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
Showing posts with label Alzheimer's. Show all posts
Showing posts with label Alzheimer's. Show all posts
Wednesday, January 2, 2013
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
Saturday, September 8, 2012
The Power of Friendship
About nine years ago, my Mom's friend Sue started a knitting group. Mom and I have been part of the "Cultured Purls" ever since. I even went knitting the night before I was induced and the knitters were probably some of the first people my son ever met. The group has met almost every Thursday night for the past nine years. Three years ago when Mom's dementia made it so she could no longer knit, they still welcomed her in the group anyway. I think she took the same ball of yarn and needles with her every week for at least a year and her loving friend Sue (our knitting leader) always helped her knit a few stitches each night.
Unfortunately in the last year and a half, Sue got sick, Mom got worse, and the knitters met intermittently, but they always took care of each other. The knitters have been meeting at Mom and Dad's house now for a while and this Thursday night we got together for the first time after Sue passed away this Monday.
When Dad told Mom that Sue died, many might think she would not understand, but she did and it made her sad. As we sat around the table talking on Thursday, Mom said to me "feels sad" and I know she knew that while we were reminiscing about Sue and telling fun stories, people were sad at the same time. Even in the midst of this loss, the girls made my Mom laugh and come alive in a way that she is not able to do most of the day. Just look at Mom's face in the photo below, she is smiling and happy as we laugh about some good times in our knitting group. Sue was always looking on the bright side of things and so her spirit was definitely there helping us all have fun together.
This group of women, this group of friends, have been through so much and they take care of each other no matter what is going on. They are some of the few people who can make Mom smile and bring out her personality, which is never lost, just heavily covered in the fog of dementia. They talk to her instead of talk around her and they have never treated her different because of her dementia. Mom feels the emotions in the room and knows her friends love her. Fortunately these friends have allowed Mom to experience joy, happiness, and love on a regular basis.
Never underestimate the power of friendship to beat dementia!
Thank you to the Cultured Purls for being so amazing and may we continue to carry on Sue's legacy of knitting, love, optimism, friendship, fearless determination, and joy.
Blessings,
Rev. Katie
Unfortunately in the last year and a half, Sue got sick, Mom got worse, and the knitters met intermittently, but they always took care of each other. The knitters have been meeting at Mom and Dad's house now for a while and this Thursday night we got together for the first time after Sue passed away this Monday.
When Dad told Mom that Sue died, many might think she would not understand, but she did and it made her sad. As we sat around the table talking on Thursday, Mom said to me "feels sad" and I know she knew that while we were reminiscing about Sue and telling fun stories, people were sad at the same time. Even in the midst of this loss, the girls made my Mom laugh and come alive in a way that she is not able to do most of the day. Just look at Mom's face in the photo below, she is smiling and happy as we laugh about some good times in our knitting group. Sue was always looking on the bright side of things and so her spirit was definitely there helping us all have fun together.
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| Pat, Gretty, Jackie, and Mom |
Never underestimate the power of friendship to beat dementia!
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| Chris and the rest of the girls. |
Thank you to the Cultured Purls for being so amazing and may we continue to carry on Sue's legacy of knitting, love, optimism, friendship, fearless determination, and joy.
Blessings,
Rev. Katie
Wednesday, April 18, 2012
Montessori: Changing the Way We Think of Dementia
How many times have you heard these comments about people with dementia?:
"People with dementia can't learn new things."
"All you can expect him/her to do is sit and watch TV."
"Dementia patients can't contribute to society anymore."
"You can have a person with dementia do the same task over and over again because they never remember it anyway."
My family and I have been told all of these things about dementia. We have been told to put Mom in an adult daycare where they fold towels over and over again. In our hearts Dad and I just felt that this was not right. We knew there had to be something better out there. We knew Mom, and each person with dementia, is still a person who deserves dignity and respect and who has the ability to contribute to the world in a purposeful way. From the medical field though we were hearing the exact opposite.
Instinctively I knew that what the medical field was saying could not be what laid in store for Mom. In fact, my whole theology revolves around showing people dignity and respect and helping people find purpose and meaning in their lives. With those two things, people feel happy, whole, and find their connection to that which is greater than themselves (God, the Universe, etc...). What people were saying about Mom went against my theology and my understanding of the world. I knew it couldn't be true, but had no proof until this week.
For two days Dad, Mom's caregiver, and I attended a Montessori-based dementia training with the Center for Applied Research in Dementia with Dr. Cameron Camp. This training showed me that we can help Mom have a wonderful and meaningful life even with her Lewy Body Dementia. What annoys me is that I did not see it before.
