Friday, June 29, 2012

Ask Me: "Why Is This Happening?"

Recently I have attended some trainings about dementia care from Dr. Cameron Camp who's work has really changed dementia care from leaving people to sit in a bed all day, to teaching people with dementia new things and getting them involved in activities. His approach helps them deal with their illness better, increases quality of life, decreases medication, and decreases stress on both the person with dementia and their caregivers.

Dr. Camp taught us two things which he said he never wants us to forget:

1. When someone presents with a "problematic" behavior ALWAYS ask: "Why is this happening?"
2. The answer can NEVER be: "Because this person has dementia."

This is because way too often when someone with dementia is agitated, like maybe yells for the same person at the same time everyday, typically the first response is to ignore them or medicate them to the point where they are so sedated they stop yelling. Then this behavior happens over and over again every day and you never solve anything.

Instead, you could stop and ask the person with dementia "Why is this happening?" Such as, "Why do you call for Emily every day at 2:00?" It might be because that was the time her daughter Emily came home from school every day. It might be because they need help with something at that time each day but don't know the name of anyone in the assisted care facility so they yell a random name until someone comes to help them.

For people who can not respond to the "Why?" question, you can ask yourself, "Why is this happening?" Maybe someone wanders and is agitated at night and when you ask yourself why, you realize it is because they were a night shift nurse all their life and they think they are at work.

Once you know why it is happening, you can think of solutions. Such as teaching the person who yells the name of their nurse (yes, this can be done) or giving the agitated wanderer work-like tasks to do at night to calm her. If you always just think the behavior is "because the person has dementia" then you automatically stop looking for a way to help them and they spend their life agitated, sad, and unhappy. No one deserves that.

When I was at a different dementia training this week, a caregiver was talking about a problematic behavior from one of their dementia patients. So, I suggested Dr. Camp's teaching to first ask "Why is this happening?" The caregivers response was that she would never ask this patient why it was happening because not only did they have dementia but they also had mental illness like anxiety and Obsessive Compulsive Disorder and you don't ask people with mental illness something like that. I said yes, you do, that is all the more reason to ask why. She did not like that answer and insisted that someone with mental illness should never be asked "Why is this happening?"

This really upset me. Why not ask the patient why? She deserves the same respect as everyone else, and just because she has mental illness does not mean she has no idea what is going on, should have no agency in her life, and should not be given the opportunity to say what she needs. Also, this caregiver was assuming that the answer to "Why is this happening?" would be "Because this person has mental illness." However, if we expand Dr. Camp's teaching to mental illness,  you can't just say something is happening "because someone has mental illness" because that stops you from ever trying to help them.

Here is a simple example. I have had anxiety for my whole life over many different things and I have had many problematic behaviors because of it. For instance, when I was little, I did not flush the toilet at home. For my parents, this was a problematic behavior. Now, if you didn't ask why this was happening because I have a mental illness and you thought I didn't deserve to be asked that question, then you could never have helped me.

E.T. - Photo by Jeff Norris
If someone had asked why, they would have learned that the movie E.T. scared the heck out of me and for some reason I thought the flushing of the toilet sounded like a spaceship and E.T. would come out of the toilet if I flushed it. Due to the anxiety, you may not have been able to rationalize my fear away, but if you asked why you could have thought of ways to help me. Maybe a special "anti-alien" spray (which really would have been air freshener) would have made me think E.T. could not come out of the toilet - I was only three years old at the time. (In case you are wondering, I do flush the toilet now, but I still can't look at E.T. without panicking.)

Just because someone has mental illness, that does not mean they can not speak for themselves and don't deserve some agency in their life. True, our answers may not be logical to you but they are real to us and there may be a way to work with the illness and make our lives better rather than letting us suffer just because we have mental illness. And sometimes when you ask us why (nicely by the way) and we don't know, if you think about it enough, you might know why. I might say I don't know why I am manic but my husband may notice that the mania started when a stressful event occurred in our family. Then we have something to work with.

Asking why is really about discovering the triggers of your mental illness, which psychologists say is essential to do in order to manage your disorder. It can help you avoid triggers, work around them, and find new ways to deal with them so you can still have a meaningful life even with mental illness.

