I have noticed that Mom has developed some little quirks over time that come with her dementia but I rarely hear people mentioning such things in the books I read. I thought it might be helpful for people to know a little more about what can happen when a person has dementia and parkonsinism which comes with hallucinations.
I have written about Mom's hallucinations before, such as seeing a car drive into a grocery store, or seeing people in the house who are not there. Mom has always been quite aware of these and just asks us if we see what she sees. If we don't she knows it is a hallucination and she tries to ignore it. (Actually, I am quite impressed with how Mom handles the hallucinations as I would find that quite scary.)
Recently though she has been fixated on seeing certain things over and over again. I am not sure how much of this is the hallucinations and how much is the trouble she has with her eyesight, but either way, it has become a pattern now.
For months Mom has been insisting that someone is putting strings or worms in her food. This is much harder for her to understand is not actually there because she can pick up the piece of food and show us where she sees the string. We tell her we can't see it, but she does have something physical in her hand, so it seems more real to her than say, the car in the grocery store. Lately she has also been saying little spiders are crawling on her or on the floor and she keeps swiping them away or stepping on them. Again, it is harder for her to always know these are not real. She might be seeing some dirt on the floor, a piece of fuzz on her shirt, or hair that brushes on her neck, that all make her see and sometimes feel something crawling on her.
When Mom insists someone is putting strings in her food, we just tell her we don't see it and we try to explain it is just rice, or shredded cheese, etc... I can see she is getting a bit more insistent about it though. I think eventually we won't be able to explain it away for her anymore because her brain won't understand after a while. It's important to know that when people with dementia insist they see things or someone is doing something to them, they are not trying to be obstinate or annoy you. They really think what they are seeing is there. So try to understand where they are coming from, explain it if you can, divert their attention to something else, or change the situation. By change the situation I mean do things a bit differently. One day serving Mom food that is mixed together, like fried rice, or taco meat with cheese on it may be a bad idea. She may need all her food separated so she does not see "things" in her food.
Little quirks are common in people with dementia. It might surprise or scare us as caregivers, but it is actually normal. When we can understand what is going on, it is a bit easier for us to figure out how to deal with it and make things a bit easier for our loved one.
Blessings,
Rev. Katie
Tuesday, December 27, 2011
Wednesday, December 7, 2011
Zentangles: Meditative Art Practice for Dementia
Today in our TimeSlips session, we added in another art form to experiment with. We made some Zentangles, which is a meditative art practice that enables you to make abstract pictures using different patterns. Simply put, it is meditative doodling. You take a blank square, draw in some guidelines, and then fill the square with any patterns you dream up. Then you can shade the finished square in with plain pencil if you want, but today we colored them with colored pencil. I took everyone's finished Zentangle and mounted them on colored note cards so everyone got to take home a handmade card they can use in the future.
This was a really great art exercise as it was accessible to the people in different stages of dementia and their caregivers were able to create as well. I think it was a relaxing and fun process for all of us.
There are many different art forms to be used in helping people with dementia, the key is finding things that are easy and abstract.
Zentangles are a great meditative art practice no matter your artisitic ability. Try it out, you will really like it! Then you can use your Zentangles for handmade cards, tags for Christmas gifts, or take a bunch and frame them in a large frame.
Blessings,
Rev. Katie
This was a really great art exercise as it was accessible to the people in different stages of dementia and their caregivers were able to create as well. I think it was a relaxing and fun process for all of us.
There are many different art forms to be used in helping people with dementia, the key is finding things that are easy and abstract.
Zentangles are a great meditative art practice no matter your artisitic ability. Try it out, you will really like it! Then you can use your Zentangles for handmade cards, tags for Christmas gifts, or take a bunch and frame them in a large frame.
Blessings,
Rev. Katie
Saturday, November 26, 2011
No Gravy
This was our first Thanksgiving without gravy.
My Mom makes the best gravy, and last year she was still able to remember how to make it. This year she really wanted to make the gravy and we assumed she still could. After a few minutes though it became evident that she couldn't and the gravy was burnt and had to be thrown out.
At first I saw this as sad, because Mom was sad that this was the first Thanksgiving without gravy. I felt bad she was unable to make this for us. I was sad at the progression of her disease from last year. But then I realized, who the heck cares if we don't have gravy?
We have each other and we have another Thanksgiving with Mom. I will take that over gravy any day.
The holidays tend to make it glaringly obvious how your loved one has changed since the last year, and that can be hard to handle. Instead of focusing on what has been lost, you have to remember all the things you still have and all the time you were able to have together over the year. There are still many blessings in life even if you don't have gravy.
Blessings,
Rev. Katie
My Mom makes the best gravy, and last year she was still able to remember how to make it. This year she really wanted to make the gravy and we assumed she still could. After a few minutes though it became evident that she couldn't and the gravy was burnt and had to be thrown out.
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| Our turkey with no gravy. |
At first I saw this as sad, because Mom was sad that this was the first Thanksgiving without gravy. I felt bad she was unable to make this for us. I was sad at the progression of her disease from last year. But then I realized, who the heck cares if we don't have gravy?
We have each other and we have another Thanksgiving with Mom. I will take that over gravy any day.
The holidays tend to make it glaringly obvious how your loved one has changed since the last year, and that can be hard to handle. Instead of focusing on what has been lost, you have to remember all the things you still have and all the time you were able to have together over the year. There are still many blessings in life even if you don't have gravy.
Blessings,
Rev. Katie
Monday, November 7, 2011
Alzheimer's and the Soul
I read an interesting blog post from Psychiatrist, Dr. Farid Sabet called Soul Essence Shining Through the Alzheimer's Brain. He speaks of the soul always being part of us, even if our mind is deteriorating. He says, "you will notice sparks of a soul shining through a dysfunctional brain."
We too often forget about the spiritual side of ourselves, particularly when we are dealing with dementia. All too often people say they "lost" their parent to Alzheimer's, even before the person has died. We think that our loved one is no longer who we once knew. In reaction to that, we might not know how to interact with someone with dementia since they seem to be "gone" so sometimes we don't interact with them at all. But if we remember that their soul, the essence of who they are, still remains, we remember their humanity.
