Caregiving for a loved one with dementia is one of the hardest jobs most of us will ever do. Caregiving can be physically and emotionally exhausting. Adapting to changes as the disease progresses can be disorienting. In the midst of that disorientation, we are faced with even more changes as we cope with the restrictions and uncertainties of COVID-19. Melissa Klaeb, the Director of Education at Alzheimer’s Orange County, and Ben Allen, a Programs and Education Specialist at Alzheimer’s OC, sat down recently–with appropriate physical distance–for a conversation on managing stress.
Melissa: This is such an important topic. I’m glad we have this opportunity to talk about the stress we feel as caregivers. Thank you for joining me, Ben.
Ben: Thanks, Melissa. I’ve been looking forward to this conversation because stress creates such a heavy burden on caregivers, especially these days with all the concern over COVID-19 and the disruption we’re faced with, and I think there are some very simple things we can do to manage the stress that caregiving brings.
Melissa: Disruption is definitely the word for these times. How has COVID-19 affected you?
Ben: As you know, my wife was diagnosed with Alzheimer’s almost 11 years ago, her disease is very advanced, and she lives in a long-term, memory-care facility. Prior to COVID-19, I saw her almost every day and helped her eat lunch. Now, with the restrictions here in California, families aren’t allowed into the facility. All I can do is observe her from a distance from the outside of a wrought iron fence. And because her vision is so distorted by Alzheimer’s, she doesn’t even know I’m there. It’s frustrating but I know she’s being well cared for. How has it affected you, Melissa?
Melissa: My mother has advanced Alzheimer’s, as well. In our case, she’s still at home and my Dad is her primary caregiver. I’m fortunate in that my husband and I live with them but with the COVID-19 restrictions, we’ve had to be extra careful not to expose her to anything. So, I’ve seen a lot of articles and webinars lately on caring for a loved one during COVID-19 and many of them are emphasizing the need for caregiver self-care. What suggestions have you found helpful, Ben?
Ben: There’s no question that we need to take care of ourselves, but if I tried to follow all the advice I’ve read recently, I wouldn’t get anything else done! For myself, the most important decision I’ve made is that I’m not going to worry about what I can’t do. I can’t follow every well-meaning friend or family member, or expert’s recommendations. Everyone wants to tell me what I should do. I appreciate their concern but the net effect is that I constantly feel like I’m failing as a caregiver because I can’t do it all.
Melissa: I can relate to that. So, what can we do?
Ben: The first thing I want to say–and I want to be very clear on this–is that we do not intend to tell caregivers what they should do. Everyone needs to make their own choices when it comes to managing stress. And yet, there are a few things I’ve found that have been helpful to me, and others might find they can get a new perspective on the stresses of caregiving that will lead to increased joy in the midst of the significant challenges we face.
Melissa: OK, let’s get into it.
Ben: For me, the key is to look for little things. You know, we no longer have the big things we once celebrated like special vacations and events. But when I look for little glimpses of beauty and joy, I find them. And those little things help to lower the intensity of my frazzled emotions. I found a really helpful article from the University of Arizona titled, “5 Ways to Care for Yourself in Challenging Times.” What I like about it is the simplicity of the approach. There are just five suggestions:
- Empower
- Connect
- Move
- Create
- Breathe
Now, in many ways, breathing should be first because it underlies the other four but I’ll come back to that. Starting at the top…
Number one is Empower. Empower yourself. To empower yourself means recognizing that you have the power to make a difference. I heard recently that Martin Luther King, Jr. said, “Power is the ability to effect change and fulfill purpose.” We can change some things. We may not be able to change the course of the disease but we can change the way we think. None of us know it all, and everyone’s situation is different in some ways. What’s common for all of us is that caregiving is hard! Even when I think I have things figured out, when I’ve made adjustments and everything seems to be going relatively smoothly, that’s when things change again and I feel like I’m starting over. That’s when I need to admit that this is a new day; I’ve never seen this day before–it’s a new adventure! I can admit that I’m overwhelmed; I’m never going to get everything crossed off my list. I can admit that sometimes I’m an emotional train wreck, and sometimes the primary emotion that comes out is anger.
I saw a great illustration of the many emotions that can trigger anger using an iceberg as a metaphor. It’s called “The Anger Iceberg.” This came from the Gottman Institute; they’ve done some really great research on relationships. Here’s the idea: When you see an iceberg, you only see what’s above the surface–in this illustration, it’s anger. What’s underneath the surface is much larger. And when we look beneath the surface of our anger or frustration, we see all the triggers, that is, all the feelings that I’ve kept inside until they come out as an expression of anger or frustration.
So when we acknowledge those emotions, when we admit that we need help, we empower ourselves to begin the process of how we think about our circumstances. For me, that meant I had to admit that I needed to see a counselor–and then actually make the appointment! Every day, I need to admit that I need to slow down and breathe! I have to admit that I need to take breaks. You know, a break might be only 15 minutes but those 15 minutes can make a huge difference in releasing some of the stress.
