Wednesday, May 14, 2014

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

Sunday, March 23, 2014

Movie Review: Alive Inside

Today at the Cleveland International Film Festival, I saw Alive Inside, a documentary about the Music and Memory project. The movie follows three years of Dan Cohen working tirelessly to bring iPods to dementia patients living in nursing homes.

Social worker Dan Cohen noticed that if he gave a person with dementia access to music, in specific music that they like from their past, they come alive. People who only sat slumped over in their chair and never talked, sang with the music, danced in their chair and were even able to recount memories from their past that the music reminded them of.

Alive Inside Kickstarter Campaign
Cohen wanted to get an iPod to ever person with dementia living in a nursing home and thought that with the amazing transformations of these people and how the music drastically improved their life, that this would be an easy task. However, he had the same problem as we have found in the work we do, non-pharmacological interventions are not supported by the medical community.

It was not until a clip from the movie was shared on Redit which went viral did Cohen get the national exposure he needed and he finally received a grant to bring personalized music to nursing home residents. His program has been expanding and at the end of the movie, Cohen has a few stories of people who live at home with dementia and benefit from the iPod program.

I have been following Cohen's amazing work because our foundation, the Carolyn L. Farrell Foundation for Brain Health, would like to get iPods with personalized playlists to all of our clients living at home with dementia and mental illness. We hope one day to receive the Music and Memory training when it is able to be provided to organizations who work with people in their homes.

Watching in the movie how residents with dementia responded to the music was amazing. You really can not get an understanding of how important the personalized music is unless you see it. Below is a clip from the movie, a clip which I have been showing at most events where I speak to people about dementia and how the arts are used in treatment and work better even than medication. In fact, in Alive Inside, a doctor who works with Aricept (most commonly used drug for Alzheimer's Disease) said that he has seen no medication work as well as the music does in helping people with dementia.



I also feel that this movie is one of the most compassionate understandings of good dementia care that I have ever seen. Alive Inside challenges the current ways in which we currently care for our elderly. We care for them with a hospital model, overly medicated, with all of their choice, dignity, joy, personality, and soul taken away from them. The movie shows how we have access to simple things, such as music, which can dramatically improve quality of life, and yet the medical model makes it nearly impossible for those of us using the arts to care for people to even get our programs and resources to them.

This movie explains why I do the work that I do both with people with dementia and mental illness. In the movie is the extremely powerful story of Denise who has bipolar schizophrenia and how the music not only calms her but brings meaning and purpose to her life. I often help people with mental illness create their own playlists to manage their illness. I use music in my treatment program for my own bipolar disorder.

Alive Inside also talks about the tipping point we are reaching in America around dementia. The amount of people with dementia is rapidly growing and we do not have the resources in America to pay for care, especially not care in an institution. Programs like Music and Memory, and the art programs we provide, can help people live well with dementia in their home and greatly decrease the cost of dementia care for our nation. It is imperative that we learn how to properly care for people with dementia if we are to ever have a chance of taking care of our seniors ethically.

When I see a person with dementia, who is agitated and non-responsive become talkative, happy, and engaged when we work on an art activity together, I know we need to get these resources to every person with dementia. When I help a person in the middle of mania calm themselves through a carefully chosen playlist of songs, I know we have to find a way to make sure everyone has access to the healing power of music. We have so many ways to help people living with dementia and other illnesses of the brain yet it is so hard to get these resources to those in need.

To see someone get in touch with their inner selves, find their soul, and be called back to who they are from the depths of their illness is one of the most amazing experiences.

I encourage everyone to watch this movie if it is showing in your area. Learn how music can drastically improve dementia care. Challenge the assumptions that people with dementia are lost and do not deserve dignity and respect. When we start to understand how important these arts based forms of care are, then we can work together to make sure ever person living with dementia has access to them.

Blessings,

Rev. Katie

Wednesday, March 12, 2014

Dementia Care Partners

Usually when we talk about caring for another person, we use the term “caregiver.” However, the term many of us in the caring community like to use now is “care partner.” I love this term because it means that both the person who is being cared for and the person doing the caring are partners in the caring relationship. This means both of them gain from being in the relationship.