I went to a Montessori school until eighth grade and I know that is where the core of my belief system came from. I have preached about Dr. Maria Montessori and how her values are in line with Unitarian Universalism. My son goes to a Montessori school. Montessori has been a part of my life forever, yet I also live in a world which drills it into our heads the belief that people can't learn for themselves and they have no value if they are not fast, brilliant, and controllable. After eighth grade, I learned to live in this system because I had to, but I lost some of myself along the way. That's why I didn't notice that if I just applied Montessori principles to life, we could take care of Mom much better.
Dr. Camp taught us:
"People with dementia can learn new things."
"You can expect him/her to participate in activities they enjoy every day."
"Dementia patients contribute amazing things to society when we give them the chance."
"Never have a person with dementia do busywork, like folding towels all day, that does not honor their worth and dignity."
You will see many blog posts in the future about the Montessori method and how we will use it in our care with Mom and with the participants in our weekly dementia program. Right now I am just so excited to be reminded of how Montessori changes lives. As a person with mental illness, I know the Montessori teachings were what enabled me to believe in myself and figure out how to use my strengths to contribute to the world. Without it I would have only focused on what I can't do. Forgetting about the core Montessori teachings meant that we were only focusing on what Mom can't do. Well, no more. Mom has lots of great things ahead of her thanks to Dr. Camp and his colleagues who have brought Montessori to people of all ages. I am glad now I can return to my parents the gift of Montessori that my Mom and Dad gave me.
Blessings,
Rev. Katie
"People with dementia can't learn new things."
"All you can expect him/her to do is sit and watch TV."
"Dementia patients can't contribute to society anymore."
"You can have a person with dementia do the same task over and over again because they never remember it anyway."
My family and I have been told all of these things about dementia. We have been told to put Mom in an adult daycare where they fold towels over and over again. In our hearts Dad and I just felt that this was not right. We knew there had to be something better out there. We knew Mom, and each person with dementia, is still a person who deserves dignity and respect and who has the ability to contribute to the world in a purposeful way. From the medical field though we were hearing the exact opposite.
Instinctively I knew that what the medical field was saying could not be what laid in store for Mom. In fact, my whole theology revolves around showing people dignity and respect and helping people find purpose and meaning in their lives. With those two things, people feel happy, whole, and find their connection to that which is greater than themselves (God, the Universe, etc...). What people were saying about Mom went against my theology and my understanding of the world. I knew it couldn't be true, but had no proof until this week.
 |
| Dr. Maria Montessori 1870-1952 |
For two days Dad, Mom's caregiver, and I attended a Montessori-based dementia training with the Center for Applied Research in Dementia with Dr. Cameron Camp. This training showed me that we can help Mom have a wonderful and meaningful life even with her Lewy Body Dementia. What annoys me is that I did not see it before.
I went to a Montessori school until eighth grade and I know that is where the core of my belief system came from. I have preached about Dr. Maria Montessori and how her values are in line with Unitarian Universalism. My son goes to a Montessori school. Montessori has been a part of my life forever, yet I also live in a world which drills it into our heads the belief that people can't learn for themselves and they have no value if they are not fast, brilliant, and controllable. After eighth grade, I learned to live in this system because I had to, but I lost some of myself along the way. That's why I didn't notice that if I just applied Montessori principles to life, we could take care of Mom much better.
Dr. Camp taught us:
"People with dementia can learn new things."
"You can expect him/her to participate in activities they enjoy every day."
"Dementia patients contribute amazing things to society when we give them the chance."
"Never have a person with dementia do busywork, like folding towels all day, that does not honor their worth and dignity."
You will see many blog posts in the future about the Montessori method and how we will use it in our care with Mom and with the participants in our weekly dementia program. Right now I am just so excited to be reminded of how Montessori changes lives. As a person with mental illness, I know the Montessori teachings were what enabled me to believe in myself and figure out how to use my strengths to contribute to the world. Without it I would have only focused on what I can't do. Forgetting about the core Montessori teachings meant that we were only focusing on what Mom can't do. Well, no more. Mom has lots of great things ahead of her thanks to Dr. Camp and his colleagues who have brought Montessori to people of all ages. I am glad now I can return to my parents the gift of Montessori that my Mom and Dad gave me.
Blessings,
Rev. Katie
Monday, April 16, 2012
ArtCare In Practice
It is hard to describe what ArtCare is, which we use for our programs of the Carolyn L. Farrell Foundation for Brain Health. ArtCare is not art therapy. Our goal is not to cure an illness because so many of the diseases of the brain can not be cured. Particularly with dementia, there is no cure. What people really need is socialization, joy, and the feeling that they can still contribute something beautiful to the world. For our friends with dementia, this is what we are using ArtCare for. For our other programs for mental illness, ArtCare can help in the treatment process, but again it is not a cure. ArtCare is used to bring focus, purpose, and meaning into people's lives.
