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

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

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

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

Movie Review: Do You Know What My Name Is?

We went to see Do You Know What My Name Is? at the 2013 Cleveland International Film Festival. This movie is about the Cleveland nursing home, Eliza Jennings which is using the SAIDO Learning Memory Support Program from Dr. Kawashima who created this program in Japan. Many of the descriptions of this movie state that the SAIDO Learning Program reverses the symptoms of dementia.

You may remember that I wrote a blog post a while back about how we should not ask people with dementia, "Do you know what my name is?" because this is a memory based questions which can be highly frustrating and it is really only a question we ask out of our own need. We need our loved one to acknowledge us and we think the only way they can do that is by remembering our name, which is not true.

The Eliza Jennings staff uses the question "Do you know what my name is?" as a marker for improvement in short term memory. If the person does not know, they say "That's ok, my name is John." So, they were not pressuring the person with dementia as most people do when asking this question.

This was a great documentary following the six month study of using the SAIDO Learning Program with a small group of residents with dementia. The program is based on providing simple math and reading tasks in 30 minute sessions five days a week with a learner/leader ratio of 2 to 1.

The documentary did not go much into the science behind the program, just that it focuses on working with procedural memory. Procedural memory is the part of your memory that helps you perform tasks, but most often tasks we eventually perform without really thinking about them, such as driving.

I did not see a reversal of dementia in the movie, what I saw is what all of us who work with people with dementia see, that compassionate care, socialization, and simple yet interesting tasks that speak to a persons emotions allow people with dementia to be more engaged and function better. Dr. John Zeisel,  Dr. Cameron Camp, and Tom and Karen Brenner all use activities focused on procedural memory in their innovative dementia care programs. The programs are less about math and more about art and the latter two follow the Montessori method. The simple math and matching that the SAIDO system uses is not all that different than the simple color and shape matching and art of the Montessori and Zeisel methods.

It is important to notice that none of the facilitators corrected the learners. If they got a math question wrong of spelled their name wrong, they always said "That's great!" This is essential in dementia care. People learn not through being reprimanded and being told they are wrong, but by being encouraged and allowed to work within their limits. They did not need to be told they had not gotten everything right to know six months later that they could perform the tasks better. In six months the learners improved, but not because anyone corrected them when they got something wrong. 

One thing that was not stated in the movie as being important, but which I saw as really the key to the success of the program was the socialization. Each day the learners were engaged with a facilitator and one other learner in special time together. One resident, Mae, was not engaged at all in the beginning of the trial but later started talking more and recalling childhood memories. The key to that seemed to be her learning partner, Esperanza who really brought Mae out of her shell.

Then there was Evelyn who often sat by herself in the begining of the trial and did not engage in group activities. She received personal socialization every day through this learning program and became more talkative. By the end of the six months she was able to recognize her family better, talk more, and knit again.

Even Dr. Kawashima who created the SAIDO Learning Program commented in the movie that he thought the communication at Eliza Jennings was better than what the dementia patients in Japan going through the SAIDO learning program were receiving.

One stand out component of the movie, for me, was Eliza Jennings' staff member John Rodeman who narrated the movie and eventually was one of the facilitators of the learning sessions with the residents. He was the one who in the beginning of the movie was asking residents if they knew his name and by the end, a few of them did. John has a skill rarely seen in those caring for people with dementia. He believed in them and showed them dignity and respect. He saw the person, not their illness. John engaged in casual open ended conversation with the resident and really was an important part in socialization and reaching their emotions to help them feel loved and show them dignity and respect. He was kind and if they did not know his same, he said "Ok, let me tell you." You have to see the movie to see the way he interacts with residents. John instinctively knows how to communicate with people with dementia. I wish I had that innate ability. I learned a lot by watching John's example.

Matt & Karen Cahill, Dale & Chris Windsburg (all four are children of resident Evelyn), and John & Adrienne Rodeman at the Cleveland International Film Festival

For me, this movie showed how the right style of learning, whether it is math based or art based, music based, compassion, and socialization are key to good dementia care. This method takes a lot of people. Eliza Jennings worked with all of the staff members- nurses, maintenance, kitchen staff, and volunteers to make this program work. In fact, John used to work in maintenance and did so well with residents that he became an integral part of the SAIDO project. Clearly the facility put their full effort into this program and all the residents in the initial trial are still doing the program and they have added new residents to the program.

This was an inspiring movie to me, but maybe not in the way other people might think it is inspiring. I did not really see a reversal of dementia, rather I saw a program that understands the brain and knows how to create an environment which allows people with dementia to function to the best of their ability. This means that even three years later, when a persons dementia inevitably progresses, the SAIDO program would still help the person function as well as they can, better than if they had not had this intervention. This program does what our Carolyn L. Farrell Foundation for Brain Health and others advocate for: focusing on what ability a person still has and maximizing that to help them have a happy life. Far too often it seems that people with dementia fade away quickly due to the illness, but really it is due to not knowing the proper care to engage them.

