Getting Worse

Photo by Jeff Norris

Over the past few weeks, Mom has been getting worse. Her short term memory is failing. Her ability to understand what we tell her is decreasing. She can’t really figure out how to put on her clothes anymore. Mom seems more sad and depressed. She is sleeping more and we have a hard time waking her up.

The other day, as we were leaving a friends house, I noticed Mom could not walk down the stairs. She just could not figure out how to move her feet. I mentioned this to Dad that night. The next day, when they were walking downstairs to going into the basement, Mom herself told Dad she had forgotten how to walk down the stairs.

Mom started a new medicine a few weeks ago, and that could be what is causing the increased dementia. She has stopped taking that medication and we will see if she gets any better. We are going through what I posted about a while ago, the Medicine Dance.

But who knows if it really is just the medicine. None of what Mom is experiencing is unlikely for people with dementia. It is part of the disease. I guess I did not expect these changes to happen so quickly though.

Dad and I were remembering that it was only four years ago when Mom was diagnosed with minimal cognitive impairment. She was still driving, traveling a bit, cooking, her posture was straight, she had a sparkle in her eye, she could follow a conversation, dress herself, and play games with the grandkids.

Now, so much has changed. Mom can no longer take care of herself, cook, or travel. Her eyes have lost their sparkle and they have a distant foggy stare. All these changes are not easy to handle. It is humbling to dress your own mother. It is a shock every time you see, with blinding clarity, another thing your loved one is loosing. When you stand with them and realize they can not figure out how to pick up their foot to walk forward.

There are many horrible diseases out there in the world. Personally, watching Mom’s combination of dementia and Parkinson’s, which is probably Lewy Body Dementia, I think this disease is fairly scary and traumatizing. It is like your whole life with someone just ends. Everything we have goes away. All the memories, all the fun, even all the hard times; just gone. And it is not only the loss of mind. Along with losing her memories, Mom is losing her ability to walk, dress herself, read, and even hold a fork.

I know there are still many things we can do together and many ways in which our life is wonderful. Sometimes though, the changes get overwhelming and a bit scary. In those times, it helps to talk about it with other people. We need to name what is scary, name the reality of a situation. It seems far less scary when you say it out loud. Naming it helps us deal with it better. In the end, there is no cure, and all we can do is deal with the situation the way it is.

Blessings,

Rev. Katie

Knitting, Dementia, and Spirituality

The orange blanket Mom and I knit together. Photo by Jeff Norris.

I recently remembered a sermon I had written during my intern ministry in 2008. It was about spiritual disciplines and I talked about how knitting is a spiritual discipline for me. The story I used to illustrate this point was about me and my mom knitting a blanket for my son.

I look back on that story from just two and a half years ago, and see how much has changed. Mom can barely knit a few stitches anymore. Yet we still go to our knitting group together and I still help her knit as best I can.

You will see at the end I mention not needing to move home to care for Mom, but just a few months later, her dementia and Parkinson’s progressed quickly. Life lined up to enable me to move back home and still follow my calling as a minister. 

This story reminds me of of all the amazing things dementia has taught me about life, my family, my mom and myself: 

“I have been knitting with my mom for about five years now. I knew this has been a spiritual discipline for me, but one that I thought was too much of a hobby, so I looked for a more traditional spiritual practice, like meditation. I think this past weekend was when I finally understood just how much of a spiritual discipline knitting is for me, and I do not need to look for something more traditional.
    
For months my mom has been knitting my son a beautiful orange blanket which has been a joy for her to knit, but also a struggle. It is a struggle because my mom has Alzheimer’s and so things that were once easy for her to do are now hard. A blanket that would have taken her a few weeks to complete before now takes months.


This weekend the orange blanket was the size of a baby blanket and we thought it was probably done, until we laid it over Jeffrey, who is four years old, and it was too small for him. Mom really wanted to keep knitting the blanket for Jeffrey, but I knew that this had been a hard and time consuming project for her. It was frustrating for her because she would get confused and think she had made a mistake, or she made mistakes that she could not figure out how to fix so she had to wait for a friend who was able to help her. Even making one stitch is a struggle.

She wanted Jeffrey to have the blanket sooner rather than later so I told Jeffrey that Mom really could not make the blanket any bigger because it was just too hard for her to knit anymore.      

