As part of our LiveTalk series, Being Patient spoke with Brian LeBlanc and Maureen Rulison about their journey with dementia and how they were inspired to share their story with others.
After Brian LeBlanc was diagnosed with early-onset Alzheimer’s at the age of 54, he got involved in dementia advocacy and began speaking about his experience living with dementia. At dementia conferences, he crossed paths with Maureen Rulison, a board certified patient advocate specializing in dementia, who is now his life partner and caregiver. Being Patient spoke with LeBlanc and Rulison about their journey with dementia as well as their mission to share their story and educate others about the illness.
- For LeBlanc, the early symptoms of dementia included getting lost while driving and missing job assignments.
- After his early-onset Alzheimer’s diagnosis in 2014, LeBlanc was also diagnosed with vascular dementia in 2019.
- LeBlanc noted that people with dementia can still live meaningful lives after their diagnosis, and him and Rulison are raising awareness about dementia through the organization We Are Dementia Strong.
Being Patient: How are the two of you doing under the COVID-19 lockdown?
Brian LeBlanc: I could sum it up in three words: We’re still alive. If you’re together for a weekend, that’s fine. You can get out and do things. But when you’re quarantined and you’re the only two people in the house 24/7, day after day after day, my anxiousness rose to a pinnacle.
That did not make it very easy for Maureen. She saw my wrath. She saw me decline. My anxiousness got out of control sometimes. My anger got out of control sometimes. There wasn’t there wasn’t anything that we could do to get out and go somewhere.
Maureen Rulison: It was tough watching Brian not being to live his passion, not being able to advocate, educate and connect with people live. It was painful to watch him wake up every day and I could literally see the decline.
He fought valiantly. That’s really where we came up with We Are Dementia Strong as a way for Brian and I, mostly for Brian, to continue to reach out and live in his passion and have purpose, and hopefully slow down the progression of Alzheimer’s.
Being Patient: Both of you are vaccinated and had friends over recently for dinner, how was that experience?
Maureen Rulison: Of course everybody else that we saw was vaccinated and we did it outside. We were still maintaining social distancing. We were still being very cautious.
I watched Brian come back alive. As everybody started interacting and talking, he started joining in and it was like he was ramping up to go on stage to be a stand up comedian.
Being Patient: What do you hope to achieve with We Are Dementia Strong?
Maureen Rulison: What we learned after we got started was that it was a rarity for people to have in the same setting a person living with dementia and their care partner share their own experiences with nothing held back, and that includes mistakes.
I admit readily that I argue with Brian. I fight with Brian. But then I ask myself this, ‘If Brian didn’t have dementia, would I argue and fight with him?’ I absolutely would.
Our tenor is that we want people to be able to see us together with all of our imperfections, living life that we love, loving each other and watching Brian progress, but I’m also progressing. I’m learning everyday. I do this professionally, but it’s very different when you’re having the lived experience. I am so grateful for everything that I’ve learned. Now we interview people. People want to know things. We find experts and we bring them on.
People were concerned about us getting into a relationship and I knew that this wasn’t like any other relationship. I knew that if I got into a relationship with Brian, there was never ever going to be, ‘We’re not together’ as the answer to the problem. This was not someone who I could just decide one day I was in love with and the next day I wasn’t.
Dementia challenges that love pretty regularly. But I’m with him forever. I could be the first one to go. So, we have it all set up what’s going to happen with Brian in case I die first.
Being Patient: Brian, you didn’t receive much support from your doctor when you were diagnosed with early-onset Alzheimer’s in 2014. What happened during the diagnostic process?
Brian LeBlanc: When I first got my diagnosis, I was at the neurologist’s office. They ran tests and they did a scan on my brain and this, that and the other. When it came time to get the diagnosis, we were in the doctor’s room. He came in to give us the results. He had a chair facing towards his desk and he started reading stuff off of it and so forth. It was stuff I had never heard of before. He was talking about this ApoE4 thing and this, that and the other.
I stopped him and I said, ‘Listen, while I appreciate you telling me all this background stuff, could you just tell me whether or not I have Alzheimer’s?’
He paused and he said, ‘Yes. You have what we refer to as early-onset Alzheimer’s disease.’
I said, ‘I know about Alzheimer’s because I saw my grandfather die with it and my mother is going on her journey with it right now. I’ve never heard of this early-onset thing.’
He said, ‘It’s just for people that are aged 65 and under but still have Alzheimer’s.’
I really don’t remember too much after that. I just broke down. He just sat there, not a word, for about I don’t like three minutes, got up and said, ‘I’ll be right back,’ and walked out the door.
A couple of minutes later, his nurse walked in and handed me a prescription for Aricept and a prescription for Namenda and said, ‘Here, the doctor wants you to take these and come back in six weeks.’ Didn’t give me what doses to take. Didn’t give me any information about what these medications were supposed to do. Nothing. She walked out and it was just my wife and I sitting there.
My wife said, ‘What do we do now?’
I said, ‘I don’t know. I have no idea.’
We stood up, walked out, got in the car and went home. Then I started looking up information online with the Alzheimer’s Association. That’s how I got involved with them.
Being Patient: Dementia advocacy is a critical part of your life and you met Maureen through this work. Tell us more about your early encounters with each other.
Brian LeBlanc: I got involved with the Alzheimer’s Association in the early part of 2015 because I didn’t know where else to turn. Once I went to them and explained what my background was, I was asked, ‘Would you have a problem talking in front of people and telling them what went on with you and how do you feel and so forth and so on.’
I said, ‘Not at all. That’s what I did in my professional career.’
I went to Fort Walton beach at a daycare and I spoke to people that went there as well as their care partners. Little did I know that Maureen was there in the crowd. She was at my very first talk. The problem was that I did not remember her being there. I remembered very few people that I talked to and met.