The art that we have been focusing on for our friends with dementia is abstract art. In the later stages of dementia and people struggling with Parkinson's or arthritis, detailed art that looks like an object is too frustrating to create. Art where you can let your imagination soar is the aim of our program. However, it is hard to get people to let go of thinking art has to look like something, be something, and just have fun like they probably did when they were little. However, as people get used to the process, they see the beautiful things they can create just by using their imagination and letting go of any art "rules" they thought existed. We always say in our programs that there are no rules and you can't make a mistake. Whatever you do is exactly right just the way it is.
Here are a few examples of the art they have created which will be auctioned off at the Alzheimer's Association Cleveland Chapter A Celebration of Hope dinner on April 26, 2012 :
Blessings,
Rev. Katie
The art that we have been focusing on for our friends with dementia is abstract art. In the later stages of dementia and people struggling with Parkinson's or arthritis, detailed art that looks like an object is too frustrating to create. Art where you can let your imagination soar is the aim of our program. However, it is hard to get people to let go of thinking art has to look like something, be something, and just have fun like they probably did when they were little. However, as people get used to the process, they see the beautiful things they can create just by using their imagination and letting go of any art "rules" they thought existed. We always say in our programs that there are no rules and you can't make a mistake. Whatever you do is exactly right just the way it is.
Here are a few examples of the art they have created which will be auctioned off at the Alzheimer's Association Cleveland Chapter A Celebration of Hope dinner on April 26, 2012 :
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| Zentangles art practice. Calligraphy by Mike Gold, CLF Foundation Board Member. |
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| Papercrafting. Individual collages made with patterned paper, cut to create one piece of artwork. |
Blessings,
Rev. Katie
Monday, January 9, 2012
How Does Your Faith Help You?
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| Rehnberg Memorial Window @ Unitarian Universalist Church of Rockford, IL |
I was recently talking with other caregivers of people with dementia/Alzheimer's and many of them commented on what a support their faith is to them. Some expressed that they believe God has a purpose in all things and they trust that purpose. Some said they pray for things like humor in hard times, or patience to help them understand better. Some said they make a point to find the blessings in the midst of this illness.
For me, my I find my faith helps me accept what is right in front of me rather than wishing things were different. My faith helps me remember that all we have is the present moment and if I can learn to stay in that moment, I can truly enjoy what good is happening, because there is always some good somewhere. My faith also shows me the great love that exists in this Universe, lived out by communities of caring people who help me and my family along this path.
How does your faith help you?
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
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, 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
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
Sunday, March 13, 2011
Six-Year-Old Caregiver
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| Mom, Jeffrey & Jeff cooking together. |
He told me that when he was watching TV, an add came on for “a place that helps people with Alzheimer’s and other forms of dementia.” He ran around the house looking for a piece of paper to write down the phone number for us. He could not find anything to write with but said he would keep a notepad and pencil downstairs at the TV so he can write down the information next time.
He said “I know it won’t cure her, but I think they can at least help Beep.”
It amazed all of us to see how much he cares about Mom. On his own he took the initiative to try and get more information about resources for her. It was especially important for Mom to see Jeffrey choosing to be so involved in her care.
I was in awe of the language Jeffrey used in explaining dementia and how he understood that this is not a curable disease, but one that can be helped. I got teary-eyed hearing my son speak so knowledgeably, and caring so much for Mom.
In our everyday life, it is hard to see how all of this is impacting him. How much he understands and how much he even wants to help. He did not really chose to be a caregiver, so we try not to pressure him into that role. But I realize now that he does see himself as a caregiver, and he will discover his own ways to contribute to Mom’s care.
Children pay attention and listen to far more than we realize. If we just give them time to express what they know and how they feel, they will teach us amazing lessons about life and love.
Blessings,
Rev. Katie
Monday, February 14, 2011
Stigma Against People with Diseases of the Brain
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| This image shows the beauty of the human brain. I wish everyone saw the brain in this way. |
At a deep level, I can understand just how painful it is for people with dementia to be stigmatized. I have been treated the same way by society because I have bi-polar disorder, ADD, and a panic disorder. This specific kind of stigmatization seems to be prevalent with any kind of disorder/disease of the brain, whether it be dementia, Alzheimer’s, or any mental illness. I have heard that this kind of stigma is also common for people with developmental disabilities, but I can not speak to that as I do not have personal experience with it.
