Caring for a parent

No Terrorists, No Clowns

A weekend in the hospital last fall was the beginning of my education about hospitals. There is a sign outside the door that says “NO GUNS, NO LATEX BALLOONS.” The fact is you have to laugh and carry a big stick to survive a loved one’s incarceration. And to ensure they have the care they want and need.

My former mother-in-law, a feisty mid-west woman, died last night. She had gone to the hospital 72 hours earlier, and spent the weekend there with her family and eventually hospice. I don’t know what their experience was, but I am glad her sons and daughters-in-law were there to advocate for her. All she wanted to eat was ice cream, and that rocks. I hope they found her the best damn ice cream in town. She stopped breathing in her sleep, after a day of storycatching. A good death. We should all be so lucky, for ourselves and for those we care for.

When my sisters and I arrived at the ER with my mother who was experiencing severe abdominal pain, late on a Friday night (when these things always happen), the intake worker asked what medications she takes and what she was allergic to. It was all in the computer from a previous visit, but my experienced sister rattled them off. Once in a cubicle, the nurse asked again; and at the ER shift change I repeated it once more. When she was admitted and moved upstairs, the floor nurse asked yet again. My sister gone now and me exhausted after a night in a plastic chair, I asked in exasperation, “Can’t you just look in her record?”

My sister and/or I were with Mama throughout her hospital stay. Except for one night. During that second night after a very good day, she reportedly woke up highly agitated. Unable to calm her and rather than call us as instructed to if there was any change (our phone numbers on the board in her room for just that reason) the nurse, presumably with doctor orders but we don’t know that, put lorazepam in her IV. It is a potent sedative, its side effects pronounced in the elderly. She had taken it for insomnia at one time in the past, with undesirable results. But it wasn’t in her record.

The next morning, when I arrived and she woke up, she was loopy. The nurse-who had just started her shift-had told me about the late night event and treatment. Mama and I both laughed a lot at what I thought was the drug wearing off. Then the sillies  took a turn. She became delirious, paranoid, hallucinatory, and thought she was dying-and wanted to. I called my sister to come. We thought she was dying, too. Her tongue curled to the back of her throat; she was panicked and so were we. I had already tried killing the staff with kindness for not calling us. My sister launched into the bad cop role. We were both furious.

Three months later, my mother is still talking about it. She is convinced that the drug robbed her of most of the last bit of her vision. She tells everyone she talks to an inaccurate version of the facts and the sequence of the experience. It has become her story and she is sticking to it. But two facts are indisputable: it changed her and it should not have happened. And we have learned three important lessons: stay away from hospitals if at all possible; never ever leave someone alone in the hospital; carry a balloon and a big stick (good cop/bad cop is a good strategy if you are lucky enough to have a partner alongside you; and you will need a good dose of joy, however you can manufacture it).

I also understand, now, why we were asked so many times about her medications: the staff wants to make sure we know what they know. “No lorazepam” was not in Mama’s record. In the many times we told them what should be there, or they read it back, it is clear that drug was not on the list. It is now.

We also became painfully aware of the lack of communication in hospitals. Doctors would tell us “yes, she can have ice chips,” or “We will take another x-ray this afternoon” but don’t put it in the computer. If it’s not in the computer, it never happened. And gone are the days of the chart at the end of the bed that the doctor checks when he or she finally comes in––or was that just on TV. (Another reason never to leave the bedside, you will miss the doctor.) I don’t think I ever saw a doctor check the computer. And the record of what happened was not available to us, though I expect we could have––and should have––asked to read it off the computer.

Sadly, this was not just our experience. In a wonderful New York Times blog that I recommend for everyone who is caring for an elderly person, The New Old Age, the latest post says the following:

“ ‘You have to be ever vigilant,’ Dr. Stone said when asked what advice she would give to families. ‘You can’t assume that anything, be it a D.N.R. or allergies or medication orders, have been communicated correctly.’ Other mistakes were made in various settings: There were times that Dr. Stone’s mother had not received necessary oxygen, was without an inhaler she needed for respiratory distress, was denied water or ice chips to moisten her mouth, or received an antibiotic that can cause hallucinations in older people, despite Dr. Stone’s request that this not happen. ‘People didn’t listen,’ she said. ‘The lack of communication was horrible.’ It was a daily fight to protect her mother and make sure she got what she needed, and ‘frankly, if I hadn’t been a doctor, I think I would have been thrown out of there,’ she said.”

Laugh whenever you can, and rage whenever you need to. And stay at the bedside. Find another family member or a friend to spell you; ask for a recliner or cot if there is not one in the room. The exhaustion you may experience for the duration is nothing compared to the aftermath you could have to deal with if you leave.

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