“One of the hardest parts in spousal caregiving is accepting that we’re no longer just partners. We’re now caregiver and care receiver. The loss of our emotional and physical partner and the additional responsibilities we’re taking on can really take an enormous toll.” Nancy Treaster
Are you struggling to find balance between being a spouse and being a caregiver? Have you noticed yourself “forgetting to be a spouse” because you’re so focused on getting the caregiving right?
We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve experienced firsthand the complex role transition that happens when your spouse becomes your care receiver.
There’s a moment when you realize your relationship has fundamentally changed. Your spouse, your partner, your companion — they’re still there. The person you used to bounce ideas off of can’t be that person for you anymore. This transition brings unique challenges, from managing new responsibilities, to redefining intimacy, to letting go of promises made years ago.
Let’s explore four essential tips for navigating the changing role from spouse to caregiver — while preserving your relationship and your own wellbeing.
Tip 1: Find Balance in Your Changing Roles
The transition from spouse to caregiver is not immediate. This journey isn’t a sudden switch that flips on diagnosis day — it’s a slow, gradual transition that continues to unfold, particularly in the early to mid stages of this journey.
Nancy explains: “A friend of mine shared a powerful insight about her husband, who had the same type of dementia my husband had.”:
The one thing I realized is I’m forgetting to be a spouse. I’m so focused on getting the caregiving right, learning what to expect next, and how to make sure he’s well taken care of — which are important things to be focused on — that I’m jumping to caregiver and whipping right through being a spouse.
Don’t rush the transition. It’s a dual role that will gradually move from mostly spouse to mostly caregiver over time. This balancing act involves:
- Shifting responsibilities gradually from them to you while giving them grace and space wherever possible to do what they can.
- Maintaining their dignity and independence for as long as possible, even when they’re not doing things as well as they used to.
- Acknowledging what you’re losing, while still providing care and showing them love and patience.
- Building patience and empathy for what your loved one is going through. For more detailed information to support this transition, please watch these two The Caregiver’s Journey podcasts:
• Episode 2: Memory Loss — Four Essential Tips / Alzheimer’s and Other Dementias
• Episode 3: Communication — in the Beginning: Four Essential Tips / Alzheimer’s and Other Dementias / Practical Tips and Candid Conversations
You’re experiencing what Sue calls ‘drip grief’. You’re continuously grieving – a little here, a little there – but continuously grieving. You’re losing your companion even while they’re still here.
It’s reasonable these changing roles can make you feel frustrated, sad, and/or angry — especially when you’re not used to them doing things differently and/or when you have to clean up after them. This is a good time to reach out for support yourself. For example, talk with someone you feel comfortable confiding in.
Tip 2: Give Yourself Permission to Get Help
It’s very easy to get overwhelmed because responsibilities snowball. You take over medication, then household finances, then doctor’s appointments, then all the responsibility of knowing what to do after you talk to the doctor. You just keep adding one thing at a time, and you don’t necessarily notice you’re getting close to drowning.
Nancy shares a powerful example: Her mother cared for her father for 25 years as he had Parkinson’s. One day, her mother called in tears saying, “I think I’m getting ready to have a nervous breakdown. I need help.” Nancy and her sister immediately drove to meet her and realized she was drowning in all the household responsibilities she had taken over slowly but surely, one after the other. Nancy and her sister stepped in and they all worked together to determine how to transition responsibilities and eliminate overwhelm.
When you’re used to having a partner who shares the load, having all those responsibilities come your way can feel like too much. Especially when you’re now taking on responsibilities where you aren’t confident`. It can be overwhelming. As you’re taking on additional responsibilities, this is exactly the time to build your personal support network.
This is when you leverage your friends, family, and neighbors who have been asking, “What can I do to help?” They’re asking because they want to help. We’re often resisting because we don’t want to ‘burden’ anyone. This is about:
- Getting family members involved to divide responsibilities.
- Having friends and neighbors help with specific tasks.
- Accepting offers of help — before you think you need them!
For a comprehensive guide on this topic, we created podcast episode 40, Create Your Personal Support Network: Five Essential Tips / Alzheimer’s and Other Dementias. It’s better to be prepared and understand what support can look like — especially before you think you’re at the point when you need it.
When you do get help, you’ll become less overwhelmed. You’ll have more energy. You’ll have more capacity. You’ll be able to be more patient, and you’ll have more empathy. These help you be a better caregiver for your loved one and for yourself!
Tip 3: Keep Connection While Intimacy Is Redefined
As dementia progresses, the emotional and physical connection you once had with your spouse will change, but this doesn’t mean it has to disappear. This is one of the more difficult aspects of spousal caregiving. While it becomes different, connection is still possible.
The reality of changing intimacy: Physical and emotional intimacy shifts as your spouse’s cognitive abilities decline. What once felt natural becomes complicated. Some spouses struggle with feeling like they’re taking advantage of someone who can’t fully consent or participate as they once did.
Sue shares how she navigated this:
Jack and I learned how to love each other before he had dementia. Even though the physical intimacy in our relationship faded, we did maintain an intimate connection that began when we were first dating and lasted until the very end. Part of our ‘love language’ was holding hands with our fingers intertwined. Even in his last days, we were still able to do that.