This stigmatization is so frustrating to me. I can say, from my experience, when people treat you like you are inhuman, as scary, annoying, and unreliable, you see yourself as inhuman. You do not feel that you have any worth and dignity. This causes extremely low self esteem, it causes many people not to get treatment because they do not want anyone to know they have a disease of the brain, and sometimes it causes one to feel as if life is not worth living.
As soon as I tell someone I am bipolar, many assumptions run through their mind, and some of those assumptions I can see on their face. The shock, the embarrassment, the disgust. I have been this way since I was six years old and I have tried to hide it almost my whole life because I could not stand the way people treated me when they found out about my illness. I can barely get life insurance because of my bipolar label and the apparent risk I present, even though I have no history of suicide or hospitalization. People seem to fear that I will embarrass them or do something “crazy.”
I am not exactly sure where this stigma comes from. Is it because we only hear news stories of people with these illnesses who have done scary or outrageous things? Is it because, for mental illness at least, it was often assumed that if a person was just more in control of themselves and took more responsibility for themselves that they would be fine? In other words, mental illness is your own fault, not a real illness?
It is very likely that you come into contact with at least a few people every day with some form of a brain disorder, and you would never know it. People say all time that they can’t tell my Mom has dementia. Most people do not know I have mental illness.
What I wish is that more people talked about these diseases of the brain. That we saw how slight changes in our society can make it much easier for people like me and my mom to live successfully and contribute positively to the world. I wish people understood that we do not chose to be this way. My mom did not chose or do anything to cause her dementia. She is not slow, forgetful, or easily annoyed because she wants to be. I did not chose to be afraid to leave my house, have mood swings, or be unable to keep things organized. Trust me, no one wants to live this way. It makes everything a million times harder and it means your life centers around managing your illness first before you can do anything else. But by far, one of the worst thing about such diseases is that other people treat you like you are, well, a freak.
What I wish is that society saw us as human.
It is possible to end these stigmas and welcome people like Mom and me into society. I see this every day in many of the Unitarian Universalist churches I have attended and served. The Unitarian Universalist faith was the group who said I was human, I have inherent worth and dignity, and I am welcome. They say the same thing to my mom. Our communities are still learning how to be truly welcoming to people with all sorts of brain disorders, but the progress we have made is immense and a great inspiration to me.
Please be aware of the stigma and the ways in which each one of us contributes to it. Let’s talk about it and find ways to overcome it so more people can manage their illness and we can help them live meaningful lives.
Blessings,
Rev. Katie
Saturday, February 12, 2011
Just Don't Let Anyone Know You're Here
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| A reflection of how society often does not welcome people with Alzheimer's. Photo by Jeff Norris |
Yesterday we were informed that while the event planners would still donate the proceeds from the race to the Alzheimer’s Association, they did not want to reserve tent space or tables, sell items, or have any signs mentioning Alzheimer’s at the event. The only time Alzheimer’s would be mentioned was on the event registration stating that proceeds would be donated to them. Their view is that Alzheimer’s is a depressing disease and the community event was supposed to be fun. They fear that recognizing Alzheimer's publicly would decrease attendance at the event because people do not want to be around people who have Alzheimer’s disease.
We politely declined to participate under these circumstances because the purpose was to raise awareness about the disease. The community event’s coordinators said at least we would still get money donated to the Alzheimer’s Association, and that was better than nothing. In our mind, that is not true. They were asking us to take money in exchange for hiding people with Alzheimer’s and dementia. They were saying people like my Mom are not welcome there, not part of our larger community.
Of course, I am upset by this turn of events. However, I am not surprised. This group is no different than the majority of the world. They fear a disease they do not understand and so inadvertently hurt and stigmatize people who are suffering.
My family and I will continue to raise awareness and work to end this stigma in any way we can. I try to remember the title of John Zeisel’s book about Alzheimer's care, called “I’m Still Here.” We want people with Alzheimer’s to know they are always still here, we will always see them. As Zeisel says, people living with Alzheimer's should not be hidden from society.
Blessings,
Rev. Katie
P.S. Even if you know what event I am talking about, please respect my wishes and do not disclose what event this was. This is not a problem associated with one group, they are just an example of society as a whole. All people deserve to be treated with respect.
Sunday, January 23, 2011
Thankful for My Dad, Husband, and Son
I am currently reading The Shriver Report: A Woman’s Nation Takes on Alzheimer’s which is a study by Maria Shriver and the Alzheimer’s Association. It is a wonderful study and an invaluable read. I am sure I will have many reflections on it in the future.
