Manicures With Mom

Once a week I give Mom a manicure. I like this time with Mom because it gives us a regular routine of spending quality time together. Sometimes we have to build these moments into our life, moments when we are just present with another person without the distraction of people or television. When we do not consciously make the time, we often lose the opportunity to really connect with others. I learn the most about how Mom is feeling when we have this one-on-one time. I am glad this small ritual gives us these moments of greater knowing and understanding of one another.

Painting Mom’s nails also provides me with a lesson in life. When I hold her hands, with the absolutely perfectly smooth and soft skin I have always wished I had, I try to steady her tremors. What I noticed though is if I attempt to hold her hand steady, I actually make the tremors worse. It is as if her hands are trying to push back at my attempt to hold them still. This has been a good learning experience for me to stop trying to control life and live in the moment, accepting things as they are. Sometimes Mom gets annoyed with the tremors and apologizes for them. I keep telling her it does not matter if her hands shake, it is not a problem. I want Mom to know that I and other people will love her and care for her no matter what happens. There is no need to apologize for who you are or what is happening to you. We will be there to paint your nails, help you get dressed, or do whatever else you need.

And there is just something about human touch that is healing and important. When my husband was taking pictures for this blog post, we did many different poses. Most of them were with my hand over Mom’s and for some reason, none of the photos really looked right. Then this photo pictured here jumped out at me as the correct one. My hand over Mom’s did not look right, but this one, with her hand over mine does. It reminds me off all the times Mom has reached out her hand to take care of me. To hold my hand when I was scared or pat my hand to remind me she is right next to me. This was the right photo which showed our relationship and our personalities. Mom is the one with the beautiful understated yet elegant fashion with the subtle nail color, and I am the one with the love of bold colors such as black with purple sparkles.

It is amazing to me how one small act in life, which probably takes a half hour a week, can teach me so many lessons and reflects so much about who Mom and I are.

Blessings,

Rev. Katie

Dressing Mom

Mom and I went out shopping today to try and find her some new clothes that fit her ability requirements and our lifestyle requirements. We needed shirts that were washable, dryable, no-iron, wrinkle free, that you do not need to put over your head, with large button holes, for a petite height, and which fit Mom’s body shape (which is the shape of most women, not a size 2.)

It is a good thing Mom and I have so much fun together or we would have lost it today. Most of the shirts that fit were in a size with sleeves which were much too long and shoulders that sagged. The suggestion from the sales representatives was to layer. We should get a smaller sized shirt, leave the shirt open, and wear a tank (which you slip over your head) underneath it. I tried explaining that layering was too complicated with Mom’s Parkinson’s and dementia. One sales associate treated me like I was the worst daughter in the world by saying Mom needed clothes that were easy to wear, even though Mom was right there agreeing with me. I did a lot of the talking because Mom was having a hard time explaining what she needed. It was as though the woman thought I was over exaggerating Mom’s limited ability and I was putting her down. Frankly, it was offensive to be treated that way- judged as if I was a bad person. And it was demeaning to Mom that this woman expected Mom to be different and she could not to recognize Mom’s limitations.

I know many people don’t truly understand Parkinson’s or dementia. People usually think Parkinson’s means head or hand tremors. They don’t know that often patients can’t use buttons well, or they can’t lift their arms over their head or put their arms behind their back. People do not understand that dementia affects a person’s ability to understand where the button holes are and figure out how the clothes go on. This is because we have a lack of awareness of these two diseases. We do not talk about them enough and most of the time patients are relegated to their homes or in a nursing home.

There are clothes made for people with Alzheimer’s and Parkinson’s but they are highly unflattering attire. We looked at them, but Mom was not ready to go there. Needing to wear unappealing clothes because of Mom’s illness is another way to take away who she it. It says: “Look at all you have lost, we do not even make nice clothes for you to wear.” It is just another way that her worth and dignity are slowly taken away, and another way we remove people like Mom from mainstream society.

I know some people might think something like clothing is a petty thing to care so much about. I know the fact that we even have the ability to buy new clothes is a blessing. However, the clothing issue is important because it is another part of this disease which makes life harder for Mom, and it shows us how our society treats people who are different.

Blessings,

Rev. Katie

Meet the Person Where They Are - Or Not

I have read a lot about Alzheimer’s and one of the main suggestions the professionals give you about caring for someone with dementia is that you should meet the person where they are. They say not to argue with a person with Alzheimer’s when they insist that it is 1950 and they are in high school. Don’t try to convince them that they are in a nursing home when the person really thinks they are working back in their profession from twenty years ago.

Before I lived with my Mom, and even when I worked as a chaplain a few years ago, this made sense. However, this advice does not always make sense when you are actually living with a person with dementia.

Mom is not to the point where she thinks she is a teenager again or does not understand where she is, who she is, or who we are. She does have increasing confusion though and I notice that when we are struggling with Mom, often the professional advice would be to meet her where she is, go with what she thinks is going on. But that does not always work.

For instance, for the past two days, Mom has been worried about the time and day of her next haircut. She saw the appointment and she thought she had a conflict with the appointment so called to change it. When I pointed out that there was no conflict and she was looking at the wrong month, she asked me to call and change the appointment back, which I did.

That was yesterday.

Today again she could not understand when the appointment was and how it did not conflict with another event. We kept trying to explain it to her, but even she mentioned that she just could not understand what was going on. It was frustrating for her and it is probably a discussion we will have again tomorrow, and maybe every day for a week and a half until her appointment.

I can’t meet Mom where she is on something like this because we can’t just go to a hair appointment this weekend that does not exist. Or what about when she insists that she has more porcelain dolls in the basement, when in reality they just do not exist? I can’t get them for her, because there is nothing there. I can’t pretend they exist because she wants to display them. It causes a lot of emotional pain for her, and all of us, to go through these times, but meeting her where she is, is not an option.

