Caring

“Like the silkworm you have built a cocoon around yourself. Who will save you? Burst your own cocoon and come out as the beautiful butterfly, as the free soul.” Swami Vivekananda

“Humans are not machines – we are something more. We have feelings and experiences. Material comforts are not sufficient to satisfy us. We need something deeper – human affection.” Dalai Lama

For many people healthcare is mainly considered to be the ability to keep the body functioning properly. I have family and friends trying to keep diabetes under control. My mother is dealing with a bad heart. People I know are dealing with cancer. I worked for several years getting kidney dialysis supplies to patients. We look to our doctors and health care system to keep our bodies alive and working properly. Our healthcare system will pay for flu shots. They will pay for operations to repair the body.

Where we fall down though is trying to fix the mind. I have an Aunt suffering from Alzheimer’s. If she had cancer her insurance would pay for the cancer drugs but they don’t pay for her help in trying to live day-to-day with her mind affected. The State would help pay for her caregivers only if she had less then $2,000.00 to her name.

My nephew turned 13 yesterday. He is a highly intelligent boy and a real geek. He got a robot kit and was excitedly telling me how he was going to program it. He received my Irish dragon picture and declared it “awesome.” He also suffers from Asperger’s Syndrome. For him life is a daily struggle with an extremely intelligent mind that doesn’t function well in social situations. I saw the mood swings in the conversation we had on his birthday. My niece struggled and fought for years to try and get an indifferent medical system to correctly diagnosis her son.

I worked for six years with a woman who had a Down’s Syndrome son. He was one of the sweetest young men you would ever want to meet. She worries about him because he is in his twenties now and she knows that her older daughters will be facing having to take care of him when she and her husband go. It is hard for her to find the help she needs for him.

If we are to truly reform healthcare then we need to reform our care of those suffering not only in body but in mind as well. We need to make it easier for caregivers. We must provide the resources to help care for patient’s with Alzheimer’s. A close friend of mine, my art mentor, recently wrote to me to tell me about caring for his mother who passed away after suffering from Alzheimer’s. The anguish for caring for someone you love and the pain of them not even knowing who you are is unbelievable. My brother’s tell me of the same anguish of dealing with my Aunt.

I know the toll that taking care of her son has had for my niece. She has two other children to care for. I feel the same anguish as he is my godson and in many ways he is my grandson too. We are close. He shares a love of all things geek and fantasy and dragons. We bonded from the start. There is a real pain in hearing him feel hurt. I worry about him.

It is time that we start giving the mind the same healthcare that we give the body. It is time we give caregivers the help they need to care for loved ones. It is one of the most difficult jobs in the world caring for someone you love. I help care for my Mom. She is still able to get around and do most things for herself but I see her body failing. Her arthritis won’t let her do many things with her hands and I open jars and turn keys and do what I can to help. I call her from work every day to make sure she is okay. I do all her shopping for her. Like many caregivers I am aware of what she did for me and I want to care for her. But as my brothers and sister-in-law know in caring for our Aunt and as my niece and her husband know in caring for her son, there is an emotional toll on us as well.

As Congress goes forward with plans to reform healthcare we need to make sure that they understand that it isn’t only a healthy body that is important. You have to care for the mind also. You have to care for the caregivers.