In my theological understanding, I do not believe in heaven and hell, but I do believe in the soul. The soul as being the essence of who we are that is an energy which remains in this Universe for all time. That is why so much of my ministry focuses on discovering your own soul, who you truly are, because that helps us be happier and more productive, caring members of society. The more grounded we are in ourselves, the more we can help the world.
I believe children are far closer to understanding their soul than adults because they have not been taught as much as we have to be a certain way or please certain people. It is possible with dementia that people again come closer to their soul because they are going back to their core being.
For instance, my Mom still wants to care for people and animals. The same things, like a laughing child, make her smile. I see the essence of her still here, even if her memory is not here. She values love, relationships, and caring for others. That is who she is, and that is always who she will be. If we can see that more often, we are better able to spend time with our loved ones. We can just sit and listen to them, or if they no longer talk, we can talk about the things we know touch their soul. It is up to us to remember to see their soul through the illness.
When Mom was in the early stages of dementia, I made her a little scrapbook to hang on her wall which has photos of her in her element, with boxes of homemade cookies and her grandkids eating the cookies. It says "What you do may change, but who you are will never change." I always wanted her to know that even if she can't make cookies one day (and now she can't), the essence of who she is will always be here, and we will always try hard to remember that. I wanted her to remember that too, so she knows even if her mind is gone, her heart and soul are still here.
Blessings,
Rev. Katie
We too often forget about the spiritual side of ourselves, particularly when we are dealing with dementia. All too often people say they "lost" their parent to Alzheimer's, even before the person has died. We think that our loved one is no longer who we once knew. In reaction to that, we might not know how to interact with someone with dementia since they seem to be "gone" so sometimes we don't interact with them at all. But if we remember that their soul, the essence of who they are, still remains, we remember their humanity.
In my theological understanding, I do not believe in heaven and hell, but I do believe in the soul. The soul as being the essence of who we are that is an energy which remains in this Universe for all time. That is why so much of my ministry focuses on discovering your own soul, who you truly are, because that helps us be happier and more productive, caring members of society. The more grounded we are in ourselves, the more we can help the world.
I believe children are far closer to understanding their soul than adults because they have not been taught as much as we have to be a certain way or please certain people. It is possible with dementia that people again come closer to their soul because they are going back to their core being.
For instance, my Mom still wants to care for people and animals. The same things, like a laughing child, make her smile. I see the essence of her still here, even if her memory is not here. She values love, relationships, and caring for others. That is who she is, and that is always who she will be. If we can see that more often, we are better able to spend time with our loved ones. We can just sit and listen to them, or if they no longer talk, we can talk about the things we know touch their soul. It is up to us to remember to see their soul through the illness.
When Mom was in the early stages of dementia, I made her a little scrapbook to hang on her wall which has photos of her in her element, with boxes of homemade cookies and her grandkids eating the cookies. It says "What you do may change, but who you are will never change." I always wanted her to know that even if she can't make cookies one day (and now she can't), the essence of who she is will always be here, and we will always try hard to remember that. I wanted her to remember that too, so she knows even if her mind is gone, her heart and soul are still here.
Blessings,
Rev. Katie
Thursday, October 20, 2011
Rules Don't Apply
When I was little I learned not to drink milk from my cereal bowl, I learned to eat neatly and not drop my food, I learned not to play with my food, and I learned that I had to eat what was put in front of me. I learned all the things most of us teach our children.
So the other day when my Mom mixed rice, bananas, and honey together at dinner, I was reminded of how many of those rules do not apply anymore. Mom just commented yesterday morning, after she had drunk the milk out of her cereal bowl, "Remember when I taught you not to drink milk from your bowl?" That memory made her smile. It was kind of funny for us to think of how she now does many of the things she taught us not to do. Her hands shake from the Parkinson's so she is sometimes a messy eater and drops her food. She does not always want to eat what is put in front of her so we make her something else.
What makes me really happy though is that none of us care about the rules. Who cares if she makes odd food pairings or has a messy spot at the table? She is still the beautiful person she has always been. She is still important and valued. It does not matter that the rules no longer apply.
It can be hard for us to watch these changes because these rules are often the ones that people believe split adults from children. They are a sign of ability and health. At first it made me sad to see Mom dropping her food, but that is really just my fear over the progression of her disease, not that it actually matters if she drops the food. As we see these changes, we need to remember that our loved on with dementia is still valued and important. The changes do not mean we are losing our loved one, but that they are transitioning into a new phase in their life that we have the privilege to be with them for the journey.
Blessings,
Rev. Katie
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| Honey banana rice with pork. |
What makes me really happy though is that none of us care about the rules. Who cares if she makes odd food pairings or has a messy spot at the table? She is still the beautiful person she has always been. She is still important and valued. It does not matter that the rules no longer apply.
It can be hard for us to watch these changes because these rules are often the ones that people believe split adults from children. They are a sign of ability and health. At first it made me sad to see Mom dropping her food, but that is really just my fear over the progression of her disease, not that it actually matters if she drops the food. As we see these changes, we need to remember that our loved on with dementia is still valued and important. The changes do not mean we are losing our loved one, but that they are transitioning into a new phase in their life that we have the privilege to be with them for the journey.
Blessings,
Rev. Katie
Saturday, October 1, 2011
"I Think I Lost My Mother"
It is quite an eye opening experience when you have to walk up to a stranger and say "I think I lost my mother, can you help me?"
Today Mom and I went to Jo Ann Fabrics, a large craft store. This is a store she knows well so when she said she was going to the restroom a few aisles away and she did not want me to come help her, I said ok. Clearly that was a bad idea.
Mom went to the restroom, I put something in my cart, and then I went right over to the bathroom to help her, only to find the bathroom empty. I then checked the men's bathroom and looked all around the aisles and could not find her. I started to panic. I had lost my mother.
I went to ask a sales associate who was helping another customer if she saw a woman in a long yellow coat with white hair. When she said no I told her and the customer, "I think I lost my mother, can you help me?" The sales associate was mid-aged, and just seemed to think I was weird. The customer was a little older, and immediatly said "Does your mother tend to wander off?" She understood right away that I was serious and Mom must have dementia. The customer was immediatly ready to help me search the store, when I saw Mom walk across the aisles so I ran over to get her.
