Many boomers are taking care of aging parents. Caretakers, by their very nature, often forget to take care of themselves. They are so lopsided in selflessness, that they get lost in the needs of the other person.
It is unreasonable to be so drained that your own personality changes because too much is falling on your shoulders and you are beyond weary. Many caretakers are slowly drowning in the stress of doing too much for someone else because they don't factor themselves into the equation of needs.
Too many people believe that it is merely selfish to acknowledge that they are exhausted, overwhelmed or irritable from doing too much. It isn't selfish but self-protective to balance the picture and include themselves in the caretaking equation.
It is OK to put siblings on the spot and ask them to pitch in when you need a break or to contribute financial help if that is all they can offer. It may not be as convenient for them to do the caretaking as it is for you but it is necessary for them to step up and relieve you. Unless you ask, there's a good chance they'll let you roll with the responsibility on your own.
We all need to understand our boundaries, what they are and where to set them. Caretakers need to know when to say "no" and to know their limits. Those in distress who need to be cared for sometimes have expectations that rise as time goes on, their lives are often in flux and their concerns center entirely around themselves and their wants and needs.
Caretakers have to be able to differentiate between what has to be done and what doesn't and take on responsibilities accordingly. The trick is to do so without feeling guilty or inadequate.
Remember how your children manipulated you when they were young? Their world revolved around what they wanted. At the other end of life the same things seems to happen and a sick or dying parent can do the same thing.
While children use manipulation as a way of experimenting with their developing power, the aged use it to hang on to their eroding power, to prove to themselves that they're still cared about. It isn't malevolent, it's human.
An elderly parent will tell you how disappointed they are with you when you don't let them get their way. This is especially true in a culture where we take the elderly out of their homes and place them in facilities better equipped to handle their medical needs and keep them safe from the hazards of old age.
There will be all kinds of reasons to demand more and more from you. The reasons will be both legitimate and also excuses. You have to define what is a reasonable request and what is unreasonable without feeling any exaggerated guilt. Logic will often not work for them, so it has to be enough to work for you alone.
Those lifted out of the security of their own homes into the care of strangers in a strange place don't often see it as some kind of advantage but instead react with anxiety, fear, anger and a sense of being utterly betrayed. They will delude themselves about their own ability to remain at home and blame the caretaker for failing them.
Often their minds are deteriorating along with their bodies so arguing logically has a pretty limited impact on the situation. In many cases they'd really rather take their chances in the security of familiar surroundings than relinquish their independence. They don't recognize that their independence has really deteriorated first, and that the new situation is a result of that loss.
The caretaker can't make up for the harshness of aging, for the pain and suffering that often accompanies the end of life. The caretaker must be replenished both in body and spirit before wearing themselves out because then they are of little use to anyone.
Sacrifice must be balanced by self-protectiveness.
". . .I prefer the wintertime, when all is dead around me, and nothing buds, and the truth of eternity, so cold and dark, is revealed to the unfortunate acolytes of reality." - From Super Sad True Love Story by Gary Shteyngart
At the tail end of life, people often wrestle with both their secrets and regrets. Even those who lack self awareness may say things that are important before they die.
It is important to be open to the truths that they reveal. They review their relationships. They ask themselves "Does my son in law know that I love him?" Then they make sure to let them know. It can be an important time to reconcile distance, get closure or share something surprising.
Dying is that final process of saying goodbye to the people you love and examining regrets more closely. It's important to be a receptive audience.
Dying is "the final challenge of living" to Barbara Karnes from Heartland Hospice. She has made a marvelous one and a half hour you tube video about her wisdom on grief, loss and the dying experience. This video is worth your time because she is as honest as the day is long and she will give you a clarity about the journey of dying.
Five Wishes is a pamphlet developed by the organization Aging with Dignity to help people think through their "personal, emotional and spiritual needs as well as your medical wishes."
You will want to visit their website where you can purchase a copy to be mailed to you or fill out one online. There is a small fee of $5 for each one. Five Wishes only meets the technical requirements in 40 out of 50 states (PA is one of the 40).
Leaving your wants clearly outlined is a real asset for your children, friends or relatives. They do not need to be stuck with the extra burden of trying to decide for you. This document offers peace of mind to those you leave behind.