This middle stage of dementia can be quite hard to handle because you can not just enter into the imaginary world of the patient because they still know what is going on. They know their brain is not working correctly and they are struggling to understand what is reality and what is not.

I feel like much of the advice about dementia is for people in the advanced stages and those suggestions just do not apply to where Mom is. If anyone knows of more books or advice for people in the middle stages, let me know, maybe we have just not found it yet.

I guess today I am just trying to express that sometimes all the advice and suggestions in the world don’t work for individual situations. It is a frustrating and sometimes lonely place to be.

Blessings,

Rev. Katie

The Future of Alzheimer's

“Our government is ignoring what is likely to become the greatest threat to the health of Americans: Alzheimer’s disease, an illness that is 100 percent incurable and 100 percent fatal. It attacks rich and poor, white collar and blue, and women and men, without regard to party.” This quote is from a great article in the New York Times today called “The Age of Alzheimer’s,” written by Sandra Day O’Connor, Stanley Prusiner, and Ken Dychtwald. It is a wonderful overview explaining the increase we will see in Alzheimer’s over the next twenty years, and why we need to increase funding for Alzheimer’s research.

The article points out that for every penny the National Institutes of Health spends on Alzheimer’s research, we spend more than $3.50 on caring for people with Alzheimer’s. As the baby boomers reach 65 years and older, more than 10,000 people per day are at increased risk of Alzheimer’s.

I know in my Mom’s lifetime, there will most likely be nothing that will be found to cure her dementia, but if we start giving more money to research we can create a better future for the potential 13.5 million people who will get Alzheimer’s by 2050. My Mom hopes for a better future for these people than the future she was given.

Mom watched her mother live with and die from Alzheimer’s disease thirty years ago. In those thirty years we have made very little advances in the cure of this disease. I know Mom does not want her children, who genetically have an increased risk of Alzheimer’s disease, to go through what she is experiencing. She has committed to donating her body to science after she dies so researches can have more of a chance to combat this disease.

An increase in funding requires a mass movement of people demanding that Alzheimer’s research become a priority. It will entail legislation which will increase the annual federal contribution to research, such as the bill which is in front of Congress right now, S 3063: National Alzheimer’s Project Act. For more information on how you can help pass S 3063, go to this page of the Alzheimer’s Association website. You can find out if your member of congress supports the act and find ways to contact him or her.

Blessings,

Rev. Katie

Keeping Mom's Spirit Alive

Julia as Belle, 2010

My niece just sent me some photos of her wearing a costume that my Mom made for me in high school, fifteen years ago. I was struck by two things, one that Mom can no longer sew or make things like this anymore, and two that we can keep Mom’s inner spirit alive by incorporating the past.

When we honor and remember what Mom used to be able to do and when we incorporate the things she has made into our lives today, we are keeping Mom’s memory alive. We remind her of what she has done in her life, and we let her know how much those things mean to us.

The costume my niece Julia wore is a Belle costume from Beauty and the Beast. Belle is my and Julia’s favorite Disney princess. I wore that costume for Halloween, and then in college I wore it while I worked at the Disney store and I created “Story Time with Belle” at the mall. Not only are our lives touched by that costume of a character we love, but so were many children’s lives because they loved story time with Belle. They would draw me pictures and thank Belle for reading to them.

When Julia wrote to us and sent us the photos, she made Mom very happy. Mom saw just how much she contributes to this world, even now that her abilities have changed.

The inner spirit of who we are lives on through the people who keep those memories going. Maybe it is our job now, as Mom is losing her abilities and memory, to help keep her spirit alive by enjoying the past and reminiscing with her.

Mom often talks about feeling worthless now that she can not do things like she used to. She feels like her inner spirit is lost. We can help her find herself again by the ways in which we honor who she is and all the things she has done for us.

Story time with Belle, 1999

Julia can wear her costume, I can cook pies making the crust Mom taught me to make, and my son loves his white blanket Mom made for him which he carries everywhere. Mom’s spirit and love is in all of those things and we can share that with her, with each other, and with the world.

Blessings,

Rev. Katie

Thankful for Community

I was out of town for a few days this weekend for the ordination and installation of one of my good friends from seminary. Being with many of my classmates who I had not seen in a group since graduation in May reminded me of the wonderful power healthy community can have in our lives. I realized I would not be where I am today, living with my parents, if it had not been for the community example of my classmates and the example from many Unitarian Universalist churches I have been in contact with over the years.

Six years ago, when we joined our first and current Unitarian Universalist church, West Shore UU Church, was the first time I learned about real community. It was there where I was lifted up and in many ways healed by a community who accepted me just as I am.

Then four years ago, my husband, son and I moved to Chicago for my seminary education. It was with a two and a half year old son, no keys to our new apartment, and a broken down moving truck that, we met Michael and Cara. Just in the midst of having no food and a tired child, Michael came walking into the backyard with his two little boys around Jeffrey's age. They invited us into their apartment. We played and laughed and when Cara got home from work we all had a dinner of mac and cheese, grapes and peas. It was one of the best dinners I can remember.

From then on I learned what community means and I was reminded of it once again this weekend. This weekend I was on traveling alone with my son and yet I was not truly alone. Much of the weekend was spent in choir rehearsals, which would be hard to attend with a child. However, friends of Michael and Cara, who I had just met, and our seminary peers took care of Jeffrey and the two boys. They played with them, drove them from church and back. Carried three car seats, three kids, and various item the kids had brought with them.

Complete strangers, to us, from Michael’s new wonderful congregation provided home hospitality to those of us who had traveled in for the occasion. At the lovely home we stayed in Jeffrey got to eat fresh eggs, see chickens, pick strawberries and carrots, and take a boat ride in a pond. He learned about plants and animals he was unfamiliar with.

