This diary contains descriptions of death and dying. It is intended to be a cautionary tale, and should make you think about talking about death with your family. No matter where you are in life, you should make your wishes clear. Note, the story here is true, but I have changed some names to protect the privacy of the people it is about. Also note, I am not writing this as a blatant bid for sympathy.
My summer sucked. In January my mother in law, Mary, was diagnosed with cancer. She had surgery in February and then started chemotherapy. Her treatments usually meant at least one night stay at the hospital. My father in law, Aaron would stay in the room with her, not wanting to leave her side. In May she had a CT scan that showed “spots on her lungs.” In June my wife, Sally, hurt her back. All of July she spent mostly immobile, and in August had back surgery. Two weeks later, we were traveling five hours between Chicago and St. Louis to help provide support for my father in law, Aaron. That is not exactly fun that soon after back surgery.
Mary started a second round of chemotherapy in July. To understand a little more, let me describe her. She was in her 80s, four foot 10, in her heels, and at best 90 pounds with her clothes on, soaking wet. My in laws live in a small town in Southern Illinois, and went to a hospital in St. Louis for her treatment – about a 2 hour drive. The second round of Chemo involved 3 day stay in the hospital.
The first dose of this second round of chemo ended up with Mary in ICU with near heart failure. Apparently the doctor did not really account for the amount of fluids she would get – essentially she got a dose sized for an average man. She was sent home after a week in ICU, and two weeks later, went back to receive a second dose. Four days after going home the second time, she was confused, not eating or drinking and obviously in bad shape. After several calls back and forth with Aaron, he finally took her to the local ER, and then had her transferred back to St. Louis.
I am going to take a sideways step here and talk about an important discussion everyone needs to have. In my family, we are open about our wishes. My dad carries a Do Not Resuscitate notification with him, and has one tacked to the wall in his bedroom. My mom gave me power of attorney, and health care power of attorney with clear directions to do no heroic efforts in case of catastrophic health event. While my family has always been open about our various wishes, I knew I needed to make clear what my mom wanted. I started by asking some simple questions – what should I do if you fall and break your hip – do you want to stay at home and have in home care, or do you want to move to a rehab facility? What about a stroke? At the time she was living in rural Upper Peninsula Michigan, and she was adamant that she wanted to stay at home. Six months later she called me to tell me she was moving to a continuous care retirement home in Central Illinois. She had thought hard about the questions I asked and knew that the care in rural UP Michigan, would not be sufficient for a healthy, but aging woman. Our family seems to take a perverse joy in talking about how we don’t want to die, and what to do when we do end up at the end of our lives – LET ME DIE DAMMIT.
A recent BBC article recommended that doctors have this type of conversation at various points in life. These conversations include a general conversation when the patient is healthy, a more detailed conversation when some life changing event occurs, such as a cancer diagnosis or surgery, a much more detailed conversation as health deteriorates. Doctors don’t like having these conversations. Families don’t like having these conversations. But without these conversations, doctors will do extraordinary things to prolong death, often needlessly.
My in laws avoided talking about death, illness, or any other “unpleasant things.” In fact, Mary didn’t even tell her siblings, or her best friend, that she had cancer. The medical staff at the hospital did not have clear directions for end of life care – and this is the important discussion everyone needs to have.
When Mary went back to St. Louis, on a Friday, she was to sick to make the decisions she needed to, and Aaron was to stressed to understand the ramifications of not making those decisions. Mary weighed 74 pounds when she was admitted. On Saturday, Sally and I traveled from Chicago to St. Louis to see Mary and help Aaron. Her main oncologist kept on putting on a happy face, that with fluids and food, she will recover and things will be fine. On Sunday, at least to me, it was evident this wasn’t true. The nursing staff and other doctors told us food and fluids and she would bounce back. Sally and I went back home Sunday evening. On Monday evening we got a call from Aaron, telling us the doctors wanted to put in a gastric feeding tube. We drove back to St. Louis on Tuesday. Again, the doctors were telling us this is for quality of life. If we do this, she might recover. Weirdly, the palliative care doctor visited us and let slip that this was really end of life care. When the oncologist came in later that day, she kept on talking about “quality of life”, and possibility of living up to a year. WHAT THE FUCK DOES QUALITY OF LIFE MEAN? After I asked some pointed questions, she did say that my mother in law might live as long as two weeks. WAIT – WHAT HAPPENED TO SIX MONTHS OR A YEAR?
I don’t think Aaron was really absorbing what was happening. After all, the love of his life, a companion of over 60 years, was dying. He wanted to do everything he could to keep her alive. He was completely overwhelmed, exhausted both physically and emotionally, but he still needed to make the decisions. Mary was less and less alert and less willing to talk, except to ask for water or go to the bathroom. On Wednesday, after the G-tube was put in, the hospital called hospice. She would go home “Thursday or Friday”. This was the weekend of Labor Day.
