Like Sand through the Hourglass

This time it was her heart that landed her in the hospital.

Mom hadn't been feeling well for close to a week. Nothing specific; some nausea, vague discomfort, a little swelling, poor appetite. A night of vomiting. Then she was a little short of breath and finally she just couldn't lay down on the table for her radiation treatment. Her blood pressure was way up. The ambulance was called and rushed her to the hospital. She came home 4 days later and about 16 pounds lighter with three new medications added to the roster. She also has a new diagnosis: "secondary pulmonary hypertension." A condition for which there is no cure.

The last time she was admitted, it was congestive heart failure and out of control blood pressure brought on (we think) by an untreated UTI. Before that it was a bad fall.Who knows what it will be next time. As my Dad often says, "Getting old ain't for sissies."

She has finally acquiesced to using the walker, although it's clear she finds it cumbersome. She tolerates having her oxygen on around the clock and accepts without complaint Dad's daily checks of her blood pressure and oxygen saturation level.

"He's always fussing over me," she'll say, shaking her head.

Along with her discharge from the hospital, the "Hospitalist" ordered home visits from a nurse, a physical therapist and an occupational therapist.  The nurse visited for the first time Saturday, while I was there. She went over Mom's history, her symptoms and her medications. She checked Mom's vital signs and talked about warning signs that warrant a call to the doctor. We talked about her cancer.

"Is she getting chemo?"

"No, right now she is just getting radiation on the tumor in her neck."

Mom pulls aside the collar of her blouse and gently presses down near her clavicle. 

"I think it's getting smaller; don't you Jim? Doesn't it look smaller to you?" She looks at me and I nod, even though I can't see any difference.

"So just palliative care then?" asks the nurse.

My Dad looks stricken. He nods, his voice thick, "At this point. But if things change we may reconsider."

The topic changed to her health care power of attorney. Yes, she has one; no, she doesn't remember who. The hard copies are at their home in South Carolina.

"Do you have a "DNR"?

Mom looks blankly at the nurse.

"No," my Dad says. Mom still looks blank.

"A Do Not Resuscitate order. That's so if your heart stops - do you want them to bring you back?" the nurse asks.

Mom doesn't answer. She is confused. She doesn't understand. I don't think she wants to make that decision or even talk about it. I don't think she really knows what she wants at this point. The nurse slides a folder across the table and tells my Dad that the forms are all in there along with pamphlets that explain them. She seems to assume that they will want to fill one out.

"You'll want to have copies on you, so if the paramedics come, they will know what her wishes are."

She is cheery, this Nurse Heather. A local, small town girl. She is upbeat and full of chit-chat. I'm not sure she knows about Mom's dementia. It isn't obvious at first. A couple more visits and she'll figure it out. There wasn't really a way for me to bring it up to her politely in front of Mom.

As the complications and conditions grow in number, I am somehow less concerned with the details and more concerned with the feelings. I want my Mom to be treated with respect, to have her dignity. Even if she can't remember, even if she gets confused. I have always hated it when caregivers talk in sing-song to the elderly, like they are babies.  These are people who have lived long lives full of joys and sorrows, excitement and boredom. They have made the important decisions as well as the less important ones. They have opinions.

But does she really need to decide right now, in the middle of this lovely October day, whether she wants them to "bring her back"? Can't she just sit and look out at the lake, watch the birds and enjoy the scenery?