It was the example of my friends and the many Unitarian Universalist churches I have been to, which has allowed me to come back and live with my parents. These people taught me that if we can love people just as they are, then we can live in close community together.

Healthy community does not mean a group of people who always get along and are always happy. It means a group of people who have made a covenant (a promise) to support and care for each other. It will not always be easy, you may not always get along, but you keep coming back to the relationship. When things don’t go well, you talk about it face to face. You give in, you compromise, you agree, you disagree. We speak the sometimes hard truth to one another. We celebrate each other’s joys, comfort each other’s sorrows, and speak honestly about our failures. A community does all of those things in respect and love. A community comes back to it’s covenant when it fails and it remakes the promise to each other.

In our house, we have fun, we respect and care for each other, and we mess up. Without my experiences with people who embody this ideal of healthy community, I never would have thought Mom, Dad, Jeff, Jeffrey and I could live together. Other people showing me that I am loved and cared for just as I am enabled me to live out some of my highest values, those of caring for our loved ones. Ever since I was little I had a vision of a world like this, where people helped each other in this way, but I never thought it was possible. These communities I have been with in the past six years have made that dream a reality.

It is with gratitude and joy that I recall that first day in Chicago with Michael and Cara. From their example, and the example of many others, I learned what true community means and now I am able to live that dream with my parents and the larger community of which we are a part.

Blessings,

Rev. Katie

Too Much Going On

It has become increasingly more complicated to schedule things in our house anymore. Mom is getting more forgetful and has an especially hard time if more than one thing is different than usual. For instance, this week my husband Jeff is out of town part of the week, my son and I are gone over the weekend, and I have had a few meetings in the evenings, and one night all of us had meetings at the same time. 

The other night Mom had no idea where we were going and when I went over the travel schedule with her again, she was angry and made the comment “Why do you guys hide everything from me?” I can see why she is angry. In her mind, we did not tell her what we were doing. And frankly, I admit that while we did tell her, I did not remind her enough or remember to put everything on the calendar. In the future I will write things down better and remind her more, but it is not only the schedule that is confusing. Even when Mom remembers the schedule she can’t remember why we are going somewhere or what we will be doing. It is just way too much information for her to remember and it is frustrating.

It is hard to balance all of our lives together at one time. We can’t stop doing things we like, but we also need to make sure Mom is more included and does not feel as though we are hiding things from her. Possibly writing down the when, where and why of our travel and meetings would be helpful.

The reality is that sometimes life moves very fast and a person with dementia can not process things quickly. You really need to slow down and be patient. However, we do not always have that option, and those are the times when it is particularly hard. It is not pleasant to have to leave Mom when she is confused and did not know we were going anywhere. But we have to get to the meeting, or catch the flight, and sometimes we can’t slow down and take more time.

I feel in those moments that I do not have the ability to address Mom’s feelings and truly take care of her. I feel like I am choosing myself over her, which is true. I know we all have to chose ourselves over other people at times. We do this with our friends, partners, kids. This is never an easy thing to do, but if we do not take care of ourselves and do the things that bring us joy, we can’t really take care of and support others.

What I hope is that overall Mom knows we love her and want to take care of her, even if we are not good at it sometimes, and even if we have to leave.

The best thing we can do is keep trying to have better communication as her abilities change so we lessen the times of last minute confusion just before we have to head out the door.

Blessings,

Rev. Katie

The Long Goodbye

It is common for people to call Alzheimer’s disease, “The Long Goodbye.” Patients wrestle with this illness for decades and therefore it is a long goodbye for the family and friends of the person with dementia. We slowly see them slip away. We say goodbye to small parts of them at first, their ability to remember a new phone number, their quick answers to questions. Then we start to say goodbye to more and more. We say goodbye to the hobbies we used to do together, we say goodbye to their identity, we say goodbye to our mother or father who is looking at us but has no idea who we are.

Every day we live with how hard it is to watch someone go through this and we experience how difficult it is to care for them. Sometimes it feels like days last forever. Nancy Mace and Peter Rabins wrote the book The 36 Hour Day to illustrate just how long the days may seem caring for a person with dementia. It is a long goodbye.

And yet, sometimes it seems much too fast. I look over at Mom and notice that she no longer looks like the mother I know. She is much smaller, the twinkle in her eye is gone, sometimes she forgets how to write, and sometimes I have to cut her food for her. In those moments I wonder how this all happened so fast. In my mind and memories I still see Mom cooking Thanksgiving dinner for 30 people. Getting every single dish out on time, perfectly cooked, steaming hot. Beautifully golden mashed sweet potatoes without a lump in sight, the marshmallows on top perfectly browned and crisp. I see her in her blue and white apron with the red trim, creating the most perfect pies in her immaculately clean kitchen. She is not the same anymore and sometimes it seems like it happened way too fast.

What saddens me even more though is something I have not heard mentioned when people talk about the long goodbye of Alzheimer’s. We always talk about the long goodbye for the family and friends, but what about for the patient? What is it like to say goodbye to yourself? To who you are and everything you have done? To say goodbye to your family and friends? Years or decades is a long time for them to not only say goodbye to themselves, but to everyone around them.

My family tries as best it can to live in the moment and enjoy what we have, but there are times when I get a sense of just how sad and scary this disease is for everyone involved.

It is a long goodbye which comes much too quickly for us all.

Blessings,

Rev. Katie 

The Great Edamame War of 2010

Edamame in flight. There is an edamame in the air between Jeffrey & Mom

It started out as a nice quiet dinner of spaghetti tacos and edamame. As Jeffrey tried to pick up an edamame on his fork, it launched into the air towards Papa. To which Jeffrey laughed hysterically and Papa said “If you really want to get some height on that, you have to do it this way.” And he put an edamame on the handle of a fork and told Jeffrey to hit the top of the fork. Jeffrey hit the fork and sent the edamame flying across the table.

