Scott Rose speaks about the memories he shared with his late wife Maureen Patrick-Rose, who was diagnosed with frontotemporal dementia and appendiceal cancer.
Finding moments to be grateful for — those precious but fleeting moments — can be so difficult with the changes that accompany dementia. For Scott Rose, seeking moments of joy and optimism as he cared for his wife Maureen Patrick-Rose was anything but easy. Nonetheless, during his wife’s journey with frontotemporal dementia, also known as frontotemporal degeneration or FTD, Rose reminded himself daily to “celebrate the magnificence of the ordinary,” as he wrote in We Danced: Our Story of Love and Dementia (2021).
It was heartbreaking for Rose to witness his wife’s decline in the face of FTD. But, Rose cherished the small and tender moments he shared with Patrick-Rose, whether it be holding her hands, seeing the brief smile on her face, or sway dancing with one another. Reflecting on the lessons he learned from his wife, both before and after her dementia diagnosis, Rose said he has come to truly appreciate the little things in life.
Being Patient spoke with Rose about his experience as a caregiver for his wife, who died in 2019 at the age of 69, three and a half years after her diagnosis of FTD, as he shared the couple’s journey of fellowship and enduring love in the face of terminal illness.
Being Patient: What inspired you to write We Danced: Our Story of Love and Dementia?
Scott Rose: I felt like in many ways frontotemporal degeneration or FTD silenced Maureen. She had the primary progressive aphasia semantic variant, and that affects your language and your ability to communicate. I wanted her voice out there.
Yes, I wanted to raise awareness of FTD so we can get to a cure and nobody else has to lose a loved one. But I also wanted to share Maureen, the person. She was a quiet and shy person, but also kind and gracious. She had a huge heart.
I wanted her story out there so she was not forgotten. I placed a note in our home about a month after she passed and it said, ‘Maureen deserves a legacy that lives well beyond me.’ Whether her legacy is her joyful spirit and remembering that or raising awareness to combat a disease like FTD, I feel like by releasing We Danced: Our Story of Love and Dementia, I’m making good on that commitment.
Being Patient: You wrote that “FTD reveals the strength, not the weakness, of those who suffer from it.” How did it reveal Maureen’s strength?
Scott Rose: Any dementia can take away a lot of your personality. It can be such an immense struggle and weight on you both in terms of behavior and your ability to communicate. But Maureen in her quiet way, without even realizing it, in many ways rose above that.
I could see her still struggling through things when she would snap at me and have behavioral crashes, as I would call them, or mood shifts. There would be a moment later in the mood shift where she would look at me and ask, ‘Why did I do that?’ She knew what her true nature was.
Even in the very late stages of her dementia, I was able to see that kind, gracious, loving person. Even if she was completely drained on a certain day, I would rest my hand on her hand and she would give a little squeeze. That alone would tell me that’s still Maureen. That’s who she is. That’s the gracious, caring person that she was.
“Even if she was completely drained on a certain day,
I would rest my hand on her hand and she would give a
little squeeze. That alone would tell me that’s still Maureen.
That’s who she is. That’s the gracious, caring person that she was.”
You recognize the disease but you don’t divorce the disease from the person either. Maureen stayed Maureen. She stayed my wife, the love of my life till she drew her last breath. That’s not to say that there weren’t challenges, struggles, tears, things that impacted us. But you have to say, ‘This is the same person that I fell in love with years ago.’
There were moments where she said, ‘I hate you,’ ‘I could just kill you,’ ‘Why are you here?,’ ‘You’re a liar,’ ‘You’re cruel.’ They’re certainly hard to hear from your loved one.
But at the same point as she’s saying these things to me, I’m looking in her eyes and seeing that she’s struggling, like she’s watching herself in a movie that she can’t stop. You have to recognize that person is still there.
Being Patient: Can you share with us her early symptoms of FTD?
Scott Rose: The earliest symptoms of FTD was a breakdown of her executive functions and [following] steps [with] simple things around the house, like she struggled with making coffee, or [doing] laundry or dishes.
We would do dishes together after dinner. I would rinse off a dish and I would hand it to her. She would put it in the dishwasher, but after the third or fourth dish, she [would] instead [dry] it and put it in the cupboard. I would remind her and say, ‘Well honey, that’s dirty. That needs to go in the dishwasher.’ ‘Oh right,’ she would say.
