The First Hospice Talk

Last night was a tough one for us. Two more falls- both while I was still at work. Our daughter Chloe pulled Casper off the floor and back into bed. Confusion, especially with another hit on the head while recovering from a fall. Then a couple of hours of pure calm lucidity- and devastating discussions. I knew they were coming, but I was so not ready.

"I don't want to keep going if it's going to be like this." "Tell the doctor to take me out." "I hate being an invalid. You didn't deserve this a second time Jill, you should not have to go through this. I promised to take care of you."

All true. All heartbreaking to hear. All our newest reality. I really hate Parkinson's and Lewy Body at least as much as breast cancer and pulmonary fibrosis. I am past asking "why." I am now simply resigned to the fact that some diseases are just evil incarnate, and those in their path have to find a way to survive. It's not like there are other options. It is what it is and will continue to be. Survive and get past it. Getting off is not a choice.

The reality is this is not fair to either of us, our kids, our families, our friends. The reality is also that we cannot change it. One of my favorite nurses with whom I am honored to work  in hospice was talking to a patient the other week, and the patient did not want to accept that she had ot move in with family or hire a caregiver. The patient was having neither- she wanted it her way. The nurse said "I am sure you didn't want xyz cancer either, but you have it, and we have to deal with it. It's not like we have a choice." It's so true- saying "no" is for Red Ribbon Week, not death and dying. That particular patient is actually dying this week. I saw her today. What we want and what reality in real life is are often two very different things.

And so yesterday I met with our doctor, who has known Casper for years. He remembers her as a busy, self assured, smart nurse with a smart mouth and a good head on her shoulders he could count on. He has seen her horrific decline. I described what had occurred that week, up to that point, and her loss of functioning. He told me we had to move our wedding. Then today I provided an update. That was when he said what I knew was coming but did not want in any way to hear- "She's qualified for hospice now."

Crap. Really. When Linda was referred to hospice it was because I was begging for help, with a doc reluctant to admit nothing more could be done. This time it was a blanket "what are you waiting for?" Hmmm, let's think. They are exactly the same age. Both married to me. She was active and promised to stay by my side for a long long time. I even made Casper promise not to die soon when we first dated. I had just lost Linda after 23 years. I don't like widowhood. I don't like saying goodbye. And I don't want to tell our oldest child, who calls Casper her Buddy, that we are here again so soon.

But we are. I spent the whole day today helping families getting ready to say goodbye to loved ones who are actively dying. Their limbs are mottling, they have apnea, they are no longer responsive. Some were rattling a bit. (when you are dying you no longer swallow, so fluid can settle in your throat that you are unaware of  and it makes an ugly rattle with your vocal chords. Some call it a "death rattle." It's a physiological fact of life usually obliterated in hospitals with suction.) To me that's normal life. Sad. Necessary. Normal. I have a role in it, and usually I am pretty good at it, providing support, education, crisis intervention if needed. Laughter lots of the time. That's when I tell kids to admit to their parents all the bad stuff they never admitted to as teens. To play the music they loved. To laugh at memories. I even got to pick on our chaplain, which is a sport for me. (Yes, I have an evil twin, and we share space. I am not overweight. There are two of us in there).

I eventually made it home after an evening of playing dinosaurs with a charming young counseling client. I made myself focus. Hard. When I got home Casper could actually eat her dinner, which I chose so it could be eaten with fingers. Last night she resorted to fingers because a fork was almost a mystery to her. Then we had Skinny Cow bars. Her favorite. I finally got that figured out too. A line of paper towels covering the pillow and under her face, and a roll under the stick so she could hold it. It shook and rattled. I wiped her face. But tonight she got to eat with some independence. Victory!

"what's tomorrow?' Earlier today it was Friday (I love Casper World. It is always Friday and Saturday.). Tomorrow is X rays and labs. "But I just had an injection.' Huh? What?YOU need your blood drawn and Dr. Mall needs X Rays after your falls. No excuses this time." "Okay." What? Since when?

"Dr. Mall and I talked today." Eyebrows raised. "He says you are qualified for signing on to care." Angry eyes. "So you are sending me away?" Crap. "No- to hospice. Here. At home. With him." Silence.... Then "I knew that was coming." Really? "I am not ready. But I will be soon." I breathe again. "So what should I do with that?" "Tell him not yet. But I knew it was coming. And I will say okay. Soon."

Her hand found mine. Squeezing. Tight. "You won't leave me?" Nope, not a chance. "We do this together."  Yes, we do.