And that is how the Great Edamame War of 2010 started.

Jeffrey was launching edamame into the air aiming at targets, such as Papa and the water glass. We were all laughing and Jeffrey was cracking up so hard that he couldn’t breathe. We had edamame on the floor, in the water glass, and in our laps.

When it started, at first I told Jeffrey to stop flinging edamame because it had been a hard day for Mom and she is usually not one for messiness and chaos. However, she joined in on the fun, putting spaghetti on her nose as if it were a worm, and had a really good time.

One of the difficult aspects to Mom’s illness is that it is so unpredictable. For quite a few days, Mom was doing better than usual and was in a great mood. Then, for unknown reasons, she became much more confused. The confusion and excessive fatigue understandably increase Mom’s depression and frustration. She did not want to do anything or go anywhere, and she was very annoyed.

I had no idea one of the things that would cheer her up, even if it was just for a short period of time, was a food fight.

This illness is just so unexplainable and effects each person differently. We have no idea when Mom will have a good or bad day. Sometimes she remembers things, other times she does not. Sometimes she is happy, sometimes she is depressed and angry. We have no way to predict what will happen, and no way to fix what is going on.

When things are not going well I often worry and feel a need to keep my son quiet and behaving “properly.” In reality though, it is his innate joy of life, his rambunctious childlike nature, that helps Mom. His ability to have fun allows us all to bring out our inner child, which sometimes is just what we need.

Blessings,

Rev. Katie

"My Grandma"

My son Jeffrey and I were at the zoo yesterday. One of the docents (volunteers) at the zoo had a snake to show the kids and Jeffrey went right up to talk to her. As he was petting the snake, he said “My grandma used to volunteer here and she used to work with the snakes too.”

I could have cried when I heard him say that. I know it seems like such a small thing, but to me it was a big deal. It showed just how much Jeffrey knows about Mom because he lives with her every day. I also heard in his voice that he was quite proud of his grandma who used to handle a snake at the zoo.

By living with Mom and Dad, Jeffrey really gets to know who they are. He hears random stories about them from when they were little. A few days ago at school Jeffrey told me he had some bubblegum for Papa (my dad) and he started laughing. He was joking that he was going to pick some tar off of the playground because my dad had told him a story about how during World War II, when there was no bubble gum, Dad used to chew tar instead.

In many Unitarian Universalist child dedications, we say we give children roots and wings. The roots are their family background, tradition, where they come from; and the wings are the encouragement and acceptance that set the child free to be their own person.

I feel like Jeffrey living with his grandparents helps him know and understand those roots in a very different way. The roots really are a part of his life, he is proud of his grandparents, thinks they are fun, and he loves to hear stories about them. He also knows more about me and his aunts and uncles because Mom and Dad can tell him stories about us that even we don’t remember. He gets to hear what we were like when we were kids and the funny things we did. Jeffrey feels a connection to something larger than himself since he knows these roots so well. He will comment on things he does or traits he has and say, “I think I got that from Mommy” or someone else in the family.

The gifts Mom and Dad give Jeffrey just by living with him and sharing who they are with him are priceless.

Blessings,

Rev. Katie

To Nag or Not to Nag?

We spent much of the day today preparing for Mom to go out to a church function tonight. Dad talked to her earlier in the day about going and she had agreed to go. Then around dinner time, Mom decided that she did not want to go so Dad, I and my son all tried to convince Mom to go out tonight.

At the Cleveland Clinic Health Talk about Parkinson’s disease, we were told that family and friends of the patient should not nag them. We should not remind them to stand up straight when they walk, we should not tell them repeatedly to do something.

Tonight though, we were nagging Mom and I was not going to let up.

You see, socialization is one of the best things for Mom. It is part of her “treatment plan.” The best thing for her to do today was go out and be with other people. I did not feel like we could back down and just not let her go because that would make her more depressed and lonely. It would bring her spirit down and make her feel worse.

So after much talking, or nagging, Mom went with us to church. She socialized, she walked around and talked to people on her own. She smiled, laughed, and had fun. She said after we got home that she is glad she went. She had a good time and it made her feel better.

I really want to respect the “no nagging” rule, because none of us likes to have people nag us about doing things. However, what do we do when not nagging means letting someone harm themselves? It is kind of like how I have to tell my six year old son to look both ways when he crosses the street. I remind him every time, because he keeps forgetting.

Sometimes, for all of us, the thing that would help us the most is the very thing we resist doing. At those times, we might need someone to nag us. To almost drag us out of the house so we take care of ourselves. I know I have needed my husband to do this for me, and at times it literally saved my life.

It is a hard balance to strike, but on days like today, it is well worth it.

So, nag away (responsibly and with compassion) my friends.

Blessings,

Rev. Katie

Where are the Dogs?

Many times a day, Mom asks us “Where are the dogs?” This question used to drive me crazy. I felt like every five seconds I was looking for the dogs, calling them in from the back yard, looking for them in the basement. I would tell Mom where the dogs are and then try to tell her all the reasons she does not need to worry about them.

Finally I realized that Mom was not really asking me where the dogs are. I had to stop responding to the question and respond to the emotion behind the question.

Mom is always wondering where the dogs are, where my son is, where Dad is, where my husband is. What she is really asking is if we are all safe. Mom loves us and just wants to know we are all ok. She was a stay at home mother, so she was always keeping track of her five kids, husband, and two dogs. That is who she is and it gives her great anxiety not knowing if we are safe.

So now the questions, “Where are the dogs?” and “Where is Jeffrey?” do not bother me anymore. What Mom is really saying is “I love you.” So we will search for and find the dogs, usually sleeping on the couch. And we will make more of an effort to communicate with Mom about where we are. We can write our location on the dry erase board in her bedroom so she always knows where we are and who is picking up Jeffrey from school.

People with dementia often ask repetitive questions or make repetitive claims about things. Often times they repeat themselves not because they can’t remember, which is our first assumption, but because they have a recurring feeling. Questions about the location of a person are often not actually questions, but an expression of the emotion that they care about someone. Claims that someone stole an item (a common statement made by people with dementia) may not be an accusation, but really an expression of a feeling of loss. Loss of ability or control.

Listening to the emotion and not just the words is a practice that can help us in all areas of our life, not just with our loved ones with dementia. There is usually an emotion driving what we are saying and if we can get to that emotion, we can get to the heart of the matter.

Blessings,

Rev. Katie

Quote of the Day

"Validate the feeling behind the words. Even if you are unable to understand what is being communicated, look at the non-verbal signs of emotion. Is she upset? Joyful? Afraid? Respond accordingly providing lots of affection and comfort."

- Understanding Behavioral Changes in Dementia

When Are You Moving Out?

Probably at least once a month someone asks my husband and/or me if we are moving. When are we going to get a house? A year ago when we told people that we were going to move in with my parents, many people either thought we had serious money problems or we were just plain crazy.

I know what we are doing is counter-cultural for many Americans. We have voluntarily chosen to move in with my parents, because we want to live together. We don’t need to do it for financial or child-care reasons. My parents are both vocal about the fact that this is our house now, as a family. We pay rent, like we paid our mortgage.

So, why did we chose to do this? I chose to do this because dealing with this illness is not something Mom and Dad should have to do alone. My husband and I were fortunate enough to have the option of moving and helping with Mom’s care, and we wanted to use the blessings we have in life to their fullest capacity. And frankly, I did it because I thought if I die tomorrow, I would regret that I did not spend more time with Mom and Dad and help them. I am their daughter, Mom and Dad cared for me, and I want to do the same for them. We also wanted our son to know his grandparents and know what it is like to live in a multigenerational community.

It is even more surprising to people that my husband actually enjoys and wants to be living in his in-law’s house. So, why does he do it? I will let him tell you:

“It is a way of showing that I love my in-laws. By being with them even when it is not a fun dinner or special occasion, it shows that I love them in a very real way. Like most people, we say that family is important, but we want our actions to actually match our words. We want Mom to spend as much of her life as possible living at home with family around her. I know that Dad can’t care for Mom alone. He needs emotional support and he needs the time to take care of himself. By being here we can make sure he has that time.”

Living together in this way requires a different kind of relationship, a real relationship. It means that we communicate and talk to each other. We have to tell each other what is working and what is not or we will all be miserable. For this kind of community living to work, we have to be honest and vulnerable and that is not always easy. Our relationship is about constantly re-committing to each other. We realize that we can’t make it work all at once, we have to go back and make it work over and over again.

Living in this house also means we have a lot of fun. We laugh all the time. Mom and I watch murder mysteries together. Dad, Jeff, Jeffrey and I bike together, often with friends. Mom and Jeffrey try to scare each other all day (it’s an on-going joke with them). We make spaghetti tacos for dinner, we burn pizza and the fire trucks arrive.

So, we won’t move out unless Mom and Dad ask us to, or somehow this living arrangement becomes a safety issue, particularly for our son.

Living together is fun, sad, frustrating, scary, boring, exciting, exhausting, supportive, caring, and loving. It is just life, in all of it’s ups and downs. We are just choosing not to live it alone.

Blessings,

Rev. Katie

Quote of the Day

“A diagnosis of Alzheimer's terrifies me. However, my family and friends act as though I have the flu. I've sent them sites from the web, pamphlets, books, etc. No one reads them. No one talks to me about my feelings.”

- Alzheimer's Association, Town Hall Meetings Report

"That Sucks"

At my first retail job I remember getting reprimanded by my boss because I used the term “that sucks” with a customer who had told me some story with an unfortunate ending. Ever since that time, I have known how crass that phrase sounds and I try not to use it. However, there are times in life where this is the only phrase that can capture what someone is going through.

So, what I have to say today is “dementia sucks” and often everything associated with it sucks. Who taught me that? My Mom. My Mom, who is always proper and well spoken says it sucks. I love when she does that, when she is totally honest about what is going on.

Mom has been extremely fatigued for the past few years, and the fatigue is getting worse. On most days Mom is up for a few hours in the morning, sleeps all day, and is up again from late afternoon until after dinner. She is SO tired. Today she asked me what could be making her so tired, and I said it is just part of the disease, to which she replied “that sucks!”

I hate that so much of the dementia and parkinsonism is just something we can not change or make better. We can’t give her medicine to make her less tired (trust me, we have tried.) No medicine completely gets rid of the tremors, medication has not helped her memory or cognition. The random back pain and other skeletal discomforts, which we have now learned are common in parkinsonism, can not be stopped. For the most part, we just can’t fix any of it, and all we can do is manage it.

Management means that most days Mom will sleep all day. Exercise and diet do help with cognition and the Parkinson’s tremors, so we try to keep up with that. Mom tries to socialize because that is fun for her and decreases depression. We repeat things for her and help her find the words she can not remember. We manage the best we can because in the end, dementia sucks and there is not much we can do about it. Well, at least we can be honest with each other and laugh about it when we can.

Blessings,

Rev. Katie

Quote of the Day

An Alzheimer's patient says of the day their doctor diagnosed them with Alzheimer's:

"I'd never seen a doctor so disappointed to tell someone they didn’t have a brain tumor.”

- Alzheimer's Association, Town Hall Meetings Report

Dementia Abandonment

There is a common occurrence in the life of the dementia patient, that of abandonment by friends and family. Often when someone is diagnosed with dementia, people start to pull away. Friends no longer ask you to go out to lunch, family members stop calling, people stop spending time with you.