Blessings,

Rev. Katie

Book Review: You Say Goodbye and We Say Hello: The Montessori Method for Positive Dementia Care

I just finished Tom and Karen Brenner's book, You Say Goodbye and We Say Hello: The Montessori Method for Positive Dementia Care. You may know that I went to a Montessori school for Pre-K-8th grade, my son attends a Montessori school, I have taken classes with Dr. Cameron Camp who has created Montessori Based Dementia Care activities which he has been using for over 15 years, I have training in the Montessori based religions education program Spirit Play, and we use the Montessori method in the art care activities we use with people in the CLF Foundation programs. Basically, I love Montessori and the principles are part of my everyday life. So, I was very excited to see another book about caring for people with dementia with Montessori methods.

I have never had the pleasure of meeting Tom and Karen Brenner, but I know that Tom has a MA in Gerontology and Karen is a teacher who has opened Montessori schools in Chicago. They have been using the Montessori method for many years with people with dementia and you can see in the book how they have found this method helps bring meaning and purpose into people's lives. Here is a short summary of what I thought of the book.

Copyright: Jeff Norris

What I Liked:

• Some people may take writing style for granted, but I appreciate that this book is written in a more conversational and understandable style rather than being full of jargon which is not accessible to people who are not in the medical field. This means the book can be used by family members as well as professional caregiver. 
• The Brenners understand the intense emotions that go along with dementia. They are compassionate in talking about our assumptions of people with dementia and how us family members struggle with judgement, guilt, frustration, sadness, and fear. For instance, they talk about how lonely and heartbreaking it can be to have to introduce ourselves to our own mother. Basically, I felt cared for by this book, like someone understood the emotional struggle and yet did not judge people for their feelings but gave you new insights and ways to cope with them.
• The book addresses deep spiritual questions of dementia such as: "...can a person still be who they are  and not remember who they were? ...Is remembering all we are? Is a person lost to us because they don't remember their wedding day, or the job they held for thirty years?" (p. 24-25.) Throughout their book they answer these questions, basically by saying our loved one is still here (just as Dr. John Zeisel talks about as well.) We need to work with their abilities and help engage their inner selves, which is never lost, just much harder to find through the fog of dementia.
• There are examples of Montessori activities in the book but what is even better is they really talk about how to find activities which are meaningful to the person. The same activity will not reach every person the same and sometimes an activity you assume someone will not enjoy, they absolutely love. It is all about getting to know the person as best you can and also trying new things with them to see what will reach them.
• They answer well the common question: "Montessori is for kids, why would we use it with adults? Isn't that demeaning?" No matter our age, we are all curious, we all want to be seen for who we are, and we all want to be creative and accomplish things we can be proud of. The Montessori method is simply a way to help reach people on the deepest level where we all reside. They also address the issue of activities that seem "too simple" like matching wooden cylinders into holes. If you have ever touched and used Montessori materials, you know they are made with natural materials. They are beautiful and colorful, you want to use them, no matter your age. I have seen non-Montessori parents go into a Montessori classroom and be drawn to the Bead Bars, Trinomial Cubes, and Metal Insets because they are just so beautiful and thus fun to use. 
• On pages 123-124 they describe a flower arranging activity and have listed not only how to do it but the purpose of the activity such as range of motion, small motor activity, creativity, and cognitive stimulation. It is a great example to show people how "simple" activities are not really so simple. They really provide a myriad of benefits.

What I Would Have Liked More Of:

• Basically, there is just one thing I would have liked more of, and this is really more of a personal preference. I would have liked more information about the Montessori method and why it works. There is so much about the method that reaches people with dementia and I feel like if you have a knowledge of Montessori you will see how they use the method in more ways than just finding meaningful activity and correct ways to prepare the materials. If you are not a Montessori person, you could use some more insight into why Montessori works and all the intricacies of it like the use of color, texture, how to put things away so they are useable, etc... I think the Brenner's communicate well and make things understandable so could have provided even more information about Montessori methods and principles in a way that people actually understand it and see the meaning behind it. (Then again, this would have made the book longer and it is a fast and easy read so you can implement techniques right away.)
• What I have not seen in really any of the books on dementia are these activities and this care being provided in a home setting. Yes, all the books, including this one, say "you can do this with someone at home" but there are few stories about such care. I will write a post about this, but there are specific things about a home setting that make these activities hard to do, and part of that is often the person with dementia will do activities for an outside caregiver or friend but rarely for the family members who care for them on a daily basis. The socialization and environment is completely different at home versus an institution and unless you work with people at home on a long term basis and see the dynamic with the family members, you can not make the claim that these activities will work just as easily at home as in an institution. 

Blessings,

Rev. Katie

"Do You Know Who I Am?": Tapping into Creativity Instead of Memory

I have noticed that as Mom's dementia has progressed and she can communicate less, people tend to ask her "Do you know who I am?" or "What is my name?" I completely understand why they are asking this. We have this need to know that our loved one still knows us. We wait in anticipation for our name as if that means our loved one can recognize us and we still have a relationship with them. We ask this question out of our need. Out of our fear that we will be forgotten and that our loved one has changed forever. As if their memory of us proves that we are still here. I have asked this before too, however I now have come to realize it is a terrible question to ask.

