“Two words have been the foundation of every decision I made across all of my caregiving roles. The two words: safe and happy. Before every choice, I would ask, ‘Does this help my loved one be safe?’ and ‘Does this support them being happy?’” Sue Ryan
There was a moment in the doctor’s office when five neurologists agreed on one word: dementia. In that moment, I looked at my husband, Jack, squeezed his hand, and said, “I love you. We’re on this journey together.” What I couldn’t have known at that moment was how many roles I’d be asked to take on and how, through every single one of them, our love wouldn’t disappear, our love would change shape.
We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we understand caregiving can feel all-consuming. So much so that love can get buried under the weight of daily responsibilities. In this post, we’re drawing from Sue’s chapter, Chapter 6, in the Caregiver’s Advocate Book, Volume 3, titled: “When Caregiving Roles Change, Love Remains.” Her chapter explores five distinct roles caregiving calls us into and how to show up in each one so love doesn’t get lost.
Underneath all five roles, two practices held everything together for Sue: acceptance, honoring everything exactly the way it is, without having to like it, understand it, or agree with it; and presence, staying fully in the moment rather than wishing for the familiar past or worrying about the unknown future.
Tip 1: Step Into the Role of Protector. Make Peace with Difficult Decisions
The protector role asks us to make hard decisions, often quickly, when our loved one can no longer safely make them alone. Sue experienced this firsthand on September 4th, 2017, when a weather report announced that Hurricane Irma, a Category 4 storm, was heading directly toward their home in south Florida, and would arrive on September 10th (which it did).
Jack’s dementia had progressed to the stage where Sue knew she couldn’t keep him safe if they lost power or water, or if they needed to evacuate quickly. She didn’t hesitate. Within three hours of making the decision, they were on the road to Atlanta, where they had family they could stay with.
The drive was brutal. Sue worked hard every day to keep Jack in the exact same routine in order to diminish his anxiety. As they left Naples and were on the road for more than a few minutes, Jack became unsettled and kept trying to get out of the car. They stopped halfway to Atlanta and spent the night in a hotel, where Sue lay on the floor in front of the door in case Jack woke up and tried to leave. For Sue, there wasn’t much sleep that night.
While lying there on the floor, she found clarity: “I’m his protector. I’m making the wisest choices for his safety. I know he would do the same for me.”
What the Protector Role Looks Like in Practice:
Before any major decision, come back to two simple questions:
- Will this keep my loved one safe?
- Will this help them feel happy?
When you’re overwhelmed, these two questions help you gain clarity for yourself and others.
Give yourself grace when protecting your loved one doesn’t feel good in the moment, especially if they don’t understand or agree with your decision. This discomfort isn’t a sign you’re wrong. It’s often a sign you’re doing exactly what love is asking of you right now.
Trust yourself enough to act, even without certainty. In a crisis, waiting too long can put everyone at greater risk. You already know your loved one better than anyone else in the room. This knowledge is enough for you to move forward.
Tip 2: Stay Intentional in the Loved One Role. Express Love in Ways They Can Receive
While navigating that long drive to Atlanta, Sue found herself thinking about their wedding vows. They took on a new meaning and became her compass for how she would care for Jack throughout the rest of his diagnosis.
She shares:
What never changed, throughout our whole journey, was my intention. I wanted Jack, no matter whether he could acknowledge it or not, to feel my love.
As Jack’s ability to communicate changed, Sue made intentional choices to reach him through hearing, sight, and touch. Every time she arrived, she got to his level, looked him in the eye, held his hand if she could, and said: “Hello, love of my life. How’s the man of my dreams?” At some point in every visit, she would say: “I love you more than life itself.”
Whether or not Jack responded in a way she could recognize, she kept saying these because she knew at whatever level he had the ability to receive them, he would.
How to Stay Intentional in the Loved One Role:
Find one consistent way to say “I love you,” something you do every single time you’re together, so it becomes its own language between you.
Reach them through whatever senses still connect: a familiar voice, a gentle touch, eye contact, a favorite song. As their ability to respond changes, let the way you reach them change too.
Keep expressing love even when they can no longer respond in familiar ways. You’re not looking for a reaction, you’re offering a gift. Give it freely, and trust that some part of them receives it.
Tip 3: Embrace the Primary Caregiver Role. Meet Them in the Moment
The primary caregiver role is the day-to-day, moment-to-moment work of caregiving. It’s the decisions, the tasks, and the constant re-calibration required to meet your loved one where they are right now, in this moment, not where they were yesterday or even this morning.
Sue tells a story that captures this perfectly. One evening, she and Jack were watching TV when it was time for him to go to bed. He wasn’t ready. After a couple times encouraging him to come to bed and him not being ready, she said, “I’m going to bed,” turned on the hallway lights, and got into bed herself.
A few minutes later, Jack came down the hallway, walked in to the bedroom, and went straight to the foot of the bed. He put his hands on his hips and asked firmly: “Who are you? I am not going to get in bed with anyone who is not my wife.”
Realizing he was in what she calls ‘a dementia moment’ and didn’t recognize her, Sue said: “I’m so sorry. I must have gotten into the wrong bed.” She got up, walked out, and lay down on the sofa nearby that was facing the door. About fifteen minutes later, Jack’s dementia moment had passed. He walked over to her and said, “Why aren’t you in bed? It’s time to go to bed.” She smiled and went back to bed.
Sue’s response, “I must have gotten into the wrong bed,” came from the place of complete acceptance and being fully present. She didn’t battle the moment or try to correct him. She met him exactly where he was.
Keys to Thriving in the Primary Caregiver Role:
Practice acceptance: Let yourself honor what’s happening with them, even when it’s painful or confusing, instead of fighting against it. Acceptance isn’t giving up. It’s choosing to meet reality with love instead of resistance.