For a slow lady with Parkinson's who needs a handicapped tag for the car, apparently she can be surprisingly fast at times. When I got to the aisle, I couldn't find her again!
A few aisles down I found Mom and all was well. She had gotten lost trying to find the bathroom. We finally got to the restroom and laughed hysterically at how I had lost her.
It is funny now, but in the moment it was really scary. I thought I might have to ask the store to go in lock-down like they do when a child goes missing. I had heard of this happening to people, and even Dad had mentioned that Mom has a tendency to wander off when he is getting something off the shelf in the grocery store. However, I figured it would not happen to me because I am faster than Mom and could keep an eye on her. I was so wrong!
When Mom first said she was going to the bathroom, I said I would go with her, but she said she didn't want me to. I really wanted to let her maintain some of her independence and since this is a store she knows, I figured I could let her get to the bathroom. I would then just follow a minute later so if she needed me I would be there.
It is hard for me to think of needing to care for Mom in the same way I need to care for my child. Actually, I no longer need to dress my son, but I do need to dress Mom. I have no idea where the line is between caring for her so much that I take away what independence she has left, and not caring for her enough so things like this happen.
Clearly I need to adjust my idea of how much independence Mom can have and care for her more like a young child. I hate admitting that because it can sound condescending or belittling, but I need to keep her safe.
This was another day of change and learning what phase of dementia we are now in.
Blessings,
Rev. Katie
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| http://www.flickr.com/photos/blackdutchdoublelibra/129954840/ |
Mom went to the restroom, I put something in my cart, and then I went right over to the bathroom to help her, only to find the bathroom empty. I then checked the men's bathroom and looked all around the aisles and could not find her. I started to panic. I had lost my mother.
I went to ask a sales associate who was helping another customer if she saw a woman in a long yellow coat with white hair. When she said no I told her and the customer, "I think I lost my mother, can you help me?" The sales associate was mid-aged, and just seemed to think I was weird. The customer was a little older, and immediatly said "Does your mother tend to wander off?" She understood right away that I was serious and Mom must have dementia. The customer was immediatly ready to help me search the store, when I saw Mom walk across the aisles so I ran over to get her.
For a slow lady with Parkinson's who needs a handicapped tag for the car, apparently she can be surprisingly fast at times. When I got to the aisle, I couldn't find her again!
A few aisles down I found Mom and all was well. She had gotten lost trying to find the bathroom. We finally got to the restroom and laughed hysterically at how I had lost her.
It is funny now, but in the moment it was really scary. I thought I might have to ask the store to go in lock-down like they do when a child goes missing. I had heard of this happening to people, and even Dad had mentioned that Mom has a tendency to wander off when he is getting something off the shelf in the grocery store. However, I figured it would not happen to me because I am faster than Mom and could keep an eye on her. I was so wrong!
When Mom first said she was going to the bathroom, I said I would go with her, but she said she didn't want me to. I really wanted to let her maintain some of her independence and since this is a store she knows, I figured I could let her get to the bathroom. I would then just follow a minute later so if she needed me I would be there.
It is hard for me to think of needing to care for Mom in the same way I need to care for my child. Actually, I no longer need to dress my son, but I do need to dress Mom. I have no idea where the line is between caring for her so much that I take away what independence she has left, and not caring for her enough so things like this happen.
Clearly I need to adjust my idea of how much independence Mom can have and care for her more like a young child. I hate admitting that because it can sound condescending or belittling, but I need to keep her safe.
This was another day of change and learning what phase of dementia we are now in.
Blessings,
Rev. Katie
Friday, September 30, 2011
Compassion
The other day after breakfast as I was running around trying to get ready for the day, I heard my husband Jeff ask Mom if he could help her put on her shoes. This was odd because usually Dad and I help Mom get dressed and she was already dressed and wearing shoes. Mom said yes, and added that she had a bit of trouble with her shoes this morning. My husband casually said "I noticed you have two different shoes on so I thought I could help you with that."
For some reason, this struck me as a such a special and compassionate moment. The way Jeff asked Mom about her shoes was so kind. He did not point out that she had two different shoes on or make a big deal about anything, he just offered to help her. I also think it is sweet that he even noticed her shoes because Dad and I were in such a hurry that morning I fear we could have let Mom leave the house with one black shoe and one white shoe.
I know technically it does not really matter if someone is wearing two different shoes, but it would have mattered to Mom. Jeff allowed her to leave the house looking her usual pretty and put together self, and that was a very special gift.
Sometimes it is the little things we do, the ways in which we make sure our loved one maintains the life and dignity they want and deserve, which make the biggest difference.
Blessings,
Rev. Katie
For some reason, this struck me as a such a special and compassionate moment. The way Jeff asked Mom about her shoes was so kind. He did not point out that she had two different shoes on or make a big deal about anything, he just offered to help her. I also think it is sweet that he even noticed her shoes because Dad and I were in such a hurry that morning I fear we could have let Mom leave the house with one black shoe and one white shoe.
I know technically it does not really matter if someone is wearing two different shoes, but it would have mattered to Mom. Jeff allowed her to leave the house looking her usual pretty and put together self, and that was a very special gift.
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| Mom, Jeffrey, & Jeff making cookies together. |
Sometimes it is the little things we do, the ways in which we make sure our loved one maintains the life and dignity they want and deserve, which make the biggest difference.
Blessings,
Rev. Katie
Monday, September 19, 2011
Matching Grant Doubles Your Donations!
A generous donor has offered to match, dollar for dollar up to $5,000, donations to the Carolyn L. Farrell Foundation for Brain Health!
Now is the time when your donations can be doubled so please DONATE HERE to the foundation or REGISTER HERE for the Ride to Imagine.
Here is an update on the happenings of the foundation:
Our TimeSlips program for people with dementia is going well. People are inquiring about the possibility for a TimeSlips program on the East Side of Cleveland, which we would be happy to arrange, but we need the funds to do so and a few volunteers who would like to be trained as facilitators.
