I have noticed that as Mom's dementia has progressed and she can communicate less, people tend to ask her "Do you know who I am?" or "What is my name?" I completely understand why they are asking this. We have this need to know that our loved one still knows us. We wait in anticipation for our name as if that means our loved one can recognize us and we still have a relationship with them. We ask this question out of our need. Out of our fear that we will be forgotten and that our loved one has changed forever. As if their memory of us proves that we are still here. I have asked this before too, however I now have come to realize it is a terrible question to ask.
I see in Mom's eyes that she wants to be able to say the person's name and she can't. She gets agitated and upset when she can't respond to you. It is painful for her that her brain does not work the way she wants. Asking her "What is my name?" is extremely degrading and upsetting. We don't mean for it to be that way, but it is because we are making it abundantly clear to them that something is wrong with them rather than celebrating what is still wonderful about them.
In the work that we do with the Carolyn L. Farrell Foundation for Brain Health, we focus our programs for people with dementia on creativity and imagination rather than memory. This is because it is SO frustrating and devastating for people with mid to late-stage dementia when people ask them to use their memory. It is a reminder to them of all they have lost and it makes them think they can not contribute to the world because they do not have the precious knowledge we are asking them to produce.
Too often I see in nursing homes and adult day cares activities based on memory. A caregiver stands at the front of the room and asks questions about "the old days," as if this will comfort people. "Who was a famous baseball player in the 1930's?" the caregiver calls out. Most people sit and stare at the wall or fall asleep. "What were your favorite kind of shoes to wear when you were a kid?" Silence, and some people's brows furrow and they get anxious. Does no one realize that they are asking these people things they can not remember? It is like asking a two year old "What is sixteen divided by seven?" This is not something most of them can do and it is aggravating for them and honestly makes them feel bad about themselves.
However, you can do things like tell stories about "the old days" and then usually people talk about the story. You can show pictures of events, like Christmas and all of the sudden someone will say "I used to love Christmas. We ate cookies." They feel happy and know they can contribute to the world. They are not being tested or judged on the basis of what they remember.
Mom has not called me by my name in at least six months. She does call me "honey" when she sees me. She still remembers my son's name sometimes or asks me "Where is the little one?" Just because the exact name does not come out or just because someone does not recall any baseball players from the 1930's, that does not mean we have lost our loved one. Even when they can not speak and seem to stare off at the wall all day, certain things will still bring light to their eyes. Play some of their favorite music, tell favorite family stories. If they can still use their hands, create art with them.
Tapping into creativity and imagination reaches deep into their soul, touches their spirit, and does not ask of them to use the memory they have lost. It does not remind them of their illness but celebrates their abilities.
Blessings,
Rev. Katie
Wednesday, February 20, 2013
Sunday, February 10, 2013
Mom's German Chocolate Cake
The cake most of us in the family requested from Mom for our birthdays was a German Chocolate Cake. Mom has made that cake for all her kids, many grand kids, and on family occasions. She has taken it as a carry-on to bring to one of her children living out of state. I think we have even shipped it out of state. My Dad's birthday is this month so it was only fitting that we made him Mom's German Chocolate Cake. You can't use a boxed mix for this and the recipe has a cooked egg frosting. Many of the techniques of making this cake are not things most of us do anymore because there are so many boxed items or mixes that we use instead. However, I like making this cake because I know the tricks to making it having helped Mom with the cake so many times before. Like how the frosting really takes about 45 minutes to make rather than the 12 minutes the recipe says, and if you cook it on medium as the recipe says, you will get scrambled eggs. Or making sure to line the bottom of the pans with waxed paper because this cake really will stick to the pan even if you grease it, and it falls apart easily. All little things that Mom taught me from the many times we made this cake together over the years.
