Friday 9 March 2018


This week, an online article caught my eye. It was a report on research into patients with heart disease who had undergone surgery to implant called a Ventricular Assist Device, or LVAD. Turns out that a few weeks after surgery, the patients felt much better, but their caregivers felt worse. The stress and worry about a new device made life miserable for family members, at least at first.The American Heart Associations' scientific statement on LVAD patient selection notes that adequate social support is crucial for the success of LVAD therapy, and many centers require patients to have a designated primary  (i.e., unpaid family member or friend) to help them manage their condition.
Researchers found caregiver strain worsens immediately after implant and then returns to pre-implant levels over six months, but does not further improve. The greatest sources of strain for LVAD caregivers in this sample were time constraints (no time for self-care or other obligations) and compromised social life, followed by physical strain. And the study also showed that the quality of the relationship between patient and caregiver influenced outcomes for both. We know and have always known that a good relationship with our loved one makes us happy and healthy - now researchers are starting to sit up and notice too.

This story reminded me of when Nicholas had his first 'assistive device' implanted - the year was 1990 and the device was a gastrostomy or G-Tube for feeding. Nick was only two years old and I remember being trained to use the tube for liquid feeding, but I also recall not remembering anything I was taught by the time we reached home. I think my experience is typical of caregivers whose loved one has just had a surgery to implant a device. Here's how I described that time in my book, The Four Walls of My Freedom.

A specialist feeding nurse took me aside to show me how to use the feeding tube. There was a plastic bag with a length of tubing protruding from one end, plastic syringes and a radio-sized electric feeding pump. The nurse explained that I must wash my hands with Zest soap before beginning the preparation. She showed me how to prime the length of tubing without flooding the tiny drip chamber. Next came the demonstration of how to fit the chamber into a slot in the pump, lock it in place, and then program the pump with the desired drip speed, total dose and total volume. Finally, she showed me what to do if Nicholas felt sick. “He will retch, but won’t be able to vomit except out of his tube. You can just let his stomach contents drain into a kitchen cup if he feels unwell,” she said breezily. I was still wondering about the Zest soap, but I must have nodded my head to register an acceptable level of comprehension because after teaching me how to clean the tubing with dish soap, clear water and finally white vinegar, she exited the room, leaving me to pack up all the mysterious equipment. Just before leaving for home, a patient copy of the discharge note was thrust into my hand. The contact details for the nutrition specialist were pointed out to me in case of emergency. It was a number that I would come to know better than any other.
I've always said that when Nick or my Mom get sick, I'm in high energy, high alert mode. But when they come from the hospital and recover, that's when I'm in a puddle of jelly on the floor. I'm glad someone is studying this!

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