Being Patient speaks with husband and wife Mark and Brenda Roberts about their journey following Mark's diagnosis of early-onset vascular dementia at the age of 62, and the mission of the National Council of Dementia Minds, a nonprofit organization founded and governed by people living with dementia.
The onset of dementia symptoms can upturn careers and relationships. Both the present and future are often filled with uncertainties. Coming to terms with a diagnosis of dementia and the losses that accompany the terminal condition can be extremely difficult. But, with patience, understanding and the help of others, people can find ways to build and nurture their relationships, forging ahead with a life of purpose following their diagnosis.
Being Patient spoke with husband and wife Mark and Brenda Roberts about the challenges they faced as a couple when Mark began experiencing symptoms of early-onset vascular dementia and the steps they took to mend their relationship. Mark, founding member and board of director of the National Council of Dementia Minds (NCDM), and Brenda, NCDM’s executive director, also discussed the nonprofit organization’s vision of educating people about living well with dementia.
Being Patient: Mark, in hindsight, what were the early symptoms of dementia that you experienced?
Mark Roberts: If I was in a meeting and we had a discussion, I would come out and say, ‘I think I should go do this,’ and [my coworkers would say], ‘No, we talked about where you’re going to go and investigate this or talk to this person and start looking at the repairs and costs and stuff.’
My job was to multitask too. I couldn’t do that anymore. I had everything all in my memory [before] and that was just falling apart. Then, I would say, ‘We got to remember to go do this,’ and they [would say], ‘We just talked about that and that’s what we’re going to do.’ The reaction later on with some of the employees just pushed my buttons for anger, and I couldn’t control my anger. All the time I thought it wasn’t my fault, but it was. I didn’t show anger at work, but at home, I showed anger.
Brenda Roberts: Mark would call me throughout the day from work. It seemed, from an outsider’s perspective, [the issues were] always [about] interpersonal conflicts. I couldn’t figure out why [after] 20, 25 years of work with the same people, he now couldn’t get along with them.
Being Patient: The early symptoms of dementia strained the relationship between the two of you. Can you share with us when the two of you separated and how you mended your relationship as a couple?
Mark Roberts: I was putting two bifold doors on the closet. I could not line that thing up at all and kept fumbling around. The short story is I got really frustrated. I tried and I tried and I still couldn’t get it corrected. So, I went to ask Brenda for some help. The whole time that we were trying to work together, there was another voice giving me instructions. I kept saying, ‘No, I don’t want it that way. I want it to be up like this.’ I got very upset, [to the] point that I was ready to pop.
I weighed 280 pounds. People just didn’t mess with me because of my size and I scared the living heck out of Brenda.
Brenda Roberts: This was such a great example of [how] a person with dementia may have one reality and we may have another reality. His reality in putting this door up was so much different than my reality, to the point that he got so frustrated, and [with] all the things that had been happening to this point, that he said, ‘I’ll put an end to this,’ and he went to get a gun.
I didn’t know if he meant he was going to put an end to me or an end to him. Of course, I immediately, in the dead of winter in Michigan, grabbed my purse and [left]. That’s when we separated … Long [story short], I moved in with my daughter.
We had been getting counseling and had no idea this was dementia, even though I had worked in the field. Fortunately, we have in our community a geriatric psychiatrist, and he had a neuropsychologist and social worker on staff. I thought that whatever was happening with Mark was a mental health issue, and so I thought we’ll start with the social worker and they’ll move us up to that psychiatrist on the fast lane. That’s what happened.
“I vowed that I was going to get through
this one way or another. I was not going to
end up losing my wife and my family.”
Mark did great. Because he does love me, he was willing to work on the relationship during that time. Then he started [with] the medical reviews. [Receiving the results from] the neurocognitive testing and [having] the communication with the psychologist was the first time it crossed my mind that we [were] talking about dementia. It was that, the MRI (magnetic resonance imaging), and of course the symptoms that [gave] us the vascular dementia diagnosis.
We’re huge proponents of getting an early diagnosis and getting help early because our relationship was fractured. If you’re going to have years and years and years of being a care partner, and you’re building that on a cracked foundation, what happens when you build a house on a cracked foundation? It falls down.
Because we had an early diagnosis, we had an opportunity to repair the foundation, so then maybe together as a couple, we can weather the rest of this journey.
Being Patient: Mark, what was your initial reaction to the diagnosis?
Mark Roberts: Finding out what it was [meant that I could] mend those fences and work on it. It wasn’t an easy road trying to put things back together, because you still have dementia and things happen, but I was able to apologize. If Brenda [said], ‘Wait a minute Mark, you need to take a break,’ then I knew I was in the wrong.