Dr. Camp says you need to change the environment to normalize it for the person with dementia so they can be as successful, happy, and healthy as possible. We can do the same for people with mental illness- if we are willing to do two things:

1. When someone presents with a problematic behavior ALWAYS ask: "Why is this happening?"
2. The answer can NEVER be: "Because this person has mental illness."


Rev. Katie

Wednesday, June 20, 2012


As many of you know, for a few months I have been off of medication, except for anti-anxiety medication as needed, and trying to go with just a diet, sleep, and exercise regimen for the treatment of my bipolar disorder. We know 100% that the Paleo diet, regular sleep, and regular exercise keeps my bipolar disorder manageable. However, I can't seem to keep up with those things on my own. I should know that this is not surprising because this is what it is like to have mental illness. The choices many people can make with a reasonable mind are not choices people with mental illness are always able to make. Right now I just can not stick to a eating, sleeping, and exercise plan on my own. So, I am back on medication....again.
Photo by Jeff Norris

One thing we are really coming to terms with is that for me, having a treatment plan that hinges on diet is probably not something I can handle. This is mainly because I have an eating disorder. I guess I have never talked about that on my blog, but I have a binge eating disorder and I just have not been able to stick to the correct diet on my own. So, my eating starts to get worse, which negatively affects my brain chemistry. Then I stop sleeping and exercising and everything goes down hill from there. I end up depressed, manic, suicidal, and back on medication.

I have to admit that I am pretty upset about being on medication again. I really wanted to be able to do this without them. I know it is possible to be well without medication were I able to make the right choices for long enough. The problem with managing mental illness by lifestyle changes is that those changes do not create wellness immediately. You really need a few months of perfect adherence to become fully functional and well enough to have the possibility (not guarantee) of continuing the program on your own. But, if your brain is impaired due to mental illness, many of us can not stick to those lifestyle changes for enough time to truly become well and have a chance of being off medication for long. Some of us can, but not all of us.

My new medication has a host of scary side effects (no surprise there), but one of the medications is supposed to help people with eating disorders so hopefully I can get back to healthy eating. I really do hope that with the medication I can keep the lifestyle changes long enough for them to be part of who I am and slowly decrease the medication so I need less or maybe none one day. That is the goal but in the mean time it is essential to know when you are doing so badly that you need more help.

Right now it is all up in the air. Who knows if I will even be able to tolerate these medications or what will happen over the next few months. I just know we are running around in the same circle and I hope one day we are not doing this over and over again.


Rev. Katie

Tuesday, June 5, 2012

There is a Difference

There is a difference between the mind of someone with mental illness and someone without it. The same things affect us differently and that became very clear to me one day this week.

My husband Jeff and I did not go to bed until 5am one morning. Why? Because we were both wasting time- him playing video games and me watching a TV series on Netflix. Yes, dumb reasons for both of us to stay up so late, but we did.

Katie & Jeff
The difference is that I was a wreck the next day and Jeff was not. We were both tired, but I could not function nearly as well as he could. He was in a good mood, able to do all the things he normally does. I was extremely irritated and my mind was so jumbled I couldn't even decide what I wanted to eat for lunch. I crave sugar like crazy, Jeff does not and everything aggravates me. Our son had a school picnic and I didn't go to it because I could not handle the chaos of tons of kids, games, socializing, etc... Then when we were in the car we had a paper shopping bag that Jeff was looking through. I had to tell him to stop looking through the bag because the sound of crinkling paper was like shooting pains in my head. As annoying as fingernails on a chalkboard. In fact, every noise in the house made me cringe. When I couldn't find something, like my keys, I immediately thought the world was going to end and nothing would ever work out right. 

Jeff had none of those problems. On lack of sleep his system and brain do not simultaneously shut down and go on high alert like mine do. He can get through the day fine, but I have to struggle to get through every minute.

People ask me all the time: "Why can't you stay up late?," "Why can't you eat what other people do?," "Do you really have be so strict about exercise?" "Other people can handle it, why can't you?" I'm just different. My brain works differently and I can't do "what other people do." And the likelihood is that none of us can. We all have our limitations. Some of us have allergies and can't just go outside like other people can. Some of us get migraines and can't handle bright lights. There really is no "what everyone else can do" because we are all different.


Rev. Katie