In sickness and health | Guest Blogger Amy Foster

Posted by Reeve Staff in Daily Dose on May 31, 2018 # Mobility, Caregiving

Les and I had 44 days in our new home starting the 2nd half of our lives together before his accident occurred becoming a complete C4 quadriplegic from a diving accident. We had a unique love story before the accident and has evolved into a solid marriage built on love, trust, and staying with someone for “better or worse” and in “sickness and in health”.

Les and I were married on the terrace at Spaulding Rehabilitation Center on October 13, 2016, just 2 months after his accident. As I stood there and we took our vows I had never felt more sure that Les was going to be stuck with me for life. What I wasn’t very confident about was if I was qualified to be his caregiver (and wife). I only had a few short weeks to get trained on everything from bladder and bowel care to learning how to safely transfer Les from the bed to his wheelchair and to look for all of the warning signs of Autonomic Dysreflexia.

During Les’s time in rehab, I was lucky enough to stay with him most of the time and it dawned on me that if a hospital isn’t fully equipped to care for Les, how am I? Simple things like needing a sip of water in the middle of the night. Didn’t the hospital have anything adaptive to attach to the bed with a straw? I spent many sleepless nights researching equipment, medical supplies, grants, applying for SSDI, and home improvements. The list goes on. I had 5 weeks to pull off a bathroom remodel and wheelchair ramp. I consider myself an organized person with perhaps more resources that the average person but I was struggling. I was frustrated that there weren’t more resources that covered “all the bases”.

Upon returning home, we arrived to a pile of boxes with medical supplies. Most of the items looked foreign to me but it’s amazing how quickly you realize what you really do and don’t need. Les was only home for 5 hours before returning to the ER for a blocked catheter. That was one thing no one trained me how to do. He suffered for hours with a massive headache and if only I had been shown how to change it I would have spared him 2 days of being in the ER with so much pain. Now, I can practically change it blindfolded. I joke that after 18 months I have enough supplies to open my own wound care clinic. Les also had suffered a stage 3 pressure sore on his coccyx. I recall the home nurse visiting a few weeks after being home and she asked who was treating the wound. I said, “you are looking at her”! She didn’t find it funny but we were never set up with a wound nurse. When I showed her the before pictures compared to how it looked she said, “you are doing a great job”. Trial and error is what it boils down to and I have learned from so many of my mistakes. My goal now is to help as many new spinal cord patients and their caregivers with advice and access to resources.

When I was growing up if anyone asked me what I wanted to be when I grew up I said “anything but a nurse”. Ironically I love being Les’s caregiver. We make the most out of routines tasks that have to get done. We will pretend going to the doctor’s appointment is a “date”. Sunday’s during shower time we have brunch and drinks in the bathroom. Les’s injury has forced me to not sweat the small stuff. Although he will say I can’t let go of emptying the dishwasher. Now, I force myself to sit down and watch a movie which allows me to spend time with Les. Les and I were lucky enough to travel a lot before the accident so we are now getting a chance to slow down and appreciate the simpler things in life.

We are fortunate to have a caregiver for the weekdays and it has made a huge difference. It’s healthy for Les to have his own time with someone besides his wife to focus on his rehab and personal goals. It’s a great balance and makes us appreciate our time together so on the nights and weekends I can be his wife first and caregiver second. For anyone new to being a caregiver or patient, it gets easier. If I lived by the words that the doctors told me that Les would never breathe, talk or eat on his own I would have given up. Les is a fighter and has hope we will find a cure for spinal cord injuries.

~Les & Amy Foster