I’d been a very independent person and I had to give up all that independence. I had to allow my family, especially Brenda, to tell me, “No. You need to rephrase that or you need to go and take a break.’ It’s a learning process for the couple, and it’s still very stressful. But, I vowed that I was going to get through this one way or another. I was not going to end up losing my wife and my family. That’s very important to me. It has worked out real well. The help of being on Zoom with other people, seeing their diagnosis and what they went through also helped me to be more patient.
“You have to find a very caring person,
and you have to find somebody that’s
going to have the time to sit and listen.”
Brenda Roberts: When Mark and I [spoke] at conferences back in the day when we could go and do them live, lots of times after we [shared] our story about the anger, people [were] in line to talk to me afterwards. People always [wanted] to know: [Was] he still angry?
Getting the dementia diagnosis helped us to learn … [ways] to relieve stress. When he did get angry, we spent a lot of time as a family [figuring out], ‘What led up to the anger? What was happening? What could we do differently to help the next time?’ We’d wait till he wasn’t mad anymore. We would come back and explain what happened from our perspective. We asked him when it happened again, ‘Do you want us to do this, that, or the other thing?’ We were very open.
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We relieved the stress. We got the counseling. When there were anger outbursts, we looked at what may have precipitated it. Mark also got busy with trying to manage it with things like music.
Mark Roberts: Yes, [things like] music, reading my bible. I quit doing all the stressful things of keeping up a home. I still mow the lawn but not often, because my daughter and her husband and two boys pitch in. I have learned that I’ve got to back off.
Being Patient: How has the family divided responsibilities of household chores following the dementia diagnosis?
Brenda Roberts: I think we created an environment [where] Mark can do what he wants to when he wants to, but he doesn’t have the pressure to have to [do it]. Mark’s physically perfectly capable of mowing the lawn. But some days [he’s] just not up to it, and so he doesn’t have to mow. But if it’s a good day and he feels like mowing, he can mow and that’s great. The same thing [goes for] Michigan winters. He doesn’t have to move snow. The boys will go out and move the snow. But if he’s up early and he wants to move snow and it’s a good day, he can go out and move snow. We’ve taken that pressure of ‘I have to’ and made it into ‘I can when I want to.’
Being Patient: What’s the mission of NCDM?
Brenda Roberts: Our mission is to develop a core, meaning an army of dementia advocates using the Dementia Minds program. It’s very beneficial to persons living with dementia. It’s very beneficial to the people who come to the educational events. And, it’s very educational for the people who are, like myself, facilitating those discussions.
“My husband’s always been a man of service.
You hear about the five love languages.
His love language is acts of service.
It’s important for him, in terms of feeling
meaning and purpose, to help other people.”
We do discussions for weeks on end, and then we create presentations together. [As] the facilitators in the group, we use [the] exact words [of the people living with dementia]. We write a script for them, sometimes some people write it themselves, and we go back and forth until we get it to say what they want it to say. Then they do various presentations … My husband’s always been a man of service. You hear about the five love languages. His love language is acts of service. It’s important for him, in terms of feeling meaning and purpose, to help other people. When he goes out to the presentations, he feels really good about helping other people understand what’s happening with themselves or their loved ones.
Being Patient: Do you have any advice for people who have just received a dementia diagnosis and are going through a difficult time coming to terms with it?
Mark Roberts: [Connect] with other people and [don’t be] afraid to get on the internet to see if there’s somebody that has the same diagnosis as dementia. I’d really advise that and to talk with some of [these] people. You have to find a very caring person and somebody that’s going to have the time to sit and listen. I think that’s one of the answers that you need to know: start out looking [for] and talking with people.
Brenda Roberts: Based on my experience with the Dementia Minds groups, it seems that – it’s not everybody’s story – [there’s] the black hole. The diagnosis is shocking. It’s not expected. Your whole life plan is altered … There’s a dark time afterwards.
“If you’re in the black hole, it’s okay.
This too shall pass.”
I think what we found most helpful in people with our group is when we connect with people who are living with dementia … I call our friend who lives in Washington the queen of compensatory strategies because she is always figuring out new ways to remain independent. When we connect with people like that and you see how great people are doing, you’re like, ‘I can do that too. I can be that way.’ You start to make your way out of the black hole. Then, in our groups, you start helping other people start feeling good and contributing to society again.
If you’re in the black hole, it’s okay. This too shall pass. Connect with others. If you can help other people in whatever way that’s good for you, it’s a good thing for you as a whole.
The interview has been edited for length and clarity.
Contact Nicholas Chan at firstname.lastname@example.org