In their new book, I Care: A Handbook for Care Partners of People With Dementia, Jennifer Brush and Kerry Mills define a care partner in this way:

"When someone takes care of someone else, we call him or her a caregiver. This is a natural title and one we all understand, however, when we use this title to identify a person who provides care to a person with dementia, we are missing an important part of the equation. You see, there is nothing left in this title for the person with dementia to contribute. By referring to these people as a “care partner,” we are recognizing their contribution as a partner. With who are they partners? These care providers are important partners for the person who has dementia. This means that they are not only giving, but also receiving; the same as the person with dementia. This is the first step to changing your perspective. This also means, you, the care partner, need to prepare yourself to receive as well." (Brush, J. & Mills, K. (2014). I Care. Balboa Press.)

As my Dad, Dr. Charles Farrell says, which is shared in Brush and Mill’s book, I Care:

“In the past two years we have moved into the magical, mystical, intimate, Silent World of Dementia. This is truly a wonderful place. Our home has become quiet. At night it is essentially silent. I sleep in a small bed next to Carol and frequently we awaken at the same time. I care for her physical needs in silence. We then move close together, I place my arm around her shoulder and my head on her chest and feel totally relaxed. I feel her breath as I count her respirations and feel her heartbeat. If Carol is anxious and fearful our vital bodily functions are out of synch. As we simply lie together, we become closer and closer together and finally truly become one. We are as much in love today as we have ever been in the last 50+ years.

Dementia has not robbed Carol of her personality and it has not robbed us of each other. We have simply become Partners.”

Below is a fantastic video of care partners, with Bill sharing the story of his wife Glad who has Alzheimer's. Their story sounds so much like my Mom and Dad's. Dad even used to bike with Mom on a tandem stationary bike to help with the Parkinson's symptoms of Mom's Lewy Body Dementia. Dad would love this bike in this video and I wish we could find one.

Get out a tissue, this video will make you cry:


Blessings,

Rev. Katie

Thursday, December 26, 2013

Shutting Down for the Holidays

During the holidays we try to make sure our loved one with dementia is included in the festivities and we carry on traditions we know are important to them. We have big parties, help them open gifts, and make foods that they love. However, sometimes it seems like our loved one is not responding or even is "not there anymore." This can be hard for us to handle because we really want to create something that our loved one enjoys and we want them to know they are still part of the family.

What has become clear to me though through being with Mom is that while socialization helps people with dementia, too many people can be difficult for them to handle. When I am alone with Mom or there are just a few of us with her, she often keeps her eyes open and talks a bit. Whenever we are in a big group though, Mom has been what seems to be mostly non-responsive. She sits with her eyes closed and does not talk. It seems like she is "not there anymore" and it can be very sad to watch. However, if I pay close attention, I notice that she has really just shut everything down and she listens, but it is too much for her to repond and be engaged. I can understand that. It takes a lot to interact with a large group of people, especially when your brain gets easily overloaded by too much sensory stimulation. I know Mom is still here even when she looks like she is not because if it gets too loud, she will all of the sudden open her eyes and say very clearly "be quiet." Then at dinner, she may not open her eyes or talk, but if you tell her you have food for her and you are going to give her a piece of a cookie, she opens her mouth and eats.

Katie & Mom at our cookie decorating party. Mom was not responsive because we had a lot of people at the house.

For most of the people with dementia I have worked with, not just with Mom, I have found that sometimes life is just too much for them to handle in the moment and they retreat into themselves in order to get through the situation they are in. They are listening and they can feel the love and emotion that is in the room. They are still here, but they just can not be present with us in the way that we wish they could be.

Keeping big family gatherings is fine, but we might also want to make sure to take a few minutes in the next month for some one-on-one time with our loved one so we can create a space that is more quiet and enables them to be more responsive. We especially need to consider out-of-town family members and make some space for them, not during a large family event, to have alone time with their loved one with dementia.

Blessings,

Rev. Katie

Tuesday, July 23, 2013

Book Review: "Why Did Grandma Put Her Underwear in the Refrigerator?"