This is a sad and confusing occurrence, but it happens often for a loving reason. When friends and family start to pull away from their loved one with dementia, it is often because of the underlying love they have for them. It is hard for a person to watch someone they love get sick. People decrease contact because they are afraid. Sometimes the best way they know to handle the situation without causing emotional pain to themselves, is to deny that the person is sick. Or maybe they are scared because they just don’t know how to communicate with someone with cognitive difficulties.

I can understand that. Sometimes I want to leave. Sometimes it is scary and sad and heart wrenching to see Mom as she is right now. It is sad to eat dinner with her and see food fall off her fork when her tremors are bad. It was scary when Mom used to dump out all her medication which Dad had organized for her, and try to re-organize it. Sometimes it’s frustrating on days when Mom is more confused to have to tell her the same thing over and over again. For me though, I am more scared of the day when she might not recognize me or when we can’t communicate at all. I want to spend as much time with her as I can to maximize the good times because, sadly, things will only get worse, not better.

Abandonment happens with many illnesses. I often saw this with patients in the hospital, particularly with kids. Many times a critically ill child would get a visit from their parents once a week, or less.

While it is scary for us, it is also scary and sad for the person with the illness. I asked Mom a few days ago what helps make her feel better and she said she feels better when she visits with friends. She is happy when she sees her kids and grandchildren, or when she get’s to talk to them on the phone. Community is a way to help deal with dementia.

Everyone deals with tragedy in different ways. By writing this I am hoping people know it is ok to be scared, sad, and angry about your loved one’s illness. If you are scared, talk to the rest of us who are in a similar situation, because we are scared too. I hope people with dementia know that even though some people abandon you, which is very painful, it is not your fault they have done so. Most likely it has happened because their love for you brings with it a lot of sadness and fear. I hope the family and friends who are able to keep in contact know what a wonderful, beautiful, and life-saving gift you are giving.

We all do the best we can and if we all keep working together as a community, we will be able to support our loved ones with dementia and support each other.

Blessings,

Rev. Katie

Quote of the Day

"A theme that extended to almost every area of focus illuminated during the Town Hall Meetings was a reported stigma associated with Alzheimer's and the effects on those living with the disease. The impact of stigma was very present in discussion about symptoms, recognition and diagnosis. Many people reported a hesitation in admitting they had Alzheimer's disease for fear of negative public perceptions about the disease and its potential for causing social isolation...Even after the person with the disease has come to terms, denial and a general lack of understanding was still present among family and friends." 

-  Alzheimer's Association, Town Hall Meetings Report

The Effects of Blogging

While it has only been about a week, we have noticed quite a few effects on our lives from writing this blog.

One unexpected result is that it has brought us closer together as a family. Mom mentioned that she used to think we felt she was “lazy” and we didn’t believe she was sick. The blog has helped her know what we feel and it has shown her how we do take her illness seriously. My son has also become more involved as he sees this as our story which he can participate in. I like that we sit down as a family each day and read the posts together and discuss if we want to change them or if we are comfortable with what they say. This process also enables us to review the day and talk about what is working well and what we need to do better.

The blog has gotten over 500 hits in the past week, which is encouraging. I hope this means that the blog is something which will help other dementia patients or families of loved ones with dementia. How big that effect will be is still yet to be determined.

I have also received some feedback from some of our friends about the blog. They say the blog is helping them know more about what life is like for us on a daily basis, which will enable them to care for Mom and Dad better.

There are a few challenges to the blog as well. As we write more and more, Mom, who is generally a very private person, worries a bit about being so public. She still wants to keep going with the blog though because she is encouraged to hear that other people in our situation might be helped by hearing our story. She is encouraged also by people who leave comments about their own experiences.

Overall, I had no idea the blog would help Mom feel more comfortable in her own home. I think what this tells me is just how important it is that we keep in communication with each other. I didn’t know we were not letting Mom know how seriously we take her dementia and that we know she is sick, not that she is lazy or trying to get out of doing things.

This blog has been a kind of spiritual practice for our family, and it has brought us many gifts.

We are all looking forward to seeing how this blog effects all of us in the future, not only our family and friends, but all of the people we are yet to meet through the wonders of the internet.

Blessings,

Rev. Katie

Quote of the Day

Bradykinesia, or slowness of movement: a common symptom of Parkinson's disease. Common activities, such as getting dressed or bathing, may take a patient several hours to complete.

- Parkinson's Disease: Overview. Handout from the Cleveland Clinic's Health Talks series. October 9, 2010.

Quote of the Day

Dementia literally means "apart from your mind." Coming from "de" meaning apart and "mens" meaning mind.
-Not a direct quote, but found if you look up the latin roots of the word dementia.

Wearing Symbols to Share Our Stories

Photo by Jeff Norris

I have preached quite a bit in our Unitarian Universalist churches about how important I believe wearing symbols of our faith is in our lives. When we wear symbols we are showing other people what is important to us and telling them a little bit about who we are. We are also giving each other an invitation to share our stories and be in community with each other.

Many different groups and causes such as breast cancer, the Livestrong foundation, and autism, have rubber bracelets which people wear to raise awareness about their cause. The Alzheimer’s Association is no different and I have come to realize over the last year just how important those rubber bracelets and other symbols can be.

We have noticed people wearing shirts from the Alzheimer’s Association, or the purple Alzheimer’s Association bracelets throughout the year. This has been a wonderful way for us to make connections with other people dealing with some of the same things we are dealing with. This has allowed us to be supportive of each other and hear each other’s stories.

Wearing these symbols tells each other that it is alright to talk about this illness, no one needs to be alone. It tells us that there are other people who will support and care for us. It shows others a little bit about who we are, without us having to say anything. The symbol says, “Alzheimer’s disease affects my life.” 

