"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

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

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