The last two weeks have flown by- between sleep deprivation and rapid changes in Casper there hasn't been time to think it all out. much less write it down.
While I do work as a hospice medical social worker, and love my work, it usually doesn't become the theme of my day and night. Last week, however, it was everywhere. I was scheduled to give a presentation on Tuesday at a local Parkinson's support group about hospice and safety issues, especially choking and CPR. It was already morphing into a Hospice 101 plus advanced directives and why you need them. The nurse who was scheduled to do it with me was well prepared to talk about issues specific to Parkinson's and all patients who are debilitated. Who knew that every wheelchair except transfer chairs have sides that come off just in case someone is choking and needs assistance? I've used wheelchairs at home and work for years- and I had no idea!
Before we could get to Tuesday we had a weekend that included six falls. Confusion. Delusions and hallucinations. Agitation at night that kept us both up all night every single night. Casper then slept all day, while I found every Starbucks and Coffee Bean as I traveled the county. She wanted to know why I wasn't home from work at noon; why I was leaving for work at 7pm- because days and nights no longer made sense. The sun and moon were useless in cuing her in to the time of day. She lost the ability to use utensils somewhere in the midst of it, but hated me having to feed her. We switched to finger foods. Trader Joe's became my friend as I tried to find things to make that did not require any brain cells or energy. (Best idea- grilled cheese sandwiches cut into bites. Lots of butter to make them soft).
On Saturday she fell multiple times. On Sunday I took time out for me and went to church. I left Kerry at home with Casper, and a friend who is a nurse to come and sit with her. I needed that time, and time with a friend for lunch and some fun at a bridal expo. And then it started. "Mom, Casper fell. She's on the floor." "Jill, even though she made me promise not to tell, she's on the floor under the desk. She said her mom dropped off Easter eggs to color and can't find them. Since you are the wrong Jill I am telling you." "Is she ok?" "Yep, just confused. She's in bed. She's safe." All by text while sitting in church listening to a sermon with a theme I vaguely remember as having to do with coping with bad things happening.
Executive decision- stick with the plans and have a break. Nothing I said or did would change it at that point. I kept the phone close, but I didn't go home. Celeste and I cruised the Mission Inn and sampled, looked around, took pictures, and put together plans for her wedding and for mine to Casper. Our wedding was now set forward from December to November. I was trying to keep it happy and a celebration of the hard work of defeating Prop 8 and the legal rights we finally have. It was fun seeing Celeste planning her big event for next year. It was harder telling vendors why we need to move ours forward. Casper was asleep and under watchful eyes.
The rest of weekend was a blur. I needed to do paperwork. I ended up acting as Casper's captor to keep her safe. She wanted a shower to show me she could, and we both almost fell when she could not follow commands. I almost dropped her getting her off the toilet in a full body lift. This was going to be too much for me in a very short time. I called her family.
Monday I went to our doctor's office at 8am. "I need a shower chair. I need a commode with handles for the toilet." "We can see you a week from Wednesday." "I need them now." Really- a week and a half away? "We don't order unless you see the doctor." "I can't get her down the stairs right now." "I don't know what to tell you. That's his policy." This from a doc who actually works at a retirement community once a week. I had evil thoughts about his retirement and ability to ambulate...
And then suddenly there was hospice. It helps when you work there. It helped with Linda, and it helped with Casper. I walked in arguing on the phone with the insurance company about the medical equipment (DME) and the need to an appointment, and someone overheard me. In a matter of moments paperwork was being done, nurses were called, and authorizations were being forced out of the same doc who would not do DME a few minutes before. In a matter of hours I was at home telling Casper that hospice was coming.
And she had no idea what that meant... Casper who was a hospice nurse sat through the paperwork as I signed it. She can't hold a pen now, or write. She knew every person who would be coming. She answered very clearly the questions about a Do Not Resuscitate Order (DNR) and life sustaining measures. No CPR. No feeding by artificial means. No fluids. Pain management only. No hospitals. We have a living will, and I knew how she felt, but it's very different when the staff who will be there for the end of your life and asking them again.
As I waited for the DME to arrive (Oxygen, suction, commodes, shower chair) Casper woke up again. She saw the white folder. She'd filled out dozens in her career for other people. "Am I on Hospice?" "Yes baby, you are. It's time. Are you ok?" Stupid question of the year. Neither of us were actually okay. But both of us knew that this was necessary. "I know the routine. It's ok."
Since then there have been multiple new realizations for Casper that hospice is in our life for her this time. She's trying to fight back. We've had some much needed conversations. But it's time. The wedding is now October 12th, and she realized why. Her brother Jay is coming Tuesday to love with us. Her sister Sandy will be here soon for the wedding and an extended stay.
Casper and I are left with the hope that this will not be as fast as is expected, but a fervent prayer that this not become the potential for an extended state of unresponsiveness. I am keeping a favorite nurse's explanation to another patient in mind: "You might not want this, but you didn't want to be sick either. We have to deal with what is, not what we want. It's really that simple."
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