cancer

If Alzheimer’s disease isn’t a secret, then why are we whispering?

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Alzheimers Research Funding Lags Other Diseases- Dementia – AARP.  The January/February 2015 AARP Bulletin focuses on the prevalence of Alzheimer’s disease in America.  The cover contains photos of fifteen celebrities who died from the disease.  Some of those spotlighted may surprise you because their cause of death was not broadcast to the media.

What a shame.

Quiet 2It’s a shame that the stigma attached to the disease still manages to relegate Alzheimer’s to the closet.  Cancer used to be that closeted disease – so much so that many years ago people shied away from even mentioning the word, preferring to call it “The Big C.”  Before Alzheimer’s disease, cancer was the whispered disease but now the populous embraces each and every body part afflicted, even those considered of a private nature: breast, ovary, prostate, rectum. Read the rest of this entry »

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Ending life on our own terms

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Ending life on your terms | Opinion | The Seattle Times. by syndicated columnist, Froma Harrop.

Being prepared, well in advance of needing to be, will serve you well.

All our lives, we set out on new adventures having prepared for them to the best of our abilities:

  • First day of school;
  • The start of a new job;
  • Preparing for a first date;
  • Wedding preparations;
  • Organizing a Holiday meal;
  • Even something as mundane as putting together a grocery shopping list.
Painting courtesy of Mary Riesche Studios
Painting courtesy of Mary Riesche Studios

We know how to be at our best, and being at our best means painstakingly and carefully preparing for important events in our life.  You didn’t personally have the option of preparing for your birth, but you do have the option, right now, to prepare for your death.

Carpe diem.

What does it mean to end our life on our own terms?  This doesn’t have to be a controversial topic.  I’m not talking about assisted suicide/right to die matters.  What I am talking about, however, is the importance of each of us to spell out in painstakingly and carefully prepared language, all that you want done – or not done – when you are determined to have an irreversible fatal disease.

Death is such a taboo subject.

Why is that?  None of us will avoid the inevitable, but many of us avoid laying down our wishes regarding that final time in our lives.  The subject matter of the attached article relates to medical insurance companies reimbursing medical professionals for end-of-life counseling provided to their patients.  I repeat, this counseling is not controversial.  As Ms. Harrop states, “Critics of end-of-life discussions argue the doctors would ‘push’ patients to end their lives prematurely.  Why would doctors do that?  Where’s the financial incentive in losing a patient?”

The report Dying in America calls on Congress “to end the ‘perverse’ financial incentives that rush fragile patients into invasive medical treatments they’d prefer to avoid.”  That being the case, it seems to me that counseling a patient about their dying wishes hurts, more than helps, the physician’s bottom line, so forget the nonsense about doctors encouraging patients to die sooner than later.  That’s just hogwash.

“Meanwhile, there’s evidence that for some very ill people, a palliative approach may extend life longer than industrial-strength medicine.”  And certainly ones final days without the poison of chemotherapy that has no prospect of curing a cancer, would be far more comfortable than if that therapy had been employed.  “In a study of terminal lung cancer patients, the group that chose hospice care actually lived three months longer than those subjected to hard chemotherapy.”  Again, that would be a more pleasant exit from this life than suffering the ravages of a chemo treatment that is not curative in nature.

“An end-of-life talk with a doctor spells out the options.  Patients can use it as a basis for filling out an advance care directive – a form listing which treatments they would want or not want.”  And let’s not forget that such a document only comes into play if the patient can no longer speak/express his or her wishes regarding their care.  An advance care directive is a legal document and as such, spells out when it can be put in motion, and when it can not.  If ever there’s a time when you can benefit from being a control freak, your final days is it.

This legal document is not just for the older population.

Once you’re considered an adult, you can decide what you want regarding your life.  Don’t wait until it’s too late and someone else decides medical matters without your input.

Olivia Wise – a 16 year old champion

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I just supported Tribute Page.  The attached link takes you to a page that spotlights a strong teenager who never let her brain cancer diagnosis bring her down.

Olivia Wise was diagnosed with cancer in 2012.  She and her parents knew that this diagnosis could be a death sentence and even though she fought against the cancer, she never gave in to its antics.

When this young woman received the news that there were no more treatments available to her, she recorded a cover of Katy Perry’s song, “Roar” and on the same day, in that same recording studio in September of this year, she sang a song that she wrote at the age of 11 called, “Simple Girl.”  Both songs are amazing in their import – especially if you consider the fact that Olivia had to struggle for each breath needed to complete each song.  Both songs can be purchased on ITunes at 99 cents each.