We are also in the process of researching possible ArtCare programs for people with mental illness. Again, we need to find the resources to carry out such a program.
The Ride to Imagine planning is underway and it looks like it will be a great event. While you can just show up the day of the event, October 8, the more early registrations we have the better we can plan for the amount of food, volunteers, and t-shirts we need. Please register for the bike tour or garden walk today.
Thank you for your support and for meeting the challenge our donor has set before us. Let's see how fast we can raise that $5,000 which will instantly turn into $10,000!
Blessings,
Rev. Katie
Now is the time when your donations can be doubled so please DONATE HERE to the foundation or REGISTER HERE for the Ride to Imagine.
Here is an update on the happenings of the foundation:
Our TimeSlips program for people with dementia is going well. People are inquiring about the possibility for a TimeSlips program on the East Side of Cleveland, which we would be happy to arrange, but we need the funds to do so and a few volunteers who would like to be trained as facilitators.
We are also in the process of researching possible ArtCare programs for people with mental illness. Again, we need to find the resources to carry out such a program.
The Ride to Imagine planning is underway and it looks like it will be a great event. While you can just show up the day of the event, October 8, the more early registrations we have the better we can plan for the amount of food, volunteers, and t-shirts we need. Please register for the bike tour or garden walk today.
Thank you for your support and for meeting the challenge our donor has set before us. Let's see how fast we can raise that $5,000 which will instantly turn into $10,000!
Blessings,
Rev. Katie
Saturday, September 17, 2011
Already Dead?!
I could not believe this article: Pat Robertson says Alzheimer's makes divorce OK.
I have never been in the situation of having a partner with Alzheimer's so I cannot comment on the acceptability of divorce or even having another companion while your spouse is still alive. As a minister, if someone wanted to speak with me about that, there would be a lot of pastoral care and discernment which I hope would help them make their own intentional and loving choice.
So, my main problem with Robertson's view is not his statement that divorce is ok, because one cannot make such a generalized statement. My bigger issue is Robertson's justification for why you can divorce your spouse with Alzheimer's. I believe his justification is outrageous, disgusting, and just promotes stigma of this disease.
The article says:
"Terry Meeuwsen, Robertson's co-host, asked him about couples' marriage vows to take care of each other "for better or for worse" and "in sickness and in health."
"If you respect that vow, you say 'til death do us part,'" Robertson said during the Tuesday broadcast. "This is a kind of death.'"
The idea that Alzheimer's is a death is ridiculous. It is a change, a deterioration, an illness, a long goodbye, but not a death. The person is still here and worthy of our love and care. Just because they are not exactly the same person we married, does not mean they are dead. Heck, I am not the same person my husband married eleven years ago.
As I sat at dinner with my Mom today, I kept thinking, "How could I tell her she is already dead?" That her life is gone, she has lost everything? Even people in the last stages of dementia who outwardly do not remember anything, who may not even know who they are anymore, are not gone. We have no idea how much is going on internally.
However, we do know that people have lucid moments. Moment's of recognition of a loved one. Moments where they sing a song from childhood, or recite a well loved prayer. Moments when they smile at you as you sit and talk to them. Clearly they are not dead.
Seeing Alzheimer's as a death only increases the fear around the disease. It takes away their humanity and allows us to distance ourselves from the pain of our own loss. It allows us not to care anymore. It allows partners to easily get a divorce, children to never visit their ill parent, friends to walk away, and communities to push people off into a corner.
All of us change over time, people get all different kinds of illnesses, we do make decisions on how our relationships will be going forward. The right way to make that decision though is not to let fear make excuses for us, we need to make a loving and responsible choice.
We may have to put a parent into a nursing home to keep them safe. There are illnesses or situations where parents have to let their children live somewhere else because that is what is healthiest. These are difficult decisions, not to be taken lightly. I believe Pat Robertson is seeking to create an easy way out for people instead of asking them to really face all of what such a decision would mean mentally, emotionally, and spiritually for all involved.
Blessings,
Rev. Katie
I have never been in the situation of having a partner with Alzheimer's so I cannot comment on the acceptability of divorce or even having another companion while your spouse is still alive. As a minister, if someone wanted to speak with me about that, there would be a lot of pastoral care and discernment which I hope would help them make their own intentional and loving choice.
So, my main problem with Robertson's view is not his statement that divorce is ok, because one cannot make such a generalized statement. My bigger issue is Robertson's justification for why you can divorce your spouse with Alzheimer's. I believe his justification is outrageous, disgusting, and just promotes stigma of this disease.
The article says:
"Terry Meeuwsen, Robertson's co-host, asked him about couples' marriage vows to take care of each other "for better or for worse" and "in sickness and in health."
"If you respect that vow, you say 'til death do us part,'" Robertson said during the Tuesday broadcast. "This is a kind of death.'"
The idea that Alzheimer's is a death is ridiculous. It is a change, a deterioration, an illness, a long goodbye, but not a death. The person is still here and worthy of our love and care. Just because they are not exactly the same person we married, does not mean they are dead. Heck, I am not the same person my husband married eleven years ago.
As I sat at dinner with my Mom today, I kept thinking, "How could I tell her she is already dead?" That her life is gone, she has lost everything? Even people in the last stages of dementia who outwardly do not remember anything, who may not even know who they are anymore, are not gone. We have no idea how much is going on internally.
However, we do know that people have lucid moments. Moment's of recognition of a loved one. Moments where they sing a song from childhood, or recite a well loved prayer. Moments when they smile at you as you sit and talk to them. Clearly they are not dead.
Seeing Alzheimer's as a death only increases the fear around the disease. It takes away their humanity and allows us to distance ourselves from the pain of our own loss. It allows us not to care anymore. It allows partners to easily get a divorce, children to never visit their ill parent, friends to walk away, and communities to push people off into a corner.
All of us change over time, people get all different kinds of illnesses, we do make decisions on how our relationships will be going forward. The right way to make that decision though is not to let fear make excuses for us, we need to make a loving and responsible choice.
