Thursday, July 28, 2011

When All You Can Do Is Laugh

This is something I wrote a while ago and forgot to post. Interestingly, the main point of it is very appropriate for the week we are having. We need to find more laughter this week!:

Have you ever been having such a bad day that all you can do is laugh? Laugh at times when most people might think you should be crying? Laugh because life is so messed up that you can’t even believe what you are experiencing is even happening?

That is what our evening was like today. Lately, there has just been a series of bad events with extremely sick family and friends, and in the middle of all that, Mom is getting worse and worse.

So tonight, as Mom was agonizing over the calendar again, Dad and I were trying, to no avail, to help her understand what was going on. Then all three of us started laughing. Laughing because it seemed like no matter what we did, nothing seemed to make sense. It was as if we could not understand how the heck life had gotten to this point where writing a lunch date on a calendar ended up being a monumental and anxiety ridden event.

I think sometimes in life we laugh because if we didn’t laugh, we would be crying.

Over the past few weeks, Mom has been more and more confused. Today I was doing the dishes and the water was on when I heard Mom talking. I thought she was asking me a question, so I turned off the water and asked her what she needed. She said “I wasn’t talking to you, I was talking to the person sitting next to me.” Then she paused and said “Oh, there isn’t anyone next to me, is there?”And she started laughing at what had happened.

We are in one of those times in our lives where everything is a mess and you go through every day just trying to survive and get to the next day. We are so worn out now that there is nothing else to do but laugh, which is probably about the most fun we have had for weeks.

So, don’t be afraid to laugh, even when things are awful, because laughter is a gift. Even in hard times laughter helps lift our spirits, it is a way of giving up trying to control everything, it allows us to let go of all that anxiety, and it tells us that in some small way everything is still alright.


Rev. Katie

Wednesday, July 27, 2011

Multigenerational Storytelling: TimeSlips

We had another TimeSlips session today and we just had one couple able to attend. My sister helped me facilitate since my Dad is out of town. The dynamic is different with one couple, but they were wonderful and very willing to participate anyway. We had a great time socializing afterward.

One of the things that was really interesting to me today though was that we had a seven year old in the mix, my son Jeffrey. First Jeffrey helped me pick out the photos we would use and he thought of some starter questions for each photo. I was surprised by how engaged he was in the planning process. This made him excited to then go to the TimeSlips program. (It did help that one of the photos we used was of him from a few years back.)

At TimeSlips, he wanted to help facilitate, so he asked some of the questions, and he also contributed to the story. I was a bit worried that he did like to answer every question, but the couple was very nice about having him participate.

After we finished the storytelling and we were chatting, Jeffrey was playing a game on the iPad. I suggested that he show it to one of our participants, and Jeffrey, who is usually very shy, was quite engaged in showing how his game worked and our kind couple talked to him about what he was doing. It was a pretty simple game and that got us all to talking about the possibility of games on the iPad being accessible to people with dementia, even though maybe they need a caregiver to assist them. Just as Jeffrey was showing what part of the screen to press to make the game work today.

What I loved the best was seeing Jeffrey and the person with dementia laughing at the animal on the screen and really communicating in their own quiet way. I hope our new friend liked the experience as much as Jeffrey did.

Jeffrey said he had a really good time today. This was encouraging to me because he sees so much of the day to day caregiving that sometimes I worry he forgets we can have fun with people who are older than us. I was also heartened because usually Jeffrey won't talk to people and hides from them, but this storytelling brought him out of his shell and got him participating in a larger community.

The other thing that was quite interesting today was how talkative our participant with dementia was during the storytelling, but afterward when we were chatting and asking him about his grand kids, he could not participate. He was often unable remember names, ages, or what the kids were doing. He is a very smart and creative person, so alive during the storytelling, but much more apprehensive later when the conversation relied on memory.

Today again reiterated the power of this storytelling process, and showed me how this might work in a multigenerational setting.

Here is one of our stories from today (This is actually a photo of Jeffrey from when he was little):
 "The little boy's name is Jeffrey. He's talking to me. He's going somewhere alright. He's asking me for directions.

He's coming from the store. It is the fall-a kind of cold day. He's got some candy behind him. He's two years old. He's not 21. 