Every time I make one of Mom's signature recipes, I am proud and sad. It always reminds me of the end of an era, expect that it is not quite the end because Mom is still here. When I went to get the recipe out of my recipe box, it was hard for me. Almost all of the recipes in the box are handwritten by Mom, given to me at my wedding shower 13 years ago. Mom has not been able to write for a long time now and I have not seen the smooth, beautiful curves of her cursive in years. When I read her letter to me on the inside of the box and the instructions for the recipes, I realize that I have not heard her say a full sentence in at least eight months. She has not been able to make any recipes for over a year. It is hard for me to know what she used to be like, and I feel like that is not my mother anymore. Not that she is not longer Mom, but that I barely remember what she used to be like. Which is strange, because she only started her journey with really visible dementia about six years ago. I feel bad that I do not really remember her as she was before.
As I saw my beautiful niece feed Mom small bites of the cake, I thought of how my son and my younger nieces and nephew may not really remember Mom as she was before. In fact, some of them have never tasted Mom's famous cake made by her hands. While they love her and like helping care for her, I still feel sad that they did not also get to experience her as cooking up a storm, knitting, laughing, and helping take care of them when they were sick.
I loved making the cake for Dad because I could make sure a bit of Mom as she was before was still there even while we enjoy having Mom there as she is now. It was kind of a way to bridge the two times in her life together for both Mom and Dad.
It is a hard transition, loosing someone in this way and seeing at special times in our lives how one day they may not be there at all. It is all the little things, like a cake, that make you realize how things have changed and how different they will be in the future. It is a weird combination of sadness from what you have lost, but also happiness to still have them in your life, and joy that you can carry on some of the things that are special to them which they can no longer do.
Blessings,
Rev. Katie
 |
| Click to read Mom's note. Photo by Jeff Norris |
Every time I make one of Mom's signature recipes, I am proud and sad. It always reminds me of the end of an era, expect that it is not quite the end because Mom is still here. When I went to get the recipe out of my recipe box, it was hard for me. Almost all of the recipes in the box are handwritten by Mom, given to me at my wedding shower 13 years ago. Mom has not been able to write for a long time now and I have not seen the smooth, beautiful curves of her cursive in years. When I read her letter to me on the inside of the box and the instructions for the recipes, I realize that I have not heard her say a full sentence in at least eight months. She has not been able to make any recipes for over a year. It is hard for me to know what she used to be like, and I feel like that is not my mother anymore. Not that she is not longer Mom, but that I barely remember what she used to be like. Which is strange, because she only started her journey with really visible dementia about six years ago. I feel bad that I do not really remember her as she was before.
As I saw my beautiful niece feed Mom small bites of the cake, I thought of how my son and my younger nieces and nephew may not really remember Mom as she was before. In fact, some of them have never tasted Mom's famous cake made by her hands. While they love her and like helping care for her, I still feel sad that they did not also get to experience her as cooking up a storm, knitting, laughing, and helping take care of them when they were sick.
I loved making the cake for Dad because I could make sure a bit of Mom as she was before was still there even while we enjoy having Mom there as she is now. It was kind of a way to bridge the two times in her life together for both Mom and Dad.
 |
| Me and Dad with Mom's cake |
It is a hard transition, loosing someone in this way and seeing at special times in our lives how one day they may not be there at all. It is all the little things, like a cake, that make you realize how things have changed and how different they will be in the future. It is a weird combination of sadness from what you have lost, but also happiness to still have them in your life, and joy that you can carry on some of the things that are special to them which they can no longer do.
Blessings,
Rev. Katie
Wednesday, January 2, 2013
The Dreaded UTI
Urinary Tract Infections (UTI's) are common in older people, regardless of gender, especially when they become incontinent and rely on the use of an adult diaper. However, many people with dementia or other illnesses are also to the point that they can not tell you if they have pain anywhere, and so you have no idea that an infection is present. In fact, you can have a UTI without pain. But when an elderly person has a sudden change in cognitive function and actions, always check for a UTI.
