Caregiving and Self-Care

By Chloe Hilles

Sheri L. Yarbrough earned her doctorate in education policy studies from the University of Illinois Urbana Champaign. By training, she is a policy analyst specializing in ethnography; but after her mother was diagnosed with Alzheimer’s disease Dr. Yarbrough’s role shifted to being a caregiver. Now, Dr. Yarbrough has been caring for her mother for 10 years, and has written a book about caregiving, Omg! I ’m the Grown - Up! A Conversation on Giving Care to a Loved One...and Yourself , and started a consulting service for caregivers called Praxis Senior Care-Giving Solutions. We sat down with Dr. Yarbrough to learn about her best practices for caregiving, especially during the holiday season. 

I thought that the time to give care would sort of arrive with regal fanfare and I would step into my role. Well, what I got with my mom was wind chimes jingling frantically in gale force winds. Do this now! We're here. Do it now. But at the doctor's visit, I walked in as a daughter, and walked out of that meeting as a caregiver, with no clue as to what I was going to do or how I was going to handle that. She was diagnosed with dementia of the Alzheimer’s type and I knew nothing about the disease so, I defaulted to my training as a policy analyst and as an ethnographer. I decided to read everything I could get my hands on. So I started studying and the literature was overwhelming, to say the least. I also went to every forum I could attend, I did all those things, and the one thing that I kept noticing was the discussions tended to revolve around the losses that your loved one was going to experience. I was so focused on the loss that I started to lose track of what she really could do. I said to myself, ‘Okay, you know what? Let's just see what we can do.’ And I just started focusing on what she could do and took notice of her declines over time.

How would you suggest making a care plan for a loved one?

First, you have to really assess where that person is. Are there dynamics that can take on a life of their own if you don't intervene? Talk with your loved ones early on to ask them what they want. The care plan really revolves around what that person would want if she or he could make those decisions for herself or himself. Once you identify what that is, now you can decide who needs to help. Do you need the doctors to discuss the care so you can move forward? What is that going to look like if you're at home? Do you get home care? What should a home care nurse be doing? How frequently should you have that? Can we get an occupational therapist or a physical therapist? And how often does that person need to come? That's how you build a care plan. It’s based on what that person wants and needs and how to meet those needs.

How does a caregiver care for another person, while taking care of themselves?

In my book, I write about what I did to manage our care journey that I call the Praxis for Care. The Praxis for Care consists of the Fulcrum for Giving-Care that is anchored to the Foundation of Fundamental Values with one’s self-efficacy. I liken being a caregiver to riding a teeter totter, where the needs are going up and down between both people. The dynamics in the Fulcrum for Giving-Care are of forgiveness, patience and acceptance which applies to the caregiver, as well as the care recipient. The Fulcrum for Giving-Care helps you balance your needs with your loved ones needs while the Foundation of Fundamental Values helps you use your self-efficacy on the ride. Some days you're only human and you have your moments, too. Give yourself forgiveness for being human and be patient with your humanity. You are not just the person who is extending care, you also need care. I really stress this because I use this analogy a lot. If someone came to you and said, I need $50 right now and you look at your wallet, then you saw that you had $20. Could you give that person $50 at that moment? Nope. You have to make sure that you have enough, that you give yourself enough care, so that you have enough to give to your loved one. You have to stay full so that you can continue to give.

What strategies do you suggest for caregivers to stay ‘full’?

Never forget who you are and what you like to do. I know that sounds simple, but as a caregiver your needs are just as important as those of your loved one. It's very important that you remember who you are. Recently, I wrote a post about how writing is something that I love doing and it gives me an opportunity to process my experience as a caregiver, and to fulfill something I have to do by doing something I love. I would encourage caregivers to be reflective: What do you like to do? How can you build what you like to do into what you have to do? I like food. I am an unabashed foodie and food is very much a large part of caregiving because you have to feed your loved one. Depending on what their physiological needs are, you are constantly figuring out which foods are okay, which foods conflict with medications, what makes this person uncomfortable. There is this constant process of what we are going to eat, but cooking gives me that space where I can be creative. It gives me short periods of time, like 10-15 minutes per day where I can go into my zone and really play around with something that I enjoy making and something that my mom is going to enjoy. So again, it's doing something that you like to do in a way that helps you do what you have to do.

What is a piece of advice you might give to a new caregiver?

Trust your instincts. Absolutely. The second part of the Praxis for Care is what I define as the foundation of fundamental values. And I've chosen four.

• Honor, which is what you do to show the value of the relationship.
• Trust, to know what's true in the relationship.
• Being honest, to know what you're going to get.
• Respect, to do unto others as you would have them do unto you.

When you put those four things together and you have that fulcrum of patience, forgiveness, and acceptance on top of this, you now have a foundation that's stable. So as you're going up and down, it's not going to topple over. And finally, you attach this with your efficacy — which is your belief that you can make this happen. What I would say to new caregivers is: understand that this is hard, but build that foundation of values so that you can remain stable as you are going up and down with the changes and give yourself what you give your loved one.

What is caregiving like during the holidays? What advice do you have for caregivers?

I think that's the most important thing is just really sticking to the basics. Use what you know about your loved one  and tailor it to those new needs. My mom and I travel, believe it or not. I take a person who has had dementia for 10 years onto an airplane. I can do that because I know what she can tolerate. That’s why it's important to use what you know. So, let's say you wanted to do some holiday traveling. If your loved one didn't like flying before and now they have dementia, the unfamiliarity and underlying discomfort with traveling could cause your loved one to have a meltdown at 30,000 feet. And that’s not good for you, your loved one or the other passengers and crew. Holidays in the world of COVID-19 require you to adapt. If you have a really large family, perhaps maybe half of them can be virtual and the other half are in-person. Or you do a rotation so that it is comfortable for the person. Sometimes too much noise and too much motion gets overwhelming. Know what your loved one’s boundaries are and just tailor it that way.