She would start to make coffee and get stuck on the second step. Concurrently, she was also losing her words. I would come home from work and I would ask her how her day was. Instead of telling me a long narrative or a story about her day, as she typically did, she would say, ‘Fine,’ or ‘Okay,’ and use fewer and fewer words. She was losing her ability to tell a narrative.
I think the clincher for me when I knew there was definitely something significantly wrong was [when] we were putting an above-ground pool together. I was on the inside and I forgot to place a chair on the outside. I asked Maureen to bring the chair over.
She saw work gloves on the chair and she froze. You could see her struggling, trying to reason through what she was looking at. After a couple minutes, I said, ‘Well honey, pick up the gloves.’ She did, and I said, ‘Please set them on the ground.’ She did, and I said, ‘Okay,
I stepped out of the pool and I gave her a hug. We sat down together and talked. I said, ‘Honey, does it seem like things are a little off for you? Because it does for me.’ She replied, ‘Yeah, I guess.’ I explained, ‘It seems like it makes you feel sad and I don’t want you to be sad. Maybe we can go see a doctor.’ She kept looking down [and said], ‘I don’t know if there’s anything they can do.’ I said, ‘Let’s get it checked out. Maybe it’s just something like a vitamin deficiency.’
Being Patient: You wrote that “We dance with FTD. I do not mean playful dancing, swaying back and forth to your favorite tunes. I mean a pressure cooker sort of dance, like a high-stakes game of musical chairs, but people keep pulling random chairs out from under you.” What do you mean by that?
Scott Rose: [Maureen] loved to dance. I had two left feet. We took dance classes so I could understand how to dance. I took her out dancing quite a bit. That’s something she really loved to do. We think of dancing in that very specific way.
But there is another [dance] when trauma hits you. It is this weave and bob, this pivot and [adjustment] that needs to happen. With FTD, at least with Maureen’s because it progressed so fast, we had to constantly adjust. We had to be very nimble. A solution for an issue one week didn’t necessarily work the next week or even the next day. It required that constant dance of how can I help Maureen live her best life with everything that’s in front of her, [and] meet her where she’s at?
That game of musical chairs is meeting her where she’s at. She’s playing the game of musical chairs and life keeps pulling the chair out from her. I keep trying to find a chair for her, but we’re running out of chairs. I find her and I guide her to that chair as long as I can, and FTD is taking those chairs away from her. That pivot and [adjustment] can be taxing for caregivers; it can be taxing for the afflicted, but that is absolutely necessary to do throughout caregiving right up until till the end.
Being Patient: How did you juggle between caring for Maureen and your job?
Scott Rose: The first year we were able to make reasonable accommodations. We didn’t know how long this was going to last. The doctor said seven to 10 years, which seemed like a horribly short time, but it wasn’t seven to 10 years. It was three and a half years from diagnosis to her passing. She was progressing at a very rapid pace.
I thought we would have years to work out some of the finer details or increased care, but that wasn’t the case. I watched certain functionality of hers disappear on a weekly or monthly basis. Initially, like I [said], we didn’t make a lot of adjustments. We still did the things we were going to do.
We had planned a trip before the diagnosis down Route 66. I asked her if she still wanted to do that, and she did. We took a month together on the road and had a wonderful time, but we set our own pace so she could still enjoy the travel.
She enjoyed concerts but she got tired quickly, so we didn’t do the evening concerts anymore. We went to matinee concerts so that she could still enjoy her music. We still went out dancing, but we didn’t dance till late into the evening. We stopped early in the evening so I could still bring her home while she wasn’t too tired.
When it became evident she needed more care after the first year, I realized I had to change jobs. I had a job that was very taxing. I was a principal in an international design firm and I would work 50, 60 hours. I would have evening meetings. I would travel. I would do a variety of things. I realized all that had to stop. Maureen required care. She did have trust issues. It needed to be me and I wanted it to be me quite honestly. That’s what you sign on for when you get married.
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An opportunity fell in my lap where I was able to leave the firm, open my own business of one and contract with somebody that was still in the same field that I was [in]. I was able to contract with them and set the terms. In a car ride with this gentleman talking about it, I said, ‘Look, I can’t work more than 40 hours a week, and I want half of those from home. I don’t want to do any more travel. No more night meetings. I need to be flexible enough that if I have appointments or need to do something for my wife, I just go do it.’
Then he made that happen and that really freed up my time. It wasn’t perfect because I was still working, but sometimes I could put her down for a nap or to sleep at night and I could get a little bit of work done that way.