But Jeffrey told me he “had a solution to my problem.” He said that I could knit the rest of the blanket so it would be knit by both me and my mom.
    
I thought about Jeffrey’s suggestion a lot. I did not want to take over Mom’s project, but I also knew that she was having a very hard time knitting it and really wanted to see it done so Jeffrey could use it. Eventually I asked mom if I could knit the blanket and she said I could.
    
So one night, I started knitting the blanket. I sat and talked to my dad and husband about life, religion, and family as I knit the blanket. That night Mom could not sleep and she ended up sitting and talking with us too.
    
I tried to make sure that my stitches matched my mom’s so that the blanket looked the same, not half knit by me and half by Mom. I wanted it to be one cohesive piece, a blend of the both of us.     

Since starting seminary two and a half years ago, I have barely had the time to knit. As I was knitting this orange blanket, my husband asked me if I missed knitting. I realized that I did miss it. I was interested in why Jeff asked me if I missed knitting. He said he asked me because I looked focused when I was knitting, like I was in a flow of mind and motion. 

I realized that all of my counting and breathing in Zen meditation was what I was doing when I was knitting. I was letting my mind stay clear, to think of things but not ruminate on them.
    
As I knit that blanket, I was also discovering my place in the universe, as a daughter, a mother, a helper and a person who struggles with sadness and love.
    
Whereas a year ago I would have felt that I had to quit seminary and go home to be near my mom, I was now finding that I would always be with my mom no matter where I was. I also knew that she wants me to be who I am. She would not want me to ignore my calling to be a minister in order to come home.
    
But in that blanket, I was with her. She and I are both with my son when he uses the blanket. The love and hopes that we have for each other and the love and hopes we both have for little Jeffrey, are all in that blanket.
   
It is a prayer for each other that will forever be contained in the stitches of that blanket.”

Stigma Against People with Diseases of the Brain

This image shows the beauty of the human brain.
I wish everyone saw the brain in this way.

The more time I spend with Mom and in the company of others with dementia, the more I feel for how the stigma against their disease affects their care, how other’s treat them, and their self esteem. The stigma against dementia has created a society that sees people with this disease as scary, annoying, unintelligent, weird, unpredictable, and embarrassing.

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

Just Don't Let Anyone Know You're Here

A reflection of how society often does not welcome
people with Alzheimer's.
Photo by Jeff Norris

My family and I were very excited about a race we were planning in conjunction with a large annual community event. The plan was to have the race proceeds going to the Alzheimer’s Association. After the event there would be a tent reserved for people with dementia and their families and friends to all get together to socialize as well as participate in the larger community event that day. We would have items to sell which would raise additional funds for Alzheimer’s. This was shaping up to be a great community event where people with dementia would be recognized and integrated into the larger community. We had been planning this with the community event organizers for over four months.

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.

Restaurant Challenges

Stock photo from freepixels.com

Restaurants are proving to be a bit more difficult these days. The problems which are arising are things I never noticed before and I know most restaurants, having worked at some myself, probably don’t notice are a problem either. I think the key to being more welcoming to people of all different abilities is having more knowledge of the challenges others have that we may not know about if we have not experienced it ourselves. So, here is a list of the challenges I have found recently:

1. Hosts, when you are taking people to their seat, please look behind you to see if the person you are seating can walk as fast as you can. Often the host is all the way across the restaurant waiting awkwardly for us to catch up with him or her.

2. Restaurants are much louder than I ever noticed them to be. We can barely talk now at the table because both Mom and Dad have a hard time hearing us. And when it is loud, Mom gets sensory overload and becomes confused, nervous, and overwhelmed. There is not much a restaurant can do about this, so we can just try to eat out at less busy hours.

3. Mugs with a hole in the handle the size of a quarter are impossible to use for people with weakness in their limbs or who have hand tremors.

4. Some restaurants only have booth seating, which is problematic for people with movement issues, like mom’s Parkinson’s. And looking into the future, I rarely see options for people with wheelchairs either. Having some table seating, and not tall tables with chairs you have to climb into, is a wonderful option. 

5. For the love of God (or that which you see as divine), please do not cover your booths in velvet. People who have a hard time moving can barely get into a booth as it is, using velvet on the seats makes it impossible to slide into the booth.

Blessings,

Rev. Katie