At Present Without Dignity
Chatterley, circa October 2018
In September 2020, we took our beloved cat, Chatterley, to the vet to die.
For 10 minutes, hubby and I sat with her on a futon while begging the clock for another second as we petted her head in the cozy office with a window seat. We could sense her unease as she kept looking at the door and wanting to leave. Maybe we can just go home? She'll be OK even if she starts to feel pain, but then how would we know and what would we do at 2:00 am on Sunday or any day of the week while we're working from home during a pandemic?
She was tiny, about five pounds (down from 12), and dying from probable kidney disease. Everyone at the vet loved her gentle kindness and her greatest utterance most days with an open mouth and nothing coming out except the sound of two lips parting much like a zen koan. Oh, how she Chattered. I would often tell her (usually while sitting on the toilet and she would come up to rub her face on the wall) that she understood all the mysteries of the universe, if we could understand her language.
For the past few days at home, Miss Chatters was languishing alone on a closet shelf rather than eating or drinking. The vet advised that she would not get better and would continue to decline with possible pain and anguish as her body shuts down. Then, these memories are jolted as the vet enters the room - our ten minutes over although we can change our minds - and the technician gently scoops Chatters up and onto the stainless exam table.
"Do you want to proceed?"
"Yes," we both say, while begging inside for a reprieve - just one more second for her.
The first shot is a saline prep, the vet informs us; and for the second, moments later, we see Chatters' head gently slump down as the vet gingerly puts a stethoscope up to our baby's heart.
"She's gone."
Her heart stops within seconds without awareness, suffering, or pain. Our Buddha lioness is at peace. Her death was the first either of us had the courage to witness at the vet. We realized we could not leave her alone as we had done in the past from our own sadness and some vague notion of not wanting this to be our last memories of Simon, Pud, Sammy, or Stubby. In hindsight, we belonged together as beings who loved each other as much as any human.
And yet, we pretend that human and animal suffering is different. One we control, and the other we let God decide.
The decision to end one's life must be made by each person; however, dementia patients are an exception by omission.
Right now, in the US, there are 11 states that allow either euthanasia or assisted suicide. For humans, this means that one can either get a prescription from a doctor to end one's life (euthanasia); or a doctor can assist; however, in all states (except Montana, which has a favorable state supreme court decision, but no law) the patient must give consent and be within six months or less of dying as certified by a medical professional. Turns out, it's the same in Canada which also forbids suicide "tourism" from the US or elsewhere.
The Canadian law is the reason Leila Bell decided to legally end her life upon an Alz diagnosis when she still had the ability to make the decision (unlike her mother who also died from the disease before the law took effect). In Canada, what complicates matters, too, is that doctors can get in trouble for assisting dementia patients with suicide by trying to determine when informed consent ends.
Although this is never a jolly topic, Mom and I have been having these conversations at her request (and following own research after dad's death) much like the Ghosts of Christmas Past, Present, and Future.
There were many times when we asked ourselves what dad would have wanted while he was alive, but the answer was always our own creation (never his). My Christmas Wish this year is for an open discussion about death. We must accept that not everyone will want to end one's own life; however, those who do must have a peaceful option as for our pets. So far, the counterarguments have seen are religious (sinful); or a fear that dementia patients will be eliminated before they are ready or able to give consent. From a moral perspective, I believe the Buddhist wisdom that "life is suffering"; or, as dad put it before he got sick, "life is struggle, but you must go on living because that's what life is."
Dad feared he would get Alzheimer's after watching his family succumb (with his dad having probable Parkinson's); yet we could not prepare for its destruction for him. There is literally no humane solution right now which is unacceptable. And yet, we go on pretending that life goes on until it doesn't, which, in reality, is the best anyone can do.
With regard to being killed before being ready, our strongest protection against such atrocities (murder) are advance directives, given by the individual in writing with sound mind, that specify assisted suicide as implemented by a designated legal guardian or physician. Likewise, if someone receives a diagnosis and then changes their mind, then these directives can be amended in writing. While not a perfect solution with dementia lurking, the resulting ambiguity is more a projection from the aware rather than actual desires of the unaware. For example, as this case from the Netherlands, what happens if one protests own death (contrary to directives), since isn't this an expected result from the illness rather than an actual decision made from mental acuity? Personally, as with the vet, I would want a doctor to be my "agent of death" rather than fearing an early exit. For Chatters, we could have kept her alive longer but was this in her best interest or ours?
If you've spent any time with dementia, then you know the worst suffering for the patient is at least several years before the final six months of life because it's "the long goodbye" as phrased in the invaluable book: The 36-Hour Day. In the US, what makes the death worse is a nursing home system that prioritizes profits over patient care by paying caregivers paltry wages to change adult diapers, bandage bedsores, then turn, bathe, dress, and feed a person who has no ability to care for themselves or to regulate their emotions which can include anger and physical violence. This unacceptable system is what we have since the elders in our country are forgotten as expendable and those who care for them are supposed to be grateful for having a job that pays an unliving wage.
So, what does this mean for US dementia patients who want to end their own lives? Even in the 11 states where it's allowed by law, they cannot legally do so because they cannot give informed consent as required by these laws (without exception). Even with advance directives, the informed consent (in the moment) must still be given which is impossible when the mind is Tabula Rasa.
Yesterday, a friend told us that her next-door neighbor (whom she's known for awhile) walked up to her and said: "Who are you, again? I'm sorry, but I was just diagnosed with dementia."
Me: Does she know what type of dementia?
Friend: No, and I didn't think to ask.
Me: Please know I write this blog because my mom was just diagnosed with Alz and my dad died from these complications in 2017 [along with four other relatives: Both mom's parents and her two aunts.]
Hark, do you hear what I hear? The now.
The neighbors do not have time to wait (nor does anyone). Their enormous camper trailer in the front yard driveway is gone - perhaps they are away for the holidays? Without knowing, I can imagine her sitting in the doctor's office, perhaps with her husband, as they anxiously await her results then to learn the diagnosis as she is sent home with a cynical pat on the head and a grinchy prescription for a yawning Cindy Lou Who toddling back to bed.
The cynic in me is tired to know that most people in the US don't know that dementia *may* be a treatable condition if caught in time which is why we each must be Dementia Slayers before succumbing to suicide. I do wonder if the beloved Robin Williams would have killed himself in 2014 if the laws changed to allow medical help as they did in 2015.
Right now, it's likely we each already know someone with dementia as an estimated 1 in 9 people in the US have Alzheimer's (page 19). At present, the final disease diagnosis can only be made by autopsy. Right now, if I find out today that I have Alzheimer's, I would actually like to receive medical assistance to end my life (and am putting this in writing now) even though it's not legally an option, then please be certain that I WILL NEVER change my mind to live with dementia; or, if I do, then you can be dang sure I will put it in writing while there is time and while am of sound mind.
From your experience, are there reasons to continue living with dementia? Leave a comment or lemme know at buffyslaysdementia@gmail.com