"Why Did Grandma Put Her Underwear in the Refrigerator?" is a short story which explains Alzheimer's disease to children. It is written by 17 year old Max Wallack who, at a young age, lived with and was a caregiver for his great grandmother.

Here is my quick review of this book:

This may be the best book I have read about Alzheimer's and advanced dementia care. It is simple and should be read by every person, adult or child, who knows someone with Alzheimer's disease/dementia. Which means, everyone in the world should have a copy of this book. 

Why is this books so wonderful?
There are many reasons why this book is so great, but as a mother of a child who lived with his grandmother with dementia, I feel that there is no other book like this out there for kids like my son Jeffrey. While other children's books about Alzheimer's have been good at helping explain dementia to Jeffrey, most of those books talk about kids who do not actually live with their grandparent with dementia. Rather they talk about how to visit with their grandparent who usually lives in a nursing home. This book is the first good resource I have found for kids who live with a loved one with dementia and really captures what life is like for them. Being a caregiver as a child is difficult. They have to figure out how to be a child in an environment that is not always kid friendly. It can also be scary and sad for them to watch thier grandaprent change and get sicker. It is hard for them to figure out how to communicate with their loved one as the dementia progresses. This book talked honestly and compassionatly about these issues which can help kids understand living in a situation that most of their friends will not be experiencing. My son Jeffrey's review of the book (below) will help explain how a child relates to the book.


Max Wallack with his book. (Copyright Max Wallack)
The other great thing about this book is that it is quite advanced in it's understanding of good Alzheimer's care. Even many of the books written by doctors in the profession do not talk about how to effectively communicate with and care for people with dementia.

For instance, the grandmother in the story gets frightened by a kitten, and the child, Julie, rather than "reorienting" her by telling her grandmother that the cat is a kitten and not to be afraid of it, Julie instead tries to make her grandmother feel better by telling her about her day at school. In the old, yet still often taught, way of Alzheimer's care, caregivers are taught "reality orientation" where you would correct the person and tell them that the kitten really is not scary. Such as saying "Remember, that is our kitten Molly who you have known for years. She is not scary. Let me put her in your lap so you can pet her." This kind of care increases agitation and can result in destructive behavior. Can you imagine, if you thought that kitten was a scary lion and someone plopped it into your lap? The poor kitten might go flying across the room! Instead, as the book shows, entering into the world of the person with dementia and knowing that they see things differently than we do allows us to effectively help them deal with their situation. 

There is another great part in the book where Julie helps her grandmother eat by putting her food on a red plate. Again, this is advanced dementia care. People with Alzheimer's often need high contrast in order to see things well. Sometimes they can not see chicken or mashed potatoes on a white plate and so they do not eat, start to loose weight and can become malnourished. Changing the color of the plate increases their ability to eat. The same contrast can be used in many other situations such as the common problem of incontinence. Often people can not see a white toilet that is on a white wall so if you paint the wall behind the toilet dark blue, they can find the toilet and incontinence decreases. 

In the book, Julie also uses art as an activity with her grandmother. Julie says, "Grandma never forgets how to make great drawings." This is the essence of the work we do with the Carolyn L. Farrell Foundation for Brain Health. We use art as a form of care. Humans seem to never forget how to be creative and use their imagination. If we can tap into that ability then we can create meaningful activities for people with dementia which increase their joy and decrease agitation and depression. 

Jeffrey's Review: A Child's Perspective
Jeffrey is nine years old and for two and a half years he lived in the same home with his grandmother with dementia. Now he lives just a few miles away and visits her often. This is what he has to say about "Why Did Grandma Put Her Underwear in the Refrigerator?":

"A lot of the book sounds like when we lived with Beep (that is what we call his grandmother). There was the part where the girl dresses up for Halloween but it scares her grandmother so she has to take off her costume and can't go trick-or-treating. Sometimes there are things I couldn't do when we lived with Beep because it upset her or was too confusing for her. That would make me mad but I also knew she was sick. I wanted to be able to do what other kids could do at home. The girl in the book also had fun with her grandma though, and I had fun with Beep, like our Edamame War. I understood the book and it sounded a lot like our life, except Beep is a lot sicker now." 

Both Jeffrey and I recommend this book and I already bought five copies so we can give them to others who need it.

