Letter From an Anonymous Caregiver

I came across this today and it hit home in a BIG way!

Dear family and friends,

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. 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 — his 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 Michael, the extended family may see no need for help. He’s out of medical treatment. He walks, talks, and looks “normal.” Therefore, his recovery must be complete. So, why do you need help caring for him? This line of thinking often leads to the oft-used excuse for not helping, “You’re pampering him. Let him stand on his own two feet.  He doesn’t need help. He’s just lazy and irresponsible.”

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 him at his worst, at his 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.

For caregivers this is no time to be proud. It’s a time for a frank discussion about why we need help, why I cannot care for him 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.

Since our moves from Arizona to North Carolina it’s been very difficult. 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 time or energy to make too many new friends.

Michael recognizes my pain and exhaustion.  When I hurt, he hurts more. When I’m tired, he 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 over the little things: trying to get out of the house on time, his not listening, his forgetfulness, and the fact that he is easily distracted when I'm trying to have a serious conversation with him.

Our life is only going to become more difficult as we age. Michael is a prime candidate for dementia and/or Alzheimer’s. He has been having balance difficulties lately and has nearly fallen a few times. 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.

Michael has become a different person because of his brain injury. He’s not the man I fell in love with, but I still love him dearly and more every day.  You’ve all spent some time with him and have seen some of his impairments. But you’ve never seen the full extent of his disability. You’ve never seen him explode with anger. You’ve never seen him get easily frustrated with the simplest of tasks.  You’ve never seen the purse exhaustion after even just a shower. 

From a distance, our life probably doesn’t seem that difficult to you. He doesn’t work.  He has all this free time. What’s the problem? Well, there’s a reason he 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.

Over the years, when asked by others for help, we’ve always responded favorably, with our time, our money, and/or just helping out. At times, when we’ve seen a need, we offered assistance without being asked. For the past year, I’ve hoped that at least one of you would call and offer to visit for a week.  Run a few of the errands so that I be home at a normal hour.  Take the kids for a weekend so the house is just quiet.  Send a gift card for a day at the spa so I can just be pampered for a day.  Have dinner delivered, even from across the miles. 

Thank you for listening, caring, and helping!

(adapted from a message written by an ‘anonymous caregiver’ to Brainline.org)

To learn more about Michael or to donate funds for medical expenses, click HERE for the Loving the Lyons Family YouCaring site.  

https://www.youcaring.com/medical-fundraiser/loving-the-lyons-family/304952