Jay Leno Shares the ‘Challenges’ and Joys of Caregiving for Wife Mavis Amid Dementia Diagnosis

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.