Wednesday, March 6, 2013

We All REALLY Need Respite

Scene from the Metropolitan Opera's production of Parsifal
This past Friday was a sorely trying day. 

My son-in-law, Charles, who is much too young to have colon cancer and yet does have colon cancer had a mid-morning appointment at Norcal Imaging in Oakland. He's been having difficultly keeping food down and stomach pains so his doctor ordered an ultrasound image to see if there was an obstruction in his stomach.

My wife Jackie, who is Charles' primary caregiver, goes to the gym Friday mornings so it was going to logistically difficult for her pick up Charles in time for the appointment. She didn't think he should or could drive himself.  

So Jackie asked me to pick Charles up and meet her at the image center.

When I got to Charles' apartment in Richmond, about 10 miles north of Oakland, the first thing I noticed when he came to the door was he was thiner than when I last saw him only a two days prior. And he was moving very slowly.  The doctor's office had just been on the phone with him, he said, and there was something "alarmingly wrong" with the test results from the blood test he had had the day before.

His white blood cell count was very high. His red blood cell count very low.

"They want me to go to the Emergency Room right after the ultrasound," he said.

Jackie was waiting for us at the entrance to the image center. I dropped Charles off and went to find a place to park the car, which ended up being a couple blocks down the street. I wasn't really needed at this point but I wanted to tell Jackie about my conversation with Charles concerning his blood cell counts.

Turns out it was a good thing I went back. The nurse at the image center recommended Charles go immediately to the ER at Alta Bates hospital because there they could give him some medication for his pain and also do any tests he might need. 

Luckily, Charles recently qualified for Medicare, he could go to Alta Bates, which is a terrific private hospital in Berkeley, not far from the image center. Otherwise, we would have had to take him to Highland Hospital in Oakland, the large, sprawling public hospital featured in the documentary film, "The Waiting Room." (see trailer below)

The doctors and nurses at Highland are wonderful, but it can take hours and hours to see them. At Alta Bates, the wait was only a few minutes.

Jackie stayed with Charles. I went home to walk the dogs, get some work done, and be available to pick up our granddaughters from school. 

At Alta Bates, they checked Charles into a private room which seemed like an incredible luxury compared to the bed in the hallway he would have gotten at Highland. They gave him medication to control the pain, and scheduled him for a CAT scan of his abdominal area. 

We of course feared they would find a tumor in his stomach, but after comparing the scan with a the last scan he had several months back, they said there was no change. 

Around 7 p.m. that evening, as I was fixing dinner for myself and our granddaughters, Jackie and Charles walked into the house. My expectation was that Charles would spend the night in the hospital, but now that his pain was under control and the cat scan was negative, they released him. 
They gave him a "powerful laxative" to clean out his system and told him to come back if things weren't better in a day or two. 

We took Charles home along with his youngest daughter and his dog and made sure he was comfortable. It had been a stressful day for all of us, especially for Charles and for Jackie.

Such a Long Journey

It's been over 2 years since Charles was diagnosed and for all this time Jackie has been on the job as his primary caregiver. She has gone with him to every doctor appointment, sat next to him during every half-day and all-day chemotherapy sessions, picked up his prescriptions from Highland, made sure he takes his medication, kept in touch with out-of-town family members, bought his groceries, paid his essential bills, organized fundraisers on his behalf and a million other things. Early on, she even took him to Paris to visit his Aunt Nancy and she arranged trips for him to see relatives in Los Angeles and Cleveland.

How does she do this? How do other people in similar or even worse situations stay on top of their burdensome caregiving duties year after year?

On Saturday morning, I found one of the most important answers to this question when I stumbled upon an April 6, 2011 post by Michael De Rosa on his "dismantling dis-ABILITIES" blog, titled "Caregivers Need Respite."

Respite, according to the post is "a delay or cessation for a time, especially of anything distressing or trying."

That very morning my wife was at the AMC movie theater watching a simulcast of live opera from the MET Opera in New York of Wagner's "Parsifal," described in The New York Times as "among the most metaphysical, ambiguous and profound, if inexplicable, operas ever written." And I might add, since Jackie left the house at 7:30 a.m. and didn't return until 3 p.m., one of the longest.

Opera, simulcast from the MET, is my wife's respite. 

Fine Dining at the AMC

She goes early so she can save the same seats for her 5 or 6 lady friends. In violation of the movie theater's policy, they sneak in little French sandwiches, cheeses, fruits, and other delectables plus a bottle or two of wine, real glassware, plates, and cloth napkins. There are usually two intermissions and during these they break out the goodies and often share with people in nearby seats.

For several hours Saturday mornings after the long ordeal of the week before, my wife enjoys opera, her friends and some nice things to eat. She doesn't think about Charles, me or the granddaughters, about all the things needing her attention. 

It's her respite and its one of the reasons she can keep on keeping on.

Caregivers do need respite. They need to get away for a time to a place where they can forget all the worries and details of their caregiving burden. If you know a caregiver who is in a situation where they cannot do this, maybe you can fill in for just an hour or two once a week so they can get some respite. 

(If your caregiver friend is an opera lover, however, it might be a little longer.)

--David Bunnell 

Want to know more about Unfrazzle?

1 comment: