Four Reasons Caregivers Should Practice Self-Care
If you’re looking after a loved one with dementia-related psychosis, you need time to recharge in your own way. Here’s why.
In 2015, Rosanne Corcoran’s mother, who has dementia, moved in with Corcoran and her family in the Philadelphia area. Corcoran, who runs a caregiver support group and talks about caregiving and dementia on Daughterhood, The Podcast, was able to hire some outside help for her mother’s care in 2018—but then the COVID-19 pandemic hit. Corcoran now cares for her mother around the clock.
“The caregiver came for four to five hours a day so I could run errands, go to the grocery store, attend doctor’s appointments, and pick my daughter up from school. I even joined a gym. I couldn’t believe it, I had a little bit of a routine going and it was great,” Corcoran says. “I haven't been able to do any of that since last March.”
Corcoran says that finding ways to refuel herself is vital. Otherwise, if she starts to feel too wiped, everything that happens with her mother is exponentially more stressful, making it harder to be a diligent and effective caregiver.
Being a caregiver for a loved one with dementia—especially one who experiences hallucinations and delusions as part of dementia-related psychosis—isn’t a walk in the park. Whether it’s your parent, spouse, grandparent, or another person, looking after someone else’s needs not only demands your time and attention, but also, your mental and emotional energy. It requires stepping into a challenging new role while also trying to grapple with your loved one’s mental decline. To weather this huge life transition, self-care is critical. Here’s why it needs to become a priority in your life—and how to work it into your routine...
Self-Care Helps You Handle Your Own Feelings
Caregiving for anyone is a huge commitment but being the primary caregiver for a person with dementia or dementia-related psychosis comes with even more challenges, says Babita Spinelli, L.P., psychotherapist in private practice in New York and New Jersey. Frustration, anxiety, sadness, anger, and even depression are all common emotions among caregivers. All this on top of feeling the pressure to give your loved one the best care you can.
Dementia is a disease that doesn’t improve. When you are responsible for someone’s care, and you can only see them getting worse, it can cause a lot of complicated emotions, Spinelli says. Good days and bad days are unpredictable. On good days, there can be a sense of false hope, “and that can create an emotional roller coaster,” Spinelli says.
“There’s also a real sense of loss of control and that can lead to sadness, but also frustration and anger,” Spinelli says. This loss of control can feel even more pronounced when dementia-related psychosis is involved. You may even get angry at the sick person, even though it’s not logical.
Caregivers also have to grapple with their own grief. “A lot of times you have to come to the realization that a loved one has this diagnosis, that they’re not going to be the same person, and a lot of things are going to change,” says LaQuista Erinna, doctorate of behavioral health, therapist and owner of THRIVE Behavioral Health & Consulting. You may not realize it at the time, because there’s so much going on, but this grief deserves the same attention as any other grief.
On top of all of this, a caregiver may feel resentment or anger that their whole life has been upended—and then feel guilty for feeling that way. “People may have to put their own life on the back burner,” Erinna says. All of these responsibilities and emotions can lead to burnout. Says Erinna, “It’s a lot to take on and usually, there’s one person in the family who takes the lead—and quickly, they find that it’s a lot to handle.”
Shifting Your Mindset Helps You Keep Going
The first step to taking care of yourself is to get your mind in the right place.
“What I personally had trouble with, and what people have to find out for themselves, is that you don't have to like the situation,” says Betsy Wurzel, who was a caregiver for both her mother-in-law and her husband and talks about caregiving and dementia on her podcast Chatting With Betsy. After all, there's not much to like, she says, but you’ll be better off if you can accept it and learn to roll with it: “You have to learn to be fluid and roll with each and every turn.”
You also have to let go of the guilt, Spinelli says. Repeat after us: Self-care is not selfish. “A lot of caregivers really do feel guilty about giving themselves self-care because they feel like if they do, they are not giving enough. Or they might feel like it’s because they took a break that their loved one took two steps backwards, when it doesn't have to do with that at all,” Spinelli says. “Being a caregiver is really the essence of being selfless,” she adds. And the only way you’ll be able to help someone else is if you put your oxygen mask on first.
