Thursday, January 16, 2014

Living on lobster bisque and illegal hamburgers: How my mother is spending her last days

"Let us touch the dying, the poor, the lonely and the unwanted according to the graces we have received and let us not be ashamed or slow to do the humble work." - Mother Teresa

By Julia Anderson
A stroke episode a few months ago had my mother thinking that her time had come. One morning at the care center she awoke to find that she couldn't swallow. Trying to drink was a torture akin to water-boarding. Choking, sucking liquid down her windpipe, gasping for air. Truly frightening.
"What's happened," she asked the caregivers in a garbled sentence or two.
"There's been a stroke that's affected your ability to swallow and to speak," they told her. Not good.
A black dress went into the bottom of my suitcase when I packed and rushed to be with her. This could be it, I thought.
Even though we had talked on prior visits about no more emergency trips to the hospital, no heroic measures if something happened, she still would need to revisit the issue yet again.
What would she want to do in the face of this latest set-back?
At 98, it may seem as though it should be easy for my mother to come to terms with death, to accept that her life is at an end. She'd talked courageously about that many times. But the reason my mother is 98 in the first place is because of her strong will to live and to adjust to the physical circumstances at hand, here and now. There had been numerous set-backs since that first stroke in her mid-80s. Severe back-pain nearly incapacitated her until they "glued" vertebra together, a broken knee cap took months to heal. A fall in her own kitchen that broke her hip put her in an assisted living care center almost three years ago. There were tooth extractions, changes in medications.
On top of that the over all aging process has taken a toll on her ability to walk then to pedal herself about in a wheelchair.
And now, this latest stroke.
No, she didn't want to go to the hospital.
No, she wouldn't fight it. She'd let go. Hospice was called, papers were signed and a care program set up to feed and keep my mother comfortable as she ended her days.
Time out, please
We read newspaper obituaries all the time about people who have died too young after "battling" cancer or other debilitating disease. But what about dying from old age? Obituaries don't really tell you how hard it is to die of old age, really old age.
As I've walked down the hallways at the care center, I see old people all around me who are making the best of it. Who are trying to regain strength after a fall, struggling to get themselves to the lunch room or the bingo table every day. I see people who are hunched almost double by rheumatoid arthritis or osteoporosis but who are still moving, thinking, breathing...alive.
Sometimes they lie asleep in recliners in their rooms, mouths open, TV blaring.
Others slump sideways in wheelchairs as they nap by the front door.
Time in
My mother is now confined to her room and must have help dressing, moving from her bed to the toilet and then to her chair by the TV. She's still getting her hair done on Thursdays but there's no more bingo, no more going to the dining room. She has a very hard time forming words that can be understood by others. Her mind is there, the physical equipment is failing.
The good news (or maybe it's bad) is that the symptoms of the stroke have loosened their grip on her throat so that she can manage a few careful swallows without choking. But eating and drinking is exhausting. In the past four months, she's shed 17 pounds. On a 100-pound frame to start with that's not good. We joke that she always liked being skinny.
Hospice caregivers feed her twice a day one spoonful at a time but only give her as much as she wants. And frankly, she's tired of the gloppy food that's pureed to a paste and the gelatinous "drinks" thickened to lower the choke threat.
During my most recent visit, she demanded a hamburger from the McDonald's dollar menu. I ordered it with just cheese and ketchup (plus extra ketchup) and smuggled it into the care center. Cut it into micro-bites, mom ate using a spoon then carefully chewed and swallowed each bite. She smiled when she nearly finished the whole thing without choking. Lobster bisque with its rich, creamy texture from the restaurant two blocks seems to create the same enthusiasm. But she freely admits that she'd like to go. 
And that's the tricky part.
Hospice is really there to help you die --- "Committed to improving end of life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for people dying in America and their loved one," as the Hospice Web site says.
Nobody thought my mom would be around this long including my mom. She may be ready to let go but as her Hospice nurse said, "mentally she's ready but her body may not be there, yet. The vital signs are good."
God, this is tough...watching this dying in slow motion with my mother making the best of it.
I really don't know how caregivers do it knowing that most of the people in their charge are not going anywhere. Preventing falls, wiping bottoms, dealing with bedsores, managing ulcerated legs, dementia, wet diapers, constipation, medications, specialized food management all are in a day's work. I've come to care deeply about the people who can do this work with love in their hearts.
And here's to the really old people including my mother who are hanging in there, who face death alone in the dark of night in their care center rooms, who wonder when their time will come.
Who say, thank you, to the people working the morning shift who help them pee, dress, brush their teeth. Here's to the old people who smile when their kids show up. Who tell us that we are loved.
After a few days with my mother, she and I were more or less convinced that she can make it to her 99th birthday less than 60 days away. But I won't blame her if she changes her mind.

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