Blog-Vol. 1-Part 2
Grief is such an individualized personal process. There is no right way or wrong way-it’s simply your way. For me, during Dad’s ten year progression of Alzheimer’s Disease (aka AD)-I grieved individual losses starting with Dad's disorganized home, a disheveled look, sloppy dressing,and basically unshaved daily-until my brother and I intervened. I grieved when his daily telephone calls stopped because he didn’t remember my number or how to use the phone. I grieved when I realized he was calling me sweetheart all the time because he didn’t remember my name. I grieved when he no longer recognized me as his daughter. I grieved when he was really confused; his speech garbled; and he struggled to find words to express himself. Yet, I knew I had a whole lot of grieving ahead of me due to the possibility of making decisions about symptoms and situations I read about in the research and clinical studies such as muteness, bedridden, forced-feeding, and the possibility of a nursing home.
Unexpectedly, the day Dad died, I broke down-shocked that he had expired. I thought I was prepared, but it just felt so surreal. I was actually in denial for a few minutes. When I got myself together after the initial shock, I was very thankful after I was told that it appeared that Dad died peacefully sitting in his bed. Dad died well, I thought. You may be thinking- what does that mean? Well, when my mother was sick and dying in 2001, I was given a book by a social worker at her HMO entitled, DYING WELL-Peace and Possibilities at the End of Life by Ira Byock, M.D. Basically Byock believes no one should die in physical pain which can be managed. Also, he believes no one should die in emotional pain. In other words, the meaningfulness and love most of us experience at birth, should be experienced at death. He believes this can be accomplished by family members, friends, and the patient in many circumstances by doing the emotional work. My brother and I did the emotional work by telling Dad he was loved and appreciated as a Father; a wonderful husband and provider to us and our mother; and ultimately that his life mattered. So, feeling more peaceful, I proceeded to call his HMO and cancelled the medical appointment I had scheduled earlier that day for a mobile team to come to his home and exam him.
Mixed feelings arose again that day when we viewed Dad’s body before the mortuary transported him. To see him lifeless on the floor where the caregiver and paramedics placed him in order to try to resuscitate him felt disturbing. His mouth was opened and it wasn’t a pleasant look. I even tried to close his mouth, but was unsuccessful because it keep popping open. Soon I felt peace within when I accepted the fact that my brother and I had been successful in keeping Dad in his home until the end-and this was really the end. I can’t adequately express the profoundness of his physical absence in my life. He was always there for me and my brother, as well. Both of us often talk about how deeply dad's spiritual presence lives on in us.
Another revealing feeling caught me off guard after Dad died. Did you know that Alzheimer’s is often referred to as the long good-bye? Patients can live with it anywhere from two to twenty years-yes twenty years! However, dad's long good-bye of about ten years left me feeling sorry for myself and very alone. Selfishly, I actually felt abandoned. I even told friends that I felt like an orphan. I no longer had any parents-first my mother, then my dad!
One of the redeeming qualities of the Atlanta Doctor’s Wives (aka Married to Medicine) reality show was the series dealing with Dr. Jackie’s father, who had AD and actually died on 8-17-15. She confessed on a segment that she thought she was ready for his death-but she was not. I confess, too, I thought I was prepared and ready for Dad’s transition because after all: I had researched the subject extensively; consulted and met with researchers and scientists; and wrote a book about AD, a terminal brain disease. I realize now that I was intellectually and spiritually prepared for Dad’s death, but clueless about the emotional impact because nothing prepares you for the finality of the death of a love one-especially loving, devoted parents. Currently, I don’t believe you’re ever really ready emotionally.
Postscript: I am relieved to have finally been able to share my feelings about Dad’s death with you. So many people who read Stolen accused me of leaving them hanging when I ended the story. They were curious about the progression of the disease, and whether we able to keep him in his home until the end. I am very grateful that Dad died peacefully in his bed-in his own home. For the record, I will be advocating a positive attitudes in my blog posts about AD, a very devastating disease. I hope I haven’t scared you off by beginning my blog website on the subject of death-even though death is inevitable for all of us. It has been about 4 and a half years since Dad died, and I have just recently been able to finalize my blog post, and be at peace with it. Thank you for your patience!