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Challenges of Caregiving Q&A with Dr. Cheryl E. Woodson

Written by Yuliya Klochan 

Dr. Cheryl E. Woodson is a seasoned physician, author and educator. She has taught and practiced geriatric medicine for almost 40 years and experienced the challenges of caregiving for a person with dementia firsthand, having cared for her mother, who had Alzheimer’s disease for 10 years. She shared her expertise in the book “To Survive Caregiving: A Daughter's Experience, A Doctor's Advice” and its companion “The Doctor is IN: Answering Your Questions About How to Survive Caregiving.”

We spoke with Dr. Woodson about the challenges of caregiving. She provided some invaluable advice on how to take care of yourself while taking care of others.

In your book “To Survive Caregiving,” you introduce the Five Keys to Caregiver Survival. What are the main takeaways from this framework? 

The most important is that information beats panic. The first key is to find out if you need help, and that means getting an evaluation, or understanding whether you are dealing with dementia or not. The fifth key is also important. It is “put your mask on first.” If you can't breathe, you can't help somebody else breathe. The keys in the middle are more about how you interact with family, with healthcare teams, and how you get people to help you. Many caregivers don't want to tell anybody they need help. There is no way to do this by yourself. You’ve got to tell people that you need help, and if they don't help, you stop relying on them.

How can people manage competing priorities and responsibilities while providing care? 

First of all, they have to understand that there are competing priorities. Try to figure out what the balance is. There's no way for you to do all of this without getting it together, finding out what resources you need, setting up structures and schedules, and making sure that you put yourself on that schedule. Reserving time to just relax and rewind and rebuild lets you come back as a better caregiver. You deserve some help, and you will burn yourself out if you don't get the help.

What is the most important piece of advice you'd like caregivers to take away from our conversation?

We're nurturers, and we value that part of us, and we want to give until it hurts, but you do not have to give until you are damaged. There are ways to give great care without killing your physical, financial, emotional or spiritual health, without killing your career, your marriage, or your relationship with your kids. You don't have to sacrifice everything to do this. Find out if you need help. Tell people you need help. Let people help, and realize that you can't take care of them, if you don't take care of you.

In your book, you mention experiencing stress, pain, fear, confusion and guilt as a caregiver yourself. How can caregivers manage these complex feelings?

Guilt is one of the most insidious ones. It's the most dangerous because people feel that they're not doing as good a job as their parents did with their grandparents, but there's a crisis in caregiving today that your grandparents did not have to deal with. Forgiving yourself for not being able to do something that is impossible for you to do -- that's one thing. You have to get help, so that you can step back and deal with your grief and deal with your guilt. A lot of times people are afraid because they don't know what they're doing, but some of the fear comes from losing the relationship, or anticipatory grieving. Again, counseling will help. The other thing that helps is to keep your “I love you’s” up-to-date and do things with them, not to them. Let somebody else do the dressing changes, and you play a game, or listen to music with them. You're not spending the time with your head down doing stuff; you're interacting with them. 

How does caregiving today differ from what it was in past generations? 

Each generation has fewer children, so there are fewer potential caregivers. The caregivers have competing responsibilities that previous generations didn't have. And the caregiving season is longer because people are living longer. 

What is the most common misconception about caregiving?

That it's easy, and that it is an obligation to do it yourself. 

How can caregivers struggling to find time practice self care?

By getting the help you need so that you can step away, whether it's respite care or adult day services. You have to have people whose shoulders you can cry on who are farther along in the caregiving path than you are. They can tell you how they did it. This is why caregiver support groups are essential, because there are people around you who've already been down that path. They may have ideas that you haven't thought of yet. You can't do self care, unless you're willing to step back and let somebody else take care of them on a regular basis. You can't wait until there's a crisis. It ought to be something that you schedule, whether it's monthly, quarterly, or whatever you can afford and tolerate, but it has to be on a regular basis. I'm so passionate about this because I've seen so many people crash and burn, and it just doesn't have to be that way. Self-care is not selfish, it is critical.

The Mesulam Center offers monthly support groups for care partners of individuals living with primary progressive aphasia (PPA), frontotemporal dementia (FTD) and younger-onset (under age 65) dementia. Learn more about how to join here.

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