We may have to put a parent into a nursing home to keep them safe. There are illnesses or situations where parents have to let their children live somewhere else because that is what is healthiest. These are difficult decisions, not to be taken lightly. I believe Pat Robertson is seeking to create an easy way out for people instead of asking them to really face all of what such a decision would mean mentally, emotionally, and spiritually for all involved.
Blessings,
Rev. Katie
Friday, September 16, 2011
Being Present
Thanks to friends, I found this video from Kate Whouley who has written a book about her mother and dementia called Remembering the Music, Forgetting the Words: Travels With Mom in the Land of Dementia. I have not read the book, but I am getting it right away.
In this video, Whouley explains how living in the moment is extremely important for caring for and being with someone with dementia.
My Dad and I have talked about this frequently. He does a lot of study and practice of Zen Buddhism and he has brought amazing insight into caring for Mom in a way I think most people are unable to do. This is because he understands the present moment is what matters. Not what Mom used to be able to do, not that she may forget this moment in the next moment, not what we need to do tomorrow, but what we are doing right now matters.
Being present is not always easy. Especially when you need to get to a meeting or work and Mom is upset you are leaving when you have told her many times where you are going but she keeps forgetting. How do you figure out how to live in the moment with her when you need to be somewhere else? However, when you are in the moment and see her enjoy something, her smile makes you remember that being present is key to helping her have a wonderful life.
Once I ready Whouley's book, I will post a review, but this and the other video of her's are wonderful.
Blessings,
Rev. Katie
In this video, Whouley explains how living in the moment is extremely important for caring for and being with someone with dementia.
My Dad and I have talked about this frequently. He does a lot of study and practice of Zen Buddhism and he has brought amazing insight into caring for Mom in a way I think most people are unable to do. This is because he understands the present moment is what matters. Not what Mom used to be able to do, not that she may forget this moment in the next moment, not what we need to do tomorrow, but what we are doing right now matters.
Being present is not always easy. Especially when you need to get to a meeting or work and Mom is upset you are leaving when you have told her many times where you are going but she keeps forgetting. How do you figure out how to live in the moment with her when you need to be somewhere else? However, when you are in the moment and see her enjoy something, her smile makes you remember that being present is key to helping her have a wonderful life.
Once I ready Whouley's book, I will post a review, but this and the other video of her's are wonderful.
Blessings,
Rev. Katie
Wednesday, August 24, 2011
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
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
Monday, August 22, 2011
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
Sunday, August 21, 2011
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
Saturday, August 13, 2011
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"
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"
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
"Boy and Perfume"
 |
| Photo from the TimeSlips curriculum |
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 |
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
Friday, August 5, 2011
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"
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
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
Thursday, August 4, 2011
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
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
Tuesday, August 2, 2011
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
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
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.
Blessings,
Rev. Katie
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.
Blessings,
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.
Blessings,
Rev. Katie
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.
Blessings,
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.
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!
Blessings,
Rev. Katie
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!
Blessings,
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.
Blessings,
Rev. Katie
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.
Blessings,
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.
Blessings,
Rev. Katie
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.
Blessings,
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.
Blessings,
Rev. Katie
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.
Blessings,
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 katie@movinginwithdementia.com
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
Blessings,
Rev. Katie
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 katie@movinginwithdementia.com
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
Blessings,
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
Blessings,
Rev. Katie
Love and Determination in the Face of Alzheimer's by Connie Schultz
Blessings,
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.
Blessings,
Rev. Katie
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.
Blessings,
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 katie@movinginwithdemetia.com 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!
Blessings,
Rev. Katie
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 katie@movinginwithdemetia.com 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!
Blessings,
Rev. Katie
Sunday, June 26, 2011
See My Humanity, Not Just My Illness
I was talking with a few ministers about social media, such as Facebook, at General Assembly (GA) 2011 yesterday. One minister said they did not want a church Facebook page where people can post to it because "there are a lot of people in our area with bipolar and I don't want them posting things that will cause problems."
This is not the first time I have heard a comment like this in professional and social settings. In fact, I hear such comments about people with bipolar disorder at least once every few months. They show the enormous stigma against mental illness, particularly bipolar.
I spent all week at GA listening to the stories of our last 50 years since the Unitarians and Universalists joined together so that this faith could be a source of justice in this world. How we were heavily involved in the Civil Rights movement; we protested this week to show support for the gay, lesbian, bisexual and transgendered community; and we have inclusivity ministries. We stand on the side of love and want no one to be discriminated against based on belief, age, race, ability, social class, or sexual orientation. And yet when I mention that this stigma against people with mental illness is unkind and not in line with our faith, many people think I am crazy (and in their minds, technically, I am).
I have sat through chaplaincy trainings focused on how the brain of a bipolar person is unstable and therefor they can not be trusted to be telling the truth or be able to make decisions. I have had people tell me not to let anyone know of my illness because it will affect my career.
I know there are many injustices in our world, and I am just speaking about this one today. What I have found in my experience though is that this injustice is one we do not talk about. Many people do not want to advocate for people with mental illness because they think it will reflect badly on them. No one wants to be associated with "craziness."
Because of this stigma, people with mental illness often don't ask for help, their families are secluded and hurting, their children have no one to talk to, and their illness often progresses.
I never know what to say when people make these judgmental comments about those with mental illness. How do I respectfully tell them how hurtful and degrading it is to know they assume people like me are irresponsible, a risk to society, and not able to contribute to this world just because we have an illness? How do I tell a fellow colleague that Unitarian Universalism is a healing faith for people with mental illness and judgements like this decrease the ministry they can do?
What I wish is that people actually sat down and listened to the stories of people with mental illness instead of just focusing on the symptoms. True, this is a devastating illness that hurts not only the person with bipolar, but also people around them. However, I am able to have a meaningful life because my husband and my home Unitarian Universalist church happened to be people who saw my humanity and said they would help me. They held me accountable and showed they believed in me. They never let me give up on myself and they keep an eye on how I am doing to help me tweak my treatment as necessary.
I feel mental illness is a physical and spiritual illness. The stigma from society, and the internal doubt and questioning this illness brings to a person means they need not only medical support, but spiritual as well in order to manage their illness.
No matter what faith we are, religious or not, we can help end this stigma and allow people with mental illness to be productive members of society when we actually see them as human beings.