He's wearing flannel pants. It looks like pajamas. His mother took him to the store. He is sitting on the bike. He got to the store on the bike, and he is pulling something. It looks like a wagon.

There is a leaf blower in the basket. He's going home to help dad blow leaves and eat the candy."

The End.


Rev. Katie

Monday, July 25, 2011

Will We Ever Get A Break?

It seems like you just can’t plan anything when you care for someone with dementia and other age related issues. Dad has been planning for months to go on a much needed Buddhist retreat for this week, and Jeff and I are happy to take over all the caregiving for Mom. However, every time we make any plans, something happens and things get worse.

We noticed some major changes with Mom on Saturday and hoped that the trouble she was having was an isolated incident, a day when her body just was not doing what she wanted. Dad left early Sunday morning and Mom’s problem from Saturday seemed to be under control.

However, today, what we thought was an isolated incident, has come back even worse than Saturday. I can’t get a hold of Dad because he is on a silent retreat with no phones and no email. I could call the zendo in an extreme emergency, but I would not call this extreme.

Due to this change, she does not want to go out anywhere and I am hoping she does not cancel on the fun things her friends and family have planned for her this week.

Literally, it is just one thing after another and for a person with dementia who does not handle change well, this is just sad. I hate to see her struggling with wondering why she is worse today than she was two days ago. Everything is just so confusing for her. She often says “I just don’t know what’s going on Kate.” I wish she had a break from the progression of her illness. I wish we all had a break from the downward spiral she is in.
Mom & Morrie (Photo by Jeff Norris)

To top it off, we have a dog, Morrie, who is like Mom’s sixth child. Unfortunately, Morrie attacks our other dog Bailey every time food is around. But, for some reason, when Dad is not home, Morrie attacks Bailey all day. (I think this is some kind of alpha male thing.) Which means we can’t leave Mom home alone at all, or in a room alone because if the dogs fight, she gets in the middle and could get hurt. Or she will try a new discipline tactic, like throw a glass of water on the dog, and then I need to not only stop a dog fight, but clean up the water. Morrie also scarred Bailey so bad that she had an accident, which Jeff had to clean up in the midst of trying to make sure Mom did not fall. And yes, I know we should find Morrie a new home, but that would be like Mom loosing a child and she could not handle that. If this gets bad enough though, we would do it to make sure everyone is safe.

Ah, it’s going to be a long week. But Dad needs the time off and this retreat is really important for his spiritual and mental health.

For all of you in a similar situation, I feel for you. This happens with dementia and I am sure many other illnesses. Hang in there and ask for help if you need it. My sister is coming over to help out a few times this week, which is wonderful!


Rev. Katie

Sunday, July 24, 2011

Communication Breakthrough

Mom has been having a harder and harder time communicating with us. She stumbles over words, knows what she wants to say and just can't think of the words she needs.

We may be at the dinner table and she wants ketchup for her hamburger, but can't remember the word ketchup. Or she read a story in the newspaper and wants to tell us about it but can't remember what the story said. However, through reading more about the TimeSlips program and alternative, more creative ways to communicate with dementia patients, Dad and I started doing something different.

When Mom is trying to tell us something and she can't find the words she needs, we ask her to either describe it or tell us a story. For the ketchup example, we usually know when she is asking for an item so we ask her describe what the item looks like or what it does. If she is trying to remember the story she read in the newspaper, we ask her to tell us a story. Interestingly in those situations, she tells us a story of something that she remembers from when she was younger but is similar in topic or some way to the current event she is trying to talk about. If we have read the paper or at least have seen the headlines, we can usually guess what she is trying to tell us by connecting her older story to something current that has similarities.

So, if you are talking to someone with dementia and they are having a hard time communicating with you, ask them to describe what they are thinking of, or tell you a story instead. It works wonders by letting you both communicate better, but it also relieves some of the embarrassment of the person with dementia. This way you focus not on what they can't remember and how awkward they sound, and more on what wisdom they wish to share with you.


Rev. Katie

Saturday, July 23, 2011

My Second Blog: Bipolar Spirit

I have written a few posts on this blog that address the issue of mental illness. I was surprised that I received quite a few comments and personal emails about those posts, either from others with bipolar or from loved ones who are their caregivers. I found that there are many people who are looking for support around the issue of mental illness.

