Christmas without Dad
Yesterday, I passed the nursing home where my father suffered for 9 weeks with MRSA pneumonia. He died shortly after the holidays on January 9, 2009. His passing was very sad but welcome after we had watched him gradually and progressively fade away. His body weight was just falling off, steadily and alarmingly, and his physical and emotional strength was gone.
This year will be our first Christmas without him. In the weeks preceding Christmas last year, my mother and I and my brothers kids all tried to think of things that might please him, while he was in his lonely isolation room in the Nursing Home. Most years anything with chocolate or other sweet foods would totally satisfy him. He had an appetite that wouldn’t end. Last year, my brothers kids put together a collage of photos for his bare walls. He had a profound hearing loss from the necessary antibiotics, so he had difficulty hearing his TV. I picked up a new digital TV for him that we thought could have an amplifier device added to it to help him hear. It didn’t work, so we brought back his older one so he could hear it a little. Then we got him one of those amplifier devices that you see on TV. When Mum or us kids weren’t there, the TV was all he had….other than his caregivers that is.
I brought in a big fake poinsettia, and somebody brought by a little crocheted ornament to hang on his drawer handle. All of these things made his room more festive, but he didn’t care. He wanted to be with my mother at home. He pleaded and he bargained with us all the time. He would ask, “If I eat, would I be able to go home?” “If I walk, would I be able to go home?” The sad fact was that he couldn’t do either. He couldn’t even sit up or turn over in bed on his own. His illness and the powerful drugs he needed for it made him unable to do either, eat or walk. At times, I think his caregivers thought he was being difficult…they thought he wouldn’t walk or eat. I am convinced now, after reading stories of others who have suffered through deadly MRSA that he just plain COULDN”T eat or walk. The disease and the treatment took away his strength and his appetite.
My mother and I considered taking him home. For him to come home, we would need help. My mother was 82 at that time. I am 60. I am big and strong, but I could not do all that my father needed done alone. He had become a complete care bedbound patient when he became ill with MRSA. He needed so much care and of course there was the problem of him still being colonized and coughing up huge amounts of sputum. How do we go about caring for him at home without putting my elderly mother at risk for MRSA herself? Hospice would help, for perhaps an hour or two a day. The logistics of taking Dad home were overwhelming. He never came home and it broke his heart and ours.
So, although all of us did what we could to cheer Dad up on the holidays last year, the only thing that worked was our visits and especially my mothers constant presence at his side. He needed her more than anything else, including medicine. The medicines never worked.
I drove by his nursing home yesterday. The Christmas lights are there and the front of the building is festive, but none of that hides the suffering going on inside. My selfish comment to my husband was…”I am so glad that Mum and I are not still going in there all the time”. I miss Dad more than anyone can imagine, but I do not miss seeing him suffer and I don’t miss the frustration of not being able to make him healthier or happier.
These intimate details of the suffering and frustrations of dying MRSA patients and their families are the facts of life and death with MRSA. It is impossible to know the pain of the disease unless you have had it yourself or you have helped care for someone you love only to see them suffer and die from it. These are the details that we must get across to law makers, the CDC, healthcare providers and others who can make a difference in MRSA prevention.