Mom had a good Christmas Eve but then on Christmas Day she would not eat, not open her eyes, and she had labored breathing. We could not really get her to respond to us anymore and she also lost her limited amount of speech. After a few days, the hospice nurse had Mom checked for a UTI, which came back positive, and we put her on antibiotics. It has taken many days but Mom has regained some of her self back in the last day. When we visited yesterday her eyes were open, she would say a few words to us, and even laugh at what we were talking about. Her appetite has not really changed much, but at least she was much more bright and cheerful.
When you work in a nursing home or in hospice, you are told to always check for a UTI when sudden changes occur but for those of us taking care of loved ones in our own at home, no one may have told us that. I would insist on checking for a UTI at any time there is a big change. It does not hurt to check and if you are right then you have treatment options. I will caution that if your loved one takes the course of antibiotics appropriate for their UTI (which means do not only have the initial stick test done, ask to have a culture sent out), and they do not get better, do not insist that they still have a UTI. Sometimes people will see marked improvement in their loved one after a UTI and then the next time they have one and do not get symptomatically better, the family wants more antibiotics even when tests show the infection in clear. As long as the UTI tests are coming back negative, they do not need antibiotics and they may truly just be progressing in their disease. I know this can be hard to accept, but repeated courses of antibiotics are not safe for long periods of time and you could cause even more problems in the long run. Also, denying that the disease has progressed does not give you, your loved one, and the rest of your family and friends the ability to grieve the change and mentally prepare for what is going on.
Blessings,
Rev. Katie
Mom had a good Christmas Eve but then on Christmas Day she would not eat, not open her eyes, and she had labored breathing. We could not really get her to respond to us anymore and she also lost her limited amount of speech. After a few days, the hospice nurse had Mom checked for a UTI, which came back positive, and we put her on antibiotics. It has taken many days but Mom has regained some of her self back in the last day. When we visited yesterday her eyes were open, she would say a few words to us, and even laugh at what we were talking about. Her appetite has not really changed much, but at least she was much more bright and cheerful.
When you work in a nursing home or in hospice, you are told to always check for a UTI when sudden changes occur but for those of us taking care of loved ones in our own at home, no one may have told us that. I would insist on checking for a UTI at any time there is a big change. It does not hurt to check and if you are right then you have treatment options. I will caution that if your loved one takes the course of antibiotics appropriate for their UTI (which means do not only have the initial stick test done, ask to have a culture sent out), and they do not get better, do not insist that they still have a UTI. Sometimes people will see marked improvement in their loved one after a UTI and then the next time they have one and do not get symptomatically better, the family wants more antibiotics even when tests show the infection in clear. As long as the UTI tests are coming back negative, they do not need antibiotics and they may truly just be progressing in their disease. I know this can be hard to accept, but repeated courses of antibiotics are not safe for long periods of time and you could cause even more problems in the long run. Also, denying that the disease has progressed does not give you, your loved one, and the rest of your family and friends the ability to grieve the change and mentally prepare for what is going on.
Blessings,
Rev. Katie
Friday, December 28, 2012
Dementia Safety Issue: Home Alone
There are many safety issues for people with Alzheimer's/dementia such as driving and falls, but by far one of the biggest safety issues is leaving someone with dementia home alone. For some reason most caregivers can understand the need to take away the car keys, put up grab bars and bed rails to prevent falls, but we have a hard time accepting the fact that it is not safe to leave someone with dementia home alone. I think this is due to a few factors, one is that not enough people have the ability to stay home with their loved one or the money to hire caregivers, the other is that our loved one is an adult and we assume they should be able to stay home alone.
Clearly, we need two things, first more resources for people to be able to hire caregivers or find ways to create a community volunteer system of companions for people with dementia. Second we need to accept the fact that even though our loved one is an adult, their mind is reverting back to a child. This does not mean we respect and love them any less, we are just understanding the change in their abilities and we will work to keep them safe.
As soon as you notice your loved one forgetting what they were doing in the house, leaving the stove on, wandering out during the day or night, falling, or being confused in their own house, it is not safe to leave them home alone, even if they are sleeping. This would most likely start in later mid-stage dementia. As dementia progresses, people revert back to a more child-like mind and ability. You will even notice that they may not recognize themselves in the mirror because they only recognize their face from when they were in their 20's. Cognition and memory regress. We do not leave our kids home alone at 3, 5, 8 years old, even if they are asleep. It is not safe. We may not like to admit it, but the same is true for people with dementia who's minds are going back to being similar to that child of 3, 5, or 8.
Leaving someone home alone is not safe because anything can happen. No matter how well we think we know their ability or how safe we think we set up the house, we all know accidents happen. Even someone who is bedridden can get sick while you are gone, decide to try and get out of bed even though they can't and fall, or they could become afraid and panic thrashing and hurting themselves on bed rails. Dementia is unpredictable and while yesterday it may seem like your loved on is fairly safe and won't get too confused, today may be the day they leave the stove on with clothes on top of it, or get hungry and try to cut vegetables with a sharp knife and forget how to use it and cut themselves. Or what if you get in a car accident or get a flat tire and while you thought you were leaving them for an hour, you are now gone for 12 and no one knows your loved one is at home alone? I know all of this sounds scary and you might think "this won't happen to my loved one,"but it does. I was shocked the first time Mom left the stove on because she had not even cooked in months. Or when Mom would get suddenly scared not knowing where the dog is and walk out into the back yard to look for him.
While I wish caregivers were not so expensive to hire, they are, and many people can not afford to hire 24 hour watch for their loved one. However, I have come to realize that if we just ask for the help we need, often we have friends or family members who will help out. I know quite a few people that go over a few hours a week to sit with someone with dementia so that their family member can go to the store. If you find a few people like that then you can have a rotation of people coming in for the week to help out. Or there are even neighbors who will check in on your loved one hourly which is better than just leaving them alone completely all day if you have to work.
Don't be afraid to ask for the help you need, the worst someone can say is that they are unavailable. And if you know someone with dementia and you want to provide help, offer to come over and sit with them. Often families don't ask for such help because we assume it is too much to ask, too much of an imposition, and no one will want to do it. If you offer, you might just be giving that family a wonderful gift they were too afraid to ask for.
Blessings,
Rev. Katie
Clearly, we need two things, first more resources for people to be able to hire caregivers or find ways to create a community volunteer system of companions for people with dementia. Second we need to accept the fact that even though our loved one is an adult, their mind is reverting back to a child. This does not mean we respect and love them any less, we are just understanding the change in their abilities and we will work to keep them safe.
As soon as you notice your loved one forgetting what they were doing in the house, leaving the stove on, wandering out during the day or night, falling, or being confused in their own house, it is not safe to leave them home alone, even if they are sleeping. This would most likely start in later mid-stage dementia. As dementia progresses, people revert back to a more child-like mind and ability. You will even notice that they may not recognize themselves in the mirror because they only recognize their face from when they were in their 20's. Cognition and memory regress. We do not leave our kids home alone at 3, 5, 8 years old, even if they are asleep. It is not safe. We may not like to admit it, but the same is true for people with dementia who's minds are going back to being similar to that child of 3, 5, or 8.
Leaving someone home alone is not safe because anything can happen. No matter how well we think we know their ability or how safe we think we set up the house, we all know accidents happen. Even someone who is bedridden can get sick while you are gone, decide to try and get out of bed even though they can't and fall, or they could become afraid and panic thrashing and hurting themselves on bed rails. Dementia is unpredictable and while yesterday it may seem like your loved on is fairly safe and won't get too confused, today may be the day they leave the stove on with clothes on top of it, or get hungry and try to cut vegetables with a sharp knife and forget how to use it and cut themselves. Or what if you get in a car accident or get a flat tire and while you thought you were leaving them for an hour, you are now gone for 12 and no one knows your loved one is at home alone? I know all of this sounds scary and you might think "this won't happen to my loved one,"but it does. I was shocked the first time Mom left the stove on because she had not even cooked in months. Or when Mom would get suddenly scared not knowing where the dog is and walk out into the back yard to look for him.
