Experts provide insights and strategies for navigating this emotional journey
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By Bruce Horovitz, Updated April 24, 2025 AARP
Published March 04, 2025 / Updated April 24, 2025
It is one thing to be a caregiver. It is something else entirely to be a caregiver for your spouse.
Just ask Jay Leno. The former Tonight Show host discussed his new role as caregiver for his wife of 45 years, Mavis, at length on the In Depth with Graham Bensinger podcast.
The comedian, 74, filed for conservatorship over his wife in January 2024, following a dementia diagnosis.
“When you get married, you sort of take a vow: ‘Will I live up to this? Or will I be, like, a sleazy guy [where] if something happens to my wife, I’m out banging the cashier at the mini mart?’” Leno said to Bensinger. “No, I didn’t. I enjoy the time with my wife. I go home, I cook dinner for her, watch TV, and it’s OK.”
Leno described how he has taken over many activities of daily living for his wife. “When you have to feed someone and change them and carry them to the bathroom and do all that kind of stuff every day. It’s a challenge,” he said. “And it’s not that I enjoy doing it, but I guess I enjoy doing it.”
The Jay Leno’s Garage star noted that he and Mavis, 78, now use flash cards to review memories together.
“It’s kind of fun,” he said. “I go, ‘Honey, that’s President Obama. Remember we had dinner?’ [She’ll say], ‘Oh, not me.’ [And I’ll say], ‘Yeah, honey, that was you!’”
AARP asked four national experts in spousal caregiving to offer their personal insight into the 11 critical things that every wife or husband should know before taking on the Herculean task of becoming a caregiver for their spouse.
1. You committed to this the day you got married.
Caregiving for a spouse was a choice you made the day you took your wedding vows, says Peter Rosenberger, who, at age 61, has been caregiving for his spouse for almost four decades. His wife, Gracie, was seriously injured in a car accident just a few years before they married, and she has faced 86 surgeries and, ultimately, the amputation of her legs below the knee.
“What’s the point of marrying if you don’t know if you’ll care for them later on?” poses Rosenberger, who has authored several books on caregiving, including Hope for the Caregiver: Encouraging Words to Strengthen Your Spirit and A Minute for Caregivers: When Every Day Feels Like Monday. “Don’t think you’re up to caregiving because you’re not,” he says. “But you can grow into it.”
No one “chooses” to be a spousal caregiver, adds Samantha Culler, clinical director of the memory counseling program at Atrium Health Wake Forest Baptist Medical Center in Winston-Salem, North Carolina. “Most are thrust into it.”
She compares it to learning to swim while you’re drowning. So, in the end, caregiving for a spouse is typically not a question of whether or not you do it, she says, but how you do it.
2. Create a Plan B in case something happens to you.
“We are all one ankle sprain from this turning into a Greek tragedy,” says Rosenberger. That’s why it’s so critical to think ahead and plan who will replace you, short-term or long-term, if and when you are no longer up to the job.
“You can’t plan for every contingency,” he says, but you’re much better equipped to pivot by doing some advance planning.
3. You can’t put your own life entirely on hold.
Because you are now the caregiver in charge of your spouse’s well-being, it is even more critical to look out for your well-being, says Rosenberger.
The key question he asked himself: “How do I figure this out so I can be productive and healthy while taking care of someone who is not healthy?” says Rosenberger.
That means, he says, he can’t afford to be tired, stressed, or financially flailing if he’s going to care for his wife. “If I’m a train wreck, Gracie’s life becomes more dire.”
That’s one reason Rosenberger brings his work with him during any of his wife’s hospital stays and finds time to write even while he’s at her bedside. “I am always productive,” he says.
4. Avoid operating out of fear, guilt, or resentfulness.
Many caregivers are paralyzed by fear or beleaguered by obligation or guilt — or feel great resentment for the situation they are in, says Rosenberger. He believes that finding acceptance as a spousal caregiver goes hand-in-hand with accepting the reality of the situation. “The goal isn’t to feel better but to be better,” he says. In other words, under the circumstances, you and your spouse are best served when the caregiver takes positive actions and responds to all the caregiving duties with a strong body and mind. “Healthy caregivers make better caregivers… I’m no good to her if I’m fat, broke, and miserable,” he says.
