“When I look back on my caregiving experience, I found a purpose and a true sense of self that I didn’t know I had. Yes, there was a lot of drama and a lot of trauma, but when I look back, I think this was a great experience and something I feel good about doing for the people I love.” Nancy Treaster
There’s a moment in dementia caregiving when you realize your relationship with your loved one has fundamentally changed. Your loved one may no longer recognize your name, your face, or the decades you’ve shared together. How do you keep loving someone through this? How do you stay present when the person in front of you is both familiar and a stranger?
We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve navigated these moments personally and are sharing some of our most impactful lessons in the book The Caregivers Advocate, Volume 3. Nancy’s chapter, Love Beyond Memory, is chapter four. She’s sharing what she’s learned about showing up, staying present, and working to keep finding ways to connect with your loved one as their memory fades.
Tip 1: Don’t Flip the Switch
After a dementia diagnosis, it can be tempting to immediately shift into full caregiver mode. You want to do everything right and you want to be prepared. If you flip the switch too quickly from spouse or child or friend to caregiver, you risk losing something precious: your relationship itself.
Stay in Your Relationship Role as Long as Possible
You are still a spouse, a partner, a child, a sibling. You don’t want to lose this relationship too quickly. Especially in the early stages of a diagnosis, your loved one still needs you to show up as the person they’ve always known, not just as someone managing their care.
Nancy explains:
Ask yourself regularly: When am I just being with my person? When am I just being present with them, instead of trying to manage the diagnosis and be the caregiver?
Nancy had a friend on a walk one day whose husband shared the same diagnosis as Nancy’s husband, Kim. Her friend had been laser-focused on preparing to be a caregiver. And then, mid-walk, she stopped and said, “But you know what I realized? I’m forgetting to be his wife.”
Don’t forget to be their wife, their husband, their child, their friend. Give yourself permission to be that for as long as you possibly can.
Tip 2: Let Go of Who They Were and Love Who They Are Now
This is one of the hardest parts of dementia caregiving. The person in front of you is your loved one, and they are also someone different than they used to be. At some point they may no longer be able to make decisions with you, parent you, or partner with you in the ways they once did.
Honor the Grief — Then Shift Your Focus
There is real grief in watching your partner or parent change. Honor it. Don’t brush past it. But don’t get stuck in it either.
When They No Longer Know Who You Are
Kim had primary progressive aphasia, a language-forward form of dementia. About five and a half years into his diagnosis, they were driving together when he looked at her and asked how she liked driving “this car,” speaking to her as if she were a stranger. Then, a few minutes later, he told her she was going to love his parents. After over 30 years of marriage, he no longer knew who she was.
Later that day, he broke down crying, asking for help finding Nancy, not realizing she was sitting right beside him.
Nancy shares how difficult this was for her:
It still breaks my heart to think that he thought I was gone.
For the remaining four years of his journey, Kim never knew Nancy was his wife. She slowly moved into a guest room and stopped wearing her wedding ring because it confused him. Nancy gradually rebuilt their relationship around a new dynamic, one where she was “the caregiver there to take care of him.” Within this framework, they found closeness again.
Sue had a more temporary version of this experience. One night, her husband Jack came into the bedroom, looked at her in the bed, and said he wasn’t going to get in bed with someone who wasn’t his wife. Sue said:
On the inside, I’m thinking yes, this amazing man. He doesn’t even know who I am, but he’s not going to get in bed with somebody who’s not his wife.
Sue got out of bed and left the room. Fifteen minutes later he came and found her; he was himself again.
Every person’s journey is different. Some loved ones may never forget who you are. Some may forget overnight but remember again by morning. For some, it might be as simple as just leaving the room and coming back in for them to recognize you. Others, like Kim, may not come back. What matters is learning to love the person in front of you, in this moment, as they are now.
Tip 3: Redefine What Connection Means
Connection looks different at every stage of the dementia journey. It doesn’t always require words, or memories, or even recognition. Connection is still possible; you just have to be willing to find it in new forms.
Look for the Moments That Are Still There
Sometimes when Nancy would return from running errands, her husband, even in the later stages of his disease, would see her walk in and his face would light up. He’d walk over, take both her hands in his, look her straight in the eyes and say, “I like, like, like.” While that was all his language could produce, it was real. It was loving. Nancy learned to honor this as his way of expressing love.
Sue and Jack had a small but meaningful ritual, holding hands with their fingers intertwined. As his disease progressed, Jack could no longer initiate this, so Sue would simply place her fingers over his and wait. He’d open his hand so she could slide her fingers in. “I didn’t care that he wasn’t able to initiate it.” Sue says. “What mattered was it was something that was still there.”
Get Creative with How You Connect
Connection doesn’t have to be a conversation. Consider:
- Turning on music and listening together
- Reading a book out loud to them
- Taking a golf cart ride around the neighborhood
- Going for a walk even if it’s literally in circles
- Taking a drive together to nowhere in particular.
Check yourself every day. When was the last time you were just with your person? You weren’t managing them, you were just sitting beside them, holding their hand and being present.
Tip 4: Give Yourself Permission to Get Help Before You’re Drowning
You can only show up and connect if you’re not completely depleted.
Start Saying Yes Early
When people hear about a diagnosis and offer to help, your answer should always be “Yes.” The answer is yes even if you don’t feel like you need it yet. Getting in the habit of accepting help early builds both the confidence of knowing it’s okay to ask for help and the support network you’ll need later. It’s far easier to receive help when you’ve been doing it from the start than to suddenly ask when you’re at your limit.
The caregiving load grows gradually. One day you’re helping with medications. Next, you’re driving to doctors’ appointments. Eventually you find yourself managing everything. While each task may feel small, the cumulative weight can be enormous. As Sue describes it: “When we’re taking on something for them, we’re letting go of something for us, and it adds up.”
If getting help feels selfish, try reframing it. You will be a better caregiver when you’re not depleted. Caring for yourself helps you be a better caregiver for your loved one. Podcast episode 40 of The Caregiver’s Journey, Create Your Personal Support Network: Five Essential Tips / Alzheimer’s and Other Dementias, covers how to build your personal support network.
Your friends can also be your accountability partners. Sometimes they see you starting to drown before you do. Listen to them when they tell you they see you need support.
Taking Action: You’re Not Alone on This Journey
The dementia caregiving journey is one of the most complex relationships you’ll ever navigate. It’s hard. There’s no quick fix or easy answer. There is also meaning to be found in the moments of connection, in the grace of staying present, in the love that persists even when memory does not.
Nancy put it this way:
I found empathy I had no idea I had. I found a purpose and a true sense of self that came out of my caregiving experiences.
Sue adds:
While it may not have been the journey we thought we were going to be on, there are things in it for us as well. What is there here for me? What can I learn?
Here are some things to consider as you move through your own journey:
- Don’t flip the switch. Stay in your relationship role as long as possible.
- Let go of who they were and love with who they are now.
- Redefine what connection means — and keep finding it.
- Give yourself permission to get help before you’re drowning.
Have you experienced a shift in your relationship with your loved one through their dementia journey? What’s helped you stay connected? Share your experiences in the comments below or on our Facebook or Instagram pages.
Using the number for this blog, 67, go to thecaregiversjourney.org where you’ll find additional resources and information. If you find this blog helpful, please share it with other people who you think it might help. Please follow us or subscribe to our updates. We appreciate it.
Connect with us:
We’re all on this journey together.