Whenever I see these symbols, I am reminded of the benediction by my colleague Rev. Wayne Arnason:

“Take courage friends.
The way is often hard, the path is never clear,
and the stakes are very high.
Take courage.
For deep down, there is another truth:
you are not alone.”
- Unitarian Universalist Hymnal: Singing the Living Tradition, #698

By wearing these symbols, may we continue to raise awareness and create a community of support and care. I look forward to sharing our stories with each other.

Blessings,

Rev. Katie

Quote of the Day

"Respond to the emotion, not the behavior. If your loved one keeps asking about a certain family member, he or she may need reassurance that this person is healthy and safe. Avoid trying to reason with the patient, this may often lead to frustration for both of you, because he or she may be unable to follow lengthy explanations."

- Understanding Behavioral Changes in Dementia

Accessibility and Respect: Shopping With Mom

The other day Mom and I went out shopping, which is always fun for us because once a year we used to go to the East Side of Cleveland for an annual shopping trip when I was younger. (In you live in the Cleveland, Ohio area you know of the East Side/West Side split.)

Anyway, things have changed a lot since then. It takes a few hours for Mom to get ready before we go out now. Also, going to the East Side, which is about an hours drive, is too long. Mom is really only feeling well for a few hours a day so it does not make much sense to drive two hours and waste that time.

So, we went local, but the mall with the store we needed is in an outdoor mall, which poses a lot of problems for someone with limited mobility. At the outdoor mall there is no handicapped parking outside of the shops so even the handicapped sign didn’t help. They only have metered parking by the stores, which is usually full, or parking lots which are quite far away. I was really worried about dropping Mom off by herself in the rain and having her wait for me while I park in the garage.

As it turned out, the Universe was looking out for us and there was a metered spot open just outside MAC Cosmetics. Hallelujah! This was a lucky day. Being with Mom has really made me realize just how inaccessible most of our society is for people with limited ability.

We had a great time at the cosmetics store, mostly because the makeup artist treated Mom like a human being, taking into consideration her abilities. Often people either ignore Mom because she walks and talks a bit slow, or they ignore the fact that she has any limitations and don’t connect with her at all. This makeup artist though took the time to pay attention and see Mom for who she really is. When finding makeup for Mom, she noticed Mom’s tremors and she tried to find products that would be easier for Mom to control and she did not try to sell her a ton of things she can’t use. She didn’t act like Mom was “older” or “different” and therefore didn’t need/want makeup. She also did not yell loudly, assuming Mom could not hear, or do any of the other common things people do with the older population.

I have noticed more and more how people treat Mom differently at times and make a lot of assumptions based on how she looks. I don’t think people ignore others who are older or have any other number of limitations differently on purpose, they just fail to stop and take the time to see them as a person.

It is a blessing to find people who treat Mom as the valuable and beautiful person she is.  So, thank you Maggie at the MAC Cosmetics store in Crocker Park. 

Blessings,

Rev. Katie

Quote of the Day

"I am Sylvia. I was Sylvia before I was diagnosed, and I am still Sylvia after being diagnosed. I'm still the same person — treat me the same way. Talk to me the same way. Include me in the conversation as you would before."
- Early Stage Alzheimer’s patient
Quote from Voices of people with early stage Alzheimer's

Quote of the Day

Some statistics about Alzheimer's Disease:

5.3 million people have Alzheimer's

Alzheimer's is the 7th leading cause of death

$172 billion is spent annually on Alzheimer's

There are 10.9 million unpaid caregivers

- Statistics from the Alzheimer's Association

Tips for Responsibly Posting About Kids

Many of us post things about our kids online either in blogs or in status updates on facebook. We post nice things, such as “My daughter said the cutest thing today...” or not so pleasant things like “My son threw the most embarrassing temper tantrum in the store today!”

We are our kids parents, but we are not their owners. We do not have permission to post whatever we want about them.

I have been preaching since my son was two years old. I think my son is one of the most spiritually aware and smartest people I know, therefore, I have learned many lessons from him. I could probably write a sermon based on something wise he has said every week. However, I know not to do this without his permission.

In seminary we learned that whenever we use a story about someone, no matter how simple the story seems, we must ask them before we use it. I do this with my son as well. I let him know what the story is and why I want to use it and I ask him if that is alright. At first I thought that since he is young maybe he won’t really understand so even if I get his permission, am I really still taking advantage of someone not old enough to make this decision? Well, that is still a question, but I try to do be as responsible as I can.

For a while my son loved that I preached about him, this year though, he really does not like it. I figured this out when I gave a sermon with a story about him in it this summer, which I had given a year before. After the sermon, he was upset that I used the story. I told him he said it was ok to use it when I gave the sermon before, but he said now he doesn’t want me to use it again. Now I know to ask his permission every time. And I know to read these blog posts to him before I post them, just like I have my mom, dad and husband read them and approve them before I post.

Some kids may love the attention this public information gives them. Many people talk to our son after a sermon, and he used to like it. Now he sometimes thinks people are making fun of him, especially if they laugh at a cute story I tell about him.

I hope that we all are very aware of how we are exposing our children by writing about them publicly. Many of us won’t post photos of our kids for fear about their physical safety. But when we post about what our kids are doing and saying, we are posting about their emotions and thus risking their emotional safety and privacy.

And for those of us who know these children and read about them, please be respectful of the fact that they may not want to talk to you about what their parents wrote about them. No matter how cute or special the comment was. For many young kids, this can be seen as embarrassing or just an overload of attention.

Please ask your children before you post anything, you never know what is alright with them and what is not. And know you will mess up anyway, so be open with your kids and apologize when you need to.

Blessings,

Rev. Katie

What Happens at Night

Actually, I don’t really know what happens at night with my mom because their bedroom is on the first floor and we are on the second. But I know that sometimes when I am watching TV late at night and they are sleeping, I hear my mom screaming in terror at something she sees but is not real.