Nancy shares:
My husband, Kim, had aphasia so he could hardly talk at all. If I was out running errands and I’d walk in the door, sometimes he would get this big smile on his face and he’d come up to me and he’d grab both my hands and stare me in the eyes and say: “I like, like, like.” I knew what he meant. It’s different, but you know, your heart knows.
I read a report specifically focusing on how to handle sex in a relationship with someone living with dementia. Summarizing what it shared: As long as you both want to continue to have sex, the recommendation is continue. If you’re clearly the one not living with dementia, it’s your responsibility to watch for signs that the other person is not comfortable. And it may be the other way around. It might happen that you’re the one who’s not comfortable. Either way, keep an eye on this part of your relationship and be responsible for deciding when sex is no longer going be appropriate.
In a dementia caregiving support group a woman shared a story about what she said when her husband made advances to her and she had moved on from that part of their relationship. She explained she took advantage of his short-term memory loss and told him: “Honey, not tonight, I’m really tired. But we had sex last night and it was great.” That satisfied him.
Stay in the moment and recognize that while sex may change, you can still have close connection — that kind of connection where you still feel really good about each other.
Cherish what’s left and find activities you can do together:
- Simple physical connection: From holding hands to going on a walk, to doing even the simplest activity together.
- Shared routines: Nancy bought a golf cart and, at three o’clock every day, they would go for a ride together. It was their special time with no one else involved.
- Memory Cafes: These are social gathering locations specifically designed with activities for both the caregiver and care receiver to do together.
Find what works for you and your loved one. While the connection may be different, it can still be meaningful and beautiful.
Tip 4: Give Yourself Permission to Let Go of Promises Made Years Ago
“For better or for worse.” “In sickness and in health.” — we’ve said those words! Many of us also promised we would always keep each other at home if anything happened to either one of us — promises made when we had no idea what this actually meant. For many of us, bringing in outside support, or moving a loved one into a care community, becomes necessary — for their health and ours.
This is often the hardest decision caregivers make, and they feel awful about it on top of everything else. It can feel like you’re admitting you can’t do it. Some worry what others will think.
Nancy shares her experience bringing paid support into the home:
My husband, Kim, was not all happy to have someone new in the house. The first few weeks he kept telling our professional caregiver she needed to go home. It is hard, specifically when you get to the point where you’re getting the support you need, and you also feel like you’re letting the other person down.
Sue had a different experience when moving her husband, Jack, into a continuing care community:
When it got to the point where I recognized the wisest choice for both Jack’s health and safety — and mine, was moving him into a continuing care community, I felt good about it, not guilty about it.
Stay in the moment. Recognize that while sex may change, you can still have close connection — that kind of connection where you feel really good about each other.
Here are three important things to consider:
- Being their primary caregiver can look like many different things. It can be your support of the team in the care community where your loved one is living, so they’re prepared to provide the best care for your loved one. It can be your support of professionals you bring into your home, so they are also prepared to provide the best care for your loved one.
- “For better or for worse.” “In sickness and in health.” is for both of us! The last thing your care receiver needs is for you to be sick. If we’re caring for ourselves as well as caring for them, we’re honoring our commitment.
- You don’t have to be someone’s full-time caregiver to be their primary caregiver. Oversight, coordination, and ensuring quality care is caregiving.
Being a spousal caregiver can actually give you a very deep sense of purpose.
Nancy reflects:
I really grew as a person. I found empathy I didn’t even know I had. I felt good about the role. I felt good about what I was doing for my husband, Kim. It was a wonderful experience, even through thick and thin.
Sue shares:
Early in my caregiving journey with my husband, Jack, it was so important for me to provide the best possible support for this amazing man I loved so much, that I kept ‘shaving off’ care for myself. After a defining moment when I realized I had shaved off more than I had capacity for, and shared this with a friend, they turned my world around with a simple question for me: “What would Jack want for you?”. I realized he would not want me to sacrifice my health, he would want me to take care of myself so I had the capacity to take better care of him — and anyone else who was providing his care.
Consider both your loved one and yourself in these decisions. It’s important for both of you.
Moving Forward
Navigating the transition from spouse to caregiver is one of the most complex role changes you’ll ever experience. It’s not a sudden switch. It’s a gradual journey that requires patience, self-compassion, and the awareness to know when to ask for help.
By finding balance in your changing roles, giving yourself permission to get help, keeping connection as intimacy is redefined, and letting go of promises that no longer serve both of you, you can navigate this journey with more care and compassion.
The transition is gradual. Don’t rush from spouse to caregiver. Stay in both roles as long as it makes sense. Honor what you share together even as things change.
What we always say is especially true for this topic: We’re all on this journey together.
How have you navigated the transition from spouse to caregiver? What strategies have helped you maintain connection while taking on new responsibilities? Share your experiences in the comments below or on our Facebook or Instagram pages.
Using the number of this blog — 56, go to thecaregiversjourney.org where you will 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.
We created the complimentary Navigating Dementia Caregiving Roadmap Guide to walk you through the three stages of your dementia family caregiver journey. We created both an interactive version and a version you can download. They are both available here: Navigating Dementia Caregiving Roadmap.
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