The Shriver Report focuses on women because 65% of Alzheimer’s patients are female, and 60% of caregivers are women. In the introduction to the study, John Podesta, President and Chief Executive Officer of the Center for American Progress says: “The vast majority of caretakers in America are women; often, they bear primary responsibility for raising the next generation as they care for the last. But for the first time in American history, women now also make up half the work force, and two-thirds of all mothers are primary or co-breadwinners in their families. With American women juggling so many responsibilities already, caring for a loved one with Alzheimer’s disease can become a Herculean challenge.”
I want to mention that I have not finished the report yet, but so far I realize this does not address same-sex couples. There are many questions about gender roles that come up for me in reading this report as well. I am also not sure how representative the study is of different economic statuses. They do represent different cultures in the study. So, I realize there are many questions of gender, sexual-orientation, class, and culture that we need to be asking. This is a wonderful study from the perspective it was written from and for now I just wanted to reflect on one of the things it has personally made me thankful for.
I am thankful for the outlook that the men in my life have on family, gender roles, and caregiving. My Dad is committed to care for my Mom and does not leave caregiving to his female children, as many men do. He sees it as an honor to care for Mom. I love the way he sees this as a group effort which we all do together.
Many people assume that I care for Mom more than my husband does, thinking we fall into those gender roles. However, my husband helps out just as much, and sometimes more, than I do. He too sees this as something we all do together. As often as possible, he also tries to structure his job in a way that helps me care for Mom and have a job I love.
My son is learning, from his two male role models, that we all help care for each other. There is no idea that one gender does certain tasks and the other gender does other things. We all contribute in ways that align with our inherent gifts. It amazes me the ways in which my son notices when Mom needs something or knows how to get her to have fun when she is sad.
And all three of them, my dad, husband, and son, fully support me in my work as well. They work around the nighttime meetings of ministry and the fact that I work on the weekends. Never once have they said or implied that as a woman, my work comes second and I should be the one to be there to care for either Mom or my son. I often chose to have a more flexible schedule to be there for family, but that is my choice, not a pressure.
There are many pressures from society about what being a woman is and means, especially in terms of family and caring for our older generation. I am grateful that in my family, instead of Alzheimer’s being a woman’s issue, it is a family issue.
Blessings,
Rev. Katie
The Shriver Report focuses on women because 65% of Alzheimer’s patients are female, and 60% of caregivers are women. In the introduction to the study, John Podesta, President and Chief Executive Officer of the Center for American Progress says: “The vast majority of caretakers in America are women; often, they bear primary responsibility for raising the next generation as they care for the last. But for the first time in American history, women now also make up half the work force, and two-thirds of all mothers are primary or co-breadwinners in their families. With American women juggling so many responsibilities already, caring for a loved one with Alzheimer’s disease can become a Herculean challenge.”
I want to mention that I have not finished the report yet, but so far I realize this does not address same-sex couples. There are many questions about gender roles that come up for me in reading this report as well. I am also not sure how representative the study is of different economic statuses. They do represent different cultures in the study. So, I realize there are many questions of gender, sexual-orientation, class, and culture that we need to be asking. This is a wonderful study from the perspective it was written from and for now I just wanted to reflect on one of the things it has personally made me thankful for.
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| My son, me, and my dad |
Many people assume that I care for Mom more than my husband does, thinking we fall into those gender roles. However, my husband helps out just as much, and sometimes more, than I do. He too sees this as something we all do together. As often as possible, he also tries to structure his job in a way that helps me care for Mom and have a job I love.
My son is learning, from his two male role models, that we all help care for each other. There is no idea that one gender does certain tasks and the other gender does other things. We all contribute in ways that align with our inherent gifts. It amazes me the ways in which my son notices when Mom needs something or knows how to get her to have fun when she is sad.
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| My dad and my husband |
And all three of them, my dad, husband, and son, fully support me in my work as well. They work around the nighttime meetings of ministry and the fact that I work on the weekends. Never once have they said or implied that as a woman, my work comes second and I should be the one to be there to care for either Mom or my son. I often chose to have a more flexible schedule to be there for family, but that is my choice, not a pressure.
There are many pressures from society about what being a woman is and means, especially in terms of family and caring for our older generation. I am grateful that in my family, instead of Alzheimer’s being a woman’s issue, it is a family issue.
Blessings,
Rev. Katie
Friday, January 21, 2011
Giving Dementia Patients What They Want
I try to read articles and books with suggestions that we give people with dementia or Alzheimer’s what they want with an open mind. I am not a doctor, I don’t run a nursing home, and I am not an expert in dementia. All I know is that we live with it every day and in our experience, this information presented to the public without added research and explanation, can be harmful.