Blessings,
Rev. Katie
This is not the first time I have heard a comment like this in professional and social settings. In fact, I hear such comments about people with bipolar disorder at least once every few months. They show the enormous stigma against mental illness, particularly bipolar.
I spent all week at GA listening to the stories of our last 50 years since the Unitarians and Universalists joined together so that this faith could be a source of justice in this world. How we were heavily involved in the Civil Rights movement; we protested this week to show support for the gay, lesbian, bisexual and transgendered community; and we have inclusivity ministries. We stand on the side of love and want no one to be discriminated against based on belief, age, race, ability, social class, or sexual orientation. And yet when I mention that this stigma against people with mental illness is unkind and not in line with our faith, many people think I am crazy (and in their minds, technically, I am).
I have sat through chaplaincy trainings focused on how the brain of a bipolar person is unstable and therefor they can not be trusted to be telling the truth or be able to make decisions. I have had people tell me not to let anyone know of my illness because it will affect my career.
I know there are many injustices in our world, and I am just speaking about this one today. What I have found in my experience though is that this injustice is one we do not talk about. Many people do not want to advocate for people with mental illness because they think it will reflect badly on them. No one wants to be associated with "craziness."
Because of this stigma, people with mental illness often don't ask for help, their families are secluded and hurting, their children have no one to talk to, and their illness often progresses.
I never know what to say when people make these judgmental comments about those with mental illness. How do I respectfully tell them how hurtful and degrading it is to know they assume people like me are irresponsible, a risk to society, and not able to contribute to this world just because we have an illness? How do I tell a fellow colleague that Unitarian Universalism is a healing faith for people with mental illness and judgements like this decrease the ministry they can do?
What I wish is that people actually sat down and listened to the stories of people with mental illness instead of just focusing on the symptoms. True, this is a devastating illness that hurts not only the person with bipolar, but also people around them. However, I am able to have a meaningful life because my husband and my home Unitarian Universalist church happened to be people who saw my humanity and said they would help me. They held me accountable and showed they believed in me. They never let me give up on myself and they keep an eye on how I am doing to help me tweak my treatment as necessary.
I feel mental illness is a physical and spiritual illness. The stigma from society, and the internal doubt and questioning this illness brings to a person means they need not only medical support, but spiritual as well in order to manage their illness.
No matter what faith we are, religious or not, we can help end this stigma and allow people with mental illness to be productive members of society when we actually see them as human beings.
Blessings,
Rev. Katie
Friday, June 24, 2011
Lessons Learned from Friends
Sometimes I wonder if my family and I would have moved in with Mom and Dad to help out had we not met some wonderful friends during seminary.
During my seminary time at Meadville Lombard Theological School, our many friends graciously helped us take care of our son. In our first few days there, we accidentally parked in a tow zone, as we were not used to street parking, and our car was towed. Our new neighbors Michael & Cara took Jeffrey in, gave him dinner and got him to bed on time while we drove all over trying to find the tow lot and get our car back.
I had never experienced community like that before. Voluntary care for other people.
This week, we are in North Carolina for the Unitarian Universalist Association General Assembly (GA) 2011. It is the annual week long conference for our denomination. Jeff and I are both involved in church life, so for us to be able to attend GA, we need someone to care for our son because he can't stay back home with anyone.
Our friends, Rev. David Pyle and his wife Sandy, lived in the apartment above ours in seminary. Since that time, they have always helped us through their friendship, advice, and care for Jeffrey. At GA Sandy spends all week with Jeffrey while Jeff and I attend GA, often from 9am to 12am each day.
Sandy helps us in this way out of the pure love of her heart. She knows what community means and that we can't raise our son on our own; sometimes we all need help. Jeffrey loves his time with Sandy, "because she is just fun," he says. They read books, play games, swim, and make things out of Duct Tape like a race car and track.
I do not think there are words to express what her care for Jeffrey means to us. It is hard to describe how transformative it is to have another person, of their own choice, help you so you can follow your call in life. So you can be happy and whole.
It is that example, of true community, which led Jeff and I to live with Mom and Dad. We could have just moved close by, but we saw how such an extreme act of caregiving can change lives for the better. People can choose to help one another in radical ways.
Jeffrey feels respected and loved when Sandy takes care of him because she does it voluntarily. It is a big deal for a child to have an adult who just likes to spend time with them, seeing their inherent worth and dignity. Too often, adults care for kids out of a sense of requirement.
One could say my family and I are living with my parents out of a sense of requirement, as often happens with children and parents. But that is not so. We chose this because we love them, and also because we learned that taking care of others spreads joy and is a great way to spend your life. We wanted to continue the gift that has been so graciously given to us by our friends.
Our American society often does not encourage us to help one another. People continually ask why my husband, who is "just an in-law" would help my parents.
Our friends have shown us that family is what you make it, it is not weird to help others, and it is not a sign of weakness to need help.
Thank you to all our friends who showed us a different way of life.
May we all find friends and family who care for us, and may we pass that gift of caring on to others.
Blessings,
Rev. Katie
During my seminary time at Meadville Lombard Theological School, our many friends graciously helped us take care of our son. In our first few days there, we accidentally parked in a tow zone, as we were not used to street parking, and our car was towed. Our new neighbors Michael & Cara took Jeffrey in, gave him dinner and got him to bed on time while we drove all over trying to find the tow lot and get our car back.
I had never experienced community like that before. Voluntary care for other people.
This week, we are in North Carolina for the Unitarian Universalist Association General Assembly (GA) 2011. It is the annual week long conference for our denomination. Jeff and I are both involved in church life, so for us to be able to attend GA, we need someone to care for our son because he can't stay back home with anyone.
Our friends, Rev. David Pyle and his wife Sandy, lived in the apartment above ours in seminary. Since that time, they have always helped us through their friendship, advice, and care for Jeffrey. At GA Sandy spends all week with Jeffrey while Jeff and I attend GA, often from 9am to 12am each day.
Sandy helps us in this way out of the pure love of her heart. She knows what community means and that we can't raise our son on our own; sometimes we all need help. Jeffrey loves his time with Sandy, "because she is just fun," he says. They read books, play games, swim, and make things out of Duct Tape like a race car and track.