It was fine for about another year and a half, until she got so much worse that she had to be placed in a care facility. I hated to do that because you want to live together. But I had four different professionals tell me, ‘She needs to be in a care facility. She should have been in a care facility.’ That was absolutely devastating to me. That was another gut punch for me.
When I placed her in the care facility, I knew she would be safe 24/7. I knew that there would be somebody looking after her all the time even when I had to be at work. But I still flexed my work hours to make sure that I saw her three or four times a day. I still came to the care facility on my lunch breaks, before I went to work, after I got off work. When I got to the care facility, I took over the care of her. I would feed her or I would change her. I would shower her. I would do those things.
Sometimes, it was simply taking her out, taking her on an outing, taking her to Starbucks, to a park, helping her live the best life that she could at that moment.
Being Patient: During her time at the care facility, you still made wonderful memories with Maureen. Can you share with us some of these memories?
Scott Rose: You have to make the memories because it’s easy to focus on all the negatives. You have to realize that making memories isn’t the same thing as grand gestures. Making a memory can be, ‘She didn’t eat the prior two days, but now she’s eating. Isn’t that wonderful?’
Early on when she was in the care facility, she [paced] a lot. I would come in, she would see me and [say], ‘I have something to show you. Come with me. Come.’ I would come with her and there was nothing she had to show me. She wanted to walk with me. We would walk a lot and it was wonderful to spend that time with her to care for her. It was a whole different level of intimacy in our relationship to do that.
As time wore on in the care facility, despite all sorts of strategies to try to get calories in her, she continued to lose weight. She would walk a bit hunched, a bit slower. She would hang her head a lot. I would come into the room and I would see her slowly shuffling across the large room.
I got into a habit with her when she started hanging her head, where I would come in and I would always say, ‘Ta-da,’ because I’m sure nobody else would say that. I would see her smile and I would see her eyes light up. She would look out the top of eyes at me because her head was strung. She would say, ‘It’s him,’ and she would smile. I would come over and I would give her a hug. I [would] rub her back and hold her hand. Simple moments like that are the things that you treasure.
I would try and sway dance with her a little bit. I would have her playlist on my phone in my pocket. She would hear her favorite music and start humming to it. They had a chapel inside the care facility and a couple of times when it was empty, I would take her into this little chapel and I would turn on Elvis. We danced and she would have that smile on her face.
But not all days are positive. There’s some real hard days where she [had] no energy [and] didn’t want to do anything. You still have to try and make simple moments: Holding her hand, waiting for a smile; maybe she’s eating something and I would bring her chai tea and she liked that.
I remember one day that was very bad for her. It was about six weeks before she passed. I helped her get into pajamas and put her into bed that evening. I sat with her for a while until I thought she was asleep.
I got up to go and she woke up. So I sat back down and I told her that I loved her and that I will always love her. She looked at me very intently. This was at a time where she could hardly string together four, five words in a day. She held my arm and she said, ‘We are us.’ It was so profound for me and I said, ‘We are, baby. You and me, forever.’ It’s kept with me ever since she said that because she was able to show me so much with those three words, how much I meant to her, how much we were to each other.
Being Patient: Is there anything else you would like to add?
Scott Rose: I’ve spoken a lot about the ways that Maureen and I kept our love and relationship strong as best we could. I don’t want the audience to feel like I’m dismissing more severe dementia, that I don’t recognize there are strong behavioral conditions that make it really hard to find that wonderful moment in a day or even in a week.
I facilitate a caregiving support group, and I have people that come and talk to me about what they’re struggling with. Sometimes, I have somebody say, ‘Look, Scott, there just isn’t anything good.’ The more we speak, that person will say, ‘He was actually a bit nicer this week than normal.’ I say, ‘Well that’s good. Cherish that. Write that down. Enjoy that moment while it lasts.’
“Sometimes, taking care of yourself
is simply giving yourself a three-count
and a breath, and starting over.”
It is not easy. It is exhausting. There were times where I would sit in my car and scream and cry and that’s okay. I [would take] a breath and [say], ’I’m going to make her next moment even better.’
You need to take that breath for yourself. They always say the caregiver needs to take care of themselves, and I agree with that. But speaking for many many caregivers, we also know that [it is] really hard to take that time for yourself. Sometimes, taking care of yourself is simply giving yourself a three-count and a breath, and starting over.
The interview has been edited for length and clarity.
Contact Nicholas Chan at firstname.lastname@example.org