Q&As

I’m Still Here: What It’s Like To Live With Dementia

In a brave and important interview, Kim Ovard opens up about her own diagnosis, and challenges assumptions about what people with dementia are capable of.

Kim Ovard will tell you she has dementia. She will tell you about the embarrassment she feels when people disbelieve her, insisting that she “looks okay.” She will tell you about the guilt that haunts her when she considers the burden that this disease will eventually impose on her family. She will tell you about the fear she carries each day as she anticipates the morning when she will awake fully entrapped by this disease, no longer aware that she has it. And she will tell you all of this with full knowledge of the kind of pre-conceived judgement it invites – after all, this is coming from a person that isn’t “all there.”

Kim Ovard and her dog, Friday.

There is an obvious question here about why a person suffering with dementia would open themselves up to pain by rehashing the nuances and inevitabilities of this condition with a practical stranger. For Kim, there’s an easy answer, “I know I have this condition, and I’m okay with it. I just want to make it okay for everyone else.”

Kim Ovard is 52 and lives with Lewy Body Dementia. Together with her husband and her Internet-famous bull terrier named Tugg, Kim spends her days raising awareness for Alzheimer’s and other social issues ranging from bullying to animal rights. A former animal control officer turned social activist, Kim sat down with Folks to discuss the realities of life with dementia and the hope she finds in the mere anticipation of another day to live.

This is a difficult and even embarrassing question to begin with, but how is an interview like this possible for a person with dementia?

That question is why this story is important. That’s how everyone feels, but that fear prevents us from ever asking. People are afraid to talk to us, and so we lose friends. With dementia, it’s day by day and hour by hour. It’s tough to know what to expect.  A lot of times when I go to speak in public, I want my husband around because he can pull me out if I can’t find my words or I keep repeating myself. Honestly, agreeing to something like this is scary. Yet I’m determined to help, so let’s do this.

People seem to have a specific notion of what it means to have dementia, what’s the reality?

The reality of being diagnosed with dementia is straightforward: people treat me like I am an idiot, as though I am not here. I constantly get, “You don’t look sick, everyone forgets things.” Each day, I’m afraid to tell people how I feel. Usually, they don’t want to know or simply won’t believe me because I look okay.  People pull back because it will hurt to lose me, and they treat me like I can’t understand anything anymore. My family was in denial, and they still kind of are. They don’t want to believe this is happening.

The reality of being diagnosed with dementia is straightforward: people treat me like I am an idiot…

It seems inhumane for someone to make you convince them that you’re actually sick. How do you respond to disbelief?

That is a funny thing. I don’t fight them. I’m 52-year-old and I do more than most people. Honestly, I just don’t push it. If they’re around me enough, they eventually see it. I don’t look for sympathy.

Could you tell me a bit more about why is it scary to tell people the truth about your condition?

Imagine if you, a writer, told me that you had dementia. Now I’m wondering if you’re going to get my story right. I’m wondering if you’re going to remember my words. As soon as you’re diagnosed, people treat you like you don’t exist and talk around you. Honestly, they don’t know any better, they go by what they read on the internet. I just want people to know that I’m still here.

Could you unpack what you mean by “I’m still here.” There seems to be a lot of meaning embedded within it.

There’s a lady that I know who is familiar with my diagnosis, and she thinks I’m sicker than I am. I still function. I still work. Anyway, we were in public at a comic con with my dog and she was there and came out in front of the booth and asked me how traffic was that day. We’re in a big convention center and I said that it was busy. The next thing I knew, she walked up beside me and took me by the shoulders and shook me. She said, “Kim, I’m talking about the traffic outside.” I had answered the question right and I had heard the question. Yet because I have dementia, she assumed I was off. This was someone I knew. This is the kind of discrimination that we face. It’s really hard. I want to remind people that I’m still here!

The scariest thing for any of us is that we might lose our ability to communicate that fact, but we’ll know what’s going on. It’s scary to be us, but then it’s scary to know what I’m going to do to my family. That’s the worst part. But I’m still here.

You’re most afraid of what this will do to your family? This seems counter-intuitive. Haven’t you got enough to be concerned about?

It’s true, the worst part of having dementia is not what I face, it’s the knowledge that eventually I might be bed-ridden. I’m afraid of what that will do to my family. They’re going to lose me, so I try to protect them by hiding what’s going on. You’re right, common sense would say that everyone should take care of me, but I work hard to protect them. They want to fix me, but they’re slowly realizing they can’t help me.

There are states that offer assisted death, which I couldn’t do it because of my faith, but I’m not sure it’s a bad thing. If I’m going to be a vegetable, I’m not sure that I would just rather die than put my family through all of this.