It also helps to focus on what you can control. “I couldn't control my husband’s progression and one of the worst feelings was that feeling of helplessness,” Wurzel says. “But I could control how I reacted to the situation. The way I saw it, either Alzheimer’s was going to kick my ass or I was going to kick its ass, and I wasn't about to give this disease any more power than it already had.” How do you prevent it from destroying you? You take care of yourself first, she says.
Self-Care Doesn’t Have to Be Cliché
Corcoran cringes at the term self-care, “because you conjure up bubble baths and massages and vacations somewhere, and that's not it.” Self-care can really look a million different ways. It doesn’t need to be complex or expensive or time consuming—it can’t be if you’re busy taking care of someone. It helps to think about self-care as anything that charges you back up and gives you a moment to breathe, Corcoran says.
For her this year, that’s meant journaling. “That saves me,” she says. The other thing that she has found super helpful are support groups. Forming relationships and letting off steam with people who understand what you’re going through can absolutely be part of your self-care.
Wurzel highly recommends starting a meditation practice—even if it’s just five minutes a day. She also listened to motivational speakers and attended online summits about how to empower herself when she was in the throes of caregiving.
Going for a walk can be self-care, too, Spinelli says. If you can manage just a 10-minute walk a couple of times a week, that can be huge. Even just the act of getting outside for some fresh air can be rejuvenating.
Any form of movement, for that matter—even just a couple minutes of stretching or yoga in the morning or right before bed—can make a difference. If you can, Erinna suggests planning ahead of time so you can schedule some help. Maybe a sibling or your spouse can take over for 20 minutes, so that you do a quick workout and shower. The more you can plan ahead, the better your chances of making it actually happen.
Spending a little time everyday doing one thing that brings you joy is also a great way to practice self-care. That could be reading a book, listening to an audio book or podcast, knitting, playing the guitar—whatever you enjoy. Even better if it’s something you can pick up and do when you have a few minutes of time, and easily put down when you have to jump up to help your loved one.
Self-Care Opens the Door for Support
Asking for help is also self-care. And you don’t have to wait to do it until you’re drowning.
“Even at the beginning before it gets to the point of burnout, I think therapy could be very helpful,” Erinna says. “When you first learn you’re going to be in this role, it may be helpful to be proactive. Talking to someone who is outside of your family and friends, who has an unbiased and professional view on what is going on, would be helpful.”
Therapy can help you both understand your feelings and develop healthy coping mechanisms, Spinelli says. “Therapy can help you start to let go and process everything and realize the guilt is not actually helpful. It can also help you set realistic expectations and goals and be that reminder that you can ask for additional help,” Spinelli says.
It can also help you learn you’re not alone, and that it’s OK to feel how you feel, Wurzel says. “I went to counseling and learned I don't have to be strong, it’s OK for me to cry, it’s OK to say: ‘This disease freaking sucks.’ It doesn't mean I don’t love my husband.”
Erinna says that it’s time to seek help as soon as you’re noticing you’re feeling drained, super stressed, resentful, or starting to take your feelings out on other people. “If it’s affecting other areas of your life, and your work, marriage, kids, or other responsibilities start to suffer, I would definitely seek help at that point,” Erinna says.
And at the end of the day, remember to show yourself some gratitude, grace, and compassion, Spinelli says. “Allow yourself to say, ‘Hey, you did a good job today.’ That’s self-care.”
- Issues in Dementia Caregiving: The American Journal of Geriatric Psychiatry. (2011). “Issues in Dementia Caregiving: Effects on Mental and Physical Health, Intervention Strategies, and Research Needs.” pubmed.ncbi.nlm.nih.gov/21502853/
- Caring for the Caregiver Fact Sheet: Family Caregiving Alliance, National Center on Caregiving. (n.d.). “Taking Care of YOU: Self-Care for Family Caregivers.” caregiver.org/taking-care-you-self-care-family-caregivers