An Artist’s Journey Living With Dementia: Perspective From John Wood

At the age of 46, John Wood was diagnosed with Alzheimer’s, but it wasn’t until about a year later that his diagnosis was revised to frontotemporal dementia. Wood has since retired as a teacher but he has been expanding his creative avenues as an artist, exploring art forms such as puppetry. Being Patient spoke with Wood about how he finds fulfillment through art as he journeys through life living with dementia.

• For Wood, forgetfulness and getting lost at work were among the early signs of dementia.
• Some of Wood’s artwork explores his symptoms of dementia, such as his series on aphasia (language impairment) and sundowning (behavioral symptoms that can occur as daylight fades).
• He urges people living with dementia to focus on finding and nurturing relationships with people who are supportive.

Being Patient: What were your early signs of dementia?

John Wood: My first diagnosis was in 2014. Before 2014, at work where I was teaching at the Detroit School of Arts, I would get lost in the building. I would forget where I was supposed to be next and things like that. I tried to compensate for it with notes. I had a clipboard with my schedule on it. When you have trouble remembering, even those things don’t really help. A lot of times when I was having trouble with my memory, it was kind of like, “Oh, John’s just John. He forgets,” because some of the things were pretty subtle. But when I think back on it, there were other times like when I would get lost driving. 

Being Patient: How did you react to your diagnosis?

John Wood: I was originally diagnosed with Alzheimer’s disease. That was a real gut punch. I was 46. I have other medical conditions that contribute to my memory issues. My wife and I were sitting in the doctor’s office with the doctor going over the results and she just turned to us and said, ‘It’s obvious that you have Alzheimer’s disease.’ 

It was shocking. When I got that diagnosis, I was skeptical, but I was really afraid. I didn’t know what that really meant for me. It felt really hard. I reached out to the Alzheimer’s Association because that was my diagnosis and asked for support. They’re great. They’re wonderful. They supported our family in a lot of different ways with counseling and other resources and I did some speaking on their behalf while I thought I had that diagnosis.

Then, the diagnosis changed the next year to frontal lobe syndrome.  

Being Patient: In 2007, you were diagnosed with neurocardiogenic syncope, can you tell us about what it is and what are some of the symptoms that you experience?

John Wood: There’s like a thermostat in your brain that controls your autonomic nervous system, and mine doesn’t work. The furnace is good but the thermostat doesn’t tell it when to stop and start. If I changed positions too quickly or other things, my heart would stop and I would faint. That caused a lot of other issues as far as hitting my head and falling. It was awful. 

My cardiologist here in Michigan recommended that I see a specialist that designed a pacemaker for people with my condition. I saw the specialist and he installed a pacemaker to help me. The pacemaker detects when my blood pressure changes, and then it paces for me so I don’t pass out as much. I sometimes do have issues because there’s a lag. I don’t completely go out and faint, but I’ll get confused. 

Being Patient: Do you know if the neurocardiogenic syncope is in any ways linked with your dementia?

John Wood: It’s hard to really pinpoint exactly how it’s impacted [my dementia] because I can’t have an MRI. I have a huge piece of metal in my chest. But there has been a lack of blood flow over a long period of time. There have been head traumas. There has been a lot of damage associated with the syncopal episodes. 

Being Patient: Did it affect your work at school?

John Wood: At work, I would faint. Nobody wants their teacher to faint. The thing is, I could have faked it. My doctor and I talked about it and I said, “First of all, I don’t feel safe, and if that’s my son’s teacher, he needs a teacher that’s 100 percent. And that’s how I thought about my students. Those are somebody’s kids, just like my kid and I could pass to be C plus John, but I don’t want to be C plus John. I want to be A plus John.

When I felt the decline, I felt that I owed it to myself and my students that they needed the best teacher there.

Being Patient: The period of life when you received your dementia diagnosis and retired from being a teacher must have been extremely difficult. How did you manage the transition?

John Wood: I would say I handled it badly. What really helped me was having friends and family that were very supportive. 

Understanding that part of anyone’s life and especially when you get bad news and a diagnosis like that is, you have to surrender to the will of things outside of yourself. There’s a plan for me. I don’t know what it is and you have to let things go. That’s hard. 

I didn’t really want to retire but I retired really early — way before I was ready. I didn’t know how to even tell people. At first, people were like, ‘Congratulations, you’re retired.’ I’m like, ‘Well, I didn’t want to.’

At that time, a friend of mine wrote to me and said, ‘Hey, a bunch of us are doing this residency at this writer’s retreat in Virginia. Do you want to go?’ I was like, ‘Yeah, that would probably be a good thing to get out of town a little bit.’ 

That was the first step in understanding what my life was going to be. I remember sitting in the middle of the James River after a rainstorm and all the water just flowing past me and just thinking, ‘I gotta let all these things go. I can’t tie myself to being who I was.’ That’s the thing a lot of my family and friends tried to stress to me is: be who you are today. You can’t be who you were yesterday. You can’t be who you were a year ago. Be who you are today. So, I’ve made that my daily medication: to let go of who I thought I was and be who I can be today and be the best I can be today. 

Being Patient: Art has played a big part in your life and you’ve been an artist long before your diagnosis. Has your diagnosis changed the way you approach art?