About the Authors:
Max & Great Grams. Copyright M. Wallack
At 17 years old, Max Wallack is no stranger to Alzheimer's disease. At the age of ten, he was already a seasoned caregiver to his great grandmother, Gertrude, who lived at home with Max and his family. Mr. Wallack is a student at Boston University and a Research Intern in the Molecular Psychiatry and Aging Laboratory in the Department of Pharmacology and Experimental Therapeutics at Boston University School of Medicine.  Max is the founder of  PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.

Carolyn Given is an experienced caregiver herself and an accalimed middle and high school educator with particular interest in intergenerational programming. Prior to her teaching career, she served as her town's Council on Aging Director and later became cover-story writer and editor of The Senior Advocate (now called the Fifty Plus Advocate Newspaper), a Massachusetts-based mature market publication. Most recently she was the recipient of an award from the Soul-Making Keats Literary Competition sopnsored by the National League of American Pen Women. 
Max and Carolyn. Copyright M. Wallack

Tuesday, July 9, 2013

Do You Know?: 5 Things I Learned From Going Off Hospice

About a year ago, Mom went on hospice care and I wrote about the assumptions people make when you say someone is in hospice. At that time, I knew Mom had time left with us, but I did not really think we had another year together. I am glad we have had so much time and it looks like we will continue to. However, this means that she has been taken off of hospice and I wanted to share with you 5 things I have learned from this experience.

Technically to qualify for hospice, the doctors have to evaluate you and believe that you have six months or less to live. You are reevaluated every three months in order to get "recertified" to remain on hospice. However, to put it bluntly, if you are not dying fast enough, you get taken off hospice. This means that even though your loved one is dying from their illness and you can not care for them alone, you now loose a lot of the help that allowed you to care for your loved one 24 hours a day.
  1. Do you know all the things you loose from going off of hospice? You no longer have aids to give baths, a nurse on-call when emergencies arise, a nurse who checks for changes in the patient regularly. You loose all the supplies like the diapers, bed pads, wheelchair, mouth swabs, pillows, wipes, ointment, and more. This makes a big difference for two reasons, one is that some of these items are hard to find in the regular world, and second the cost for these items is outrageous and not covered by Medicare anymore once you go off of hospice.

  2. Do you know how hard it is to find real adult diapers? Not Depends or something like that. Adult diapers that actually hold full amounts of liquid and solids, that open up like a diaper, and are made of materials that do not induce chafing and bed sores. It is really hard. Even the medical supply stores do not have the hospital grade undergarments needed for bed-bound people. It took weeks to find these for Mom.   

  3. Do you know that equipment that was being paid for by Medicare through hospice does not stay with you when you go out of hospice, such as the Broda chair Mom had? This means in a few days time we had no chair for Mom to transfer to that was safe for her. A regular wheelchair is not appropriate for someone like Mom. The Broda chair Mom had was being paid for through hospice, it was now used, but we could not just buy that one for a discount or anything, we would have to buy a new Broda chair for $5,000. Dad found a used, slightly adjustable wheelchair for Mom like this one but we quickly found out that you can't just put anyone into any wheelchair, it needs to fit them properly. Skin breakdown and bed sores are very common for patients like Mom but leading up to this time she had only one little spot that looked irritated which we quickly fixed. As soon as we had to start putting Mom in wheelchairs that were not the right fit for her, she started getting skin breakdown. It took over a month of research and calling around to find out how we could actually get Mom a proper wheelchair through insurance because they are too expensive out of pocket. 

  4. Do you know that most home health agencies do not employ caregivers who are able to help with things like bathing a patient or caregivers who know how to use equipment like a Hoyer lift or who have training in medical care at all? Hospice comes in and does this but once hospice leaves it is very hard to find enough replacement caregivers who can do more of the personal and medical care. 