It fell to Sally to call the family to let them know. “Why did she keep secrets?” “She always wanted to get away from us”. My wife had to tell her aunts and uncles that their sister was going to die, and hear from them how much they resented her for not telling them about her illness.
Mary was sent home by medical transport on Thursday. We were told that with Medicare, a hospice nurse would only come in every other day. That meant that “the family” had to flush the G-tube, monitor her ongoing deterioration, clean her, comfort her, and give her meds. What do we know about taking care of all that? We arranged for a friend of a friend, Cherie, who is a nurse to come in to provide support. Another very close family friend, Mike, also helped out with advice and food. He had been a paramedic in a previous career, and was able to interpret a lot of what was happening for us. Mike’s mom and Mary were best friends. Mikes mom had died in April, and he was still in pain from the experience.
Hospice provided us with several pamphlets on what dying looked like and what to expect. Reading that did not really prepare us for reality. Think of how stressful it is to have to take care of your dying loved one. You are an emotional wreck, you have to do things you were never trained for like administer medications, wash your loved one, help them get comfortable, and flush the G-tube and restart the feedings. WHO TRAINS FOR THIS? Oh, and you have to do this while friends want to come over to say good bye. UM SORRY, NO, SHE IS NOT TAKING VISITORS.
Family dynamics is interesting. Sally took on calling the family and friends, she helped Aaron with decision making. My sister in law, Jill, started cleaning the house – dusting, throwing stuff away, putting stuff away - all the things that had not been done while Mary was ill.
Death is a life changing event.
We took turns sitting with my mother in law, watching as her breathing become more labored, and she became less and less active over those few days. We played her favorite opera music. Cherie stayed the night, and helped with the G-tube, washing and moving her around to make her breathing more comfortable. The few friends who did come over, provided food, and left.
Along the way, someone noticed that Mary’s engagement ring was missing. SOMEONE STOLE IT AT THE HOSPITAL. That accusation was made a lot over the next few weeks.
I left Monday afternoon to go back to Chicago to take care of our own kids. Two hours into my 5 ½ hour trip, I got a call from Mike. Mary had died.
Had I left to soon? Should I have stayed? Should I turn around? NOW WHAT?
I went home.
Jill washed Mary’s body, and dressed her. Hospice called the funeral home to get the body. Sally took on calling the family, again. No one slept that night.
Sally helped plan the funeral with my father in law. Thank god for those professionals to help through those times of trouble. Jill kept cleaning.
My sister’s spouse died a few years ago. Before she died, she planned out her funeral, including that she wanted to be cremated, what music to play at her memorial, who she wanted to speak, etc. When my grandmother died, she had her obituary written and hanging in the closet next to the clothes she wanted to be buried in. My mom already has her burial plot, and funeral service planned. My dad is blunt – cremate him and “dump the ashes in the ocean”.
Sally and Aaron planned a funeral from scratch. What is good funeral music? What readings? The local priest in on vacation, who can take his place? The funeral home wants pictures to make a video – who has good pictures (of someone who really didn’t like her picture taken)? What do we do for the visitation? OH, FAMILY FROM OUT OF TOWN IS COMING, AND WANT US TO FIND THEM A PLACE TO STAY!
Jill started the really deep cleaning – throwing away the magazines that had collected, moving the paintings that had been stored behind the couch, and tons of other stuff, knowing that the nosy family members would be coming and judging.
A month after the funeral, Sally was back visiting my father. She was cleaning out a cupboard of out of date food, and other things that had collected over the year, and found a tin box. She opened it to find a tissue and an envelope. Inside the envelope was Mary’s ring and watch. Aaron had no idea it was there. Apparently Mary had hidden it there because she was worried about losing it at the hospital, and was worried that someone would break into the house and steal it.
There are a lot of other weird things that happen around funerals, and I am not going to take the time to tell all of the things for this one. But I do want to know why I was chosen to write the obituary, and give the eulogy.
Folks, have those tough conversations. Mary did not need the G-tube. The doctors were not forthcoming about her health in a way that was helpful. Aaron was not prepared to make those decisions in that highly stressful time, and we could not make them for him. Common people are not prepared to have to make these decisions, and should not have to.
Talk about your wishes and about how you want to die, and how you want your remains be disposed of. Do it before someone else has to make those decisions. Write it down. The medical establishment will not make it easy for you. Doctors don’t like talking about death. They want to do everything possible to prolong life – sometimes doing extreme measures that don’t really add much time. I believe, but cannot be sure, it will actually help with grieving. If you are in the position of having to make those decisions, you don’t want to second guess yourself later.