It’s scary. Could you imagine losing yourself?

I can’t. That terrifies me. Before your initial diagnosis, did you know something was wrong?

When dementia hits, it starts with simple things. We know something is wrong, but pinning down the symptoms is like playing whack-a-mole. Every day is different, so it’s tough to put your finger on it. All we know is that we’re not ourselves anymore. We can’t pay the bills, even though we have all your lives. We can’t find words, everything becomes a “whatcha-ma-call-it.” We get lost on roads that we have driven all our life. We can’t find our way in a building or out of a simple parking lot. We become a kind of masquerader, where we try to hide the mistakes we’re making. Of course, people notice but we find a way to laugh it off. By the time all this is happening, if you’re like me, you’re in the best time of life.

When dementia hits, it starts with simple things… pinning down the symptoms is like playing whack-a-mole.

Did you tell anyone?

I only told my husband but only after I had to.

Once you were officially diagnosed, how did your friends and family respond?

Sadly, we lose friends. Again, this disease is hard on our loved ones. I do a lot on Facebook, both with my dog and advocating for people with Dementia. Anyway, I had this one lady contact me and say, “I can’t read your work anymore because it breaks my heart that I’m going to lose you.” Those were her feelings. Can you imagine my feelings? I want to talk from the inside, but people are afraid to listen. It’s no wonder we’re quiet.  

I noticed that you say “us” and “we” when talking about dementia. Why is that? Do you feel like you have a responsibility to speak for others?

I’m just that type of person. My world has always been “we” or “us.” I know I have this condition, and I’m okay with it. I just want to make it okay for everyone else. What matters in the work I do is changing the lives of people like me. My world entails walking out in life and seeing who I can help. I wish the world thought this way, because it would change. Every day I ask who I can help. People with dementia are so often afraid to talk about their conditions. A lot of them say that I’m brave to talk about it on Facebook. For me, I’ve got this, so I want to tell people and show that I can still do things. Yet others are afraid that they’ll lose their jobs, they’ll lose their families, they’ll lose their friends, they’re afraid people will think they’re dumb. I try to speak for them.

What advice would you give someone that has had a loved one diagnosed with dementia – how should they approach them?

You just need to speak openly to them. Allow them to get their fears out there, and this can be scary. They’re already hurting, they’re coming from a place where they’re losing everything they know. Help them. Talk to them. Don’t say, “do you remember that or do you do that?” If they’re calling it a whatcha-me-call-it, try to help them locate that word. If they repeat themselves a few times, there’s no need to correct them. Really, you just need to be there with them. In the stages that they can’t talk, don’t assume that they’re not in there. There’s the language of hugs. Just sit there with them. They’re in there. Just love them. I guess that’s the most important thing.

Could you give me a window into daily life with dementia?

“I’m still here.”

Each day, each hour it changes. Let me give you a bit of my day. At night, I have night terrors from hell, alternate reality that I act out and wake from not knowing what is real. The dream is just like reality only I can’t escape the horror. I try as hard as I can to be the old me, but I have a new normal daily. I might have Parkinson’s symptoms, tremors, wobbles, walk slow, stiff. My ass leaks. I can’t find words or always understand what someone is trying to say. I can’t control my blood pressure, or anything my brain does because I’m just at its mercy.

I get angry. I curse, and cursing is not me, but I know my disease is acting up more than usual when I do. I lose empathy, I find the wrong things funny, and I say things that don’t know I’m saying.

How do you maintain a sense of identity?

This disease is erasing me from myself. My fear is that I will be trapped inside of myself and not be able to communicate, and yet I will know what’s going on outside of me. Imagine hiding all this and more. But if you’re having a good day you can do things like this interview.

This disease is erasing me from myself… But if you’re having a good day, you can do things like this interview.

How do you fight back against this condition?

For me, fighting back is talking and not fearing what will be thought. I speak to many people with this disease. We are in here – still inside our bodies and minds – but treated as though we are not. That being said, I still don’t tell everything for fear of what others might think. I’m still learning to let it all out.

In the midst of this, where do you find joy?

I have found that I am a hope giver. I find joy every day. I believe in God. I see miracles and beauty every day. Life is beautiful. I wish people didn’t take it so for granted. When you leave home tonight, pay attention to what’s around you. Open a door for someone and have them smile. I just get a kick out of life. I think that those of us that are dying sometimes live more than those of you that are living. It’s just beautiful. My joy has to do with who I can help. I wake up every day and thank God for giving me another day that I can help someone. I wished people just lived. I don’t get too down about things. We’re all going to die. I’m going to enjoy mine.