I see in Mom's eyes that she wants to be able to say the person's name and she can't. She gets agitated and upset when she can't respond to you. It is painful for her that her brain does not work the way she wants. Asking her "What is my name?" is extremely degrading and upsetting. We don't mean for it to be that way, but it is because we are making it abundantly clear to them that something is wrong with them rather than celebrating what is still wonderful about them.

In the work that we do with the Carolyn L. Farrell Foundation for Brain Health, we focus our programs for people with dementia on creativity and imagination rather than memory. This is because it is SO frustrating and devastating for people with mid to late-stage dementia when people ask them to use their memory. It is a reminder to them of all they have lost and it makes them think they can not contribute to the world because they do not have the precious knowledge we are asking them to produce.

Too often I see in nursing homes and adult day cares activities based on memory. A caregiver stands at the front of the room and asks questions about "the old days," as if this will comfort people. "Who was a famous baseball player in the 1930's?" the caregiver calls out. Most people sit and stare at the wall or fall asleep. "What were your favorite kind of shoes to wear when you were a kid?" Silence, and some people's brows furrow and they get anxious. Does no one realize that they are asking these people things they can not remember? It is like asking a two year old "What is sixteen divided by seven?" This is not something most of them can do and it is aggravating for them and honestly makes them feel bad about themselves. 

However, you can do things like tell stories about "the old days" and then usually people talk about the story. You can show pictures of events, like Christmas and all of the sudden someone will say "I used to love Christmas. We ate cookies." They feel happy and know they can contribute to the world.  They are not being tested or judged on the basis of what they remember.

Mom has not called me by my name in at least six months. She does call me "honey" when she sees me. She still remembers my son's name sometimes or asks me "Where is the little one?" Just because the exact name does not come out or just because someone does not recall any baseball players from the 1930's, that does not mean we have lost our loved one. Even when they can not speak and seem to stare off at the wall all day, certain things will still bring light to their eyes. Play some of their favorite music, tell favorite family stories. If they can still use their hands, create art with them.

Tapping into creativity and imagination reaches deep into their soul, touches their spirit, and does not ask of them to use the memory they have lost. It does not remind them of their illness but celebrates their abilities.

Blessings,

Rev. Katie

Mom's German Chocolate Cake

The cake most of us in the family requested from Mom for our birthdays was a German Chocolate Cake. Mom has made that cake for all her kids, many grand kids, and on family occasions. She has taken it as a carry-on to bring to one of her children living out of state. I think we have even shipped it out of state. My Dad's birthday is this month so it was only fitting that we made him Mom's German Chocolate Cake. You can't use a boxed mix for this and the recipe has a cooked egg frosting. Many of the techniques of making this cake are not things most of us do anymore because there are so many boxed items or mixes that we use instead. However, I like making this cake because I know the tricks to making it having helped Mom with the cake so many times before. Like how the frosting really takes about 45 minutes to make rather than the 12 minutes the recipe says, and if you cook it on medium as the recipe says, you will get scrambled eggs. Or making sure to line the bottom of the pans with waxed paper because this cake really will stick to the pan even if you grease it, and it falls apart easily. All little things that Mom taught me from the many times we made this cake together over the years.

Click to read Mom's note. Photo by Jeff Norris

Every time I make one of Mom's signature recipes, I am proud and sad. It always reminds me of the end of an era, expect that it is not quite the end because Mom is still here. When I went to get the recipe out of my recipe box, it was hard for me. Almost all of the recipes in the box are handwritten by Mom, given to me at my wedding shower 13 years ago. Mom has not been able to write for a long time now and I have not seen the smooth, beautiful curves of her cursive in years. When I read her letter to me on the inside of the box and the instructions for the recipes, I realize that I have not heard her say a full sentence in at least eight months. She has not been able to make any recipes for over a year. It is hard for me to know what she used to be like, and I feel like that is not my mother anymore. Not that she is not longer Mom, but that I barely remember what she used to be like. Which is strange, because she only started her journey with really visible dementia about six years ago. I feel bad that I do not really remember her as she was before.

As I saw my beautiful niece feed Mom small bites of the cake, I thought of how my son and my younger nieces and nephew may not really remember Mom as she was before. In fact, some of them have never tasted Mom's famous cake made by her hands. While they love her and like helping care for her, I still feel sad that they did not also get to experience her as cooking up a storm, knitting, laughing, and helping take care of them when they were sick.

I loved making the cake for Dad because I could make sure a bit of Mom as she was before was still there even while we enjoy having Mom there as she is now. It was kind of a way to bridge the two times in her life together for both Mom and Dad.

Me and Dad with Mom's cake

It is a hard transition, loosing someone in this way and seeing at special times in our lives how one day they may not be there at all. It is all the little things, like a cake, that make you realize how things have changed and how different they will be in the future. It is a weird combination of sadness from what you have lost, but also happiness to still have them in your life, and joy that you can carry on some of the things that are special to them which they can no longer do.

