My top piece of advice for caregivers of persons with dementia (PwDs) is to make sure that you address your own needs, always. Like flight attendants always tell you, you must put on your own oxygen mask first before assisting someone else. Continual self-care, respite, and even therapy are some of the best ways to do this, and I know this first-hand because I sought out all three of these as much as I could while caring for my sister.
It was this multi-pronged approach that ensured I was as fit as I could be to care for her. I spent time with my partner. I worked out at the gym with my trainer three times a week. I visited with my friends whenever I had the chance. I danced at my favorite goth club, Death Guild, as often as I could make it there. I found a caring therapist to talk through what was happening. All of these helped in some way, though none of it was enough. Somehow I managed things—but at the time, honestly, I felt like I was just barely holding on by my fingertips.
Prioritize Yourself
When the stress of everything starts to overwhelm you, self-care is always the right answer. And after my sister’s devastating diagnosis, I needed all the help I could get! For me, that primarily took the form of music, which was (and is) huge in my life. I listened to music every day throughout the duration of Peggy’s illness—and I still listen to music every day. The two music groups that saved me over the last several years were Dead Lights and Ashbury Heights (yes, I highly favor goth and industrial bands and I especially like synth bands). To this day, just thinking about those two groups and their music makes me happy.
My partner and I even took my love of music to the next level by turning our atrium (which is in the middle of our house, kind of like the old Eichler house designs) into our own dance club. We did this long before Alzheimer’s entered our lives, but having it in place certainly brightened our existence during those dark days. It was great during the Covid lockdown, too. We could put on the pink and purple lights, fire up the blacklight, and dance the night away—unless/until a staffer from memory care, the ER, or a doctor called me regarding my sister. For the most part, though, “atrium nights,” as we call them, saved me more than once during this time.
Maybe you have something at home that’s fun like that? Board games, maybe? Lots of movies? Any activity can fill this need for you, so long as it relieves stress and makes you happy.
Seek Respite
If your person with dementia (PwD) is still living at home with you, opportunities for self-care might seem more limited. But there are a number of ways that you can carve out some personal time for yourself, to get a few hours, a day, or even an entire weekend off duty. These include:
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Adult day care. Typically these local care centers can offer you a few hours of company, activities, and supervision for your loved one multiple times a week.
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An outside caregiver. If there are no day care centers that work for you, you might consider bringing in a caregiver for a few hours at a time. Sometimes a PwD will balk at having a stranger in the house, but you might be able to spin it in your favor. For example, my sister complained that she didn’t need babysitters (but she did). I sold the idea to her by explaining that they were just there to keep her company while I was away.
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Friends or relatives. Reach out to your loved one’s circle of friends and family and ask for someone to sit with your PwD awhile while you run errands or even take a day of respite.
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Facility previews. If you’re planning to place your loved one in assisted living or memory care, sometimes those facilities will take your PwD for a couple of days prior to moving in.
For caregivers of PwD (especially spouses), it’s easy to fall into a hyper-vigilant mode, where you are always paying attention to your loved one in the moment, even from across the room. You track their moods and responses, try to predict their needs, try to avert any crisis or chaos. I know I did that, my sister’s best friend Michael did that, we all did that! But it exacts a big toll.
Sometimes you just need a little bit of down time—or to get away entirely—to clear your head and build up your strength to keep going. I know that that is something easier said than done! But, I’m here to tell you that if you don’t seek respite when you need it, you’re probably not going to be as effective a caregiver as you could be. I say this to you as gently as I can.
Consider Therapy
Some people are good with therapists, others not so much. But if you’re open to the experience, talking to a therapist can be very helpful when you’re a caregiver.
Not long after my sister was diagnosed, I realized I couldn’t handle the situation alone. I knew I’d need a therapist to help guide me along. I started with the directory at Psychology Today and found several therapists in my area, and I interviewed a couple of them in person.
That’s how I found Katy. She had been a social worker prior to becoming a therapist and her specialty was helping Alzheimer’s patients and their caregivers. I found out much later that she’d also been on a hospice team while she was a social worker. She used all of that expertise as a therapist; she was a perfect match for me and my needs. It wasn’t so much that I needed to work out my feelings; rather, I relied on her as a guide so I’d know what to expect throughout my sister’s illness. I’d also bounce ideas off of her, from making plans, to traveling with Peggy, to dealing with a problematic relative. She never steered me wrong.
I saw her about once a month, and that frequency generally worked for me. And if I had an emergency, I was able to see her more often.
Find Community
Another type of self-care can be found through support groups, either in person or via an online forum such as ALZConnected. Talking to people in the same situation can be very helpful; you can find everything from practical, hands-on advice to simply a different perspective.
For example, I was surprised to hear from a person on that forum that they believed I was really good at self-care. I know I tried to prioritize it during my sister’s illness, but I didn’t think I was especially successful at it because it never felt like it was enough. In general, I felt stressed-out all the time. So that was good to hear. I realized that all of our efforts might only barely keep our heads above water, might never feel like “enough,” but in the end they have to be.
The important thing is to keep trying, and take your stress temperature often so you know when you’re approaching burnout. If left unchecked, burnout can spiral into compassion fatigue, which can negatively impact your PwD. This great article: “Compassion Fatigue: When Caregivers Go Beyond Burnout”, offers additional guidance; it’s worth a read for any caregiver.
Thankfully, I never fell into compassion fatigue, but I know I was already solidly in the burnout stage when I first read that article, around May 2023. After Peggy passed away, it took me close to six months to shake that burned-out feeling. And even though I think I’m a fairly resilient person, it took me more than nine months to feel like more old self again.
