open. Even if you are unable to meet in person, a weekly conference call or email can convey important information. For instance, a quick weekly email might cover changes in health, what the doctor said at the latest appointment, new medications, things that need to be done around the house, and even potential problems (e.g., “I think dad is losing weight and needs to start drinking a nutritional supplement”). Don’t forget to ask for the opinion of other caregivers, instead of simply making decisions. And finally, injecting some humor into the situation is okay, and may even alleviate some stress!
Care for the Caregiver
Learning the Importance of Caring for Yourself—The Hard Way!
Okay, confession time. When I first took on the caregiver role, I did not heed the advice and warnings of others. When well-meaning friends told me to take care of myself, I would thank them, while inwardly rolling my eyes and thinking, “Yeah, right. Who has time for that?” First of all, my team was small—in the beginning, it was very small, consisting of just me. My husband was extremely supportive and helpful, but he was working full-time and taking up the slack at home. My young son became very adept at helping to get the walker in and out of the car, opening doors for Grandma, and assisting with chores around her condo, but he was just a little boy. My mom barely knew her new neighbors and had no close family members. And so I took on everything, believing I could do it all.
Things started out fine. My mom and I worked out a schedule. I hired a cleaning person, who eventually became a good friend to my mom. Early on, my mom’s personal needs were manageable—which is not to say they didn’t take up a lot of time. Sure, I was skipping my own health screenings, because who wants to spend more time in a doctor’s office when you’re already devoting hours each week at multiple appointments for someone else? And, yeah, I may have cut back on sleep so I could spend more time with my husband and son and get things done around my own house. It’s also possible that I was running unnecessary errands simply because I could not say “no.” But, overall, I felt I had things under control. Then I got a wake-up call.
One day, I woke up with severe back pain. The diagnosis was a herniated disc. When six weeks of physical therapy did not improve the situation, I agreed to surgery. I believe my exact words were, “I really don’t have time for this. You have to fix me!” The surgery was successful, but it required several weeks of recovery, during which I could not drive, and another six weeks of physical therapy. While I was out of commission, I had no choice but to rely on others, including paid home aides, to care for my mom. She was not pleased. I would receive calls from my mom complaining about how so-and-so didn’t get the right groceries (translation: she didn’t pick up little treats and things my mom forgot to put on the list like I did). She didn’t like the way the home aide did the laundry or the meals that were being prepared by a friend. Every conversation ended with her asking, “When will you be back?”
Mind you, my mom rarely asked how I was doing or expressed concern about my recovery. I tried not to take this personally. I knew she loved me and cared about my health, but was consumed by her own pain and frustration. A friend and psychologist once told me this seemingly selfish attitude happens frequently. As a care recipient loses more and more independence and control, and is expending all their energy dealing with chronic pain and deteriorating health, they simply do not have the capacity to see the big picture and, therefore, become very focused on their own needs. I could understand that, but still, it was hurtful and very stressful.
Once I was given the green light to drive, I resumed my caregiving duties, but was warned to take it easy. Easier said than done! I was just getting back to feeling good again, when a strange thing happened: I began to have heart palpitations that kept me up at night. At one point, I felt like my heart might actually leap out of my chest. I also had pain in my jaw and down my arm. Since I was very familiar with heart attack symptoms, I took no chances and wound up in the emergency room. After undergoing an EKG, a stress test, and a heart ultrasound, the cardiologist gave me good news: there was nothing wrong with my heart. The bad news, however, was that I still felt horrible! I couldn’t sleep, my hands were shaky, I had trouble focusing, and my chest still hurt.
Finally, my physician, whom I’ve known for many years, told me I was suffering from severe anxiety. When she delivered this news, I shook my head and said, “That can’t be right. I’m not an anxious person.” Ask anyone who knows me and they will tell you I am a calm, “glass half-full” kind of gal, who doesn’t freak out easily. So, it was hard for me to accept her diagnosis. However, I was desperate for relief, so I agreed to try some anti-anxiety medication. Within a week, my symptoms subsided. (You have no idea how wonderful sleep is until you’ve been deprived of it for weeks!)
Of course, we all know that medication works best when taken in conjunction with lifestyle changes. Just like blood pressure medication is more effective with diet and exercise, anxiety medication works better when you take other measures to alleviate stress. After months of feeling terrible, I knew I needed to make some changes.
I began with an honest conversation with my mom. I assured her that while I loved her dearly and would do my very best to care for her, I could not do it alone, especially as her health worsened and her needs escalated. Like it or not, we needed to find a home health aide to come in several times a week. I still made nearly daily visits, did her shopping and other errands, took her to appointments, managed her medications, and just spent time being a daughter.
On a personal level, I made time for the things I had been neglecting, such as regular check-ups and daily exercise (the dog was thrilled to go on more frequent walks!). I found time for prayer and meditation, I put dates on the calendar to have dinner with friends, and, most importantly, I reconnected with my husband and son. Things were still hard, but I felt better able to handle the role of caregiver.
It might seem impossible to carve out time for yourself when you are immersed in caregiving, but it’s absolutely necessary! You may have to be creative; you may have to be demanding; and sometimes you simply have to put your trust in others. Even with help, caregiving is physically and emotionally demanding; without help, no one wins.
Preserving Relationships
Trudi is a young wife and mother who never expected to be a caregiver at age 30. However, when her husband, Mark, an Army officer, returned home with a traumatic brain injury as a result of an improvised explosive device (IED), she took on the role without hesitation. In fact, as she later realized, she took on more than she should have.
“I love my husband, and I wanted to do whatever I could to help him,” said Trudi. “But the more I did for him, the angrier and more despondent he became. At first, I thought his anger was due to the injury, but it was often directed at me. We also lost all intimacy between us.”
One day, feeling frustrated and exhausted, Trudi broke down at an appointment. “We were seeing a wonderful occupational therapist, and when he saw how upset I was, he took me aside and let me vent.”
The therapist gently suggested that perhaps Trudi was doing too much for Mark. “It can be humiliating for some people, particularly a strong man like Mark, to have his wife bathe and dress him, or help him with the toilet,” the therapist explained. “You have to remember that he is not your child, but your husband.”
Trudi took his advice to heart and found a home health aide to perform the more personal tasks for Mark. This allowed her to focus on other care duties and, most importantly, simply be a wife and mother. Mark’s anger subsided as he regained some dignity and independence, and the couple was