The goal of recording “Roar” was that she wanted her family and friends to be left with her voice, singing a song that depicted who she was.  She chose not to be identified as the cancer that ravaged her body.  Olivia wanted people to remember her as a tiger, a fighter, and a champion.  She wanted her loved ones to hear her roar long after she left this earth.

Olivia Wise died Monday, November 25, 2013.

Roar on, Olivia.

A difficult but necessary conversation

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‘The Other Talk’ Helps You Discuss Tough Decisions With Adult Children – AARP.

When your children attained the age wherein having “The Talk” about sex and other scary things became unavoidable, you simply jumped in and  winged it – wanting to explain as much to your kids as they needed to know but trying not to lend any encouragement towards participation in said scary things.  Didn’t you feel better once you checked that “To Do” item off your child-rearing list?  I know I did.

My father in mid-stage Alzheimer's.
My father in mid-stage Alzheimer’s.

“The Other Talk” is that which you need to have with your adult-sized children, regardless of how uncomfortable you – or your children – are about topics such as: illness, death, and finances. Acccckkkkk!

My mother and my daughter, circa 1977.
My mother and my daughter, circa 1977.

Or perhaps it’s the other way around.  The adult children are broaching these difficult topics with their parents in the hopes that said parents will do something about these unavoidable issues.  Regardless of who is on the receiving end of these discussions, they should be considered mandatory in every family.

Consider this scenario: Dad is dying of cancer and in a coma.  Your mother has already passed on, and you have no idea what your dad wants.  His cancer is inoperable and he’s having more and more difficulty breathing and he hasn’t had any nourishment by mouth since he went into a coma.  Does he want breathing assistance?  Does he want intravenous liquids and nourishment?  Does he want pain medication to help him through the extreme pain that cancer causes, even if the medication hastens his death?

What’s a son or daughter to do?  Wing it?

Let’s look at another scenario: Mom is in the advanced stages of Alzheimer’s and is unconscious more than she is conscious.  There is no reversal possible of the debilitating effect this disease has had on her body: her doctor tells the family that their mother’s ability to swallow is greatly compromised, her breathing is becoming more and more labored, and she has shown no interest whatsoever in food or liquids.  Her body is in the active stages of dying.

In this scenario, dad is still living and cognitively competent and he has told the family and your mother’s doctor that he wants every single measure possible to be employed to keep his bride of sixty-five years alive.  You, however, have a copy of your mother’s living will/advanced health care directive – as does your father – which contains conflicting wishes to those of your father.  Your mother wants no extraordinary measures employed – not a respirator, not a gastric feeding tube, no intravenous nourishment, nothing except for medication that will make her as comfortable as possible as she leaves this world.  When your mother was fully aware and cognitively healthy, she had her wishes incorporated into a legal document, determined to take the responsibility of making such decisions out of her loved ones’ hands.

What’s a son or daughter to do?  Follow mom’s wishes.

What a gift that is – carrying out your loved one’s wishes when she is no longer able to verbalize them.  It would still be a gift if mom’s wishes were clearly spelled out that she wanted everything done to keep her alive as long as possible.  The point is not what was decided that is important – it’s that the decision had already been made – a decision that remained in the hands of the patient/family member.

Both of my parents gifted me and my two siblings with documented specific wishes for their life and death.  My mother unexpectedly died in her sleep on September 24th, 1994 at the age of 77 – something she had wished and hoped for her entire life – who doesn’t?  My father died on October 13th, 2007 at the age of 89 from complications of Alzheimer’s and cancer.  There was no guessing when it came to the time when us three adult kids rushed to his bedside.  He was comfortable in his death, and we honored him by following his wishes for no intervention.  Did I want my dad to die?  God no.  I wanted him to live forever; but none of us gets to do that, so I’m glad that my father was allowed to take his last breath and leave this world his way.

Getting unstuck

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Living in the Present.

Fellow blogger, Kathy, has been struggling with the challenge of living her life without her mom who died from pancreatic cancer several years ago.  In the About section of her Blog, Kathy says: “On 12/4/2007 my dad said four words that would forever change my life. ‘Mom has pancreatic cancer.’  I lost my mom to this dreaded disease 348 days later.”

