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

Crossing Into a New Phase: End of Life Issues

I am not really sure how we got to where we are today. Mom started to get worse over the last two weeks. Less able to walk, less able to talk, and having a harder time eating. She went to the doctor last Monday and her mini mental-state test score went down from a 10 to a 3. On Wednesday she was in a wheel chair most of the time but could still walk a bit to get to the bathroom when we lifted her out of her chair. Over the weekend though she has gotten even worse.

With those of us who see her on a daily basis, she barely talks, maybe saying yes or no and two or three word sentences. She rarely opens her eyes and sometimes smiles. Fortunately when other people visit her or talk to her on the phone she speaks more so that is good. She can't feed herself at all and we feed her. She can't walk or support her own weight so we lift her to get her in and out of bed. She can't use the bathroom anymore. She now clenches her hands, which is very common in late stage dementia. It can be bad because the skin on her hands can breakdown. She knows who we are but usually doesn't say our names, except for when she asks for my Dad.

Today when I was there she never opened her eyes or talked to me. Yesterday she talked to me a little but only opened her eyes when my husband Jeff or my son Jeffrey talked to her. She especially liked when my son did some karate style moves for her.

While I take care of people in the end stages of life for my job, it is different when it is your own parent. I am still in a bit of shock as I did not think we would get here this quickly. It was hard for me to walk into her room the other day and see her looking like the clients I work with who are dying.
We are getting orders for hospice and for probably a Hoyer lift to transfer her in and out of bed. Starting tomorrow we will have two people in the house with Mom at all times, so we have hired caregivers 24/7. We have been unable to wash, turn, lift, and do basic care for Mom all on our own now that she has gotten so bad so quickly.

Fortunately Kendal at Home, a senior continuing care community that allows members to age well in their own homes, coordinated all of these things for us. In one day they found all the caregivers and will be getting in touch with the doctors for the hospice and all the orders we need for medical equipment. They coordinate all the equipment rental, all the care supplies, everything that we will need to make sure we can care for Mom safely and comfortably in her home. I am so glad my Dad joined the Kendal program because I don't know how we would have coordinated all this so quickly and also made sure we got people who were responsible and trustworthy. And, if there are any problems with any one system, we just call Kendal and they take care of it.

As we go forward I will keep you posted on what works for us in caring for her so that if you are in the same situation in the future you might get some help and support from what we do.

For right now, in terms of activities for Mom, she is not longer able to do activities. But, we can read to her the types of novels she has always liked. Since she does not open her eyes much reading and music would be a good option at this point. We can still try looking at photos when she is opening her eyes. We can talk about old fun family stories and just be there with her as best we can. And, since she is more alert when visitors come over, we will invite people over more so that she has some fun each day.

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

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