I recently sat down to watch one of my favorite shows Real Time with Bill Maher, and found the discussion about health care intriguing. Bill Maher touched on something that I had been dwelling on: Death. How is health care reform going to change how the elderly are dealt with? By “dealt with” I mean as a person gets older they need more and more care that some families cannot afford, even if they have health care. If someone is old and dying should everything be done to help keep them living? Or should every option be explored to ensure their death is respectable? There is a difference between the two options, a very large difference that many people do not understand or really talk about until the moment is upon them.
The reason I linger on this touchy subject is due to the recent deaths in our families that made me realize how much more difficult it is to care for the elderly. Earlier this year my boyfriends’ family suffered the loss of their grandmother, or Lola, as she was referred to in Tagalog. When I met her a few years ago she was already very old and frail. She had to be helped or carried by family members to get in and out of a car, to be seated in a chair with her feet raised and couldn’t get around very easily, or at all, by herself. She still had a strong mind, and when I was introduced to her for the second time she complained, “I know who she is!”
When she had a stroke the whole family, including us, ran to the hospital waiting room and spent almost everyday over the next week visiting her in the hospital. Turns out she had a blood clot in her brain that caused the stroke, one side of her face was slightly paralyzed, and she could no longer walk, or speak full sentence. She also had to be spoon fed soft foods because it was difficult for her to chew. To add insult to injury, as soon as she was released from the hospital a few weeks later she was rushed back. This happened quite often. Every couple of months the family got phone calls saying she was headed back to the hospital and every time we all feared the worst. This went on for over a year.
Their Lola has a very dedicated, close knit and caring family. It also helped that one of her daughters is a doctor, a few of them are nurses, and she even has grandchildren who are nurses, as well as one who is a lawyer. Some of them worked at the hospital she was admitted to. All of them stayed at her beside every night, taking turns in shifts to ensure someone was with her every minute and keeping open communication with her doctor and nurses. I witnessed the doctor being approached by several relatives as he explained, patiently and repeatedly, her current condition. She had the best care possible, but my heart still sank every time it happened.
I saw her suffer. I saw her family suffer. And worst of all I witnessed how she slowly slipped away. One of the most intense moments was the family meeting that was called at the hospital one evening while everyone was visiting. All of her children discussed what her options were. All of the grandchildren were later informed that the doctors were ordered to resuscitate if Lola went into cardiac arrest. Her children were still discussing whether or not to keep that order. They also informed everyone Lola had a toe that was gangrene, and they were consulting with her doctor to see if they needed to cut the toe off. Lola was very weak, and they didn’t know if she would survive the surgery. Lola was asked what she wanted and we were told she wanted to keep her toe.
As the months passed, we tried to stay positive, and visit her as often as we could. Lola had another stroke, and the gangrene toe spread to her foot, then to her ankle. By then she was took weak to survive the doctors amputating the foot. She was taken care of by her family at home, and the living room was converted in to a fully stocked nursing station. She had a catheter and an IV, as well as a heart monitoring system to ensure she was doing okay. Again, the family watched over her every day in shifts, so she was never alone. When she could speak, she told her family that she was ready to die and she no longer wanted to suffer, or make her family suffer. One of her sons was with her the whole time. He lived with her, quit his job and took care of her full-time . He sacrificed the most out of everyone.
I can’t remember when we saw her last, but a week after our last visit she passed away. She was at home being taken care of by her children. One of the daughters was on her way to the house for her shift when she got a phone call to go home and rest instead of coming over. Anther daughters had just left and the son who lived with Lola was the only one present when she passed away. Lola was a strong-willed and compassionate soul. I was grateful to have met her and witness the love and care her family gave her. It hurt to watch her slowly slip away, and it was reassuring to watch her whole family care for her and mourn her death. Most of this information was gathered and shared by family members, stories told at her funeral, and what I was able to experience myself.
The other monumental death in my life was my great-grandfather, from my father’s side, which happened a few years ago and had similar circumstances, but had a completely different outcome. He was in his mid-nineties still working full-time at a shoe repair shop, walking, talking, and attending all the family parties. One day, while at a bar for a friend’s birthday party, I got a phone call from my father, who never calls, saying my great-grandfather was admitted to the hospital because he had a stroke. I dropped everything and went to the hospital with the rest of my family. He looked so frail and sick I almost left crying because I couldn’t bear to see him in this state. He had an oxygen mask on to ensure he was breathing properly, but he kept trying to take it off because the air was too cold for him. I asked the nurses if it was okay for me to remove it for a bit because he was so uncomfortable, and they advised me not to. I took it off any way, for a few moments so we could talk and I put the mask back after we finished speaking, but it was still hard to understand anything because it was difficult for him to speak at all. We were told he was too weak to walk on his own and would need constant care due to his age.
The original family plan was to take my great-grandfather to a nursing home to get the care he needed. No one in my family is a doctor, a nurse, or even a dental hygienist. He was admitted to a local nursing home close to the family so we could visit him. I sadly did not get to visit him while he was there due to school and work obligations at the time, and visiting hours were always during my classes. I made sure to visit him almost everyday when he was in the hospital because I wasn’t in school at the time.
Months go by before I hear anything from my father or other family members about my great-grandfather’s health and condition. The next phone call I get is my father saying my great-grandfather had passed away. Apparently, some of his children felt the nursing home was too expensive and they opted to care for him at home. I was told he wasn’t taken care of very well and he slowly withered away. It was hard for me to hear that he died this way, but not surprising. My father’s family also isn’t very close, and there tends to be a lot of drama related anger toward one another. I don’t know if I believe that was how he passed away, but it makes me feel sad that I never got to see him again outside of the hospital not hooked up to a machine.
He was the nucleus of the family, and once he passed away it was hard to get the family together for anything. Within the last two years the family has started to arrange small informal family reunions to ensure everyone stays in contact. These events still bring out the drama. One of my uncles decided to announce that my 17 year-old cousin was pregnant.
My father’s side of the family and my boyfriends’ family have very different methods of dealing with a death in the family. Not only did the type of healthcare they had affect how they were allowed to die, but the families also played a large part in how it played out. Great health insurance doesn’t guarantee a peaceful death, and a caring family can’t keep someone from suffering. The decisions we make on someone’s behalf when they are on the brink of death can be crucial and difficult to discuss. I just hope that someday my death will be peaceful, or least quick and painless. I have often heard my mother saying, “Just unplug me if doesn’t look good. Don’t let me suffer.” I tend to feel the same way. Even if I have not officially written my Last Will and Testament, I at least hope no one suffers or prolongs what is always inevitable. Too many see it as a burden, and not as part of the experience of life.
Death is part of life. Health insurance and family baggage make it more complicated than it should be.