Dignifying Dementia by Elizabeth Tierney Page A

present. We arrived, and we all sat in a semi-circle, as the facilitator explained the information she had written on a white board. She had printed the day, the date and had drawn a picture of a sun with a smiley face, to describe the day’s weather. When she took attendance, two people argued over which of them was nicknamed ‘Captain Joe.’ Within minutes of our arrival my brilliant educational guru said, “What are we doing here? Let’s get out of here.” He reached for my hand and was out of his chair heading for the door.
    Jim was an educated, intelligent, confused, paranoid, hallucinating, delusional man, not a kindergartener – so much for daycare.
    Although the program didn’t work for Jim, and the social worker’s advice at the support group meetings provided me with little help, I respected the director. One day, in utter desperation, I went looking for her. I found her as she was just finishing a meeting with the Director of Nursing from the local technical college. I waited. When I saw them, I blurted out, “Please, please, I need to talk. I am losing my mind.”
    They sat me down and said, in no uncertain terms, “You cannot take care of Jim by yourself anymore.” They asked a simple question: “If you break down, if your health deteriorates, what will happen to Jim?” I didn’t want to believe it or hear it, but I knew in my heart they were right. I had to acknowledge that I couldn’t go it alone anymore. I had to get help, but how could I admit to myself that I couldn’t help him?
    The diagnostic process itself had been emotionally draining. We had seen physicians, had names of diseases and had tried medications, but I had no insights into the awful and dramatic behavioral changes that his illness had already wrought and would continue to make, and I didn’t know how to handle them anyway. I was naïve to think I could help him; my ignorance seemed to make things worse, and I was worn out.
    The notion of bringing in help was earth-shattering to me. That I was incapable of caring for the man I loved was nothing short of failure – of unfathomable proportions. I loved Jim and had let him down in his hour of greatest need. I simply wasn’t up to the task. What an admission! What guilt!
    When I left the two women, I phoned a friend to tell her what they’d said to me. She listened and then quoted the airlines, “Put your oxygen mask on yourself first, then on the person next to you.” I understood what that statement meant. To protect him, I had to protect me; I returned home with a heavy heart. I had no idea what “getting help” meant, or how it would change our lives. All I understood was that I couldn’t go it alone anymore.

    Because I had seen how hard it was to protect my mother from losing her assets when my father became ill, we had purchased long-term care insurance – fortunately. When my parents were both unwell, we had talked to a lawyer and our accountant to determine how to handle Mom’s situation. When Jim and I selected our insurance, to keep our premiums down, we had bought a three-year plan with a 100-day deductible. We did so based on statistics; at that time, people usually went from hospital to nursing home, as my mother had, and Medicare paid up to 100 days. According to the Center for Disease Control and Prevention, the average length of stay in a nursing home in 2004 was 835 days, shorter than the lookback period, the time when you can divest yourself of your assets. It was a good decision – when we made it.
    Ironically, my decision to continue driving south seemed to have been a wise one, not only because of the weather and the space in the apartment but also because the daily reimbursement from the insurance company was better suited for the costs of help in the South than in the more expensive Northeast.
    After a couple of days of thought, defeated and resigned, I