While I wish caregivers were not so expensive to hire, they are, and many people can not afford to hire 24 hour watch for their loved one. However, I have come to realize that if we just ask for the help we need, often we have friends or family members who will help out. I know quite a few people that go over a few hours a week to sit with someone with dementia so that their family member can go to the store. If you find a few people like that then you can have a rotation of people coming in for the week to help out. Or there are even neighbors who will check in on your loved one hourly which is better than just leaving them alone completely all day if you have to work.
Don't be afraid to ask for the help you need, the worst someone can say is that they are unavailable. And if you know someone with dementia and you want to provide help, offer to come over and sit with them. Often families don't ask for such help because we assume it is too much to ask, too much of an imposition, and no one will want to do it. If you offer, you might just be giving that family a wonderful gift they were too afraid to ask for.
Blessings,
Rev. Katie
Friday, December 21, 2012
Last Christmas?
.JPG) |
| Darkest Night: West Shore Unitarian Universalist Church |
I don't know if this is technically Mom's last Christmas and now that I think about it, I feel like last year might have really been the "last" one. Last year was the last Christmas she was able to talk to her grandchildren, bake cookies, or open a gift. That was the last Christmas that she spent doing many of the things she always loved to do.
Every Christmas we would make dozens of Christmas cookies, her most famous being sugar cut outs and gingerbread. Then all of the kids and grand kids would gather together on the Saturday before Christmas to decorate the cookies. Last year she was able to help me make at least one of her Christmas cookies but tonight I made the dough for the gingerbread in my house by myself. No mother to make sure I was doing it right and to share the memory of making these cookies together that I have had for my whole life. I am taking the cookies over to Mom and Dad's tomorrow with my husband and son to decorate with Mom like we have always done, but it won't be the same. She can not move her hands and arms to help decorate or even hold a cookie. I know the important thing is really the time we spend together, not exactly what we are doing, but it is still just sad.
 |
| Decorated Christmas Cookies (We love our sugar crystals!) |
It is difficult to have lost your parent but also have them physically here. You know their spirit is still here and you can see it in their eyes at times but you can't have a conversation with them, create things together, or do really anything together that you used to do.
We of course will make this the best Christmas we can for Mom and bring to her things that she loves about the season. Her grandchildren decorated her house and Christmas tree for her. We will make cookies together in the best way we can. We will eat together, let her see her grand kids open gifts, and laugh with her. But I have to admit that in all the joy I feel of her being here and being able to spend time with her, I am still sad.
Blessings,
Rev. Katie
Sunday, November 18, 2012
Playful Activities Bring Joy to Dementia Patients
When my Dad and I talk about the activities we do with people with dementia every week with our foundation, the Carolyn L. Farrell Foundation for Brain Health, many people do not understand that playful activities are important to successful management of dementia.
Our activities are simple, based on Montessori methods, but some people think that this is "too childish." However, it is reality that people with dementia slowly loose cognitive abilities and have a more childlike brain. This may sound sad upon first glance, but really it means they are more free to be imaginative and have fun with playful activities like wooden blocks, stacking materials, and abstract art activities.
If someone likes an activity and it brings them joy, who are we to judge if it is "childish" or not worthwhile?
My husband and I play the same videogames as our son. I love to paint, draw, and create with paper. As a family, we build things with the wooden blocks my Dad helped us make for our son for his first birthday. I think all of these activities are worthwhile because they bring us joy and bring us together as a family.
Here is a great blog post from the Alzheimer's Reading Room about the importance of play for people with dementia: How Important is Play for Alzheimer's Patients in the Late Stages? It is also a fantastic example of how caregivers can advocate for and insist on good care from nursing homes and in-home caregivers.
I encourage us all to be more imaginative, have more fun, and embrace the joy of our childhood spirit.