Like dementia, mental illness affects the whole family. It is also an illness that, for most people, is not curable and medications do not always work. It is manageable though, and like dementia takes a lot of trial and error to discover how the patient can have the best quality of life possible.

So, I have started an additional blog, Bipolar Spirit, about mental illness and the spirit. I believe mental illness is a chemical imbalance and also a spiritual issue because of the interconnection between mind and spirit.

I will continue Moving In With Dementia and I am so grateful for how many of you read this blog and contribute to the care of people with dementia. I look forward to the future of both blogs and how we as a community can help combat these illnesses which we can't fix, but can manage.

I would also like to let you know that you can now receive email updates about my blog. You will find the email signup on the right side of each blog.


Rev. Katie

Thursday, July 21, 2011

Socialization is Treatment

At times it is hard for people outside of our home to understand some of what we do as caregivers for my mom. One topic that we get quite a few comments about is how we, in their opinion, "force" mom to do things. Go out to lunch, go to parties, go to church, exercise, eat healthy, go to dementia groups, etc... In their opinion we are not listening to Mom and forcing her to do things she does not want to do. They think this because sometimes that is what Mom tells them we are doing. Which logically would lead most people to believe that we are indeed forcing her, and that is a bad thing.

Dad and I were just talking about this the other day and he was wondering why people do not understand that while Mom often says she does not want to do things, she does enjoy the time out of the house. What people also don't realize is if we did not get her out of the house, she would sleep almost 24 hours a day, and that would be terrible for her body, mind and spirit. Dad wonders why people don't understand that socialization is one of Mom's treatments, and that even though Mom says she does not like it, when she is out with others, that is one of the only times she is actually happy and engaged, like yesterday at TimeSlips, our storytelling group. She had a great time and was excited about participating, but when we asked her about it later, she said she was also miserable. People don't understand the complexity of this issue, because many people do not understand depression.

I completely understand where Mom is coming from, and I understand why even though she enjoys things, she is still miserable, which is all the more reason not to allow her to sit in bed all day. Mom is depressed, as happens with many people with dementia. I understand how she feels because I am often depressed because of my bipolar disorder. I do the exact same thing she does. I blame those closest to me and whatever we do together for my misery because that is part of my illness. I never really understood that this blame was actually a symptom until I did a lot of reading about mental illness. Due to my treatment, I have done a lot of work to be able to recognize and stop when I am blaming others, but Mom is unable to do such processing, and that is fine with us.

For both Mom and me, one of the best treatments for our illnesses is socialization. In the moment it gives us a bit of happiness in the midst of depression. It shows us we are loved and cared for. It brings light to our life. It won't fix us, and we may still feel miserable when we are done, but some joy is better than nothing. It is nourishment for the soul which should not be discounted.

I wish others could understand that us involving Mom in life is actually a very compassionate and caring thing to do. If not, she would stay depressed in bed instead of having some enjoyable time of the day. For those wondering, we have tried to treat the depression with many medicines, and none have worked. Apparently this is especially common in people with dementia as written about in this article which says Alzheimer's patients are not helped by antidepressants.

The treatment of many diseases of the brain means normal, rational rules and assumptions don't apply. We have done our research, talked to Mom's doctors, who say socialization is essential, and we are doing everything we can to help Mom have the best quality of life she can, because she deserves nothing less.


Rev. Katie

Wednesday, July 20, 2011

The Power of Imagination: Our First TimeSlips Program

My Dad and I held our first TimeSlips program today and I think it went really well. TimeSlips is a group creative storytelling program for people with dementia created by Ann Basting, PhD in Milwaukee. TimeSlips focuses on helping people with memory loss to be creative and focus on imagination instead of focusing on trying to regain memory. Basically, the participants look at a picture and the facilitator asks some open ended questions which inspire comments that create a story. There are no wrong answers, and everything gets written down. This honors people's individuality, creativity, and ability to still contribute to the world. We love TimeSlips because it gives us a way to help ease the suffering this disease causes by having fun, giving people a way to participate tangibly in their community, and creating a supportive peer group.