I do not think there are words to express what her care for Jeffrey means to us. It is hard to describe how transformative it is to have another person, of their own choice, help you so you can follow your call in life. So you can be happy and whole.
It is that example, of true community, which led Jeff and I to live with Mom and Dad. We could have just moved close by, but we saw how such an extreme act of caregiving can change lives for the better. People can choose to help one another in radical ways.
Jeffrey feels respected and loved when Sandy takes care of him because she does it voluntarily. It is a big deal for a child to have an adult who just likes to spend time with them, seeing their inherent worth and dignity. Too often, adults care for kids out of a sense of requirement.
One could say my family and I are living with my parents out of a sense of requirement, as often happens with children and parents. But that is not so. We chose this because we love them, and also because we learned that taking care of others spreads joy and is a great way to spend your life. We wanted to continue the gift that has been so graciously given to us by our friends.
Our American society often does not encourage us to help one another. People continually ask why my husband, who is "just an in-law" would help my parents.
Our friends have shown us that family is what you make it, it is not weird to help others, and it is not a sign of weakness to need help.
Thank you to all our friends who showed us a different way of life.
May we all find friends and family who care for us, and may we pass that gift of caring on to others.
Blessings,
Rev. Katie
Monday, June 20, 2011
Tribute to Two Fathers
Charlie (my dad)
My dad is one of the most interesting and inspiring people I know. He has changed so much over the years that I almost grew up with two different fathers. When I was little, our nickname for him was "Grumpy" after the dwarf in Snow White. He was conservative and strict. I always saw him like a big teddy bear though, with a softness in the middle of his rough exterior.
Over the years, many tough life circumstances have changed him. Well, not so much changed him, but have let that soft interior be what he shows to the world now.
If anything, Dad has taught me to change with the tide. Nothing is permanent, and we can adapt to what is happening, if we can let go of trying to control and fix everything.
He also taught me to love and care for my family, and that he loves my Mom more than anything. He always attributes his success in life to my Mom who is brilliant, intelligent, and supported him.
I attribute his success also to his ability to change his opinion as he learns more about the world, and his deep spiritual grounding in a belief that change is part of life, and life is good.
I look up to Dad, so it is no surprise that I married someone so much like my father that they even have the same birthday.
Jeff (my husband)
Jeff is an amazing father, always there for our son and he has an immense amount of patience. He never withholds emotion from Jeffrey so he always knows he is loved. He respects Jeffrey and wants him to be none other then himself.
Jeff loves life and easily adapts to change. He is the smartest person I know and always loves to share his knowledge with others so they can succeed.
Charlie & Jeff
Jeff is the same way. He too gives our son the gift of loving me, no matter what. It is no easy, fun, or pleasant thing to take care of a wife with bipolar disorder, but he has worked for many years to be more understanding and caring.
Jeff and Dad are the main caregivers in our home, and are the best role models for my son Jeffrey. Every day Jeffrey sees two strong, caring, loving men take care of their families with joy, yet also stay true to who they are as individuals. That is a difficult balancing act.
Thank you Dad and Jeff for being the best role model and friend I have as a daughter and wife, and our son has as a son and grandson.
Tuesday, June 7, 2011
How Many People Does It Take?
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| My sister, Dad, Mom, Jeff and me |
For just three days this weekend, in order for all of us to be able to do the things we need to do (work, attend church functions, celebrate an anniversary, take a class on dementia, and do a bike tour) we need six adults and one child. True, this is a far busier weekend than most, but now that Mom can not stay at home alone anymore, it is very hard to work out our schedules.
My sister has given us the wonderful gift of spending time with Mom three days in a row while Dad goes out of town to learn about how to better communicate with people with dementia, Jeff and I celebrate our 11th anniversary and attend a few church events, and Jeff, Dad, Jeffrey and I to go on a bike tour we have been looking forward to for months. My sister is so amazing!
Two of my son’s friends are having him over for a playdate while I attend a work meeting one day and Jeff and I go to a musical for our anniversary.
I didn’t realize how hard this was going to be, not being able to leave Mom home alone. We can not run up to the store anymore, or leave my son and Mom home together for a bit to attend a short meeting. Today I was home, but upstairs working, and ten minutes after the boys left on an errand, Mom was opening up the doors to the house looking for them. Even having me in a different room was too confusing for her.
They say it takes a village to raise a child, but it takes a village to take care of us all.
Thank you to everyone in my village!
Blessings,
Rev. Katie
Monday, June 6, 2011
Never Enough Time
For the past year I have been planning to record the story of Mom’s life. I want to take out old photos and have her tell me the stories behind them. I want to know what some of her favorite memories are; favorite (or not so favorite) vacations. I fear I have waited too long.
In the past few weeks, maybe month, it seems that Mom’s dementia is progressing very quickly. Often I can’t understand what she is saying and she starts thoughts only to stop in the middle of them and stare out the window. When I ask her to continue what she was saying, she does not remember that she was talking. She is remembering less and less every day.
The other day I asked her what her favorite vacation with her brothers was. She said she remembers having fun, but does not remember the specific vacations. If I ask her about Germany specifically, she says she liked it. I asked her about vacations with the kids and she can only recall those memories if I remind her of the story such as “What about the time that donkey scared one of the boys?” Then she can tell me a bit about that memory.
I have always grown up with the sense that there is never enough time. We have had many illnesses in my family and because of that I have always had a fear of losing my loved ones. I used to call my Mom from school if I thought I had forgotten to say “I love you” to her when I left in the morning, just to make sure that was the last thing I said to her in case something bad happened and that was the last time I saw her. For some reason though, this quick deterioration snuck up on me.
Whether or not you have a loved one with dementia, try to record some of the stories of your loved ones lives, and your own life. These are the things that people will hold on to and they help create a sense of identity and belonging to the younger generation.