Blessings,

Rev. Katie

The Dreaded UTI

Urinary Tract Infections (UTI's) are common in older people, regardless of gender, especially when they become incontinent and rely on the use of an adult diaper. However, many people with dementia or other illnesses are also to the point that they can not tell you if they have pain anywhere, and so you have no idea that an infection is present. In fact, you can have a UTI without pain. But when an elderly person has a sudden change in cognitive function and actions, always check for a UTI.

Mom had a good Christmas Eve but then on Christmas Day she would not eat, not open her eyes, and she had labored breathing. We could not really get her to respond to us anymore and she also lost her limited amount of speech. After a few days, the hospice nurse had Mom checked for a UTI, which came back positive, and we put her on antibiotics. It has taken many days but Mom has regained some of her self back in the last day. When we visited yesterday her eyes were open, she would say a few words to us, and even laugh at what we were talking about. Her appetite has not really changed much, but at least she was much more bright and cheerful.

When you work in a nursing home or in hospice, you are told to always check for a UTI when sudden changes occur but for those of us taking care of loved ones in our own at home, no one may have told us that. I would insist on checking for a UTI at any time there is a big change. It does not hurt to check and if you are right then you have treatment options. I will caution that if your loved one takes the course of antibiotics appropriate for their UTI (which means do not only have the initial stick test done, ask to have a culture sent out), and they do not get better, do not insist that they still have a UTI. Sometimes people will see marked improvement in their loved one after a UTI and then the next time they have one and do not get symptomatically better, the family wants more antibiotics even when tests show the infection in clear. As long as the UTI tests are coming back negative, they do not need antibiotics and they may truly just be progressing in their disease. I know this can be hard to accept, but repeated courses of antibiotics are not safe for long periods of time and you could cause even more problems in the long run. Also, denying that the disease has progressed does not give you, your loved one, and the rest of your family and friends the ability to grieve the change and mentally prepare for what is going on.

Blessings,

Rev. Katie

Dementia Safety Issue: Home Alone

There are many safety issues for people with Alzheimer's/dementia such as driving and falls, but by far one of the biggest safety issues is leaving someone with dementia home alone. For some reason most caregivers can understand the need to take away the car keys, put up grab bars and bed rails to prevent falls, but we have a hard time accepting the fact that it is not safe to leave someone with dementia home alone. I think this is due to a few factors, one is that not enough people have the ability to stay home with their loved one or the money to hire caregivers, the other is that our loved one is an adult and we assume they should be able to stay home alone.

Clearly, we need two things, first more resources for people to be able to hire caregivers or find ways to create a community volunteer system of companions for people with dementia. Second we need to accept the fact that even though our loved one is an adult, their mind is reverting back to a child. This does not mean we respect and love them any less, we are just understanding the change in their abilities and we will work to keep them safe.

As soon as you notice your loved one forgetting what they were doing in the house, leaving the stove on, wandering out during the day or night, falling, or being confused in their own house, it is not safe to leave them home alone, even if they are sleeping. This would most likely start in later mid-stage dementia. As dementia progresses, people revert back to a more child-like mind and ability. You will even notice that they may not recognize themselves in the mirror because they only recognize their face from when they were in their 20's. Cognition and memory regress. We do not leave our kids home alone at 3, 5, 8 years old, even if they are asleep. It is not safe. We may not like to admit it, but the same is true for people with dementia who's minds are going back to being similar to that child of 3, 5, or 8.

Leaving someone home alone is not safe because anything can happen. No matter how well we think we know their ability or how safe we think we set up the house, we all know accidents happen. Even someone who is bedridden can get sick while you are gone, decide to try and get out of bed even though they can't and fall, or they could become afraid and panic thrashing and hurting themselves on bed rails. Dementia is unpredictable and while yesterday it may seem like your loved on is fairly safe and won't get too confused, today may be the day they leave the stove on with clothes on top of it, or get hungry and try to cut vegetables with a sharp knife and forget how to use it and cut themselves. Or what if you get in a car accident or get a flat tire and while you thought you were leaving them for an hour, you are now gone for 12 and no one knows your loved one is at home alone? I know all of this sounds scary and you might think "this won't happen to my loved one,"but it does. I was shocked the first time Mom left the stove on because she had not even cooked in months. Or when Mom would get suddenly scared not knowing where the dog is and walk out into the back yard to look for him.

While I wish caregivers were not so expensive to hire, they are, and many people can not afford to hire 24 hour watch for their loved one. However, I have come to realize that if we just ask for the help we need, often we have friends or family members who will help out. I know quite a few people that go over a few hours a week to sit with someone with dementia so that their family member can go to the store. If you find a few people like that then you can have a rotation of people coming in for the week to help out. Or there are even neighbors who will check in on your loved one hourly which is better than just leaving them alone completely all day if you have to work.

Don't be afraid to ask for the help you need, the worst someone can say is that they are unavailable. And if you know someone with dementia and you want to provide help, offer to come over and sit with them. Often families don't ask for such help because we assume it is too much to ask, too much of an imposition, and no one will want to do it. If you offer, you might just be giving that family a wonderful gift they were too afraid to ask for.

