"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

Accessible Scrapbooking Activity

We have been trying to create more Montessori based activities for Mom and we have noticed in a home care environment that it is hard to think of something new all the time. In fact, it is hard to even create one new activity a week. Also, we need some activities that anyone can do with Mom even if they are not familiar with the Montessori format.

So, I started my search for an activity that would fit the following criteria:

1. Follows Montessori principles of being fairly self explanatory, has a template to follow, and accessible to the skills Mom still has.
2.  Ongoing project that you could do multiple times a week but it not actually the same thing over and over again. Provides some variety.
3. Anyone can pick this up and do the activity with Mom. Easy to understand and follow for all.
4. Needs to be meaningful so Mom does not feel like she is just doing busywork. 

I am an avid scrapbooker and have been wanting to scrapbook with Mom her hundreds of photos but scrapbooking takes a lot of color coordination, cutting, pasting, writing, decorating, etc... and is really too complicated for Mom. However, I found a new scrapbooking style that is still pretty but much more simplified. It's called Project Life by Becky Higgins. Project Life is a simple scrapbooking system with coordinating journaling cards and patterned cards so you can just slip your photos and writing in the pockets and be done with your project. You can fit four 4x6 photos and four journaling blocks on each page. It was created to document your life week by week but as Becky says, you can use the system any way you want. So, I got the kit and set it up in a way that would work for Mom.

I labeled the elements of the kit with coordinating directions written out onto cards and put them into one of the pocketed page protectors so people can see exactly where everything goes.

Project Life adapted for use for a person with dementia.

Basically, you can take a few photos out of Mom's many boxes of pictures and set a few in front of her. You ask her what photo she would like to put in the album first and she can point to it. You can ask her what she knows about the photo or who is in it and write that on a journaling card. If she does not know, you just leave it blank. You then point to two of the photo pockets and ask "Would you like to put the photo here or here?" and Mom can choose where to put the photo. For the title on each page, you can take out two title pages and ask Mom which one she would like. Many of Mom's photos are 3x5 or 4x4 so I cut extra 4x6 colored cardstock so people can adhere the photo to a background, again giving Mom a choice of two colors and asking her to pick the one she likes the best. Sometimes Mom can figure out how to slip the photos and journaling into the pockets and sometimes she can't so we can put them in for her, but always give her the choice of where to put it.

Finished scrapbook page.

This is an activity that allows Mom to feel the feelings of the events in the photos even if she does not remember who is in them or what the picture is of. It gives her choice of where to put the photos and what colors to use in a simple way with a template of the pocket pages to follow. It is an ongoing activity since we have a ton of photos and it is repetitive but not the exact same thing each day. The directions are simple and color coded so anyone who comes over can do this activity with Mom.

I am very grateful to Becky Higgins for creating such a simple system that I could adapt for Mom who has dementia. This is a great meaningful activity for all of us to do together which will last for generations to come.

Blessings,

Rev. Katie

Our First Montessori Based Activities for Dementia

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

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

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

Placemat Template. Photo by Jeff Norris

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

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

Sand pouring. Photo by Jeff Norris

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

Blessings,

Rev. Katie

Montessori: Changing the Way We Think of Dementia

How many times have you heard these comments about people with dementia?:

"People with dementia can't learn new things."
"All you can expect him/her to do is sit and watch TV."
"Dementia patients can't contribute to society anymore."
"You can have a person with dementia do the same task over and over again because they never remember it anyway."

My family and I have been told all of these things about dementia. We have been told to put Mom in an adult daycare where they fold towels over and over again. In our hearts Dad and I just felt that this was not right. We knew there had to be something better out there. We knew Mom, and each person with dementia, is still a person who deserves dignity and respect and who has the ability to contribute to the world in a purposeful way. From the medical field though we were hearing the exact opposite.

Instinctively I knew that what the medical field was saying could not be what laid in store for Mom. In fact, my whole theology revolves around showing people dignity and respect and helping people find purpose and meaning in their lives. With those two things, people feel happy, whole, and find their connection to that which is greater than themselves (God, the Universe, etc...). What people were saying about Mom went against my theology and my understanding of the world. I knew it couldn't be true, but had no proof until this week.

Dr. Maria Montessori 1870-1952

For two days Dad, Mom's caregiver, and I attended a Montessori-based dementia training with the Center for Applied Research in Dementia with Dr. Cameron Camp. This training showed me that we can help Mom have a wonderful and meaningful life even with her Lewy Body Dementia. What annoys me is that I did not see it before.

I went to a Montessori school until eighth grade and I know that is where the core of my belief system came from. I have preached about Dr. Maria Montessori and how her values are in line with Unitarian Universalism. My son goes to a Montessori school. Montessori has been a part of my life forever, yet I also live in a world which drills it into our heads the belief that people can't learn for themselves and they have no value if they are not fast, brilliant, and controllable. After eighth grade, I learned to live in this system because I had to, but I lost some of myself along the way. That's why I didn't notice that if I just applied Montessori principles to life, we could take care of Mom much better.