For instance, the New York Times article, Giving Alzheimer’s Patients What They Want, Even Chocolate, has caused more harm than good in our home. The good was that it reminded me that some of the things Mom does are coping mechanisms. If she wants to wash one or two pairs of pants at a time over and over again, and she has the energy to do so on that day, we should let her do it because it brings her comfort. The article also shows some amazingly innovative and more caring ways to deal with dementia. However, other parts of the article were less helpful.
The article talks about letting patients eat whatever they want and shower at 3am if they want. What the public does not realize in reading these articles is that this is a care facility, not a home, where it is someone’s job to be awake at 3am. They come in for the night shift, they have not already cared all day for someone. And for nutrition, they do not address if these people, in addition to the chocolate, also eat well balanced meals. They also do not go into what happens when someone refuses to eat nutritious food. Where all they want to eat is chocolate Special K, hot dogs and candy. When that makes them sick, what do you do? What happens when the person sits in bed all day, never getting any exercise because they don’t want to do it? Their muscles weaken and they can barely hold up the weight of their skeletal system. What do we do then? What do we do when Mom won’t go out and get’s depressed because she has not seen her friends and had any fun?
In our home care experience, we can’t just let Mom eat whatever she wants, not exercise, and stay in bed all day. Yet others who read article’s like this one tell us “The article says it’s ok, that’s what you should do.” Some people think we are being mean to Mom by trying to get her to eat well and exercise when she does not want to do it. Mom reads these articles and hears the speakers mention this type of care, and even she says that since these “experts” say it’s ok, we should let her do whatever she wants.
But, it is not ok. Mom does not deserve a life where she is uncomfortable and sick all the time because she does not take care of herself. And in reality, it is us, those who care for Mom, who are responsible for the ramifications of letting Mom do whatever she wants. We will be the ones to carry her in and out of bed when she can’t lift her own body. We will be the ones to wash and bath her. We are the ones that have to take care of the many things that happen when she gets sick. Clearly we are willing to do all of those things, but we don’t want to make it happen faster than it needs to. And the psychological and physical pain all this causes Mom is immense, she should not have to live that way.
I don’t know how to tell people this, but unless you live with a person with dementia every day, not for a week or two, but 24/7, you will not understand the ramifications of things that seem so insignificant. Cereal for dinner on one day seems harmless, but when a person eats unhealthy all week, they get sick. Missing exercise one day seems fine, but not when someone has not really been active for a long time and looses muscle mass. An alcoholic “nip at night,” as the article mentions, is fine unless it increases hallucinations.
All I ask is please, if you write such articles or present this information, please think about the people who do home care. Please think of how the generality of the information leads people to make sweeping assumptions that this kind of care works for everyone in all situations. And if you read this kind of information, first, thank you for caring enough about dementia to gain more knowledge about it. Second, please remember that this information does not work for everyone. The disease affects everyone differently and home care is much different than institutional care.
Blessings,
Rev. Katie
For instance, the New York Times article, Giving Alzheimer’s Patients What They Want, Even Chocolate, has caused more harm than good in our home. The good was that it reminded me that some of the things Mom does are coping mechanisms. If she wants to wash one or two pairs of pants at a time over and over again, and she has the energy to do so on that day, we should let her do it because it brings her comfort. The article also shows some amazingly innovative and more caring ways to deal with dementia. However, other parts of the article were less helpful.
The article talks about letting patients eat whatever they want and shower at 3am if they want. What the public does not realize in reading these articles is that this is a care facility, not a home, where it is someone’s job to be awake at 3am. They come in for the night shift, they have not already cared all day for someone. And for nutrition, they do not address if these people, in addition to the chocolate, also eat well balanced meals. They also do not go into what happens when someone refuses to eat nutritious food. Where all they want to eat is chocolate Special K, hot dogs and candy. When that makes them sick, what do you do? What happens when the person sits in bed all day, never getting any exercise because they don’t want to do it? Their muscles weaken and they can barely hold up the weight of their skeletal system. What do we do then? What do we do when Mom won’t go out and get’s depressed because she has not seen her friends and had any fun?
In our home care experience, we can’t just let Mom eat whatever she wants, not exercise, and stay in bed all day. Yet others who read article’s like this one tell us “The article says it’s ok, that’s what you should do.” Some people think we are being mean to Mom by trying to get her to eat well and exercise when she does not want to do it. Mom reads these articles and hears the speakers mention this type of care, and even she says that since these “experts” say it’s ok, we should let her do whatever she wants.
