I've been a DKos "reader" for several years although I can count on one hand the number of times I've written a comment. (It seems someone has always written what I would so that has satisfied my need to add my two cents). Some read a paper with their morning coffee, I start my mornings here. Within the context of the current health care debate I think I am experiencing something worth sharing. It's about death and dying.....(and I apologize for it's length).
One year ago this past August 1 my mom died following heart surgery at the age of 79. Mom was born with a congenital heart defect and true to her giving spirit had agreed to participate in a long term Mayo Clinic study of this defect during the 60's and 70's. Mom took excellent care of herself and the doctors were astonished that she lived as long as she did. The heart disease intensified following radiation for breast cancer and her only real hope was valve replacement surgery. She took a couple of months to come to terms with the need for surgery and decided she didn't want to live dragging an oxygen tank around while becoming weaker by the day. She told me she needed to take the risk (of which she was very aware) because Dad was getting sicker and she needed to be well to take care of him. We arrived at the hospital at 5am and Mom had her living will in tow. She was extraordinarily clear with everyone...if it was her time to go, absolutely no "heroic" measures were to be taken. Mom survived the surgery but died later that evening. She had been conscious for a few hours prior and I (we) were able to give her little hugs and tell her how much we loved her .....that's the part I will be forever grateful for. Three weeks later the bill came to my parents home. It was addressed to Mom. For 14 hours in the hospital the bill was $67,000. Between Medicare and their supplemental insurance, Dad's portion was reasonable. Even the day before surgery Mom didn't know if the surgery would be covered by Medicare/supplemental. This worried her so much my sister and I told her not to even think about it, we would take care of it if needed (we weren't exactly sure how we would do this but that was the least of our concern). For decades prior to being eligible for Medicare, Mom's health insurance premiums were the maximum for an individual policy. Even back then the infamous pre-existing condition wreaked it's havoc. Several times over those years it was a major contributor which brought them close to financial ruin. She made sure through her scrimping and saving that she and Dad would have a decent supplemental insurance when it became available.
Then in September my 44yr old cousin died unexpectedly from a massive coronary. In November my Aunt died. In January, our dear boxer, Bailey, died. In March, my Uncle died. Throughout this time and since the day of Mom's death, Dad had been with either me or my sister. Either at our homes or one of us with him at his home. We have made many, many trips via plane or car. After 56 yrs of marriage, facing his own illness and being a double amputee Dad has been more vulnerable than I've ever known him. Which brings me to his illness....
Eighteen years ago he was diagnosed with prostrate cancer. It was caught early. He opted for radiation therapy. He was clear, surgery with the possible side effects, was not an option he would consider. As a double amputee he felt the possible side effects were not something he could deal with. For 14 years the cancer was not detectable. Then, it reared it's ugly head again. For awhile Dad took hormone shots then when his PSA hit 50 it was time for chemo. He opted for half treatments every 2 weeks after the dreadful effects of 2 full treatments. He did this for 2 years but after Mom's death he wanted to be done with chemo. Last October he took his last round of chemo on the same day he officially retired at age 85 (he had worked 5-8 hours a week for the past 10 years). Then in April of this year the intense back pain started. The cancer is now in his bones. He wanted to be home so I took home and stayed for 6 wks until my sister could come for awhile and I could go home to my husband, sons and their families for a few weeks. In June Dad finished a round of radiation strictly for pain relief. That coupled with round the clock Percocet worked for awhile. Then it was decision time. The "hard" conversations started. Again, Dad is clear. He wants to die at home. His GP recommended a couple of hospice programs so my sister and I researched both of them. We both spoke with him about hospice care making clear this was totally his decision. He repeatedly has told us he's not afraid of death but he is afraid of the pain he knows he's going to face. After a few weeks of thinking it over he was ready to start the at home hospice program. They have been wonderful! They came to the house to talk with us about the program prior to Dad entering. One of the conditions of hospice is that the patient is no longer seeking curative treatment. Initially that gave Dad pause but upon thinking about it he realized he'd stopped that 8 months prior. We all had an excellent conversation about living wills. Dad already had a living will but with their information realized he wanted to amend his to give either me OR my sister the decision power when/if needed. A simple word change from AND to OR was all that was needed. Dad has had complete control throughout. He scoffs at the "deathers" when he hears reports of them on TV or while reading his favorite web sites. He's said he thinks the majority of them are typical "followers", easily led, intellectually lazy and more than likely terrified of the prospect of their own death. I agree with him. Dad has been and remains the one and only person on his "death panel" as he put it. This is his experience and he is in charge, the way it has been and will continue to be with health care reform. This program is paid for by Medicare and has to be one of their best. It gives the patient needed medical care and control, the family peace of mind and support and on a more callous note, has to be very cost effective (Mom would like that, as she called Medicare once to let them know she didn't receive an item they were billed for during a short hospitalization several years ago....honest and detailed she was!).
Dad feels fortunate and grateful for many, many things in his life, including the medical care he has received. We have often talked of those who attempt (or do) put a price on life (primarily some nameless, faceless insurance administrator or lawmakers who refuse to provide basic health care to all). We have talked about the horror of one persons life seemingly being more valuable than another in our society. It is a moral question neither of us has heard an elected official touch.
Meanwhile, Dad is dying with grace and on his terms. He has excellent medical support with a minimum of a weekly visit from his hospice nurse or as often as he requests. The hospice doctor comes to see him frequently as well. They make sure his pain is under control and that all his medical needs are met. My sister and I take turns being with him, although the day is rapidly approaching when we will both be there, having booked a one-way flight.......
Oh, and Mom....we filled out your absentee ballot for you and tucked it in the memory box. The candidate you backed, in part because of health care reform promises, won. You probably know that though :).