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."
Dear Dee :
ReplyDeleteI respect the pain of your family, that is also the pain of my family as I also watch the decay of my uncles, aunts, mother, brothers and sisters, etc...
We should avoid politics here because we are talking of family and sad stories that we all have to live.
But we can see that Health Care is something extremely important, an ethical question, and that it would be wonderful if the services can include more people. It is political but it is also ethical.
I am a guy that constantly fights with my Goose Feather and bottle of ink againt War and the WarMongers.
So, I pray for a prompt conclusion to the Violence and the safe return of those fine youngsters of your family. That they return unharmed.
And I express my deepest sympathies for your fight against Racial Violence, Racial Hatred, Racial Harassment and Profiling, unkindness and inhumanity
You fight for understanding, kindness and humanity.
Raciality.com
Vicente Duque
I believe the "death with dignity" movement is the appropriate answer even though it is contrary to some religious teachings. Everyone should have a medical power of attorney which allows someone else to make medical decisions on your behalf if you are incapacitated. A companion financial power of attorney allows your agent to make financial decisions on your behalf in that situation. One must be careful with the latter since a general power of attorney of this sort would permit your representative to sell any and all of your property and abscond with the proceeds or use them up under the authority granted by the POA.
ReplyDeleteMost people with terminal disease do not wish to be a burden on anyone, especially their loved ones. They do not wish to have someone else be responsible for their most intimate bodily functions and malfunctions. When the end is near or when one is in unbearable pain, most would prefer to exit this life peacefully in the same way a treasured pet is mercifully put to sleep.
Of course, this decision must be your own not that of a board or panel of any kind, nor should it be the decision of heirs who might benefit from your early departure for that great blog in the sky. A priest or minister or hospical omsbudsman should make known to the patient what his or her options are in this regard -- and of course those options need to liberalized. As a minimum, I believe everyone is allowed to refuse food and hydration. This hastens death obviously but is not quite as merciful as death with dignity.
Everyone should indicate in writing how he or she wishes his or her remains to be disposed of: normal burial, cremation, ashes buried or scattered to the four winds, etc. Some singles elect to have their ashes interred at the foot of a parent's grave with a small marker. The VA will provide such a marker for veterans but arrangements will have to be made for mounting it in concrete. This writing should also indicate what if any arrangements have been made with the funeral home regading a memorial or funeral service and whether all the costs have already been paid in advance and where the any related documents, receipts, etc. are stored. If normal burial is preferred, it is a good idea to pick out the casket and vault in advance so that the funeral directdor does not prey on the survivor's sympathy to sell them a more expensive package deal.
I helped my older siblings take care of all of these matters in advance so now the decisions have all been made and everyone can relax.
One of the biggest mistakes one can make is to leave this world without letting someone know where your most important records are stored and what assets you own. Often people die and their heirs have no idea about either of the above.
I recommend to my clients that they put together a notebook or dossier that lists the location of all important documents, the location of deeds or other evidence of ownership of assets,an inventory of assets (brokerage accounts, insurance policies, bank accounts, etc.) If a number of institutions like banks, brokerages, social security, insurance companies need to be notified, often form letters can be prepared in advance that leaves the person's name and the date on the letter blank. This facilitates matters dramatically especially under circumstances of grieving and making the final disposition of the deceased.
ReplyDeleteFinally, everyone should have a will or a living trust. If most of one's property is jointly held with right of survivorship, it will pass directly to the joint owner outside probate. A will is a public document so one advantage of a living trust is that your assets do not become public. Of course,a living trust also avoids probate in the same way that joint ownership does. Some also use the POD approach on bank accounts and other assets. This simply specifies to whom these assets should be conveyed upon your death. That then occurs outside probate. Probate costs can be very high and my also take a significant amount of time.
It may be useful to acqaint oneself with the estate tax return that may be required. At the moment only estates over $3.5 million are required to submit a tax return.
A grandniece expressed to me the idea: "If you're not living on the edge, you're just taking up space!" That probably goes a little to far but it is true that when one can no longer contribute in any way because of physical or mental diminished capacity or if one requires extensive personal care and gets no joy from anything, it may well be time to depart.
Some of these things are hard to think about and take the appropriate action as many have found out to their dismay. One has to recognize as Dee points out that "you must die" and make it as easy as possible for your loved ones by doing the necessary advanced planning for the inevitable. After all, that could be tomorrow or even this afternoon.
The Super Beautiful Blonde that crashed the Party at the White House. Beauty and Blondness can leak in parties better than Darkness and Clumsiness - Tiger Woods Blondes are safe !
ReplyDeleteThe Beauty of the Super Blonde Model that crashed the Party at the White House and that had her videos with the President, the Vice President and the Powerful Beautiful People of the "Beltway".
She will never be tasered or sprayed by the police with chemicals. I think that she won't be beaten up in a Police Station.
Mr Obama accused of being a Racist, Constantly ! ( by idiots )
That is true ! .... And the Real Racists are those in Fox News that accuse Mr Obama of being a Racist.
It is the same for the many angry politicians that accuse Justice Sonia Sotomayor of being a Racist or Backwards Racist, or PostRacist Racist, or Retro Racist, or Racist to the minus one power, or Reverse Racist or anything.
Those Tom Tancredos, Newt Gingrichs, Rush Limbaughs, and the "Great Patriots" of Fox News are the Real Racists. Agitating the issue of Race, when there is nothing about it.
The Harvard Professor may have been tired or crazy, but there was no reason to mistreat him. I bet that a Beautiful Tall Blonde Blue Eyed Professor would have had no trouble with those Boston Policemen.
Hispanic Ladies driving a car have been tasered and sprayed or fumigated with chemicals for no reason, except that they were dark and spoke poor English.
Some people have received traffic fines because of not speaking "Shakesperean" English. "To be or not to be". And they were not.
That would never happened to the Beautiful Blonde that crashed the party at the White House. She will never be sprayed with Chemicals.
And the female friends of Tiger Woods are completely safe. Look at the covers of magazines. Wow ! Wow !! ----- No Police or Traffic Police action against those Blondes and White Milk People.
Raciality.com
Vicente Duque