Learning how to live in the present while still mourning a death can be a very difficult matter.  Oftentimes we have the need to keep a person’s memory alive by reliving the journey that lead up to the death; ruminating over the whirlwind of activity after the death; and getting stuck right there – either not willing to go beyond that, or simply not having the ability to do so.

The following are very valuable statements: “You’ll get over the sadness eventually.  It’ll eventually hurt less.  But you have to get beyond where you are, because that’s what your mother would have wanted.”

Those are very true and worthwhile words, but if we’re not ready to hear them, they provide little benefit – at least initially.  Am I faulting the person making those statements when he or she did?  Absolutely not.  What I am saying, however, is that when we’re ready to truly hear those words, we will.  We’ll then be able to believe those words, and we’ll be able to practice those words.  It’s like having one of those moments that Oprah Winfrey calls, “An aha! moment.”  That’s what appears to have happened to Kathy.

Has this ever happened to you?  An acquaintance pours her heart out to you; asks for encouragement, advice, etc. and you provide compassion, suggestions, beautiful nuggets of advice, etc., and weeks, or months go by, wherein the acquaintance appears to be stuck in their dilemma, evidently ignoring your well-meaning words, and then – out of the blue – your friend calls you…(you fill in the blanks as to the situation – in this example, the person in need had been having relationship struggles)

Irene, you’ll never believe what just happened!  You know I’ve been in a funk because of my relationship challenges, right?  Just the other day I poured my heart out to someone on the bus and she suggested I do the following…

It turns out that this bus stranger told her exactly what you told her two months ago.  Are you offended?  Of course you are –  it’s happened to me and I’ve wanted to say, “Well duh – where have I heard that advice before?”  The key isn’t whose advice finally got through to her; the key is that the good advice finally got through to her.  Time for me to swallow my pride, tamp down my ego, and celebrate this friend’s good news.

English: Lightbulb. Linguistic teaching tool
Lightbulb Moment (Photo credit: Wikipedia)

Kathy – I celebrate with you that the right words came at the right time for you, and you are now able to take steps towards living in the present.  You’re learning how to celebrate your mother while still missing her greatly.  Three cheers for Denise for saying what she did when she did, and three cheers for you for having the ears, and a good and ready heart, to hear it.

Life’s final deadline.

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In the past year, I have lost two coworkers to cancer.  Just recently another coworker left his job due to – you guessed it, cancer – so he could spend what remaining time he has with his family. These wonderful people were given a death sentence.  They had a head’s up as to when their life’s end/deadline would occur.

Because I care for these people, I’ve been grieving and pondering what their remaining days and weeks were like.

What does one do when they leave their doctor’s office after receiving a fatal prognosis and a guesstimate of how much time remains for them?  Of course the initial news floors them and their emotions run wild with rawness, sadness, fear, and maybe even extreme anger.  But then they get home, hopefully surrounded by at least one loved one, and…then what?

Scrabble game in final stages
Scrabble game in final stages (Photo credit: Wikipedia)

I know much discussion will ensue of an emotional, practical, and perhaps even legal manner.  That goes without saying.

But do you then get out your bucket list and see if any remaining items can be checked off before time runs out?

Or how about a game of Scrabble?  Does that seem too mundane and unimportant in light of life’s waning hours?

I’m not trying to be cavalier about this matter and I hope I’m not coming off as insensitive.  I’m really troubled by even thinking about having such a prognosis and filling out my remaining days in a valuable way.  And again, I’m thinking about my coworkers’ final days and wondering what those days were like for these stellar people.  How did they manage?

Personally, I have a very realistic outlook on death – it’s certainly inevitable.  I’ve accepted the fact that no one can escape it.  And of course I have my preferences on the manner in which I die.  For example, if I’m fortunate, I’ll follow in my mother’s footsteps when back on September 24th, 1994, she went to bed none the worse for wear, and never woke up again.   Since no autopsy was done, we don’t know the actual cause of death but on this my family can agree – if we have the choice, we’d like to be taken by surprise – in as pain free a manner as possible.  If I’ve left no statements unsaid, no deeds left undone, I’d rather not have a calendar in front of me crossing out each remaining day in my life.

How would I fill my days if, like my coworkers, I’m given a death sentence of a finite period of time?

I don’t have the answer, so if by chance you’ve been part of life’s final deadline with a loved one or close friend, what proved valuable to you and your loved one?  How did you manage not to think of the remaining time every minute of every day?

In short – how did you survive the process?