A wonderful group of people came to our first session of TimeSlips and we had a great time with them. We hope they received benefits from the program and from being together socially. Mom was quite engaged and it was great to see her excited about creating the story. We did decide as a group to go forward with the program with weekly meetings, so if you are in the Cleveland area and want to participate, email me at

Here is one of our stories from today based on this photo by George Eastman House from the TimeSlips Storytelling Kit.

We've got a sweet little child there who is looking and thinking "Oh, can I have some goodies here?"

Goodies from Mom. Goodies are from the jar.

The dog would like to have something to do with it. Or, if not, he is going to have something to do with it soon. It's a golden retriever named Murphy.

Is the boy supposed to have those cookies? The dog thinks he should have the cookies.

The young man had a plan because he has a drink with him. He is going to have more than one cookie. His name is Alexander, he is a smart little one.

They are in the kitchen after school, in the afternoon.

Looks like he has a tear in the knee of his pants from playing baseball, climbing trees, and falling while he was running. He has a few treats.

He went into the kitchen and thought "I'm a little hungry, Mom isn't here, but the dog is."

Alexander got there first, Murphy heard Alexander getting the food, maybe he smelled the food too. They smelled peanut butter cookies and a fruit punch drink. He put jelly on the cookies. Murphy is going to pounce and take a few more steps and get the cookie. Golden retrievers love to eat. Alexander will be happy to share his cookies because he has a whole can of cookies so he won't run out.

Alexander and Murphy are not worried about dinner, they probably would like cookies better than dinner anyway.

Alexander is looking at his mother who just walked in, he's been discovered. He is not too worried about that though. They are in the moment, not thinking about anything but what is in front of them. He got some jam on his thumb, which he licks off just as his mother comes in.

The End


Rev. Katie

Tuesday, July 19, 2011

An Amazing News Story

This front page article in the Cleveland Plain Dealer by Connie Schultz is fantastic. It made me cry and reminds me so much of my parents. I just wanted to share it with you all:

Love and Determination in the Face of Alzheimer's by Connie Schultz


Rev. Katie

Monday, July 18, 2011

Just Add Water

The other day my Dad was in my parents room and I heard him say "I have to take all the drawers out because they are full of water." When he came out of the room I asked him if the ceiling was leaking, and he said "No, Mom just gave the bathroom a shower."

My parents have a walk-in shower with no curtain or doors in their bathroom because my mom can't step into a tub or regular shower anymore. Somehow Mom turned on the water for a shower and instead of aiming it at her body, she sprayed the whole bathroom down with water. All the drawers and cabinets were filled with water. Enough water that it seeped through her closed pill box and melted all of her pills.

Things like this have been happening more and more recently. Random accidents that you can't even figure out how they happened. Very much like a child actually. Like when I went to the restroom to wash my hands after lunch one day when my son was two years old and when I came into the living room there was flour all over him, all over the room, on the walls, etc... And I was only gone for a minute!

It may be a bit aggravating when things like that happen, but it is also pretty funny. I mean, how often does your bathroom get a shower?

Dad amazes me with his ability to joke about these incidents, clean everything up, and make sure Mom does not feel belittled or bad because of her mistake. I am quite proud of the way he has become more patient and understanding as he cares for Mom. I also love how Mom jokes about things too and her smile still lights up a room!

When these things happen right as you are walking out the door, it is hard to handle. However, there are many times when you can, and need, to find the joy in such events. It allows us all to laugh a bit together, see the beauty that still exists in Mom, and gives us great stories to share.

May we all find the joy in even the most unpredictable of life's events.


Rev. Katie

Wednesday, July 13, 2011

Walk to End Alzheimer's: Why I Walk

My family and I will be attending the Cleveland West Side Walk to End Alzheimer's on September 17, 2011. The Alzheimer's Associate was kind enough to make video's about why we walk. Please watch this video of me and my son Jeffrey.

Join our team if you can. The walk will be a wonderful family friendly event at Lorain County Community College. There will be kids events, jugglers, music, opportunities to honor your loved one with dementia, and great community. Most importantly, it will be a day filled with hope.

If you can't be there for the walk, donate any amount, $5, $10, or more, to help us raise funds for the Alzheimer's Association. When you donate, send me an email at with the name of someone you wish to honor. I will put those names on my shirt for the walk.

Thank you for your support.

The end of Alzheimer's starts with us!

Rev. Katie