I know from Mom and Dad that Mom has hallucinations which are much more prominent at night than during the day. Sometimes they are scary, sometimes they are not. But much of the time, my Dad is awake and trying to talk to her so she calms down. Mom does not usually remember these “conversations” and she remains half asleep. Hallucinations are common in people both with dementia and Parkinson’s.

Often the hallucinations are not so much of a problem, Dad and Mom even joke about how “busy” she is at night. I noticed it is a problem today though because today Dad is in what we call a “funk” in our family. You know, those days when you are in a grumpy mood and you don’t really know why. Well, I guess Dad was up almost all night talking to Mom and her “friends” and he is exhausted today. No one functions well when you are that tired.

I didn’t realize until today how much I depend on Dad. I guess I have this idea that as long as he is happy, everything will be ok. I think that I get scared when Dad has a hard time because he is someone who has taken care of me. Even if he was not medically stable at times, he has usually been emotionally rational and strong. So when he is having a bit of a hard time, I worry that something must really be wrong. I am living in the house I grew up in, where as I got older, no matter what happened, Dad remained level-headed and rational. Dad took care of me, and I sometimes I forget I am not just his child anymore.

I think that is one of the things which can be hard about moving back in with your parents when you are older, especially if it is the house you grew up in. You have to re-define your relationship as more than only parent and child. We are now both adults and I can care for Dad, just as he cared and cares for me. I think I need to remember that my Dad is not indestructible. Hopefully I can help Dad, as he has cared for me, when he needs it.

Blessings,

Rev. Katie

Quote of the Day

“I encountered family and friends who were reluctant at first to accept my diagnosis, and it meant dealing with their denial. It would be helpful for them to accept it rather than pretend it doesn't exist."

- Early Stage Alzheimer’s patient

Quote taken from: Voices of people with early stage Alzheimer's

Where is the Light?

We finally got the new version of iPhoto for our pictures. My husband and I spent much of the day using the “find faces” feature which uses facial recognition to find people in photos. Then you can click on a person and see these little close up’s of their face in hundreds of different photos.

We have thousands of photos from the past ten years on our computer and we were clicking on the faces of different people in our family to find pictures of them. When we clicked on the photos for my mom and all of the little square close up’s came up, I was shocked. Here in front of me I had mom’s progression in condensed form. What I noticed is that in the older pictures, even from two years ago, mom has this sparkling light in her eyes. In recent photos what I see now is that the light is often gone and there is more of a dull stare.

In a television interview with my dad, Dr. Charles Farrell, about the Alzheimer’s Breakthrough Ride he did a few weeks ago, he says that dementia is like a dense fog. In these photos, I saw that in my mom’s eyes.

It was very hard for me to see these photos. When you live with it every day, you often don’t notice the changes. How she is much shorter than she used to be, how her hands shake, how she looks so tired. I guess I always assumed the light in her eyes would be one of the things that never changed, but it did. 

It is up to us, those who help care for and support our loved ones with dementia, to get that light to shine again. Even if it is just briefly. I think one of the best ways to do that is by spending time with people. I see the light in my mom’s eyes again sometimes when she sees her grandchildren. I see it when we are out in a group and someone intentionally talks to mom and she starts to feel comfortable with them. I see it when we laugh hysterically at the dinner table over some random thing that happened at home that day.

As we were thinking of names for this blog at dinner last night, I jokingly said “How about ‘Dementia in the House!’” Well, my son cracked up laughing and started singing “Dementia in the house!” over and over again, with a bit of a dance to go with it. The light came back into mom’s eyes as she laughed at the cuteness of our son, who realizes the severity of mom’s condition, but also allows us to laugh about even the toughest of topics.

Mom’s light is a bit harder to find at times, but it is by connecting with who she is at a deep level that helps to bring it back. I think kids do this intuitively and us adults can learn a lot by watching our children and how they interact with the people they love. Some people think we should not allow our children to see family or friends when they are sick because it is too scary, or too much for a child to handle. That is a personal choice that each parent will have to make, and we should respect those choices. I do see though how much our son, just by being who he is, is able to help Mom, and how much he is learning from her in return. As things are right now, I would not change it for the world.

Blessings,

Rev. Katie

Welcome to our House

This is the house I grew up in, since the day I was born. It has changed a lot over the years in order to accommodate our family at different stages. My parents put an addition onto the house about fourteen years ago so we could have more space for our large family at Sunday dinners. They put in a therapy pool five years ago so my mom could exercise, even with her heart condition. Last August my parents turned part of the addition on the first floor into a fully accessible bedroom and bathroom for my mom.

This is now the house that my husband and I will raise our six year old son in, and probably the house my parents will never leave.

This house has seen new babies, pets, numerous weddings, an ordination, anniversaries, cancer, various illnesses, worry, arguments, and immense joy.

In this house, my mom took care of me, my four siblings, and her grandchildren when we were sick. My husband, son and I moved in a year ago and we are here to help care for her as she lives with this illness. Well, really, we are all here to care for each other because even though Mom has dementia, she still has much to contribute to this family and world.

This blog is a reflection on what it is like to live in a house with three different generations trying to deal with dementia. I am writing this blog with the permission and enthusiasm of my mom, dad, husband and son. We realize that what one of us does affects us all and in that spirit, we try to be as collaborative as possible.

We have a covenant in our house, a promise of how we will live together. It is a covenant which is adapted from a popular Unitarian Universalist church covenant written by James Villa Blake:

“Love is the Spirit of this family,
and service is its law.
This is our great covenant:
To dwell together in peace,
to seek the truth in love,
and to help one another.”

We believe that help extends outside the walls of our house and we hope this blog helps many of you out there dealing with the same thing.

Blessings,

Rev. Katie