Families

End of life can bring out the best in families. They can come together, tell stories, hold hands, celebrate a life, and just be present. They may have lots of questions about the dying process, about medications, about what they should be doing, and about what to do next. They may need coaching, hand-holding, education, support, and guidance, but they pull together and they pull through.

Unfortunately end of life can also bring out the worst in families. They can bicker over property and money. They can argue over care and debate treatment options. They can become mired in what they want and lose sight of what the dying person wanted.

One of the saddest things I see is when a family lets their conflicts get in the way of being there with and for their loved one. It's not just a family fighting at a bedside or in the hallway, but it's the family that doesn't communicate that gets to me. For some families it's a time for healing or letting go. I see siblings going above and beyond to contact the estranged sibling or driving the streets to find the homeless sibling. They sacrifice some of their remaining time with their loved one to try and bring repair to the relationship.

And others don't.  There is so much anger in the relationship (admittedly often deserved.) The caregiver knows how to reach her siblings or his aunts and uncles or the missing grandchildren, but doesn't. As I sit with my dying patients in these circumstances, I wonder how the family members will feel when they get the call, if they get the call, that their loved one has died.

And I know I can't fix it. And I know it's not my role. And I sit with my patient and hold his hand, and play music for her, and say deathbed prayers, and try my best to be present. And I am sad for all the lost opportunities and missed chances.

"The Next Holiday is:"

I usually wear a watch that tells me the date. I don't need to do so - my work phone also tells me the date as does my personal cell phone. And most of the time I know the date. Despite this, every time I write a visit note, or sit down to write a group of notes, I look at my watch or the unit calendar for the date.

I do this even though virtually every nursing home unit I visit has some variation of the same sign, telling me the date:

Today is: Monday   May 16, 2011

The weather is: cold  rainy

The season is:  Spring

The next holiday is:  _________

It's "The next holiday is" part of the sign that amuses me. I don't know if it is dependent on the placards that come with the sign, the calendar that the staff look at, their knowledge of holidays, random chance, or just personal whims, but "the next holiday" is not always consistent.

Last month I was on one unit and "the next holiday" was Easter. I went upstairs and in another unit, in the same building, "the next holiday" was Passover. The next day I was in a different nursing home and "the next holiday" was Good Friday.

This week I have seen "the next holiday" as Armed Forces Day (May 21) and Memorial Day (May 30.) (I don't expect that I will see Shavuot, nor is any nursing home I visit counting the Omer. ) Right after Memorial Day, the signs will battle between Flag Day and Father's Day. They'll then stay consistent with The Fourth of July and then Labor Day, but come the Jewish Holy Days, Columbus Day, and various other fall holidays, "the next holiday" will again differ from place to place and unit to unit.

Perhaps this is why I need my watch. It doesn't focus on "the next holiday" but just on a number between 1 - 31. And most of the time the number it tells me really is that day's date.

Too soon

One of my patients died last week. On the face of it, there's nothing novel about that sentence. I could probably begin a posting every week with those words.

Some losses, though, are harder than others. When you share someone's life for six months, learning her history, listening to her stories, reluctantly leaving her to visit another patient; when the music she loved plays unexpectedly on your ipod and you remember her tears as she sang along, it's hard to let go.

It's also hard remembering the most recent visits. She asked, "Am I going to die?" I answered and we both had tears in our eyes. "I never thought I'd die," she said.

I've thought about that visit a lot lately. Obviously, a patient on hospice knows her prognosis, as do her nurses, her aides, her social workers and chaplains.

Any one of us can, on any day, acknowledge that one day we too will die. But her words ring so true. I know that one day I will die, but I imagine it far off in the future. And when that day comes, it will probably seem too soon to me, no matter how old I am. And I expect that, if you ask me, I too would say, as she did, "I never thought I'd die."

May her memory be a blessing.