John Wood: It has. Part of it is what I was just saying. Before my diagnosis, when I was still working, I felt that I had this identity of what kind of artists I was supposed to be. 

I’d been working with someone that organizes art shows and I joined their show in England first. Then we organized a sister show here where we exchanged artwork. That experience of talking to everyone was really great because the other artists living with dementia were saying, ‘I can’t be the artist that I thought I was going to be when I was in grad school.’ 

The labels that we put on ourselves really don’t help. Before my diagnosis, I was a sculptor. And I realized there’s a lot more I want to do. Now, I’m just John Wood the artist. That’s enough of a label. That was very freeing for me because it opened up a lot of different ways of expressing myself and making things. 

One of the most joyous things that I’ve gotten into is puppetry, and really that happened when my son was in preschool. We made marionettes together, and we ended up advancing what we were doing. 

My wife is a professional singer. My son is probably the best performer I’ve ever seen and I make the puppets. So, we did a show together by the time he got to second grade. My wife sang O Christmas Tree in German and my son was this fairy that flew around this little tree. As the fairy cast the wand at the tree, the tree lit up and I was the tree. 

I remember coming home that day thinking, ‘This is the most proud I’ve ever been in my life of anything I’ve ever made.’ It’s just the thrill of doing something beautiful together as a family.

We ended up performing it at other places and it just opened a lot of doors for me. When you hit the pay dirt and you get down to meeting other people that are really into something in a serious way, you find out that there’s so much generosity. People really want to share and help you along your journey. I’ve met a lot of great people that have helped us learn more about puppetry. It is sculpture and it is performance and it’s a lot of things. It’s like the grand opera on a small scale for me up on stage. 

Being Patient: You had a project that you worked on just after your diagnosis. Can you share with us that process?

John Wood: I realized after my diagnosis that I had more time on my hands. That can be a blessing and a curse, depending on what you do with your time. I love to draw. I started drawing more. When the doctor told me that I had Alzheimer’s disease, she said, ‘what would help you is, maybe when you’re at home, instead of your right hand, use your left hand to comb your hair and brush your teeth because it’ll strengthen the way your brain works. 

I thought, well, I brush my teeth a few times a day and I don’t comb my hair because it’s short. Maybe it’d be better if I just did something I do a lot more of. I decided to learn to draw with my left hand. Before COVID, I used to regularly go to the fabulous Detroit Institute of Arts. It’s one of my favorite places in the world to sit in the cafe and to look at the sculptures and it’s just beautiful. I sat there on and off for about a year or so and I drew a sculpture in the courtyard there again and again. I got better at it and I learned a lot. That’s how I got started on that project. 

Being Patient: Some of your artwork, such as the aphasia bowls and the series on sundowning, is related to dementia. Can you tell us what themes you were exploring with those projects?

John Wood: I was really trying to explore what my symptoms were and I wanted to understand them. That kind of work is hard because it takes a long time — I work on some of my sculptures for like a year — and to think about my own symptoms daily for a year is really heavy. 

I sent the sundowning pieces over to the South Yorkshire Dementia Creative Arts Exhibition in England. I got an email after the show from somebody that was from Germany and she said, ‘I saw your pieces about sundowning. I understand my dad better now. Thank you.’ 

I cried and I realized: Wow, my art can really help other people. 

Being Patient: Tell us about the communication cards that you’ve created.

John Wood: My speech therapist helped me design some communication cards. Sometimes I can’t think of a word. People run over you if you don’t speak fast enough. Maybe it’s a Michigan thing. I made these cards and they work. One of them that I’ve used the last is called Pause. It’s me as a time traveller because that’s kind of what it’s like when I get confused. The card is like a little comic book. On the outside it says pause and when you open it up it explains what’s going on. 

I’ll be with someone and they’ll be like going on 90 miles an hour and I’ll say, ‘Just a second.’ I’ll take one out of my pocket and I’ll say, ‘This might help us understand each other better. Can you please read it?

I learned that my art could be more proactive. What I realized was I need to seek joy. If I focus on sundowning, I could make a sculpture over and over and over, and learn more about sundowning in great detail if I study it more. But I don’t want to because going to that place in my artwork is too much to carry around. It’s bad enough living through it. 

What I realized was I’m not that interesting. I don’t want to think about myself all the time. I want to think about the world. 

Being Patient: What’s a lesson that you’ve picked up along the way, which you think could be helpful for others who are along a similar journey? 

John Wood: Go towards the light. You think that certain people will be your friend and be a big part of your life. Then you find that when you’re diagnosed, people are so scared of it. They don’t return your calls anymore. The biggest lesson I learned was: Don’t hold on to that. Go to the people and places where you’re supported, and that you can support other people as well. Reach for those situations and those groups. 

I found great support groups online through the Dementia Action Alliance. The support groups really, really helped me because what I realized was my situation is different from other people’s situations, but I’m not alone. Even though it’s a shade different from this person or that person that has a diagnosis, we have a lot of commonalities. 

It’s good to have those groups that you can speak with about what you’re going through because there are certain things if you said it in a group where people aren’t going through it, they wouldn’t really understand. In other support groups I’ve been to, people just want to complain the whole time and I stopped going to those because that doesn’t help.