  5. Do you know that no matter who good your care coordination team is that the medical system is so convoluted it can be nearly impossible to figure out how to navigate the system to actually get what your loved one needs? My Dad is a doctor, we have friends in the medical field, we have Mom's doctors, we know many people who work in assisted living facilities and nursing homes, we even have Care Coordinators, and still it has been extremely difficult to get Mom what she needs. Hospice knows how to get through the hospice billing system to get supplies but once you are out of that, the same rules no longer apply and they can't advise you on how to get what you need. Nursing homes and living facilities get their supplies through other systems and can't advise on how to get help for someone living at home. None of the systems overlap and so even the best people have a hard time figuring out how to help.
Basically, the whole system is frustrating and it is very easy to get angry. Not only with the system but sometimes with the people helping you because you expect someone to know how to navigate the system. In reality though, our medical care system is so confusing that few people know how to work with it in any given special situation. So, be patient and compassionate with each other as you work to care for your loved one.

What has been your experience with going from being in hospice to out?

Blessings,

Rev. Katie

Sunday, May 12, 2013

Happy Mother's Day?

I went to the mall yesterday, which in hind site I realize was a bad idea on the day before Mother's Day. The mall was packed with shoppers, full of sales associates shoving perfume samples at me, big pink signs with roses and fancy script saying "Happy Mother's Day," and tons of sales people. I tried to walk through the mall quickly with my head down, but if I looked at anything, unfortunately, a sales associates would catch my eye and ask: "Are you looking for something for your Mother?" When I would say "Not today" they would reply, "Well, I can help you find something for her" or "Don't forget to get her something before tomorrow."

I have never really been bothered by the holiday push. I used to work in retail and I know they only do it because it's their job and the stores focus on the holiday because it makes a lot of money. I tend to be able to ignore it even when a holiday does not feel joyous to me. But this year I had a harder time with the Mother's Day push than usual. I felt angry, sad, and like I could cry right there in Macy's.

I really felt like just looking someone straight in they eye and saying "Well, my Mom is confined to her bed, can't move her limbs, dying from dementia. She can not pick anything up to touch it, she does not need new clothes, she won't use new jewelry, her sense of smell is low and she is not really going to use the Joy perfume we would usually chip in to buy her, she rarely talks, can't read, and doesn't open her eyes very often to look at things. So, can you tell me what you might have in the store that I can buy for her?"

That would have been really rude, and I never would have done that. However, just thinking it made me realize that last year I would have been able to easily buy my Mom something from the mall. I still would have needed to accommodate for her dementia and Parkinson's but I could have found her something pretty she would have liked. Now it is just not the same. My Mom is still alive yet the ways in which I would have cared for her before, or the things I would have given her previously do not apply. She is not gone, but some things are lost. I did not know of anyone who would really understand what I was going through except my best friend who's mother had died a few years ago. She would be the only one I could ask how to get through Mother's Day, even though my Mom is still alive. My friend would understand what I meant, and she did. She powers through the day like all of us who's mothers are either sick, dead, absent, or even people who have abusive mothers. You just get through the day the best you can and make sure you have people you can call on when you are sad and grieving.
Flowers for Mom. Photo by Jeff Norris.

I am a firm believer that people with dementia are still here and they can still enjoy things. I try to remember that every day. But that does not mean we do not grieve over the things they can no longer do or miss how we would have interacted with them before they got dementia. Holidays tend to remind us of this grief when the rest of the year we try and ignore it and make the best of the situation we are in.

It would be bad ministry for me to say that you do not grieve for your loved one with dementia even when they are still alive. Sadness and grief is part of the process and I truly think it helps us heal and move on to be able to create meaningful time together, rather than getting stuck by trying to deny the illness is there.

So, I am sad about Mother's Day and for the parts of Mom that are not here anymore, but we still find ways to celebrate with her, bring joy into her life, and access the part of her that is still here- her soul.

My siblings and I will be going to dinner at Mom and Dad's tonight. Mom loves family and good food. Mom also likes beautiful things and color, and while I could get her something like a pretty picture or statue, that would make the house more cluttered, which does not help people with dementia. So, my husband, son and I made her some flowers out of watercolors and paper doilies which are made with love, pretty for her to look at, but can be thrown away after a while and do not add to clutter and confusion in the house.  Of course though, her favorite gift will be the gift of time we spend with her, which is way better than the perfume, purses, and jewelry at the mall.

Blessings,

Rev. Katie