Isaac was born at 34.5 weeks, by C-section. He came out early because I had developed eclampsia (aka pregnancy-induced super high blood pressure) and because the placenta was stupid and had stopped feeding him properly, so he was very small.

I was an ill-prepared new mom. We hadn’t yet started our prenatal classes, and I had never cared for a baby. Brock and I had never before changed a diaper. Suddenly we had a newborn to take care of, albeit in the sheltered and uber-supervised world of the Victoria hospital’s Neo-natal Intensive Care Unit (NICU).

Isaac and I lived at that hospital for three weeks. The nursing shifts changed twice a day, and so every 12 hours I had a different set of baby experts advising me on how best to feed and care for my kitten-sized infant.

The advice/direction I received from the different nurses was often contradictory (“You need to get a nipple shield.” vs. “What are you doing? Never use a nipple shield!”), and eventually I realized I had to take ownership of this kid. It was my job to listen to all the nurses, and then do (or fight for) whatever I thought was in Isaac’s best interest.

 

It wasn’t an easy realization for me — I have always been a pleaser.

HEATHER: “I think that maybe we shouldn’t try to stick that feeding tube down Isaac’s nose again, because he seems to be crying and screaming a lot when we try. You’re the expert, of course, but.”

I thought Isaac and my 28 days in the Victoria and Cowichan hospitals was the worst experience ever, but it was actually just training for when Brock was diagnosed with cancer.

Advocates are essential: Heather proves the case with cancer anecdotes

Brock was a big, strong, vocal guy, but when he woke up in early 2015 after having his left kidney (and a gigantic octopus-tumour) removed at a Vancouver hospital, he was dopey with drugs and weak from surgery.

I spent every day at the hospital with him, from 8/9am until 10pm, and I can’t imagine what his experience would have been like without me there to advocate for him.

I don’t know what went wrong with his painkillers, but that first day Brock was in excruciating pain. He was in so much pain that he couldn’t talk, while the doctor tried to have a Serious Conversation with us in Brock’s hospital room. The doctor was being all solemn-faced and all I could see was Brock in speechless agony, contorting in his bed. Why wasn’t the doctor noticing this? (In retrospect, I think he was focused on trying to make us understand that Brock had only a few years to live. We remained in denial for 8 more months, probably due to not hearing that conversation in the hospital.)

I bolted down the hallway to find a nurse, so Brock could get a shot of something, and followed the nurse around until she arrived at Brock’s side with drugs in hand.

Another time, a doctor/nurse asked Brock where his pain was on a scale of 1-10, and when Brock said 10 the guy made him feel like a wuss.

HEATHER: “This man is a farmer. He is not a wuss. If he says the pain is a 10, then that’s a 20 for normal people. Please make it better.”

Heather stops the anecdotes and gets to the point

I believe that most health care workers don’t want their patients to be in pain. I think they have good intentions. I’ve also seen how busy and overworked they are.

The best way we can help the people we love who aren’t able to speak up for themselves (due to age, illness or temporary incapacity) is to be there with them, make sure they’re okay, and advocate for their needs when they can’t. We can ensure they get what they need, whether it’s medication, attention, etc.

It scares me to think that I will someday be in a vulnerable situation and not have someone to advocate for me. I intend to be very nice to Isaac, and train him to be an assertive, polite person.

Heather invents something that might already exist (again)

In light of the Baby Boomers approaching their older years, it would be a useful (and maybe lucrative?) service to be an Advocate For Hire. Maybe this is what social workers and home care aides are supposed to do. Or maybe there is a gap here … maybe someone approaching their needier years would find reassurance in having a thoughtful, attentive, assertive person in their corner, who checks in on them regularly, understands their advance care planning wishes and values, and knows the system well enough to advocate for their client’s needs.

I’ve been thinking about advocacy because I have family members who are caring for their parents. Some of these elderly folks are in care homes, some not. Some of these folks weren’t always good parents to their children.

These children (who are 50-69 years old) make regular visits: some bi-weekly, some daily. I think they are super heroes for doing this. I hope they benefit from the same attention when they need care themselves.

And I wonder about the elderly, the hospital patients, and the NICU babies who don’t have someone advocating for them.