Dr. Camp taught us:
"People with dementia can learn new things."
"You can expect him/her to participate in activities they enjoy every day."
"Dementia patients contribute amazing things to society when we give them the chance."
"Never have a person with dementia do busywork, like folding towels all day, that does not honor their worth and dignity."

You will see many blog posts in the future about the Montessori method and how we will use it in our care with Mom and with the participants in our weekly dementia program. Right now I am just so excited to be reminded of how Montessori changes lives. As a person with mental illness, I know the Montessori teachings were what enabled me to believe in myself and figure out how to use my strengths to contribute to the world. Without it I would have only focused on what I can't do. Forgetting about the core Montessori teachings meant that we were only focusing on what Mom can't do. Well, no more. Mom has lots of great things ahead of her thanks to Dr. Camp and his colleagues who have brought Montessori to people of all ages. I am glad now I can return to my parents the gift of Montessori that my Mom and Dad gave me.

Blessings,

Rev. Katie

ArtCare In Practice

It is hard to describe what ArtCare is, which we use for our programs of the Carolyn L. Farrell Foundation for Brain Health. ArtCare is not art therapy. Our goal is not to cure an illness because so many of the diseases of the brain can not be cured. Particularly with dementia, there is no cure. What people really need is socialization, joy, and the feeling that they can still contribute something beautiful to the world. For our friends with dementia, this is what we are using ArtCare for. For our other programs for mental illness, ArtCare can help in the treatment process, but again it is not a cure. ArtCare is used to bring focus, purpose, and meaning into people's lives.

The art that we have been focusing on for our friends with dementia is abstract art. In the later stages of dementia and people struggling with Parkinson's or arthritis, detailed art that looks like an object is too frustrating to create. Art where you can let your imagination soar is the aim of our program. However, it is hard to get people to let go of thinking art has to look like something, be something, and just have fun like they probably did when they were little. However, as people get used to the process, they see the beautiful things they can create just by using their imagination and letting go of any art "rules" they thought existed. We always say in our programs that there are no rules and you can't make a mistake. Whatever you do is exactly right just the way it is.

Here are a few examples of the art they have created which will be auctioned off at the Alzheimer's Association Cleveland Chapter A Celebration of Hope dinner on April 26, 2012 :

Zentangles art practice. Calligraphy by Mike Gold, CLF Foundation Board Member.

Papercrafting. Individual collages made with patterned paper, cut to create one piece of artwork.

Blessings,

Rev. Katie

So Frustrating!

As I mentioned in my previous post, Mom fell recently and often a fall can lead to a downward slope. However, I really was not expecting this quick decline of Mom's in the last week. I just don't see how the fall, which did not hurt her, was just a bit scary, led to where we are today.

She is having trouble feeding herself and can't always figure out how to use her utensils. She is much more confused, sometimes talking like it is 20 or so years ago, but still fully aware that I am her adult child. Her hallucinations have increased. For some reason she thinks her house is actually three houses. Frequently what she says is completely out of context and we feel bad we can't figure out what she is trying to tell us. I am getting the sense that her anxiety has been heightened so much after the fall that everything is scary to her and anxiety can make you pretty confused and flustered. It can't be helping her already compromised brain.

Dementia is just so darn frustrating. In our experience, Mom stays stable for a bit but then gets worse by a big quick change rather than a gradual change. Just as soon as we get used to taking care of Mom the way she is, she all of the sudden gets a lot worse. You feel like you are always playing catch up and not doing enough because you can't figure out how to help her fast enough.

It's like any illness with no cure. When medicines don't help and there is nothing you can really do, you just have to do the best you can.

Blessings,

Rev. Katie

The Dreaded Fall

I have read in many places that falling is bad for the elderly, particularly those with dementia and other illnesses. It is like how they say getting pneumonia is the beginning of the end for many elderly. It seems that for some people, a fall leads to a downward spiral and no one can really explain why.

Even with all the safety bars we have in the house, Mom fell last week. While we got her up and she seemed ok, she was complaining more and more of different pain she was having. Dad took her to the doctor and they did not find anything, but we see some changes in her. For one, the increased pain, but also an increase in fear of doing things, some more vivid hallucinations, more fatigue, and a more confusion.

The anxiety created after a fall is actually one of the worst outcomes from a fall because then it results in the person being reluctant to walk and move around. Then their muscles weaken and they are at an increased risk of falling again. One of the essential things after a fall is to get the person comfortable with moving again so you can stop the deterioration of their body.

As with any change you see in your loved one, sometimes these things get worse for a bit and then everything resolves to a more stable state. Then again, sometimes things just keep going on a downward spiral. All caregivers dread the day your loved on falls, catches a bad cold, breaks a hip, or any thing happens that could change the trajectory of their disease for the worse.

Blessings,

Rev. Katie