But, it is not ok. Mom does not deserve a life where she is uncomfortable and sick all the time because she does not take care of herself. And in reality, it is us, those who care for Mom, who are responsible for the ramifications of letting Mom do whatever she wants. We will be the ones to carry her in and out of bed when she can’t lift her own body. We will be the ones to wash and bath her. We are the ones that have to take care of the many things that happen when she gets sick. Clearly we are willing to do all of those things, but we don’t want to make it happen faster than it needs to. And the psychological and physical pain all this causes Mom is immense, she should not have to live that way.
I don’t know how to tell people this, but unless you live with a person with dementia every day, not for a week or two, but 24/7, you will not understand the ramifications of things that seem so insignificant. Cereal for dinner on one day seems harmless, but when a person eats unhealthy all week, they get sick. Missing exercise one day seems fine, but not when someone has not really been active for a long time and looses muscle mass. An alcoholic “nip at night,” as the article mentions, is fine unless it increases hallucinations.
All I ask is please, if you write such articles or present this information, please think about the people who do home care. Please think of how the generality of the information leads people to make sweeping assumptions that this kind of care works for everyone in all situations. And if you read this kind of information, first, thank you for caring enough about dementia to gain more knowledge about it. Second, please remember that this information does not work for everyone. The disease affects everyone differently and home care is much different than institutional care.
Blessings,
Rev. Katie
Wednesday, November 24, 2010
A Bit More Clarity
Mom and Dad went to see her doctor today. We are continually struggling with the fact that there is no one, clear diagnosis for Mom. It is important to understand that there is no definitive pathological test to diagnose Alzheimer’s Disease, Parkinson’s disease or most of the other things that cause dementia. The only way to know for sure what someone has it by looking at the brian postmortem.
Dementia is a very broad category but it looks like Mom falls most into the category of having Lewy Body Dementia (LBD). The Lewy Body Dementia Association says, “LBD is an umbrella term for two related diagnoses. LBD refers to both Parkinson’s disease dementia and dementia with Lewy bodies.” You can see that this is a hard thing to figure out because Lewy Body Dementia symptoms are very much like the symptoms of Alzheimer’s and Parkinson’s.
In the end, what does this realization mean for Mom’s treatment? Not much. It will not change how Mom is treated because there are no different medications for Lewy Body dementia that we can add. The only way it helps is that it gives us greater understanding. For instance, we now know that Mom’s extreme fatigue is not caused by medication or anything we can fix, it is just part of the dementia. It explains why Mom’s cognitive functioning varies day to day and even hour to hour.
We are glad that this helps us understand the fatigue because by far the fatigue has been hardest to deal with. If we got rid of it, we could improve Mom’s quality of life substantially. We have gone bath and fourth trying to change medications and do a number of things to decrease the fatigue. Now we know that this fatigue Mom has been dealing with for seven years, even before the other symptoms started, is part of the dementia. Now we just really need to focus on how to live with it, rather than fight it.
As anyone dealing with dementia knows though, the disease affects everyone differently and you can never really predict tomorrow, but at least this information might help.
Blessings,
Rev. Katie
Dementia is a very broad category but it looks like Mom falls most into the category of having Lewy Body Dementia (LBD). The Lewy Body Dementia Association says, “LBD is an umbrella term for two related diagnoses. LBD refers to both Parkinson’s disease dementia and dementia with Lewy bodies.” You can see that this is a hard thing to figure out because Lewy Body Dementia symptoms are very much like the symptoms of Alzheimer’s and Parkinson’s.
In the end, what does this realization mean for Mom’s treatment? Not much. It will not change how Mom is treated because there are no different medications for Lewy Body dementia that we can add. The only way it helps is that it gives us greater understanding. For instance, we now know that Mom’s extreme fatigue is not caused by medication or anything we can fix, it is just part of the dementia. It explains why Mom’s cognitive functioning varies day to day and even hour to hour.
We are glad that this helps us understand the fatigue because by far the fatigue has been hardest to deal with. If we got rid of it, we could improve Mom’s quality of life substantially. We have gone bath and fourth trying to change medications and do a number of things to decrease the fatigue. Now we know that this fatigue Mom has been dealing with for seven years, even before the other symptoms started, is part of the dementia. Now we just really need to focus on how to live with it, rather than fight it.
As anyone dealing with dementia knows though, the disease affects everyone differently and you can never really predict tomorrow, but at least this information might help.
Blessings,
Rev. Katie
Tuesday, November 23, 2010
Cooking Lessons
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| Our Thanksgiving Stuffing |
Mom still loves to cook though, so around the holidays we try to make sure she can make some of the things she likes. My sister has been having her over for a few weekends to bake the Thanksgiving bread together. Today Mom and Dad were cooking the stuffing together, and lets just say it was an experience.
