As if we had control of the situation...

Life keeps plugging along, but I seem lost somehow as the clear skies of autumn reflect a brilliant blue. Babies grow into toddlers and then they start school. Okay, my grandson is starting a three-year old program, but still. Could it be possible that his mother's own start in preschool was 25 years ago already? How could that have happened?

My maternal grandmother, who has been home receiving round-the-clock care since a stroke 8 1/2 years ago, may be starting hospice care soon. She's been receiving total care at home for over eight years and is the last living grandparent. It is as simple as one of the family members calling the agency. Yet, after weeks of discussion, it hasn't happened.

The phone rang. My west-coast sister called before heading off to work. It was so nice to be her playful, loving sister on the other end of the line. After a delightful Labor Day weekend, she was bemoaning the fact that she had to go back to work. She likes the people part of the job, but says that she has been saddled with a database project that is taking forever. It sounded a bit like the back-to-school blues.

She asked if she got me up. It was 8:30 a.m. EST/5:30 PST, I say,” No, I've been up since 4:30 a.m.” As middle-aged women, sleep, or lack thereof, is always a topic for conversation for us.

We talked about sleep, our thyroid malfunctions, the kids, the weekend, work, our parents’ aging farmhouse, our aging parents,

...and how when our grandmother had her stroke there was an advanced directive that spelled out no feeding tubes, life support, nothing to extend her life; but, the hospital "lost" her advanced directive. It took two days to get the lawyer's staff to fax another copy. At the time of her stroke, due to pressure from her half-sisters at the hospital and the doctors' differing stories about the cause of her stroke, the doctors ignored her children and grandchildren and did what they could to sustain her life. Always remember, fear of lawsuits trumps patient wishes when there is doubt.

She didn't want this. And now, over 8 years later, it might be time for hospice.
The family and carers have been terrific at keeping her alive and relatively healthy. With all of the stents put into place before the carotid artery surgery, oddly her cardiovascular system was in better shape than it had been in years. But now she is having difficulty swallowing, losing more weight, experiencing more cognitive problems, and in a continuous battle with bedsores.

She's in pain. For the longest time, she was able to enjoy eating and going for a ride in her wheelchair van. She doesn't seem to be enjoying anything right now. With the bedsores, wheelchair rides are out of the picture. Grandma’s sky blue eyes are mostly cloudy and unfocused these days.

In the conversation with my sister, I learned that she had assumed that hospice had been started and was mentally on a funeral watch.

Sweetie, you need to relax. Put on a kettle for tea.

I'm thinking that this is like all good childbirths or any major transition. There is a sense of timing that is beyond our control.

To be sure, mom and the aunties are sorting this out and once hospice is called, the agency will be out promptly. But that still doesn't mean much change in care or that death will be sudden. Perhaps there will be more of a focus on pain management and an additional level of support for the family. But it still sounds like the family is working through their own questions before coming to some kind of decision.

As we talk about the family dynamics around major transitions, my sister shared her thoughts about advanced directives. She let it slip that she wanted to have the best drugs possible so that she could be numbed out, and if she had consciousness, she wanted to eat coffee ice cream in order for her to have some kind of quality of life. We laughed about how dry most advanced directives are and how we wanted fun ones.

I didn't have the nerve to tell her that if she got "good" hospice drugs, that she would likely become pretty constipated and that the only real satisfaction she'd get from coffee ice cream would be if it were an enema.

Caught up in the emotion of the conversation,I couldn't bring myself to tell her that I just want to make sure that I have my small blue cloud pillow to hold next to my chest and some funky blues music on my headset. Of course, I remember having these elaborate plans for music and creating a "mood" for my homebirths, and that stuff never happened. My kids were born too fast - both in the bathroom of all places. I didn't tell my sister that today I'm not sure advanced directives do much besides make us feel better and give us an illusion of control when we are most vulnerable.

I also couldn't seem to share with her that my daughter tells me that my grandson is enamored with outer space. He received a NASA baseball cap that is supposed to have flown on a space shuttle once. He reads about Curious George going on a rocket ship. When he is asked what he is going to do tomorrow, he responds, "I'm going into space tomorrow." Every day offers the delay of tomorrow.

It was getting time for her to go to work. She returned to bemoaning having to face the dataset. I found myself encouraging her to look up from her project and see the AIDS/HIV infected patients at her clinic and imagine what their advanced directives might look like if they got to enliven them.

Perhaps tomorrow we might need today's conversations to guide our family and friends through parts of a universal trip we will all take.

With demands pressing us to leave, we said our "I love you's" and got on with our day.