Scared

As I watched my Mom struggle over finding the words she wanted to use today, I could not understand what she was trying to say, and I realized I am scared. I am afraid of how much worse her dementia will get. I am scared to watch her die, because in many ways that really is what we are doing.

As my son attempted to give Mom consequences for her not eating dinner and just eating ice cream, I realized he is scared. I asked him about this later. He said he is afraid if Mom does not eat right and take care of herself, she will get even worse and die faster.



I see how all of us-friends, family, and Mom-are a bit more scared now. There has clearly been a shift in Mom's functioning. She is much harder to understand at times and her physical ability is getting even worse.

Being scared happens in times like these. It's ok to be scared, but what surprised me today was that I had not been noticing just how scared some of us are.

Sometimes we get so caught up in trying to live day to day that we miss what we are feeling and how we are processing things.

Blessings,

Rev. Katie

Carolyn L. Farrell Foundation for Brain Heath

My family has started a non-profit organization in my mother's name in order to help other people with dementia and other diseases of the brain. We hope to use ArtCare programs, like TimeSlips, to help others.

Art and imagination can help so much for people with brain disorders, but often these programs are only in institutional and in-patient facilities. We hope to have many free-standing programs for people who are living at home.

Please check us out and support us at www.farrellfoundation.com.




Register for our fundraiser, Ride to Imagine, a 15 and 30 mile bike tour.

Follow us on Facebook at Carolyn L. Farrell Foundation for Brain Health.

Follow us on Twitter at CLFFoundation.

Together we can harness the transformative power of imagination for brain health.

Blessings,

Rev. Katie

Just Sign Here

Today Mom needed to sign some legal paperwork, and she could not sign her name. It was heartbreakingly sad. It made her cry, to loose such a seemingly simple ability. What must it feel like to loose the ability to sign your own name, to identify who you are? This was not a signature on a card which I could do for her. This was a legal document, important to what she wants for her life, and she could not sign it. She could not dictate on her own what she wants for her future.

A signature is a big deal in our society. Nothing is binding or official unless you sign it. In order to even have someone else be a legal signatory for you, she needs to be able to sign her name to a document stating that right, unless you have her declared legally incompetent, but she is not at that point yet. She knows what she wants, and should be able to say so.

I am sure on a less busy and stressful day, in a quiet area, she will be able to sign the document, but it won't be easy. Any stress makes it harder for her to write, and this needs to be singed in front of a notary, which means someone will be watching her. That makes her more nervous.

I just doesn't seem right or fair that Mom is losing yet another basic right and ability.

Blessings,

Rev. Katie

The Story Continues

Each week something new happens at TimeSlips. What was really interesting to me this week was how the second story became a continuation of the first story, even though the pictures were very different! Here are our two stories from this week:

"Boy and Perfume"

Photo from the TimeSlips curriculum

It looks like he is playing a game. It looks like he has been there a long time, in quarantine. His dog is sitting in there.

The boys name is Joey. The dogs name is Samantha.

I see a doctors bag. Perhaps he is being visited by a doctor. Maybe that's why he doesn't have a happy look on his face. Joey has chicken pox.

The light is on on the nightstand, it is evening. The drapes might be closed.

He looks happy. Maybe the doctor gave him the game he has and the game makes him happy.

Joey is seven years old. It looks like there might be a bottle of perfume on his bed, maybe Shalimar with the blue crystal top. But I don't know why a little kid would have perfume on his bed. He is going to put the perfume on the dog. There is also a pretty quilt there, he must have a grandmother. His grandmothers name is Thelma.

It looks like there is a glass of milk on a plate on the nightstand. Maybe it had cookies on it and that made him happy. Thelma brought him the cookies. Joey has a blanket with him.

He has been sick for a week. The doctor is there to see if he is well enough to get out of bed. The doctor says he is getting better. He will go outside and play when he gets up. 

"Party"

Photo from the TimeSlips curriculum

This is back at Joey's home, they are having a big party to celebrate that he is out of the hospital and is home. Thelma, his grandmother is there. There are a lot of desserts. Cakes, pies, bars. There is nothing other than gooey desserts there, which is good. I would take the chocolate brownies. Raspberries are good with chocolate brownies, but I don't see any in there. Ice cream would be good on the brownies, chocolate ice cream.