5. Leave room to grieve.
One of the most common emotions experienced by spousal caregivers is grief. We often think about grief as something suffered after a loved one has died, but it can be just as powerful when cracks start to appear in the foundation of a life-long, loving relationship, says Aaron Blight, founder of Caregiving Kinetics and author of When Caregiving Calls: Guidance as You Care for a Parent, Spouse, or Aging Relative.
Sometimes it is anticipatory grief — when we look into the future and anticipate loss. Other times, it’s the crumbling of your and your spouse’s hopes and dreams. Perhaps those dreams were about a special place to retire, or years of travel plans that suddenly go up in smoke. It’s okay to grieve the changes in your relationship or the loss of those dreams you shared. “Giving yourself the space to grieve is important,” says Blight.
6. Hope for the best, but plan for the worst.
Planning for the worst is quite painful, but it is far better than reacting to an emergency without a plan, says Donna Thomson, a caregiving blogger and author of The Four Walls of My Freedom: Lessons I’ve Learned from a Life of Caregiving.
She says part of that planning scenario is conducting a personal reflection on what boundaries in caregiving you cannot or will not cross. For some spouses, the line in the sand is often managing incontinence. Knowing this is a boundary can be helpful in gathering outside resources — such as home care help — in advance.
7. You will need to enlist the help of others.
Spousal caregivers are the ones most likely to overextend themselves for their loved ones, says Blight. This probably has its origins in the marriage vow that promises to care for your spouse “in sickness and in health.”
Too often, says Blight, spouses misinterpret that vow to mean that they must accomplish this all by themselves. That is understandable but wrong.
Thomson says to stop thinking of spousal care as a project that you can successfully conquer alone. Because it is complex, its practical aspects need to be approached with project management “best practices.”
This will require a team of professionals, friends, and family members who are willing and able to use their special skills or talents to take on one small part of the challenge, she says. For example, a friend who loves to cook can be responsible for delivering one meal each week, and a family member who is good at accounting can help with finances. Outsourcing help is key. Consider hiring an in-home health aide, when needed.
8. Understand that you will need to adjust plans repeatedly.
Blight says to understand that your spouse’s health condition will drive caregiving requirements and that they will evolve over time. That’s why your short- and long-term caregiving needs will adjust on a regular basis. “It’s not a static experience,” he says.
You will need to keep making decisions about who will deliver the care, where it will be delivered, and how it will be paid for.
9. Your relationship with your spouse will change.
Caregiving for a spouse introduces a whole new dynamic in your relationship with them, says Blight.
Perhaps you never had to help your spouse in the bathroom before — such as showering or using the toilet. “It can be very humbling or distressing or sad,” he says.
You may have to feed them or push them in a wheelchair. Or you may no longer be able to have the stimulating conversations with them that you used to have, says Blight. And, of course, your intimacy with your spouse can be profoundly impacted. These new constraints can be physical, social, or relational.
“As their health condition evolves, your relationship will evolve with it,” he says.
10. You’ll need to educate yourself.
First, it’s important to learn all you can about your spouse’s diagnosis from their doctor. But don’t stop there, says Culler. Connect with local services for older adults (like area agencies on aging) and other national groups focusing on specific conditions or diseases. If you conduct your own research, make sure the information comes from legitimate organizations and is not solely based on the opinion of one person in an internet forum.
11. Stay in the present.
Culler suggests staying in the present moment to find balance while caring for your spouse and preparing for the future.
Too often, the spousal caregiver is so focused on what comes next that they forget to fully engage in the time they have with their spouse, says Culler.
If you find yourself living too far into the future, bring yourself back to the present by sitting with your spouse and perhaps simply holding their hands. Few gestures are more meaningful or more loving.
This story was updated to reflect the new information from Jay Leno.
Bruce Horovitz is a contributing writer who covers personal finance and caregiving. He previously wrote for The Los Angeles Times and USA Today. Horovitz regularly writes for The New York Times, The Wall Street Journal, The Washington Post, Investor’s Business Daily, AARP The Magazine, AARP Bulletin, Kaiser Health News and PBS’s Next Avenue.