Stay fully present: Respond to the person in front of you right now, not the person you remember or wish you still had. This moment is where connection still lives.
Let go of needing to “fix” a dementia moment: Sometimes the kindest, most effective thing you can do is a gentle redirection, not a correction. You’re not failing when you can’t fix it, you’re loving them intentionally by meeting them exactly where they are.
Tip 4: Be an Exceptional Care Partner. Support the People Who Support Your Loved One
The care partner role begins when others join the caregiving for your loved one, whether they are in-home caregivers, memory care staff, or other family members. Sue sees her role as a partner, not a bystander. There are still some responsibilities that remain with the role of primary caregiver, there are now responsibilities that shift to the role of care partner.
Sue explains:
It’s my responsibility to do everything I can to prepare my care receiver to be in the best position to receive care, and to make sure whoever is caring for them at that time is in the best position to provide them the best level of care.
To do this, Sue created a detailed notebook, in both printed and digital form. It included a wide variety of information about what Jack liked and didn’t like, what conversations he could engage with, his medications, people and stories from his life, and anything else that would be helpful for the caregiver. She kept it updated. She shared it directly with every shift of the care team. She reviewed it with them and asked if there was anything else she could provide them that would be helpful for them. She also told them they could call her anytime, 24 hours a day, if they had questions.
When the care team called early one morning, because Jack didn’t want to get up and take a shower, Sue realized she’d left out two valuable tips:
- Jack had been going to Catholic mass daily his entire life.
- With his work, each morning when he got to work, he and his boss, who everyone called ‘The Chairman’, would meet to go over budgets. Sue told the caregiving team to tell Jack he needed to get up and dressed so he could go to church and then meet with ‘The Chairman’ to go over budgets.
Jack got right up and, if he was ever resistant in the future, they were able to use this successfully each time.
Sue also made it a point to ensure the care team felt seen and appreciated. Each week she brought cookies or a hand-made thank-you card. During COVID, when she couldn’t be physically present, she used a resource the care community had created online and wrote a daily thank-you note. She rotated messages every day to a different department (for example, maintenance, dining, administrative, security, landscaping), until the COVID ban from visiting in person was lifted. The response she received confirmed the employees all appreciated the recognition.
A Few Ways to Excel as a Care Partner:
Put together a simple guide of your loved one’s preferences, history, and what works for them. Keep it updated. It becomes a gift to every caregiver who steps in, and a way of making sure your loved one is still known even when they can’t speak for themselves.
Share the guide with every shift and every caregiver. Consistency of care comes from consistency of information, and you’re the one who can provide it.
Let the people caring for your loved one know they’re seen. A genuine thank-you, a card, a kind word goes further than you might think. They are not invisible. They are your partners in this.
If caregivers are in your home, welcome them with dignity, not just direction. They’re doing meaningful, difficult work on behalf of someone you love, and the more supported they feel, the better care they can give.
Tip 5: Don’t Let Caregiving Replace Friendship. Find Ways to Be Their Friend
Jack and Sue were best friends long before dementia entered their story. They walked hand in hand everywhere. They’d get laughing so hard on walks that they’d have to stop and bend over to catch their breath.
As his diagnosis progressed, their conversations changed. Jack’s curiosity faded. Access to the topics they’d always talked about slowly faded away. Sue had a choice: grieve the friendship they’d had or meet him where he was in the moment.
Sue chose to be intentional. She kept simplifying conversations. She found ways to draw something out of him. Even a shift of his shoulder was a connection. She let being his friend stay part of who she was with him, right up to the end.
The friend role is about making sure your care receiver feels seen and they feel heard. It’s also about having them feel like a person, not just a patient. Whether it’s listening to music together, going on a walk, or simply being present with them without slipping into caregiver mode, the friend role matters.
How to Stay a Friend Throughout the Journey:
Protect time that’s just for friendship: not caregiving tasks, not logistics, it’s just being together.
Meet your care receiver where they are now, in whatever activity or conversation still fits, rather than where your friendship used to be. Let go of the way things were, and find the way things can be in this moment.
With these moments, these micro-connections, look for even the smallest ones: a smile, a laugh, a squeeze of the hand, a shared song, a favorite treat.
A Note on Taking Care of Yourself:
Each of these roles asks more of us. Sometimes they ask more than we know we have access to. None of them are sustainable if we’re running on empty. If you aren’t also taking care of yourself, you cannot protect your loved one, love them intentionally, provide excellent care, partner with other caregivers, and/or fully be their friend. Whatever this looks like for you, prioritize it. Your self-care makes all the other roles possible.
If you find yourself challenged by prioritizing self-care, find an accountability partner who can support you.
Taking Action: You’re Not Alone on This Journey
On the day the hospice nurse told Sue it was time, Sue was holding Jack’s hand, with their fingers intertwined, as they almost always were. In that moment, she felt an incredible sense of peace. The practices of acceptance and presence she’d been building throughout their journey had grounded her. She had been intentional in every role. Because of that, she was able to be at peace in their final chapter together.
Here’s a summary of the five roles and what to hold onto in each:
- Protector: Keep your loved one safe and trust yourself to make difficult decisions.
- Loved One: Express your love intentionally, every single time, in ways they can receive.
- Primary Caregiver: Meet your care receiver in the moment where they are, not where you wish they were.
- Care Partner: Support the people who support your loved one with information, presence, and gratitude.
- Friend: Stay their friend by finding the friendship still possible, even as things change.
Do you have stories of navigating these roles as a caregiver? Tips you’d like to share with others? We’d love to hear from you in the comments below or on our Facebook or Instagram pages.
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