Blessings,

Rev. Katie

Last Christmas?

Darkest Night: West Shore Unitarian Universalist Church

Tonight at our church's Darkest Night Service (where we recognize not only the longest night of the year but also the fact that for many people have grief, sadness, and loss over the holidays), I lit a candle for Mom. I knew this Christmas would be hard for me since Mom is now in hospice and this may be her last Christmas with us, but I did not realize how much it affected me until I lit the candle and said out loud "This is for my Mom because this might be her last Christmas."

I don't know if this is technically Mom's last Christmas and now that I think about it, I feel like last year might have really been the "last" one. Last year was the last Christmas she was able to talk to her grandchildren, bake cookies, or open a gift. That was the last Christmas that she spent doing many of the things she always loved to do.

Every Christmas we would make dozens of Christmas cookies, her most famous being sugar cut outs and gingerbread. Then all of the kids and grand kids would gather together on the Saturday before Christmas to decorate the cookies. Last year she was able to help me make at least one of her Christmas cookies but tonight I made the dough for the gingerbread in my house by myself. No mother to make sure I was doing it right and to share the memory of making these cookies together that I have had for my whole life. I am taking the cookies over to Mom and Dad's tomorrow with my husband and son to decorate with Mom like we have always done, but it won't be the same. She can not move her hands and arms to help decorate or even hold a cookie. I know the important thing is really the time we spend together, not exactly what we are doing, but it is still just sad.

Decorated Christmas Cookies (We love our sugar crystals!)

It is difficult to have lost your parent but also have them physically here. You know their spirit is still here and you can see it in their eyes at times but you can't have a conversation with them, create things together, or do really anything together that you used to do.

We of course will make this the best Christmas we can for Mom and bring to her things that she loves about the season. Her grandchildren decorated her house and Christmas tree for her. We will make cookies together in the best way we can. We will eat together, let her see her grand kids open gifts, and laugh with her. But I have to admit that in all the joy I feel of her being here and being able to spend time with her, I am still sad.

Blessings,

Rev. Katie

Playful Activities Bring Joy to Dementia Patients

When my Dad and I talk about the activities we do with people with dementia every week with our foundation, the Carolyn L. Farrell Foundation for Brain Health, many people do not understand that playful activities are important to successful management of dementia.

Our activities are simple, based on Montessori methods, but some people think that this is "too childish." However, it is reality that people with dementia slowly loose cognitive abilities and have a more childlike brain. This may sound sad upon first glance, but really it means they are more free to be imaginative and have fun with playful activities like wooden blocks, stacking materials, and abstract art activities.

If someone likes an activity and it brings them joy, who are we to judge if it is "childish" or not worthwhile? 

One year old Jeffrey joyfully playing with his blocks.

My husband and I play the same videogames as our son. I love to paint, draw, and create with paper. As a family, we build things with the wooden blocks my Dad helped us make for our son for his first birthday. I think all of these activities are worthwhile because they bring us joy and bring us together as a family.

Here is a great blog post from the Alzheimer's Reading Room about the importance of play for people with dementia: How Important is Play for Alzheimer's Patients in the Late Stages? It is also a fantastic example of how caregivers can advocate for and insist on good care from nursing homes and in-home caregivers.

I encourage us all to be more imaginative, have more fun, and embrace the joy of our childhood spirit.

Blessings,

Rev. Katie

Service Dog Helping with Dementia

About four months ago we adopted a puppy who we are training to be my Psychiatirc Service Dog. While this training can take years, and our puppy Rosie is still just trying to learn how to contain her puppy energy, I find her to be an amazingly intuitive service dog. I have had many dogs over my lifetime but few have been so in tune with the emotional needs of the people around them as Rosie is, and she is just in the first few months of training.

Today we had a family party and we were able to have Mom over to our house. Rosie was in her crate for the beginning of the party and after everyone arrived, I let her out. We had about twenty people in the house and instead of saying "hello" to the people that were in the room she was in, Rosie instead went directly to see my Mom. A person she has only met twice.

Rosie was so attached to my Mom that my Aunt thought Rosie must have lived with my parents before we moved into our new house. She assumed Rosie knew Mom and missed her. Rosie was jumping up on my Mom, trying to get into the Broda chair with her. While this was not the best choice for Rosie because she was too hyper, her instincts were correct.

Rosie somehow knows to "ground" people when they are injured or hurting. This is a deep pressure therapy where the weight of the dog helps to calm the person who is anxious. Rosie's instinct is to lay herself on top of people to help make them feel safe and comforted. "Grounding" will be a Psychiatiric Service Dog task that Rosie will be able to do, gently, on command but right now she does it in her hyper puppy way becasuse she just wants to help other people.

Rosie "grounding" me.