Joey is sitting at the table behind the two ladies. It looks like he is writing with crayons or something. The people in the background are the Ladies Aid Society at church, they are there to celebrate Joeys recovery.

It is early fall because the leaves are still green. The people look sort of dressed up, it might be after church. Maybe his sister is getting married and Joey is going to the wedding.

There is also spongecake on the table.

The woman on the left is Joeys mother, her name is Marie. The woman in the pink is Marie's sister, Joey's Aunt Alice.

There are a lot of different smells at the party-lemon, pineapple, chocolate. Marie is spooning bread pudding. One dessert looks like it is in a cookie jar. The people will eat everything on the table, there will be no leftovers.

So Joey does not get sick again, his mother would tell him "Don't go out without your coat."

The End

Blessings,
Rev. Katie

Creativity Abounds

At our TimeSlips program this week, I noticed just how much creativity exists in our minds, and how dementia affects each individuals creativity differently.

For instance, my Mom has trouble with her eyesight. We have been told that this may be due to Lewy Body dementia, but no one is really sure. When Mom reads, she says the words jump around on the page. When she is watching TV, she will see objects in the show that are not there, or she will think the whole show is being shown in shades of blue or red. This means that when Mom looks at things, her eyes see a myriad of amazing things. You can see this in the story below. The the possibility of the people in the photo wearing stilts or being puppets was from Mom as she saw very different things in the photo than what was technically there. Mom also felt no need to have the story be "right" and this might be because her dementia is a bit more advanced that that of the rest of the group.

It is so great to see this group work together and appreciate everyone's creativity.

"Duel On The Patio"

Photo from the Library of Congress, found in the TimeSlips curriculum

They are in a stance to duel. They dueling with epees. It looks like they are filming a scene because there is a backdrop and maybe a camera behind the man's arm. We think it is a movie. Either it is a movie or it is a husband and wife that are really mad at each other. It is a very serious situation. This might be a costume store and they may have swords.

Maybe it is a class and the others have swords in their hand and are waiting for their turn. There is a tile floor and trees in the background and furniture, it looks like it is a set outside. The guy with the black jacket might be an instructor. All three of the people in the background have swords in their right hands. The three in the back are waiting for their turn. They are learning fencing. 

The guy on the right is Maxwell and he is fencing with Amanda. The instructor in the black jacket is Hans. The other two people are the next pair, their names are Winston and Alice.

One thing that puzzles me is that they don't appear to have chest protection on and normally they do. They are not really going to harm anyone, the swords they have are not dangerous ones. The swords may be rubber, so they are having a friendly encounter. 

The name of the movie is "Duel on the Patio." I notice a urn on the right hand side, they are in Italy. Maxwell looks like he might have stilts on, his shoes look heavy from the side. One shoe is heavy and one is pointed like a fairy slipper, and they are in different directions. They are trying to get their balance.

It could be puppets, maybe the people are not real. There may be strings on them.

Some maid is going to come out with sandwiches and a bottle of champagne and they will relax for the rest of the day.

Blessings,

Rev. Katie

A Message from President Obama

On January 4, 2011, President Obama signed into law the National Alzheimer's Project Act (NAPA). Once it is enacted, it will create a strategic plan to deal with the escalating Alzheimer's crisis.

They need your suggestions as to what is needed for the strategic plan. Please see President Obama's message here:



There is a NAPA Public Information Session in the Cleveland Ohio area on Thursday, August 25- click here for information. Please attend if you can.

If you can not attend or you live in an area where they are not holding a public session, click here for the Act to Action page. On the right hand side, click on "Share Your Input" and let them know what you suggest.

This is an amazing opportunity for our voices to be heard.

The end of Alzheimer's starts with us!

Blessings,

Rev. Katie

Who Do You Want Us to Walk For?

The Alzheimer's Association Cleveland Chapter created these great "Why I Walk" videos for the Walk to End Alzheimer's which is coming up in just over a month. I love watching these videos to see all the reasons why people walk, and usually there is always at least one person they are honoring by walking. A family member, a friend, a neighbor, a coworker.

I want to know who you want us to walk for. We are walking for my Mom and grandmother and I will put their names on my walk shirt, but there is a whole lot of room for other names!

Tell me who you want me to add to my shirt.  Either comment below or send me an email at katie@movinginwithdementia.com

The end of Alzheimer's starts with us.

Blessings,

Rev. Katie