Thursday, July 7, 2016

Time to make a new post because I can't sleep anyway. 

I can now tell you about an option Mike wanted, started to put into motion, and then became not eligible to use.  If he had remained eligible, and chosen to use the option, I would never have included it in a post.  Only the closest family members would have known.

Death with Dignity.  Mike wanted some control for the end.  He has slowly and agonizingly lost control of his own body over the years.  This hasn't been just normal aging. Parkinson's, diagnosed at age 51. Severe arthritis (knees, replaced; shoulders; ankles, braces). Non-healing wounds (twice, half-year process each time). Congestive heart failure. Kidney disease - surprisingly reversed with chemo for lymphoma.

One afternoon in May he was in uncontrollable pain.  I called the doctor's office for the next step up in control, but we wouldn't be able to get the med until the next day.  As his pain continued into the evening, he wanted to call the kids because he was sure he was going to die that evening.  I told him I was so sorry for his pain, but he would have help the next day, and there was no reason he was going to die that night, or if it would be in a month or two.

Mike said, "I don't want to be here in a month or two."  Wrenched my heart.  He started receiving the new med the next morning, but he also had me make the calls and get a referral and appointment for the "first request" with a doctor.

(Under Oregon Law, a patient has to make a request to a doctor, and a second request at least two weeks later. The doctor and a second doctor have to agree that he is terminal with less than six months to live.)

Mike saw a doctor who receives a request, or more, every week.  Very nonjudgmental. So he made the referral for the second doctor review, and an appointment was made for more than two weeks later. And I called our primary care to say we were ready to be admitted to hospice care.

But.  Over the next two weeks, Mike rapidly lost cognition. He was doing what I call all-day sundowning. At one point, I texted our daughters, "*sigh* sundowning, he says I'm not cooperating. Cuz I don't want to participate in his practice to extract somebody from a hole. (Holey-moley)."  He announced the exercise was canceled.  There were similar examples several times a day.

The form Mike would need to bring to the second doctor, to formally request meds is called, "Request for medication to end my life in a humane and dignified manner."  It has to have two witnesses.  If I were to be a witness, one of the things I would be asserting: he is of sound mind. Nope. Nada. Nyet. So second appointment, and the whole thing, scrubbed.

Meanwhile, hospice has worked on pain control, but it's not a quick calculus solution. He could take his newest pain med more often (every 2 hours if needed, instead of 6 hours). They aimed to put him on a longer lasting drug, but he had to be off one of his Parkinson's meds for two weeks before starting! And then it took about a week to build up in his system. He still has break-through pain about once a day, different times, and I have to throw everything (multiple meds) at him, and wait up to an hour to see him relax.

Let's add to the mix. In the last week, he's had more episodes of being highly agitated, so we throw an anti-psychotic at him.  Crushed, mixed with water, and dosed into his mouth with a syringe. And wait 30-60 minutes. 

That's the emotional roller coaster. The journey will eventually end, giving him comfort and peace.