Blessings,
Rev. Katie
Our activities are simple, based on Montessori methods, but some people think that this is "too childish." However, it is reality that people with dementia slowly loose cognitive abilities and have a more childlike brain. This may sound sad upon first glance, but really it means they are more free to be imaginative and have fun with playful activities like wooden blocks, stacking materials, and abstract art activities.
If someone likes an activity and it brings them joy, who are we to judge if it is "childish" or not worthwhile?
 |
| One year old Jeffrey joyfully playing with his blocks. |
My husband and I play the same videogames as our son. I love to paint, draw, and create with paper. As a family, we build things with the wooden blocks my Dad helped us make for our son for his first birthday. I think all of these activities are worthwhile because they bring us joy and bring us together as a family.
Here is a great blog post from the Alzheimer's Reading Room about the importance of play for people with dementia: How Important is Play for Alzheimer's Patients in the Late Stages? It is also a fantastic example of how caregivers can advocate for and insist on good care from nursing homes and in-home caregivers.
I encourage us all to be more imaginative, have more fun, and embrace the joy of our childhood spirit.
Blessings,
Rev. Katie
Saturday, November 17, 2012
Service Dog Helping with Dementia
About four months ago we adopted a puppy who we are training to be my Psychiatirc Service Dog. While this training can take years, and our puppy Rosie is still just trying to learn how to contain her puppy energy, I find her to be an amazingly intuitive service dog. I have had many dogs over my lifetime but few have been so in tune with the emotional needs of the people around them as Rosie is, and she is just in the first few months of training.
Today we had a family party and we were able to have Mom over to our house. Rosie was in her crate for the beginning of the party and after everyone arrived, I let her out. We had about twenty people in the house and instead of saying "hello" to the people that were in the room she was in, Rosie instead went directly to see my Mom. A person she has only met twice.
Rosie was so attached to my Mom that my Aunt thought Rosie must have lived with my parents before we moved into our new house. She assumed Rosie knew Mom and missed her. Rosie was jumping up on my Mom, trying to get into the Broda chair with her. While this was not the best choice for Rosie because she was too hyper, her instincts were correct.
Rosie somehow knows to "ground" people when they are injured or hurting. This is a deep pressure therapy where the weight of the dog helps to calm the person who is anxious. Rosie's instinct is to lay herself on top of people to help make them feel safe and comforted. "Grounding" will be a Psychiatiric Service Dog task that Rosie will be able to do, gently, on command but right now she does it in her hyper puppy way becasuse she just wants to help other people.
I am continually amazed at the connection that animals have to us. I can't believe how Rosie knew, out of a houseful of twenty people who were in separate rooms, to go straight to the person who needed the most love and care. I felt so proud of Rosie today and her ability to help others. I also felt a great connection with Mom as she and I always cared for our dogs together throughout our lives. Rosie trying to take care of Mom was, for me, kind of another way that Mom and I are still connected despite the fog of dementia that keeps getting thicker and thicker. I am glad my puppy can see through the fog even better than most people can.
Blessings,
Rev. Katie
Today we had a family party and we were able to have Mom over to our house. Rosie was in her crate for the beginning of the party and after everyone arrived, I let her out. We had about twenty people in the house and instead of saying "hello" to the people that were in the room she was in, Rosie instead went directly to see my Mom. A person she has only met twice.
Rosie was so attached to my Mom that my Aunt thought Rosie must have lived with my parents before we moved into our new house. She assumed Rosie knew Mom and missed her. Rosie was jumping up on my Mom, trying to get into the Broda chair with her. While this was not the best choice for Rosie because she was too hyper, her instincts were correct.
Rosie somehow knows to "ground" people when they are injured or hurting. This is a deep pressure therapy where the weight of the dog helps to calm the person who is anxious. Rosie's instinct is to lay herself on top of people to help make them feel safe and comforted. "Grounding" will be a Psychiatiric Service Dog task that Rosie will be able to do, gently, on command but right now she does it in her hyper puppy way becasuse she just wants to help other people.
 |
| Rosie "grounding" me. |
Blessings,
Rev. Katie
Subscribe to:
Posts (Atom)