I am continually amazed at the connection that animals have to us. I can't believe how Rosie knew, out of a houseful of twenty people who were in separate rooms, to go straight to the person who needed the most love and care. I felt so proud of Rosie today and her ability to help others. I also felt a great connection with Mom as she and I always cared for our dogs together throughout our lives. Rosie trying to take care of Mom was, for me, kind of another way that Mom and I are still connected despite the fog of dementia that keeps getting thicker and thicker. I am glad my puppy can see through the fog even better than most people can.

Blessings,

Rev. Katie

Freedom of the Mind

I was browsing around on Facebook and saw this quote from French writer and poet Antoine de Saint-Exupery: "I know but one freedom, and that is the freedom of the mind." I think this quote is from his story The Little Prince, which is a well loved classic.

This quote caught my eye and immediatly made me think of my Mom and other people with dementia. Actually it even made me think of those of us with mental illness. It is a reality for some of us that we do not have "freedom of the mind." 

Photo by cmartian on Flickr Creative Commons

We don't even know what really happens to the mind with dementia except that plaques build up in the brain and stop it from working- sometimes all of it, sometimes just part of it. One could argue that this is not freedom of the mind because you have lost the ability to use much of your mind. One could also argue that this is almost imprisonment of the mind becuase one of the things we are not sure of is if the person can think and inside, their brain functions just fine but it does not work well enough to send all the correct signals to get the infomation they want out of their brain.

This sounds like a scary idea, but I have to admit that sometimes I see this with Mom. I can see her brow furrow as she is thinking of something she wants to say or she is trying to move her legs and her brain just won't let her do it. If I look into her eyes, I still see her in there and I do wonder if she is experiencing some sort of imprisonment in her brain. I hate that this could be happening to her, and I actually know how it feels. Some of the medications I have taken for bipolar disorder disrupt cognitive functioning and I would know exactly what I wanted to say and be unable to, or I would try and control my arm and it would not do what I asked of it. It is a terrible experience.

While I think Antoine de Saint-Exupery's quote is prophetic in a way by saying that we always have that freedom, freedom of mind, and the idea is that no one can take that freedom away from you. I also think it is problematic because there are illnesses that can take that freedom away. And if this is the ultimate of all freedoms, what does that mean for those of us who do not have it? For me, I wonder if the one freedom I can think of is freedom of the spirit. I always see Mom's spirit even in the midst of dementia.

Blessings,

Katie

Dealing With "Dementia Loss"

Mom has progressed so quickly with her dementia in the past three months, and as the holidays are approaching I am thinking about how to handle the holidays with a loss. By loss I mean what I would call "dementia loss" which is not death of the body but loss of relationship with a person, loss of ability, and loss of communication. 

Last year she could make her famous Christmas cookies with me. Last year she could give advice on cooking the Thanksgiving turkey. Last year she could walk, talk, feed herself, and go to holiday events like our annual extended family trip to the West Side Market. This year is so different. We can't really chit chat about tips on making stuffing, or walk through the Market together and get the mincemeat for the pie. We will have to feed her her holiday dinner.

Making Christmas cookies with Mom last year. Christmas 2011.

Mom is still here in many ways and often I see glimpses of her personality again when she laughs at things we say or when she surprisingly comes out with great one line zingers when she looked like she was staring off into space. However, she is not here as well. While I feel blessed when she connects with us through smiles and simple words, we can no longer have conversations together. I can't ask her for advice on how to make a fantastic holiday like she always did. It is devastating to be with your own mother and never have an actual conversation. Every time I am cooking and mess something up, I go to the phone to call her, but then realize I can't. I try to embrace what we still have, but I do realize how much we have lost.

I try not to think of all of the things we have lost because that makes me too sad. I try instead to think of ways to still include Mom in what she always loved so she knows we care about her and want to help her do what she likes. 

Mom can not really move her arms and hands anymore so I can't make cookies with her this year. Instead I can make the cookies while she sits at the table and I can talk to her while I do it. She can not go to the West Side Market but at least our house is accessible enough so that she can come for a few hours of the party in her Broda chair. We can't decorate the Christmas tree together, but I can bring out the ornaments and talk to her about them as my son, husband, Dad, and I hang them on the tree.

This holiday season will be hard for us like it is for so many people who have their first holiday after a loss. You think of all the things your loved one would have done or would have participated in. You see the glaring holes that are left where your loved one used to be. The thing that is so hard about "dementia loss" is that you keep losing the person over and over again and there is not really any closure. This year is a significant loss and next year if we have lost Mom in body as well, then we have another holiday season of grief and loss on another level.

Blessings to you during the holiday season,

Rev. Katie

Caregiving: On Our Own Journey

I was helping to lead a training on activities for people with dementia the other day. Speech-language pathologist Kathryn Kilpatrick from Communication Connection was one of the presenters. She had a lot of great advice on how to communicate with someone with dementia which I will be writing about later. However, one of the comments she made really stuck with me as it addresses a problem I see all the time in families trying to care for a loved one.

Kathryn said that each caregiver is on their own journey through this process. What she meant was that we will all handle the illness of our family member differently, and that's ok. Often what happens in families, and were I see the most difficulty created for them, is family members judging what kind or how much caregiving other people in the family are doing. 