Five Wishes does tend to be a bit syrupy. One example: "I wish to be cared for with kindness and cheerfulness, and not sadness." Sadness is part of the deal. Sadness is an honest, authentic emotion and does not deserve to be ostracized. Their directions are clear that you may cross out anything you disagree with.
Three Questions to Simplify End of Life Care by Shahid Aziz M.D. Chair of Ethics Committee for Harbor Hospital and Laurel Regional Hospital Maryland; and the Medical Director Pediatrics at the Hospice of the Chesapeake,Md.
This is from a lecture given at Chautauqua Institution in the summer of 2011. The following is about making distinctions of minimum goals to simplify a patient's wants. The beauty of what he offers is the clarity of his specific criteria.
Establishing Minimum Goals for Mental Abilities; what level of decreased mental awareness is still acceptable even with the help of artificially life prolonging treatments?
Able to recognize and communicate with family members
Able to recognize, but cannot communicate
Cannot recognize people, but seem to focus on TV/objects
Eyes are half open and unable to focus
Totally unaware of surroundings
Can talk, but makes no sense
Establishing minimum goals of physical functioning; what is the minimum level of physical functioning is acceptable even with the help of artificially life prolonging treatments?
Bedridden, but able to go to the bathroom without assistance, able to feed self
Bedridden, able to go to the bathroom only with assistance, able to feed self
Bedridden, unable to get up and go even with assistance, able to feed self.
Bedridden, unable to feed self, but still able to swallow
Unable to feed by mouth and totally bedridden
Use of Artificial Treatments; are there any you do not want to prolong life for even a short time?
Respirators
Dialysis
Nutrition/Hydration via tubes or intravenously
Pacemaker, defibrillator etc.
Insulin, blood transfusions, antibiotics, medicines that prolong life
If so, for how long?
Link for women who volunteer to sing a cappella at the besides of people who are dying or ill: http://ptc.groupanizer.com/
Dying Well
"Death is very likely the single best invention of life. It is life's change agent." - Steve Jobs
When Steve Jobs died in 2011 at 56, he had made a huge contribution to the world. I found myself wondering whether or not he spent enough time with his family. Everyone does parts of life well, no one does them all well. Know what the parts are, that matter to you and pay attention . . . instead of waiting for the regrets of your final days.
One homework idea offered to clients is to ask people to imagine themselves dead at some significant age, 2-7 years from now. Then write down what would be important to you for those years? What would really matter when there isn't much time left? This would be an excellent activity to repeat every few years to be sure you die well.
So the purpose of dying is to be the pinch, to be sure to spend your time and energy on the planet well. This awareness can be a crucial part of people getting unstuck; to leave destructive relationships or be a catalyst for change, to find work that is meaningful and to be creative in a way that is satisfying. Death should be a vice grip so you stop making excuses and figure out how to make life work, while you can.
All 4 of the obituaries on page B10 of The New York Times on Monday, October 03, 2011 were for men in their 60's: 69, 61, 68 and 62. I bet they all thought they'd live into their 80's. I wonder if they felt good about their choices?
Dying well means that you learned to follow your own inner voice, despite the constant opinions of others. Taking risks based on your own intuition, accepting mistakes as part of the deal and making choices that define your life is the only way to not waste the opportunity.
Steve Jobs gave a commencement address at Stanford in 2005. It's a 15 minute speech, if you want to fast forward to the dying well part go about 8 minutes in. His words are valuable.
The Sense of an Ending won the 2011 Man Booker Prize. The Wall Street Journal said the author Julian Barnes is "pointing a hard finger at all of us who hide from mortality by creating uneventful lives."
Wit (2001)
Starring Emma Thompson about a doctor diagnosed with terminal cancer.
Ikiru (1952)
Kurosawa's masterpiece. A bureaucrat learns he is dying of cancer.
The Sea Inside (2004)
Javier Bardem stars in the true story of a man who fights for his own right to die.
Dying at Grace (2003)
A documentary of five terminal patients who share their final days on film.
(for kids 7 to 17)
(for kids 4 & up) 
(for ages 6 & up) 
(for ages 8 & up) 
(for ages 10 & up) 
Wit (2001)
Ikiru (1952)
The Sea Inside (2004)
Dying at Grace (2003)