Melissa: Absolutely. Stopping to breathe can really help. And I had a really good break yesterday: I actually took the day off. Of course I spent a good chunk of time doing things I needed to, but I also was intentional about doing something I wanted to: I played my guitar for a few hours.
Ben: Good for you! So that’s number one, Empower yourself. Number two is Connect. Connect with others. Caregiving is often isolating, and COVID-19 has certainly increased everyone’s isolation. A great way to connect with others is to be in a support group. Even though our support groups aren’t meeting face-to-face these days, we’re seeing some groups beginning to meet using video conferencing tools like Zoom. If someone wants to be in a group but doesn’t know how to find one, our Helpline can assist in finding a group. Another way to be in a group is through Facebook. Alzheimer’s OC has a support group that meets online via Facebook; group members can post a question or comment and other members can share the benefits of their experience. And we have a new Zoom support group. (Link to support group info here).
We have so many technological tools that help us connect: Zoom, Skype, and FaceTime for video calls, email, texting, and phones. Melissa, do you remember phones? It seems like we don’t use phones much anymore. It’s amazing what a simple phone call or just a short text to check in with someone can lift their spirits and ours. We might even send a hand-written note!
Melissa: That’s really good. Hand-written notes make a big impact. Our Communications team has some nice e-cards on our website (link to cards here) that can be printed and mailed or downloaded and sent by email. And our Helpline is a great resource. Our Helpline specialists are available to talk through issues and suggest some strategies that might be helpful. (Editor’s note: the Helpline number is 844-HELP-ALZ or 844-435-7259.)
So, number one is Empower yourself. Number two is Connect with others. What’s number three?
Ben: Number three is Move. When we move, our heart pumps more blood to our brain. All movement is good; according to the research, the more movement the better up to 150 minutes a week or about 25 to 30 minutes per day, six days a week. There are so many ways to get our bodies moving…walking is one of the best and easiest activities. The key is to find something you enjoy doing so you’re inclined to make it a routine. My personal favorite is tennis. Unfortunately, most tennis courts are closed these days, so playing with my regular opponents hasn’t been an option. For me, walking has been my alternate form of exercise. How about you, Melissa?
Melissa: Going to the gym used to be my favorite but all the gyms are closed right now. My husband is a big runner, so I’ve started running with him. We’ll alternate running and walking. I was pretty proud of myself yesterday: I ran two miles without stopping! Alright, so far we’ve empowered ourselves, we’ve connected with others and we’ve moved our bodies. What’s number four?
Ben: Number four is Create. The creative process is inherently refreshing and uplifting, and it stimulates the brain, which is good for all of us. Anything you do that involves making something new or repairing something engages the creative side of ourselves. The expressive arts like painting, sculpting, making music with an instrument or voice are creative, too. Cleaning out a cupboard or closet counts, too; you’re creating order out of chaos.
This past weekend, I had an old set of TV trays made of a beautiful heart-wood walnut. But they were in such terrible shape with scratches and water stains that even the Salvation Army wouldn’t take them. So I decided to see if I could resurrect them. I sanded them down, applied a stain and now they’re beautiful again! That really felt great! And every time I use one, I celebrate the beauty I see in them.
Melissa: That sounds delightful. Well, I think playing my guitar this weekend was creative. I hadn’t played for a while so my fingertips were really sore but it felt great. Let’s see…Empower yourself, Connect with others, Move, and Create. You have one more?
Ben: Yes, number five is Breathe. I said earlier that breathing underlies the other four recommendations. When I’m stressed, I tend to take shallow, rapid breaths, and I’m not even aware of it. Consequently, my brain isn’t getting enough oxygen, and that makes it hard to think and remember. When I finally realize the pattern I’m in, I just stop. Sometimes I literally say out loud, “Stop!” And then I take a deep breath or two–or three–and start again in a more relaxed mode. When I connect with others, it helps me slow down and breathe. When I move, my body automatically breathes more deeply. When I create, I breathe more freely.
Melissa: Dr. Galindo, one of our great volunteers, recommends a simple four-count breathing pattern: Breathe in on a count of four, hold it on a count of four, and exhale on a count of four.
Ben: Yes, I use that often, especially if I’m having trouble getting to sleep. There are many ways to focus on our breathing for relaxation. Our co-worker, Aaron Gutierez, posted some great videos from Johns Hopkins with tips for relaxation. One I really like is called Progressive Muscle Relaxation; that really works for me!
Melissa: Yes, I like that one, too. So, we’ve covered all five strategies?
Ben: Yes, that’s it. One: Empower yourself, Two: Connect with others, Three: Move, Four: Create, and Five: Breathe. To me, that’s doable; that helps me manage my burden of stress.
Melissa: Excellent. And, as always, our Helpline is available. Our website has a wealth of information, and our Facebook page always has the latest on upcoming events. We’ve covered a lot of ground. Thank you, Ben.
Ben: Thank you, Melissa. It’s been great talking with you.
Check out the full conversation about managing caregiver stress here.