There are many paths on this journey. Photo by Jeff Norris

For example, I was with a client once who was telling me about her "ungrateful" child who had not come to visit her in about a year. I noticed that while I think Miss. Mary is the sweetest little old lady ever, I really have no idea how she treated or still does interact with her child. While I could be fully present for Miss. Mary and help her through this issue, I also knew I could not judge her child. While we may not agree with what they are doing, unless they are putting their loved one in physical or emotional harm, or creating an unsafe environment, we should let people help as they are able.

Even in families that are close, no one really knows the relationship each child had and has with their parent so you can't expect everyone to to provide care in the same way. Some people can't handle daily amounts of time with their loved one. Some are only comfortable with the person one-on-one because it may be detrimental to be with other family members. Some people just are not comfortable with doing things like bathing, taking someone to the bathroom, or changing adult diapers.

We also need to recognize on this path that people may have more or less energy for the journey at different times. Sometimes a caregiver you may need to pull back on what they are doing because it becomes too overwhealming, and that's ok. You can hire more help or rearrange the care schedule so that everyone gets a break at times. That is why in hospice, respite care is offered to the family every six weeks.

In my work as a minister, I see far too many families fighting over the caregiving, each one expecting the other to do this or that, and missing the fact that everyone is on their own journey through this. 

Blessings,

Rev. Katie

The Difference a Year Makes

I was looking through photos and noticed that I have a photo of Mom from almost exactly one year ago today. This photo of Mom and Jeff is from June 19, 2011.

Mom and Jeff June 2011

Sometimes I forget how much has changed in the last year. Mom was walking, able to talk with us, go out, and feed herself.

Today she is on hospice, barely talks, needs to be fed, stays in bed or a Broda chair, and has to be moved with a Hoyer lift because she can't walk or move on her own. You can tell from this photo that so much has changed in the last year.

Mom and Dad, July 2012

Photos like this remind me to not get too caught up in just what is happening right now but to remember that our lives are made up of all the years we have been here.  It can be easy to get bogged down in just how hard things are right now and forget all of the other great years you have had together.

Blessings,

Rev. Katie

Hospice: What's In A Name?

Last week Mom qualified for hospice. When most people think of hospice, they immediately assume that the person will be dying within the next few weeks and hospice is an emergency situation. But really hospice is a concept of care for terminally ill people in which care will be provided that will neither prolong life or hasten death. Hospice focuses on comfort care, maintaining dignity, and addresses the emotional, social, and spiritual aspects of dying. To qualify for hospice, a doctor must assess the patient and determine that they believe the person has no more than six months to live but really people can be on hospice for days or years so time frame is really not a given once someone is put on hospice. So, that is what the name hospice technically means, but we have found the name has meant so much more in how people have started treating Mom.

Mom in her new Broda chair with Morrie and Dad

It has been surprising to me and Dad that as soon as people heard the word "hospice," they have been calling and asking how they can help. Do we need food? Would Mom like visits from people?

The thing is that for at least two years we have been telling people directly: "Carol would really like you to visit with her." Yet just a handful of family and friends have visited her and in fact more people have withdrawn from her than visited her since she was diagnosed with dementia seven years ago.

There are a few things going on here that I can tell. One is, like with most diseases of the brain, people are scared of dementia. Dementia has a lot of stigma attached to it and people don't know how to communicate with their loved ones with memory loss. Due to fear and being uncomfortable, people often abandon those with dementia.

However, as soon as someone goes on hospice, things become more understandable to people. First they assume there will always be a medical professional around, so they wont be left alone with their loved one and they feel more safe. Just because someone is in hospice does not mean they have caregivers with them at all times though. Second is that people know hospice means someone is dying which interestingly makes people more comfortable than trying to deal with a chronic illness that they can't fix and seems to have no end in sight. The word "hospice" means "end" to many people. People think there are things you can do in the end, and everyone wants to be of use. They want to cook food, clean linens, do dishes, get groceries, etc...

What people don't know is that you can often help people most just by your presence, by spending time with them. In any illness, no amount of food made, sheets changed, or dishes cleaned matter in the end. The deep feeling of abandonment when people pull away and don't visit breaks someone's spirit in a way that is indescribable and at the end of their days, that feeling of long-term abandonment is what they will remember, even people with dementia.

In my experience with Mom and in my work ministering to many people at the end of their life, I have seen the most pain happen not because of illness or the question of "Why is this happening to me?" but rather the question "Why did everyone leave me?" This is the spiritual question at the center of their suffering.

I try to explain that people don't pull away because they don't care. Rather our American culture has taught us to be afraid of anyone who acts "different." We also hide the sick and dying and we think we can fix everything. We teach that the only way we are of use is to solve problems but not deal with emotions. So most people pull away because they just don't know how to be present with us in our hardest times.

Along the same lines, this abandonment happens not only to the person with dementia but to their caregivers as well. Bob DeMarco has written a wonderful piece about this in the Alzheimer's Reading Room called Are Alzheimer's Caregivers The Forgotten? He is much more blunt than I am and I would just like to quote one part of his post: "Like it or not, if you are a family member or friend of an Alzheimer's caregiver and you are not helping them -- you have abandoned them. I am sure this sounds harsh. But, it's not even close to the harshness of your own behavior."

