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