Four years ago I could not find a book to read to my son at bedtime, so I told him a story from my husbands childhood instead. Ever since then, our son has asked us “Tell me a story about when you were little.” This is so important to him. He looks for the similarities in these stories between us and him. He likes to comment “I must have gotten that from you.” For instance, we were just talking about the amusement park Cedar Point which he and his dad have already gone to twice this season. My Mom loves roller coasters as well and she was talking to him about some of the rides at Cedar Point. He knows he gets his love of coasters from his grandma and his father.
Time goes by too fast, so record what you can, spend time with those you love. I worry that one day I will wake up and Mom won’t know who I am. I can’t wait any longer to record all the things her grandchildren will want to know about her.
Blessings,
Rev. Katie
In the past few weeks, maybe month, it seems that Mom’s dementia is progressing very quickly. Often I can’t understand what she is saying and she starts thoughts only to stop in the middle of them and stare out the window. When I ask her to continue what she was saying, she does not remember that she was talking. She is remembering less and less every day.
The other day I asked her what her favorite vacation with her brothers was. She said she remembers having fun, but does not remember the specific vacations. If I ask her about Germany specifically, she says she liked it. I asked her about vacations with the kids and she can only recall those memories if I remind her of the story such as “What about the time that donkey scared one of the boys?” Then she can tell me a bit about that memory.
Whether or not you have a loved one with dementia, try to record some of the stories of your loved ones lives, and your own life. These are the things that people will hold on to and they help create a sense of identity and belonging to the younger generation.
Four years ago I could not find a book to read to my son at bedtime, so I told him a story from my husbands childhood instead. Ever since then, our son has asked us “Tell me a story about when you were little.” This is so important to him. He looks for the similarities in these stories between us and him. He likes to comment “I must have gotten that from you.” For instance, we were just talking about the amusement park Cedar Point which he and his dad have already gone to twice this season. My Mom loves roller coasters as well and she was talking to him about some of the rides at Cedar Point. He knows he gets his love of coasters from his grandma and his father.
Time goes by too fast, so record what you can, spend time with those you love. I worry that one day I will wake up and Mom won’t know who I am. I can’t wait any longer to record all the things her grandchildren will want to know about her.
Blessings,
Rev. Katie
Wednesday, June 1, 2011
Coming Together for Alzheimer’s: Fat Little 5K
I always find it so inspiring when I hear about what someone is doing to try and help people living with Alzheimer’s Disease. Often these ideas come about over casual conversation with friends and family, and The Fat Little 5K is just such an idea.
Last year, Fat Little Buddies Tavern owner Joe O’Malley happened to be talking to a friend, Maureen Loesch. Joe’s father has Alzheimer’s and so does Maureen’s mother-in-law. They wanted to do something to help their loved ones and since Maureen is an avid runner, they came up with the idea for the bar to host a 5K race and donate the proceeds to the Alzheimer’s Association.
The first year of any race can be a bit stressful. You are never sure how many people will come to the race and how the logistics of actual race will work out-from advertising, registration, to post race goodie bags and events. However, last years first annual Fat Little 5K brought 250 runners and raised about $6,000!
What I love about this race is that it is truly community friendly, which you do not always find at events like this. Runners, young children, older adults, and people with dementia can all participate in some way. There is a 1 mile walk, a 5K run, tons of kids games (such as a bounce houses), food, and indoor seating in the bar where you can watch the after race events. Everyone is welcome at the race. This means we can create a truly inclusive community. Those who like to run for a good cause, caregivers, family, friends, and people with dementia.
Events like these show Mom and others with dementia and Alzheimer’s that the larger community does care about them. Not everyone who runs this race will know someone with dementia, but their participation is so valuable because it shows they care about the millions of people in our country who are affected by the disease, and they want to help.
This year, Joe hopes to get at least 700 people registered for the race. Our family will be there and we hope to see you there too!
Here is a link to the registration: Fat Little 5K Registration. Register online or show up and register on race day!
Here is a link to the registration: Fat Little 5K Registration. Register online or show up and register on race day!
If you can’t come or don’t live in the Cleveland area, you can make a donation here: Fat Little 5K Donation Page.
Blessings,
Saturday, May 21, 2011
A Powerful Video
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| from the Alzheimer's Association |
Alzheimer's Facts and Figures video, by the Alzheimer's Association.
Blessings,
Rev. Katie
Thursday, May 19, 2011
Looking For Help
When I look at the “Stats” for my blog, one of the statistics they give me is the keywords people have used which brought them to my website. I look at these keywords almost every day and it makes is clear to me that so many of us are looking for help.
You may be like me, up during the wee hours of the night, searching the web for answers. For help to understand whatever new things have popped up in your world of living with dementia.
I wanted to share some of those keywords with you, as a reminder that while dementia is different for every person and family, we still have so much in common. We are all looking for answers to things we might not always talk about during the day at work, at school, or at home, but we search for in the anonymity of the internet.
Maybe it is helpful for all of us to know we are not alone:
“refuses to read books or exercise dementia”
“what if a dementia person is in denial?”
“combination of dementia and Parkinsons”
“dementia getting worse”
“dementia patients don't know what day it is”
“dementia the long goodbye”
“Alzheimer’s grief”
“dementia activities”
“Lewy Body prognosis”
You may be like me, up during the wee hours of the night, searching the web for answers. For help to understand whatever new things have popped up in your world of living with dementia.
I wanted to share some of those keywords with you, as a reminder that while dementia is different for every person and family, we still have so much in common. We are all looking for answers to things we might not always talk about during the day at work, at school, or at home, but we search for in the anonymity of the internet.
Maybe it is helpful for all of us to know we are not alone:
“refuses to read books or exercise dementia”
“what if a dementia person is in denial?”
“combination of dementia and Parkinsons”
“dementia getting worse”
“dementia patients don't know what day it is”
“dementia the long goodbye”
“Alzheimer’s grief”
“dementia activities”
“Lewy Body prognosis”
"Dad care for Mom"
“Alzheimer’s dementia abandonment family”
“Alzheimer’s dementia abandonment family”
The most frequently used search terms that bring you here, besides the title of the blog, are:
“bradykinesia or slowness of”
“for mom she noticed”
“dementia calendar”
“dementia quote”
I hope we continue to build community and find ways to be there for each other in our search for help.
Blessings,
Rev. Katie
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