After that, I’ve spoken at 29 events. Maureen was at all of those conferences and she spoke with me on stage sometimes. I had no idea whatsoever.
What brought us together was we were in Louisville, Kentucky. Before the conference, a group of us went out to dinner and Maureen was one of four. We were sitting there having dinner and I realized that I had gotten new business cards before I went to the conference. I started passing out my business cards. What I did not know — and she tells me that I knew exactly what I was doing — but I did not know and I will live to that until I die: I pulled out my room key and handed it to her thinking it was my business card. She looked at it and she went, ‘You ain’t playing no Alzheimer’s card on this.’ She just went on and on.
Time passed and here we are. It was a match from the get-go.
Maureen Rulison: I was always interacting with him as a person living with dementia. Once that room key came into play and I stopped treating him like a person living with dementia and started treating him like a man, oh he remembered me then. It’s a lesson for everybody: If you don’t want to be remembered, just treat them like they have dementia. If you want to be remembered, treat them like you’d like to be treated.
Being Patient: Brian, you went through some tough transitions after your diagnosis in 2014. Can you tell us about the transition and what Maureen has meant to you in journeying through your dementia diagnosis?
Brian LeBlanc: I was divorced from my wife. I thought it was a great idea to move and so I moved in with a friend who also had dementia in Tennessee and that lasted for a few months. I moved into an apartment after that and unbeknownst to me while I was in that apartment, I was not doing well at all. I was existing basically on frozen waffles and coffee and the occasional piece of fruit and peanut butter. Nutritionally, I was not doing well at all. I had gotten down to 141 pounds and I hadn’t been that weight in I don’t know how long.
I wasn’t taking my meds. I was not remembering to take my meds. Then comes Maureen. She completely changed my life – mentally, physically and medically.
Maureen Rulison: He was actually taking old prescriptions along with new prescriptions. The doctor would see him and say, ‘I’m going to give you this for your diabetes,’ and Brian would not understand that he was supposed to stop taking the old one.
He did not understand that the insulin that he had was only good outside the refrigerator for 30 days. He would take his medications when he thought about it.
Being Patient: Brian, you would wake up with brain fog and now, there are several strategies that help you cope with the fog. What are some things that have helped?
Brian LeBlanc: Now, I wake up and if I’m in a fog, Maureen knows immediately. She can tell by the look on my face. She can tell by the way that I talk because I mumble. I don’t really talk. She recognizes it. I’ll come out into the living room and sit in my chair, and she’ll put music on for me. That music just kind of brings me back to react to my reality and helps the fog dissipate. Without her in my life, I’m not really sure where I would be right now.
Maureen Rulison: We do more than just the music. When he wakes up in a fog. The first thing I do is get his meds into him because although I am not a doctor, I know that the only major organ in the body that needs sugar to survive – and Brian is a diabetic – is the brain. so I want to get his meds into him right away to make sure that I get his sugars balanced out to what they should be.
I also get him to drink a cup of coffee, and I try to get him to eat something no matter how little to start getting his digestive system working and sending things up into the brain. I find that if I’m needing to pull him to where he mentally stays with me, skin-to-skin contact works. I have a lot of catch phrases that I can use to determine where he’s at and see if it’s pulling him back.
After I have done all of those things, I use essential oil sometimes to bring him into the present. When I see that he’s starting to roll back into the present, then I leave him alone for a while and just let the brain fog work itself out. I check on him regularly. We’ve had fogs that have lasted 36 hours. We’ve had them that have lasted three hours. He had one recently where he stopped talking. He literally couldn’t say a word. He couldn’t make a sound.
Being Patient: What do the both of you think are the biggest stigmas of dementia?
Brian LeBlanc: People think that as soon as you get a diagnosis, you start to die and you have very little time left. They don’t understand that we still live a pretty good life. We still do things. Now, there are days where she makes me get out of the house. She says, ‘I gotta go with so and so’s, pick up some stuff. Come with me. I just want you to get out of the house and breathe in some fresh air,’ because I’ve become a homebody.
[At the doctor’s office,] they look at Maureen and they ask her questions. They say, ‘What does he do and when?’
Of course she knows but she says, ‘I don’t know. Why don’t you ask him? He can tell you.’
Then, they go, ‘Oh, well Mr. LeBlanc, What do you do?’ And I’ll answer that question.
It’s always an experience when you meet new people, and they know that you have this disease or if they don’t know that you have this disease and you’re talking to them for like 15, 20 minutes and the Alzheimer’s thing comes out and they look horrified. It’s like, ‘Oh my God, you have Alzheimer’s?’ It’s just these reactions from people.
Maureen Rulison: People will come up to us in public and whisper to me, ‘How’s Brian doing?’ when he’s standing next to me. One of the things we’ve learned to do is teach people to be comfortable with laughter around us and we try to always make it something that’s got some humor to it.
If they ask me, ‘How’s Brian doing?’ I’ll turn to him and I’ll say, “How are you doing Brian?’
People will look at me and they’ll look for permission to tease Brian and he loves to be teased. I’m okay with them looking to me because the first person that ever disrespects him will be sorry they didn’t look to me first. But in the meantime, realize that he’s not deaf nor is he dumb.
If Brian needs help, I can see him look at me when he needs me to give him some help.
Brian LeBlanc: I’ll even be in the middle of a presentation, and I’ll stumble on a word: I’ll look at her and she knows and she throws me the word and I just take off from there. It’s almost like my brain just has this black cloth that comes down and blocks me from saying something. Well, she has the chords and she raises the curtain.
The interview has been edited for length and clarity.
Contact Nicholas Chan at email@example.com