

Sand pouring. Photo by Jeff Norris

The Montessori method of simplifying and finding activities that match the skills of the person is working, it just takes a while to find out what is realistic for your loved one to do. Also, to make enough projects to have something to do multiples times a day would take a long time in a home setting and some of the activities are not reusable. I am working on a scrapbooking activity, which would be ongoing and anyone who comes over can do with Mom. I am really excited about it so as soon as I get that done I will post it.

Blessings,

Rev. Katie

Getting Worse

Photo by Jeff Norris

Over the past few weeks, Mom has been getting worse. Her short term memory is failing. Her ability to understand what we tell her is decreasing. She can’t really figure out how to put on her clothes anymore. Mom seems more sad and depressed. She is sleeping more and we have a hard time waking her up.

The other day, as we were leaving a friends house, I noticed Mom could not walk down the stairs. She just could not figure out how to move her feet. I mentioned this to Dad that night. The next day, when they were walking downstairs to going into the basement, Mom herself told Dad she had forgotten how to walk down the stairs.

Mom started a new medicine a few weeks ago, and that could be what is causing the increased dementia. She has stopped taking that medication and we will see if she gets any better. We are going through what I posted about a while ago, the Medicine Dance.

But who knows if it really is just the medicine. None of what Mom is experiencing is unlikely for people with dementia. It is part of the disease. I guess I did not expect these changes to happen so quickly though.

Dad and I were remembering that it was only four years ago when Mom was diagnosed with minimal cognitive impairment. She was still driving, traveling a bit, cooking, her posture was straight, she had a sparkle in her eye, she could follow a conversation, dress herself, and play games with the grandkids.

Now, so much has changed. Mom can no longer take care of herself, cook, or travel. Her eyes have lost their sparkle and they have a distant foggy stare. All these changes are not easy to handle. It is humbling to dress your own mother. It is a shock every time you see, with blinding clarity, another thing your loved one is loosing. When you stand with them and realize they can not figure out how to pick up their foot to walk forward.

There are many horrible diseases out there in the world. Personally, watching Mom’s combination of dementia and Parkinson’s, which is probably Lewy Body Dementia, I think this disease is fairly scary and traumatizing. It is like your whole life with someone just ends. Everything we have goes away. All the memories, all the fun, even all the hard times; just gone. And it is not only the loss of mind. Along with losing her memories, Mom is losing her ability to walk, dress herself, read, and even hold a fork.

I know there are still many things we can do together and many ways in which our life is wonderful. Sometimes though, the changes get overwhelming and a bit scary. In those times, it helps to talk about it with other people. We need to name what is scary, name the reality of a situation. It seems far less scary when you say it out loud. Naming it helps us deal with it better. In the end, there is no cure, and all we can do is deal with the situation the way it is.

Blessings,

Rev. Katie

A Bit More Clarity

Mom and Dad went to see her doctor today. We are continually struggling with the fact that there is no one, clear diagnosis for Mom. It is important to understand that there is no definitive pathological test to diagnose Alzheimer’s Disease, Parkinson’s disease or most of the other things that cause dementia. The only way to know for sure what someone has it by looking at the brian postmortem.

Dementia is a very broad category but it looks like Mom falls most into the category of having Lewy Body Dementia (LBD). The Lewy Body Dementia Association says, “LBD is an umbrella term for two related diagnoses. LBD refers to both Parkinson’s disease dementia and dementia with Lewy bodies.” You can see that this is a hard thing to figure out because Lewy Body Dementia symptoms are very much like the symptoms of Alzheimer’s and Parkinson’s.

In the end, what does this realization mean for Mom’s treatment? Not much. It will not change how Mom is treated because there are no different medications for Lewy Body dementia that we can add. The only way it helps is that it gives us greater understanding. For instance, we now know that Mom’s extreme fatigue is not caused by medication or anything we can fix, it is just part of the dementia. It explains why Mom’s cognitive functioning varies day to day and even hour to hour.

We are glad that this helps us understand the fatigue because by far the fatigue has been hardest to deal with. If we got rid of it, we could improve Mom’s quality of life substantially. We have gone bath and fourth trying to change medications and do a number of things to decrease the fatigue. Now we know that this fatigue Mom has been dealing with for seven years, even before the other symptoms started, is part of the dementia. Now we just really need to focus on how to live with it, rather than fight it. 

As anyone dealing with dementia knows though, the disease affects everyone differently and you can never really predict tomorrow, but at least this information might help.

Blessings,

Rev. Katie