Dying with Dignity

I understand why family members rarely visit their loved ones in Memory Care facilities; particularly once dementia has erased every trace of the person they once knew.  What's the point?  You are a stranger to them and they are a stranger to you.  You can't have a conversation, your visit will not be appreciated or remembered and it is gut-wrenching emotionally.  But you should do it.  You should force yourself to do it for two reasons:
1) Unscheduled visits at random times on random days will reveal the type of care your loved one is receiving.  It will also improve it.  There is no greater incentive to inspire an attentive staff than knowing a relative may drop by at any moment.
2) You need to be aware of the life your loved one is living.  There may be something you can do to help put them more at ease.  You may observe a level of anxiety that warrants a call to the doctor.  You are their advocate.

Somehow, perhaps because we so desperately want to believe it, we try to convince ourselves our loved ones are drifting away peacefully (albeit heartbreakingly) into nothingness.  I wish that were true.  In the past four years I have yet to witness a peaceful disappearance.  I have seen men and women who are confused, vacant, sad, distressed, lost, angry, afraid and tormented.  Peaceful?  No.

When it's my turn, which one will I be?  Will I be the tortured soul who incessantly repeats, "I'm losing my mind, I'm losing my mind, I'm losing my mind," every waking moment?  Will I be the one who reaches into my diaper and smears my feces on the wall?  Will I be the one who hasn't spoken in years and endlessly walks the hallways from morning to night?  Will I be the one who lies in bed every evening, mournfully calling out, "Mother?  Mother?  Mother?"  Will I be the one who sits on the couch uttering unintelligible sounds all day long while frantically tugging at the cuffs on my pants?  Will I be the one slumped in a wheelchair staring into space?

I am absolutely terrified this will one day be my demise.  When I confessed this to one of the aides, her response was, "The first few years are the worst.  That's when we see the most anxiety, confusion and fear. The good news is there are drugs available to calm the patients, although it can take a while to find the correct medication and the correct dose.  Eventually, as their minds continue to deteriorate, most of them reach a point where they no longer need drugs.  After that, it's just a matter of time before they lose the ability to verbalize their anxiety and the only way we can really tell is by seeing it in their faces.  They can live that way for years, but they're pretty much already gone."

This is supposed to comfort me?


Your fifteen-year-old dog is dying.  You take him to the vet and she gently suggest it's time to put him to sleep.  You tell her you'll certainly take it under advisement (which you have no intention of doing) and you walk (trying not to break into a run) to your car with your dog in your arms.  You commend yourself for saving him from the unthinkable and you take him home.  When he can no longer control his bladder or bowels, you put him in a doggie diaper.  When he can no longer walk, you carry him from room to room.  When he can no longer eat, you squirt a syringe of formula down his throat.  Then one morning you have an epiphany: you're not keeping him alive for his sake, you're keeping him alive for yours.  You suddenly recognize your selfishness and are mortified at your utter disregard for his quality of life.  You are overcome with shame and regret.  Finally, you take your dog to the vet and do the right thing - the humane, merciful, selfless, decent, kind, loving thing.  You put him to sleep.

Why is it we do not afford this same grace to human beings?  Why is it we cannot be shown the same respect and mercy we show our pets?  It is unconscionable.  I have no desire to make this decision about anybody else's life, but I believe I have the right to make it about my own.  I'm of sound mind and body and I can state exactly what I want done if I find myself in this situation, right?  I can ensure I won't be forced to suffer this prolonged hellish death simply because my body is still functioning, right?  I can put all this my Living Will, right?  Wrong.  Living Wills don't cover dementia.

Whatever happened to death with dignity?  There are currently three states (Oregon, Washington and Montana) which allow mentally competent terminally ill adults the right to choose aid in dying (self-determination).  Dementia patients don't meet the criteria because they are no longer mentally competent.

One would think a legal document drafted by an individual prior to receiving a diagnosis of dementia could be used as evidence of their wishes.  It cannot. Inconceivably, those who can no longer speak for themselves are denied the right to die with dignity.  Unless the laws change, if you or I are diagnosed with dementia we will have no legal recourse; we will be forced to languish for years.  In fact, according to the 2009 World Alzheimer's Report, in twenty years 65.7 million of us will be forced to languish for years.

I've heard people say, "I'd kill myself before I'd live that way."  What happens if you wait too long and are no longer capable of making that decision and carrying out your plan?  Others confidently proclaim, "My family would never allow me to suffer like that.  I've made my wishes very clear; they know what to do."  How will they do it?  Are they willing to risk going to jail for murder?  Are you asking them to take that chance?

If ever there was a case for the legalization of physician-administered euthanasia, this is it.  It's too late for those already in this predicament, but it's not too late for the rest of us.  If we raise our voices and work to enact change, perhaps by the time it's our turn we'll have a choice.

Until then, all I can do is relay my wishes.  I'll put it in writing, I'll have it notarized, I'll have it witnessed by 500 people, I'll hire an attorney, I'll make a video and put it on YouTube for all the world to see; I'll do whatever it takes, but please, please don't force me to suffer this tormented, agonizingly slow death.

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