As a music therapist, most of my day-to-day clinical work is with people who have long-term care needs, particularly older adults and people near the end of life. Many of my clients live at home with family caregivers or have family members who are deeply involved in their day-to-day care. One challenge for me as a therapist is that I don’t yet have either of these life experiences – being elderly or caring for elderly family members – so it can be hard to put myself in the other person’s shoes. I really do want to try to understand, though, so that I can be more helpful, more effective as a therapist.
Now that I am a mother, I think I am beginning to understand some of the challenges of being a family caregiver. My six-month-old daughter has been having a hard time sleeping through the night recently, and a few days ago, she was awake every hour. Sometimes I was pretty sure I knew what was wrong (wet diaper!), but sometimes I was only making my best guess (Teething pain? Too cold? Lonely?) In the midst of trying to figure out what she needed, I was also trying to figure out the quickest route back to bed, thinking about how absolutely desperate I was to get back to sleep, and mentally begging my baby just to go back to sleep already.
(Okay. I confess. By the wee hours of the morning, I was begging out loud for my little girl to go back to sleep.)
By the morning, I was still pretty much awake, exhausted, and facing another full day. My husband pulled double duty in getting the baby ready for daycare so I could catch an extra hour of sleep, but still, all day long I felt like everything was taking twice as much effort as usual and that my energy reserves were draining twice as fast. What else did I feel? Guilt. Guilt that I took a mid-afternoon nap instead of doing office work. Irritation at my daughter for keeping me up, and guilt for feeling angry at her. Anxiety that maybe I was doing something wrong, and dread for the next night, that it would be just as bad or worse, and that I would be even more drained the next day.
Fortunately for all of us, the last couple of nights have been a little better, and my husband and I have gotten a bit more rest, although I’m not anticipating a truly restful night for a while yet. So, I lived to write another blog post.
Is this what it’s like to be a family caregiver? To feel this mix of crazy emotions when someone is wandering around the house at night, confused; or when your loved one needs help with bathing, then with dressing, then with eating, then with taking medicine, and you never really get a chance to rest? To think, in the middle of whatever the current crisis is, that you are virtually alone, with the weight of responsibility solely on your shoulders (whether or not you are really alone)? Maybe even to resent this responsibility, even though you desperately love the person you are caring for?
These are such difficult things to go through that it’s no wonder that caregivers burn out. They need support, too, through the challenges of caring for a loved one.
Happily, there are joys, too. For me, it’s seeing my little girl’s smile in the morning light – no matter how rough the night was, I can’t help but smile back. It’s rocking her to sleep and knowing that I have the privilege of being her comfort, the same way my mother was for me.
I hope other family caregivers have these kinds of joys, too – the good times when your loved one smiles and laughs like he used to, or the moments when you remember a special time that you shared together. Sometimes, I get to help facilitate these joyful moments in music therapy, like when a caregiver gets to choose a special song for his loved one and she remembers it word-for-word, or when an upbeat number gets a loved one dancing in his chair, even when he can’t be coaxed out of bed for much else. These moments are the ones that keep people going through the most difficult times.
I do hope that our baby will be sleeping better soon, but I am also grateful for the opportunity to experience maybe just a little bit what it might be like to be in the shoes of some of the folks I serve in music therapy. Caregivers, can you relate to what I’ve described above? What am I missing? What helps you get through the tough times?
P.S. This is not the first time I’ve written about being a tired new mom. I guess I still need those lullabies…