CARETAKERS & WHAT IS END OF LIFE CARE?

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“Old age is no place for sissies.” – Bette Davis

Caretaking the Caretakers:

Caretakers, by their very nature, often forget to take care of themselves. Caretakers are so lopsided in selflessness, that they get lost in the needs of the other person. Many boomers are caretakers of aging parents.

It is unreasonable to be so drained that your own personality changes because too much is falling on your shoulders. Caretakers 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 also having needs.

Too many caretakers 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.

Caretakers need to set boundaries. It is OK to put siblings on the spot and ask them to pitch in when you need a break. Siblings can also contribute financially to hire 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 caretakers learn to ask for help, there’s a good chance they’ll let you roll with the responsibility on your own.

Caretakers need to understand that boundaries are ordinary and set them without guilt. 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 because their lives are often in flux. Their concerns center entirely around themselves and their wants and needs and they are oblivious to the needs of the caretakers.

If caretakers don’t learn to set boundaries they can drown in the self absorption of the patient.

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 to the caretakers.

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 caretakers how disappointed they are with you when you don’t let them get their way. This is especially true in a culture where caretakers take the elderly out of their homes and place them in facilities better equipped to handle their medical needs and to keep them safe from the hazards of old age.

There will be all kinds of reasons to demand more and more from their caretakers. 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. Instead they react with anxiety, fear, anger and a sense of being utterly betrayed by their caretakers. They will delude themselves about their own ability to remain at home and blame the caretakers for failing them.

Often their minds are deteriorating along with their bodies so caretakers arguing logically have a pretty limited impact. In most cases, they’d really rather take their chances in the security of familiar surroundings than relinquish their independence. They don’t want to recognize that their ability at independence has really deteriorated, and that the new situation is a result of that loss.

The caretakers can’t make up for the harshness of aging, for the pain and suffering that often accompanies the end of life. Caretakers must be replenished both in body and spirit before wearing themselves out because then they are of little use to anyone.

The sacrifice by caretakers must be balanced by self-protectiveness.

End of Life Concerns:

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“. . .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.

The site for Five Wishes: Aging With Dignity

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.

  1. Establishing Minimum Goals for Mental Abilities; what level of decreased mental awareness is still acceptable even with the help of artificially life prolonging treatments?
  1. Able to recognize and communicate with family members
  2. Able to recognize, but cannot communicate
  3. Cannot recognize people, but seem to focus on TV/objects
  4. Eyes are half open and unable to focus
  5. Totally unaware of surroundings
  6. Can talk, but makes no sense
  1. 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?
  1. Bedridden, but able to go to the bathroom without assistance, able to feed self
  2. Bedridden, able to go to the bathroom only with assistance, able to feed self
  3. Bedridden, unable to get up and go even with assistance, able to feed self.
  4. Bedridden, unable to feed self, but still able to swallow
  5. Unable to feed by mouth and totally bedridden
  1. Use of Artificial Treatments; are there any you do not want to prolong life for even a short time?
  1. Respirators
  2. Dialysis
  3. Nutrition/Hydration via tubes or intravenously
  4. Pacemaker, defibrillator etc.
  5. Insulin, blood transfusions, antibiotics, medicines that prolong life

If so, for how long?

Links

Death Over Dinner-an organization to help people have end-of-life discussions

For women in Pittsburgh who volunteer to sing a cappella at the bedsides of people who are dying or ill: http://ptc.groupanizer.com/

How Doctors Die – Most Doctors choose not to have extensive end of life treatment. Here is an article about why.

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. Leaving a destructive relationships or be a catalyst for change, to find work that is meaningful or 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.

Fiction to Make You Think About Your Own Life:
The Sense of an Ending

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.”

 

 

Books for Kids Dealing with Death:

Books:

 

 

 

Twelve Breaths a Minute: End of Life Essays

Movies:
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.


 
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