My mom was admitted to a Hospice program this weekend. Third hospice patient I've been directly involved with, third hospice provider. Our experience in Tuolumne County was brief but heaven-sent, and allowed Ray to die at home. My dad was in a nursing home when enrolled in hospice care, and it was a very different experience. That hospice program seemed to chug along on its own steam, doing what it does every day without making any accommodation for our specific situation or desires. Except for who paid the bill, there was no discernible difference in day-to-day existence.
We have yet another Hospice provider for my mother. She is at home. We're still adjusting, have already had a medication issue, but it got resolved and I get a response when I call their office. We've met Toni, the Weekend On-Call RN; Alicia, who did a qualifying assessment; and Jomel, who made the first contact with a potential patient. All have been young and polite. None have been local. Jackie, the Case Manager RN, is also young, but she is local. Thinks on her feet. We don't ask "ordinary" questions.
It's not that anyone expects my mom to die in the next month, or in the next few months. It took some talking to get people to realize that her "on paper" condition is very different from her real-life condition. On paper, she is healthy, better than 99% of people her age. She can toilet herself, feed herself, walk unassisted in her 4-wheel walker -- by doesn't go anywhere without that walker. When she squeezes your hand, her grip is still firm. But none of the normal measures of health and fitness consider her long naps -- morning, afternoon, and early to bed, 18 hours or more of sleep each day. They do not address her decreasing food intake and gradual weight loss. I jokingly say "Conversation would be nice!", but it's true. Often communication is in one word commands, waves of the hand, or just pointing with a grunt. Now I learn these behaviors are indications of withdrawing into oneself, and a typical end of life behavior. It was those cumulative behaviors that tipped the scale to qualilfy her for hospice.
The steep downward spiral began on August 23. The day before her doctor told her that her white cell count was up a little bit and asked if she had a cold or the flu. "No." she said. Then she came home and thought about it. "No wonder I haven't been feeling very good," she said. "My white cell count is up." She could have added, "and my kidneys are no longer working at their best."
All the books on death and dying say that sometimes you have to give a person permission to die. Or in my mom's case, to feel sick. To let go, stop struggling to put on a strong front. It wasn't her imagination any more. She wasn't sick enough for medical intervention by her doctor (who refused to give her an antibiotic), but she is not completely well, either. Now she is allowing the rest of us to know she feels less than perfect, allowing herself to sleep as much as is needed, allowing herself to take enough pain medication (and it's powerful stuff, beyond Tylenol and Aleve and aspirin) to stay relatively pain free.
So we watch. We wait. We keep her comfortable. We strive for sanity in the midst of chaos. We love her. Unconditionally.
Don't forget to pray ....
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