When Mom works with my sister, all goes well. My sister is very patient, writes out everything step-by-step, works slow, is organized, and never looses her temper with Mom. She knows the correct way to help allow Mom be engaged and still do things she loves.
On the other hand, my Dad and I are the opposite of my sister. We have much less patience, less organization, and we work faster. When Mom is subjected to cooking with either one of us, it can be stressful at times. This is something we keep working on and we are glad my sister can give us a good example to follow. My first cooking lesson to help people with dementia to slow down, be organized, and be patient.
Besides the pace and style of working together, I learned another lesson of how dementia makes it a bit harder to cook with Mom.
Following recipes has become very hard for Mom. When we have recipes that are short and well laid out, that is a big help. However the stuffing recipe today had two recipes on the back of the package and conversions based on how many servings you need to make. Not really an easy recipe to follow.
So today Dad was trying to follow the recipe, Mom was telling him he was doing it wrong, he was telling her she was doing it wrong, and I was just watching.
What we finally realized was Mom has made the same stuffing, from the same package, for fifty years, but she did not follow the recipe as it is written on the back. We did not figure out until a while into the process that Mom was not confused at all. She was remembering what she used to do and that is why the recipe did not make sense to her.
There have been other times while cooking when Mom was not remembering correctly and she would make a recipe wrong by following what she thought was right rather than following the recipe. Today was not one of those times though. How do we know when the dementia is causing a problem, or when she really remembers what she used to do if all we have is a recipe that we are supposed to follow?
My second lesson in cooking with a person with dementia is not to always assume they are wrong, even if they are not following the recipe as written.
We feel bad that the experience was stressful for both Mom and Dad today, although now we are all laughing about it. I have a feeling there will be many times like this to come in the future but hopefully our humor will outweigh the stress.
Blessings,
Rev. Katie
Friday, November 19, 2010
Dementia Is Hardest On...
Today Mom mentioned in one of our conversations, “People always say Alzheimer’s is hardest on the caregiver.” In that moment, I realized just what this often quoted statement might mean to the person with dementia. We were in the middle of talking about how often caregivers speak for their loved one and how infrequently we actually hear from the person with dementia. We said we need more support for the actual patient, and Mom came out with the statement above. I felt like Mom was minimizing how bad this disease is for her because she was taught to do so.
In my experience there are a whole lot of books and support groups for caregivers of people with Alzheimer’s and dementia, but often the actual person with dementia is left out. I hear the quote Mom said at least a few times a month. I rarely hear people say how hard this disease is on the actual person who has it.
Yes, dementia is hard on the caregiver, there is no denying that. I just worry when we focus so much on the caregiving side that we are giving the impression to our loved one that their suffering does not matter. For some this statement may also make them feel guilty, as if they are a burden on their caregivers. I don’t want Mom to have the impression that she is a burden or that her experience of how difficult this disease is is not valid. I actually felt ashamed that Mom so readily repeated this statement. Of all things I want her to remember, that statement is not my first choice.
Being a caregiver is hard now and will only get worse. However, the disease is very hard on Mom too. I can see how hard it is for her. How she is scared of the future and the fact that one day she may not know who her children or husband are. How she feels as of her life has lost it’s purpose because she is so limited in her abilities. This is the one illness she was most afraid to get because she lost her mother to Alzheimer’s. This, in many ways, is Mom’s worst nightmare become reality.
I don’t want to compare who Alzheimer’s/dementia is hardest on. It is hard on us all in different ways.
Blessings,
Rev. Katie
In my experience there are a whole lot of books and support groups for caregivers of people with Alzheimer’s and dementia, but often the actual person with dementia is left out. I hear the quote Mom said at least a few times a month. I rarely hear people say how hard this disease is on the actual person who has it.
Yes, dementia is hard on the caregiver, there is no denying that. I just worry when we focus so much on the caregiving side that we are giving the impression to our loved one that their suffering does not matter. For some this statement may also make them feel guilty, as if they are a burden on their caregivers. I don’t want Mom to have the impression that she is a burden or that her experience of how difficult this disease is is not valid. I actually felt ashamed that Mom so readily repeated this statement. Of all things I want her to remember, that statement is not my first choice.
Being a caregiver is hard now and will only get worse. However, the disease is very hard on Mom too. I can see how hard it is for her. How she is scared of the future and the fact that one day she may not know who her children or husband are. How she feels as of her life has lost it’s purpose because she is so limited in her abilities. This is the one illness she was most afraid to get because she lost her mother to Alzheimer’s. This, in many ways, is Mom’s worst nightmare become reality.
I don’t want to compare who Alzheimer’s/dementia is hardest on. It is hard on us all in different ways.
Blessings,
Rev. Katie
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