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 able to reclaim their intimate relationship.
“Even though Mark has made huge strides, he may never completely recover,” said Trudi. “But he is still the same man I married, and now that we’ve rekindled our relationship, we can focus on making the most of the future.”
In summary, becoming a caregiver is a major undertaking. It’s important to consider the impact it will have on you and your family, as well as the care recipient. Caregiving should not be a solo endeavor, so assemble a good support team and create a plan. Having honest conversations with everyone involved regarding levels of care, expectations, responsibilities, resources, and preferences is the best way to begin. Of course, situations are apt to change, so keep communications open and remain flexible. And just as importantly, make sure that plan includes time to take care of you, because a caregiver who is physically or emotionally unwell cannot take care of anyone!
“It is always wise to look ahead, but difficult to look farther than you can see.”
—Winston Churchill
Grandpa’s Gift
Dealing with the seemingly endless amount of paperwork following the loss of a loved one can seem like drudgery, especially when grief is already wearing you down. My mom and I were doing our best to put things in order after my dad passed away, but we found that we could only handle bite-sized chunks at a time. One day, as we were heading to the bank to have some forms notarized, my then four-year-old son inquired where we were going. Without really thinking, my mom told him that Grandpa had given her some papers to sign. He thought about that for a moment, his little forehead scrunched up in concentration, and then asked, “Did Grandpa drop them down from Heaven?”
My mom, caught off guard by his question, got a bit teary-eyed and responded, “No, he left them here for me before he went to help me out.”
“Oh,” said my son, “that was nice of him.”
My mom and I exchanged a look and broke into much-needed smiles. Oh, to be four years old and see the world so simply!