What now?

My sisters and I buried our mom in 2005 after watching her waste away from cancer. She was 65. Our dad developed Multiple System Atrophy, a form of Parkinsonism, and was diagnosed the next year. We spent the past five years watching him slowly lose his jovial personality, his laugh, the sparkle in his eyes. As his world grew smaller and smaller, our responsibilities grew larger and larger. We counted out medication for him to take each day, drove him to doctors' appointments, brought him dinner, helped him with his laundry, paid his bills. When it got too much for us to do and take care of our own children, we persuaded him to move from our family home where he had lived for 42 years and move to a house down the street from me. He left his church, his volunteer work, his penuchle club. We watched as he forgot the words for things and called the "exit" at the grocery the "going out place" and the deli the "cheese place." He struggled to express himself until he just got frustrated and sat in a chair and didn't speak.

The hardest thing for me to do was to take away his keys when the doctor told him he couldn't drive anymore. This was a man who had worked for Chevrolet Motor Division for 30 years. He drove for a living. He drove us to Florida, to Michigan, to Cape Cod, without cruise control, without a relief driver on our vacations every year. He drove us to ball games and the skating rink and drove me to Texas when I moved away. I had to take away his keys like he was a reckless 16 year old who had gotten one too many speeding tickets. He was angry, but more than that, he was hurt. He didn't speak to me for 3 weeks. He didn't tell me he loved me or ask me how my day was or tell me he understood why I felt I had to strip him of his last bit of independence.

When I left for vacation, my thoughts were, "What if something happens to me or Dad while I am gone, and we've left with him not speaking." I went down and tried to make amends. I don't think he forgave me, but he did tell me he loved me, so that was something.

While I was away, Dad ended up in the hospital. From there, he went to rehab and then to a nursing home for more rehab. My sisters and I did his soiled laundry and washed feces off his shoes when he couldn't make it to the bathroom and brought him deodorant and Wint-O-Green Lifesavers and got him coffee from the nurses' station and watched as the man who was our dad, our hero, the man who loved us best in the world, struggled to get up out of his chair and walk with a walker without losing his balance. We wanted to help, to lead, to share our strength, but he would push us away as if to say, "I've lost everything else, at least let me walk by myself."

Dad died in July. He had written a Living Will along with a DNR. When the time came for us to decide in the emergency room if we wanted to override Dad's wishes (you do have that option, you know), we had to decide together to honor Dad and let him go in peace. We told the doctors that we wanted him comfortable but not kept alive by extraordinary measures. We gave him medication to ease any anxiety. We gave him oxygen so he wouldn't feel like he was drowning. We made him comfortable and waited.

Dad lingered for five days, and even when we knew, we KNEW, that this was the end, we kept holding on to every breath, every rise of his chest, every twitch of a leg, because as long as he was breathing, he was ALIVE, and we weren't alone.

These last six months have been a blur, a whirl of going through, passing out, moving on. We've sold his house and distributed his possessions. We've cashed in insurance policies and closed bank accounts and had his headstone etched with the date of his death. The only thing left to do is pay last year's taxes and close the estate and then all traces of Dad alive will be gone. It is a lonely feeling, and nobody tells you how much this sucks.

In my mind, I am still a teenager, way too young to be parentless, and I am so very sad.