I haven't written a blog for a few days because I am out of town visiting my brother. He is in the last stages of ALS and is dying. We don't know if he has a few days or weeks to live, but the doctors tell us he doesn't have much time. ALS is a particularly cruel disease. You may know it as Lou Gehrig's disease. From a layman's point of view, you continue to lose muscle control over your own body until you die.
About a year and a half ago my brother was perfectly healthy. He had retired and he and his companion were living the typical retiree's American Dream of traveling around the country in a 5th wheel and travel trailer. Out of nowhere he started seeing some symptoms. He started dropping things, then tripping or falling. He is a widower with four daughters. At his daughters' insistence, he underwent a complete physical. He is a veteran and went to the VA for his physical. They diagnosed ALS. As the disease progressed, he began losing more muscle control. He stopped traveling. Soon, he couldn't lift things and stopped walking and became confined to a wheel chair. At the insistence of his daughters, he moved in with his oldest daughter so she and her son could care for him. He lost more and more control over his body. He went on a breathing ventilator. Soon he was bed ridden and relied on machines not only for breathing but for eating and for urinary and bowel movements.
He was fortunate that he had proper insurance and was well covered. Not only the VA, but Medicare and supplemental. I shudder to think what he would have done without his medical coverage. He is on home care and his bedroom/bath were updated to care for his needs. His only joy now, besides seeing his family, is watching television on a big screen TV with surround sound. He stopped using a computer months ago.
It is difficult visiting him. He can barely talk. He has tubes in his arms, across his body and in several orifices. He has to have air pumped into his lungs to help him talk. His daughter has to come in, pump him with air, and he is able to speak in short gasps. He says it hurts him to talk because he can't breathe when he talks.
Before he became so disabled, he used to say, "I'm not sick, I am disabled." You see, he has full mental capacity. It is just his body giving out.
I used to think that my father and mother had it rough at the end. My dad, at 79, had a stroke a few years prior to his death. Afterwards, he had the mind of a 3 year old. However his body was fully functional and he was able to walk and feed himself his last few years, though my mother had to change and bathe him. My mother died last year at 93. She had those tiny mini-strokes six months prior to her death and had trouble with her memory and she became bedridden then died. I also had 2 older brothers who died. One died at 66, though he had just been diagnosed with leukemia, he actually died from an aneurysm that burst. His death was sudden. I had another brother who died from years of lost hope. His death was also short in coming. We were shocked by both brothers' deaths.
Today, thinking about all of these deaths in my family over the last several years has caused me to be very contemplative. Death is inevitable. Sometimes, I think we in the U.S. don't think about it enough. We are all going to die. If death is a natural part of life, then we should stop to consider our future destiny and document our wishes. The use of the term "death panels" is absolutely ridiculous. The doctors and nurses have talked to my brother's family extensively about my brother's last days, hospice, nursing, making choices about life and death. They have spent much time talking about his options. You have to be able to discuss your options at his point in his life.
In meeting with many family members here this week, I also find that three more of my nephews are heading off to war. One is currently in Iraq - his 3rd tour, another is on on his way to Afghanistan - after 2 tours in Iraq, and one who is in training is going overseas in a few weeks. Additionally, I spoke with some of their younger brothers and sisters who are planning on enlisting or going into ROTC. Many are planning careers in the military. Service to our country and the economy are major factors in their decisions.
Watching the news, I see that so many national/global issues personally impact my family and most families across America. In thinking about this all week, it is absolutely clear to me that we should all be supportive of:
1. Universal Health care with a Public Option so that Insurance is affordable and provided to all Americans. Pre-existing conditions should NEVER be a factor.
2. The Wars in the Middle East and the Economy: the state of the economy is causing more and more young people to go into the military, not only for their service to our country, but for economic reasons. Readers: We need to talk about life and death. Death is part of the natural order of things. Tell me your thoughts of death. I grieve for my brother's illness and pain, not for the natural order of life and death. I grieve for those who do not have enough health care coverage. I grieve for those who do not have enough care in their hearts to want others to receive proper health care. I grieve for our young people going off to war whose lives are being cut short. While I support our President in sending more troops to Afghanistan, I continue to believe our involvement in Iraq was wrong. However, I still grieve for the soldiers who are dying every, every day and pray for the safety of my nephews.
And readers, please do not send condolences or say you are sorry to hear about the illnesses and deaths in my family. I received several nice messages from you when my mother and brother passed away. I ask instead for your ideas on how we can talk about the inevitability of death and how on earth are we going to be able to cope with the needs of all of the Baby Boomers as they (including me and mine) approach our Golden Years. Yes. We are all going to die. Yes, many of us will need extensive health care in our Golden Years. This care will range from days to months to years; from occasional to daily on-hands care by medical professionals. This is the reality. We all need to be thinking and planning for our own futures and do each of us want our children to go through what my brother's daughters are going through right now? Or do you want to go to a nursing home? Are you prepared to give up all of your worldly goods for hospice care? Or, instead will you live in denial and say "No! That will not happen to me."
When I was a child I thought as a child: "Only old people die. They close their eyes and go to sleep."
Today: "The Boomers will all die. Some will require years of hands-on medical treatment by family and medical care providers."