It's Robbin writing now. Deb has simply had enough ALS. I'm writing to chronicle how her story ends. I've told a half dozen people over the phone or in person and it is so very difficult to have the same conversation with individuals. By writing the this, I'm telling her story and saving myself from a fresh retelling each time I think of someone else I know is dear to her. Conversely, she is dear to almost everyone she's befriended and I'd either become toughened to the story or I'd be a complete mess. I'll add entries as time goes on to keep everybody informed.
Let me tell what led her to decide to quit eating, if taking green glop laced with supplements, drugs and another dozen organic ingredients though a feeding tube embedded in her stomach can be called eating.
Last October and November, she gave up on medical treatments. Her last (second) trip to North Carolina was too much to repeat monthly. Taking 3 helpers to get her to the airport, to whisk her through the airport, on and off the toilet in a ladies restroom, on the plane and then off, into a rented car to a hotel and then to the clinic and back. It was too much for her. The stem cell benefits were not worth the trouble. She came back completely wiped out. She decided hospice care would give her greater comfort.
Comfort is truly a subjective state. Imagine existing in a body that allowed you to nod your head, blink your eyes and make only a moan sound. A moan that goes up fast means you're doing something she doesn't want. Going down means no. Silence is assent. She is not comfortable by any measure. The worst of it is, she's mentally sharp as a tack.
Yet she couldn't let go of communicating what she wanted. For a long time we read her lips as best we could and we've all said ABCs so she could nod to the desired letter. Remember in her natural, healthy state, she communicated vocally at maybe 1000 letters per second and now she was communicating at 2 or 3 letters per minute. If you know Deb, who used to reach down my throat to pull the words out of my slow talking mouth, 2 letters per minute is nearly unacceptable, yet attainable. Oh it used to get my goat when her first word was WHEN. Lots of ABCs in that word.
There are a lot of parts of her that needed fine adjustments we all take for granted. A leg needing to moved a half inch right, an arm with a little stress on her elbow needing movement. Drool needing a little wipe. Hot hands, cold hands. Knees up and then down. Nothing she could do from within could alleviate her discomfort. She could move nothing but her eyes and She is completely dependent on her care givers. And they gave until it hurt. They too have tender hearts right now. These are my second wives.
As you know, she gets people to love her without trying. In point of fact, one of her regrets is that these care givers will be unemployed soon. This time should be absolutely and completely about her, yet she's concerned that they get good recommendations as they move on. That's my Deb.
2 weeks ago (about January 3 or 4) she decided she wanted to be gone by the following Sunday. She wanted me to find the right cocktail of her prodigious collection of drugs would let her go quickly and painlessly. I was stunned but not surprised. Intellectual me says she's probably right. Given that she has 10% - 20% lung function an sometimes gasping for air, she found drowning in her own fluids repugnant. Emotional me, asks can I do it? Intellectual me asks what are the consequences? A real debate was going through my mind. Risks? Worst outcome: I could have supported her these last 7 years and my reward could be a jail cell. I've watched too much Law and Order. I couldn't have done it, for the record.
My conclusion was that this is a Lucy Ricardo scheme. Lucy was the star of I Love Lucy, a sitcom from the 50's and rerun for the next 60 years here in America. Every episode's plot was that Lucy had a scheme to achieve her goal (money, fame, etc), but she never considered the consequences of her schemes. Rarely did it turn out how she imagined. Deb's overdose plan was a quintessential Lucy scheme.
I contacted a friend whose wife was a long time hospice nurse. She put us in touch with a person who gave this kind of advice and if we contacted her, Deb could learn her LEGAL options. My plan was to give Deb the options I learned. Before this could happen, I let on what research I was doing.
In very typical Deb fashion, she took over. She wrote to the hospice nurse and was on the phone asking questions and getting the information directly. When the phone call was over at 8pm on Sunday night, we were immediately contacting the end of life specialist.
Asking questions is a bit of a misnomer. Deb hasn't enunciated a word in a year. Lack of breath and motor control of her mouth parts (and nearly every one of her other parts) means speaking was a lost skill for her. However her computer that read her eye movements allowed her to type, so her questions were spoken by the computer (itself disconcerting because the computer didn't have a New York accent and spoke rather slowly, hardly the avatar she would have chosen). The long and short of it, Deb's only choice was to refuse nourishment and water and wait with hospice support for the calming drugs they routinely prescribe.
How many of us could do this? And a day into it, how many would continue the vigil? Not me. She has morphine and adavan. Does she do this? Even when I tell her if she does it regularly it would build up and help her in the comfort department. Oh, no. My Deb only has it when she wants and not frequent enough for my taste.
She is not comatose just yet. She's awake only 6 hours a day, but I don't think she's comfortable. If she only said, feed me, there would be a all hands on deck to revive her. She has an iron will to do this. She wants this enough to go through it. That is absolutely crystal clear to all of us.
Fucking A, this is hardest on her, but knowing this is what she wants is almost unbearable for me too. Probably only slightly easier for her care givers. She has gotten close to all her care givers. Daughter close (they're mostly young). They love her too. So we all acquiesce and give her our love and support.
Ever the organizer and control exerter, Deb has made lists of tasks for me to accomplish during and after this tragic episode. One was to keep this secret until the end. I can't say I agree with the secrecy and lord knows, I couldn't possibly keep separate versions of information straight in my head. It is more my style to have one story, stick to the truth and let that be my mistake rather than try to remember who is supposed to know what. Thus this blog.
I talked to her former Basel boss and it was a stilted conversation. I hit her right between the eyes with it and, even knowing this call would eventually come, I still shocked her. I believe that me writing this blog and giving you stories and omitting the gory details will help you process this. I'm in no state to shock people and then provide details.
I invite you to share anything you care to in comments. I'd rather celebrate her successes and good deeds than focus on this end stage. She's touched so many people, I can't begin to reach you all. Please pass this URL around. Tell us all favorite Deb stories. Especially stuff I've never heard before. It would be helpful for me and any who remember her.
I'll write about how I'm dealing with this in a subsequent post. I'm not all right, but even given that I support her completely. Its not what I want her to do. Half a Deb is better than no Deb at all. I told her this. And I got off a love letter while she was lucid, although not eloquent, made her weep for hours. She knows my undying love for her, but reading the words warmed her greatly. This is all I can do - make her comfortable.
Logistically, when she is gone, I intend to have her cremated and make the urn myself on my lathe. It will be a double urn so I can be added and then poor Ryan will have the job. Sorry Ryan, let's hope it is a good long time from now. I'll eventually tell you how religion played a part in her life so you'll understand the lack of a service. I'll have an open house for visitors for a couple of weekends. I'm happy to welcome all visitors and can accommodate sleep overs - we're way the hell out in the sticks and it isn't an easy trip, but any who make it will receive Deb hospitality. She taught me well.
