A long-time caregiver writes an honest plea for help and support.
Dear Joe, Laura, Barbara, Robert, and Kathy,
One of the classic problems for people with a serious brain injury and the people who take care of them is a shrinking support system. Once the immediate crisis is over, family and friends slowly disappear. I’ve found countless examples of this in my research, and it’s been a problem for your sister Jessica and me, her husband. Recently, I was asked to write an article about this issue, suggesting ways to get extended family members more involved in the care of the survivor. As I wrote this article, I realized I had yet to follow my own recommendations, which are (1) to clearly explain, with details, why you need help, and (2) to specify what types of help you need.
There are many reasons why extended family members don’t help. They have families of their own to care for. They can’t miss work. They live far away. They no longer connect with the survivor — her impairments discomfort them. Or, they simply can’t be bothered to interrupt their busy lives.
When the person with the brain injury is high-functioning, like Jessica, the extended family may see no need for help. She’s out of medical treatment. She walks, talks, and looks “normal.” She may even drive a car. Therefore, her recovery must be complete. So, why do you need help caring for her? This line of thinking often leads to the oft-used excuse for not helping, “You’re pampering her. Let her stand on her own two feet. She doesn’t need help. She’s just lazy and irresponsible.”
In my article, I wrote that before giving up on the family, caregivers should try to educate their relatives about brain injury, in general, and about their loved one’s specific impairments. For many observers, a brain injury truly is invisible. They fail to see the full spectrum of physical, cognitive, emotional, behavioral, social, and/or communication symptoms that people with TBI and their caregivers deal with every day. It’s likely that only the principal caregiver recognizes that their loved one works diligently to appear “normal” to others. Only the caregiver sees her at her worst, at her most vulnerable. Consequently, those who don’t interact with the survivor often may honestly see no need for help.
The extended family may also not understand how much time and energy caregivers spend helping people who live with a brain injury. They may not see how much people with TBI depend on their caregivers. They may not see the sacrifices caregivers make to help their loved ones enjoy better lives.
To caregivers, I wrote, “This is no time to be proud. It’s a time for a frank discussion of how your lack of help is harming both you and your loved one. You also may suggest that if your health fails, the full caregiving burden will fall on the extended family.”
So, I will not be proud. Below, I’ll try to explain why we need help, why I cannot care for Jessica by myself, and how you can help.
Research shows that being the primary caregiver for someone who lives with a serious brain injury is debilitating to that person’s health. Prolonged stress, fatigue, and neglect of your own interests and well-being, year after year, can wreak havoc on your physical and mental health. To remain healthy, every caregiver needs some respite from his caregiving responsibilities. A tired caregiver is a poor caregiver.
We can no longer ask for help from those friends who gave us a week of their time to help with Jessica’s rehabilitation. Since our moves from Boston and then from D.C., we’ve lost touch with them. Local friends help with small things, at times, but we really don’t know anyone well enough in our new community to ask for help with the big things. Frankly, I just haven’t had the energy to make new friends. My sister Jennifer comes once or twice a year and I can always count on my sister Barbara. And I’ve tried to be able count on you. I’m particularly concerned about what would happen to Jessica if I should die first.
My health has been steadily declining over the past twenty years and the demands of caring for Jessica have contributed to this decline. I’m tired. I’m so used to minimizing my chronic pain to others that I rarely admit the truth, even to myself. I’m exhausted. I’ve dramatically cut back on my work. I turn down most requests for articles or blog contributions, and I turn down all invitations to speak at conferences. I don’t have the energy to write another book. I wake up exhausted. I go to sleep exhausted. I regularly drag myself to the pool and the gym. I’m able to gradually increase how long I can swim and how much weight I can lift, but the exercises have not given me any more energy. I’m often even too tired to read, my primary diversion.
Jessica recognizes my pain and exhaustion, but the part of her brain that translates this knowledge into action is gone. She rarely offers to help me, and when I ask she usually complains that she has so many of her own things to do. I’ve mostly stopped asking. When I hurt, she hurts more. When I’m tired, she is more tired. Sometimes we talk about this. Sometimes, when I’m particularly upset, we fight about it. But, it’s not going to change.
I’m easily upset these days. I lose patience with Jessica, even over the little things: trying to get her out of the house on time, her obsessive-compulsive behavior, her interrupting or not listening when I speak, her forgetfulness, and the fact that she is easily distracted.
I’m not only exhausted physically, emotionally, and intellectually, but I’ve also developed compassion fatigue, which Wikipedia defines as a condition characterized by a gradual lessening of compassion over time. It’s common among trauma victims and individuals who work directly with trauma victims. Sufferers can exhibit several symptoms including hopelessness, a decrease in experiences of pleasure, constant stress and anxiety, and a pervasive negative attitude.
That’s me. You can imagine that when I feel this way, I’m not a great caregiver. And this is how I feel these days. It’s been a long time since I’ve had a break and I badly need one now. I also need regular breaks in the future.
Our life is only going to become more difficult as we age. Jessica is a prime candidate for dementia and/or Alzheimer’s. She’s been having balance difficulties lately and has fallen a few times. With her osteoporosis, our future certainly will include some bone fractures. There’s mounting evidence that brain injuries are accompanied by a variety of other medical problems and should be treated as a chronic condition with new symptoms appearing as survivors age.
Jessica has become a different person because of her brain injury. She’s not the woman I fell in love with. You’ve all spent some time with her and have seen many of her impairments. But you’ve never seen the full extent of Jessica’s disability. You’ve never seen her explode with anger. You’ve never been deprived because of her selfishness. Jessica and I have lost the equal partnership of a marriage. There’s now an element of father-daughter in our relationship. In some ways, Jessica is like a ten-year-old, so caught up in her own life she’s oblivious to what’s happening to those who care for her. But, unlike the ten-year-old who will grow up and learn to see her parents in a different light, in this respect, Jessica will remain ten years old.
I still love Jessica very much. This message is not an ultimatum. I will willingly take care of Jessica for the rest of my life. If I don’t get more help, I’ll somehow manage. But I don’t understand your reluctance to help. I don’t know if it’s the family culture, a lack of compassion, or such a focus on your own lives that you’re unable to see our difficulties.
Over the years, when asked by you for help, we’ve always responded favorably, with our time, our money, and/or a temporary place to live. At times, when we’ve seen a need, we offered assistance without being asked. For the past few years, I’ve hoped that at least one of you would call and offer to visit for a week, or to invite Jessica to do something with you so I could get a break.
Jessica is also surprised and saddened by your lack of involvement in her life and her care. At times, she fears that you no longer like or love her because of her brain injury. When we need help, her first reaction is to call my sister Jennifer. Jessica has become reluctant to ask for your help because she now expects to hear reasons why you can’t or won’t help.
From a distance, our life probably doesn’t seem that difficult to you. We don’t have to earn a paycheck. We have all this free time. We have money in the bank. What’s the problem? Well, there’s a reason we can’t work. Believe me, there are few things as frustrating as having time, but not the energy nor the freedom from pain to use that time in an enjoyable or productive way. For years now, I’ve been using much of my limited energy to care for Jessica and write about brain injury. The energy to write has disappeared. I’d like there to be more to my life than just caring for Jessica.
How can you help? I need a respite break of at least seven nights every nine months. If all five of you participate, this means giving us a week of your time just once every 45 months.
Please help me set up a schedule now so everyone knows well in advance when their time to help will come. I need you, and Jessica needs you.
Thanks for giving this serious consideration.
Your favorite brother-in-law, Garry
Written exclusively for BrainLine by Garry Prowe, author of Successfully Surviving a Brain Injury: A Family Guidebook.