I do hope that this blog post helps you if you have a loved on who is sick to know that your presence is needed before they end up in hospice. I know it's scary and uncomfortable, but if you can visit for a bit you will bring more help to your loved one than any medication, cleaning, or doctor can. You are walking with them through the hardest and loneliest time of their life. You are the footprints of God which will accompany your loved one on their journey.

Blessings,

Rev. Katie

Dementia Roller Coaster

Like many other illnesses, dementia does not progress in a linear fashion. One day your loved one may be unable to speak and the next day they are very chatty. One day they are so fatigued that you can barely wake them up to eat, the next day they can get out of bed on their own. It is a roller coaster ride of up's and down's.

As you may have read in my last post, Mom has progressed nearer to entering into end of life issues. Within a weeks time she became bed ridden, unable to hold up her own weight, rarely opened her eyes, and talked infrequently.

Today, Mom is a very different person. Her eyes were open the whole time I was there visiting. She looked brighter, had less Parkinson's shaking, and less anxiety. And, she was talking alot compared to where we were a day ago. Still she could not always get out what she was trying to say, but she could answer with more than just "yes" or "no" and was even using short sentences.

For Mom, and for many people with dementia, they will perk up and do better when they have company, particularly people they do not see on a daily basis. My brother and sister-in-law are in town and that really helped Mom perk up today. It is wonderful that she will have a few days of increased activity and fun while they are here. She is definitely on the up side of the roller coaster ride today.

Cedar Point Iron Dragon, Photo by Jeff Norris

With all the up's and down's, this roller coaster ride can be quite unnerving. You are never sure what each day holds and every time things get worse you don't know if it will stay that way. The other day I was worrying that I would never have increased communication with Mom, and that was scary. And yet today we were blessed with a great visit, which is wonderful. But is is also emotionally hard to handle. You can't prepare yourself for anything. Any increase in ability means you have more hope that your loved one will get better, yet you know in reality with dementia that even if you have a few months of better, eventually the bad will come back again. You feel like you barely get a breather before another severe drop in health occurs.

I also think of how hard the up's and down's must be on Mom as well. To be exhausted just trying to open your eyes and answer "yes" or "no" one day and then a few days later be able talk about how good lunch is. True, she has dementia and she probably does not technically remember how she was doing a day or two ago, but I do think on some level emotionally she feels the toll this takes on her. I can see how she is always just a bit unsure of how much she will be able to communicate with you each day. How badly she wants to open her eyes and speak on the days that she can't. Whether or not she remembers it, it has to be tiring for her.

Both the caregivers and the person with dementia need to find ways to ride the dementia roller coaster so it is as smooth as possible, enjoying the good days and making the best of the bad days. You can not read too much in to the bad days or the good days. I wish I could think that because Mom was doing better today that she will recover to where she was a month ago, but that is probably not going to happen. However, that does not mean I won't enjoy these times with her as much as I can.

Blessings,

Rev. Katie

"I Want to Go Home"

You often hear about people with dementia in nursing homes repeating over and over again "I want to go home." In everything I have read, this is assumed to happen because the nursing home is not the person's home so clearly they miss where they used to live, they don't understand why they are in a new place, and logically they want to go back home. However, is this really an issue of living in a nursing home and having dementia or is this a common problem with dementia in general no matter where the person lives?

Over the past few months, Mom has not recognized her home. She thinks where she lives is two houses instead of one. She often asks what happened to her house, says that she wants to be in her own house, and asks where her house is. When we ask her to describe what her house looks like, she describes the house she is currently living in so it is not like she is remembering a house from her childhood or another time in her life and so she does not see her current home as hers.

The only thing that has changed in her house is that what used to be the "great room" (a large living room) was sectioned off and a bathroom was added four years ago when we moved in and in anticipation of knowing Mom would not be able to use stairs in the future. However, the rest of the house looks the same. That change may explain why she thinks there are two houses, but she does not even feel like one of the two is her house.

For some people, what if dementia means you never feel like you are at home? Home is not just a physical place, but an emotional and spiritual one. If home is a place filled with your memories and hopefully a feeling of safety and with dementia you are losing your memories and everything feels unsafe, maybe there is no place you can call "home." Maybe when someone with dementia says "I want to go home" they are not asking for a physical place, but they are expressing how unsafe they feel. They may be telling us how unsure they are of life and everything they once knew.

Photo by Jeff Norris

This would not surprise me. When I was little and started having problems with anxiety and bipolar disorder when I was anxious and scared, I would rock back and forth and say to myself "I want to go home" yet I was in my own house. Home was safety, a feeling that the world was alright. I didn't feel that way so I was not at "home." I still say "I want to go home" when I am having a bad day.

Maybe the feeling of wanting to go home is common for those of us with certain brain illnesses because we are looking for emotional and spiritual comfort rather than an actual physical space we call home.

Blessings,

Rev. Katie