when I decided to take over as Nick’s legal guardian, I had no idea of the emotional, mental and physical toll it would take on me. Please don’t misunderstand me, I wouldn’t change that decision for a minute. I became a nurse to help people, and now my brother needed that help. Our mother had primary guardianship of Nick for almost 2 years when the toll of caring for Nick, and trying to find help for him, became overwhelming for her. Now it was my turn. Nick is the oldest of 4 children born to our parents and I was the second oldest. It felt completely natural to take over the lead role in the lineup. I have always been “bossy” and a leader and this felt like the natural thing to do. I adore my family and was blessed enough to be a caregiver by God’s grace.
When my sisters and I went to visit Nick in the VA nursing home, he was scared, had yellow streaks on his legs and yellow heals from urine and lack of care. Most of the folks at the VA truly cared and worked very hard. However, being short staffed and lacking in resources, hindered the care for Nick. My sisters and I found Nick in poor shape and living in a sterile environment that looked more like a lock down facility than a place of comfort and compassion. I definitely was reminded of the movie, “One Flew Over The Cuckoo’s Nest”. I was just afraid we would run into nurse Ratchet.
We proceeded to give Nick a bed bath and brush his teeth and hair. That was the day that I realized; what my parent’s had been shown about the VA nursing home and the “excellent” care he would receive, was not accurate. How could I stand by and watch my big brother go through this, when I could do something? I couldn’t and didn’t. I consulted with my sisters, then called my parent’s and asked them if it would be okay if I took over Nick’s care. Not a single person could give us an accurate diagnosis, or tell us what exactly was afflicting Nick. Sure, there were lots of theories, but nothing concrete. To this day, almost 4 years after his death, there is still question as to what was going on in Nick’s body, and what was causing all these symptoms.
I remember working full time as a nurse and also working full time caring for Nick. I remember being on the phone all day long trying to find answers, trying to find the best care, trying to sift through all the governmental red tape. I would talk in my sleep. Wake up crying. Have the feeling of not being able to catch my breath. I didn’t fully understand the amount of work that was involved in taking on Nick’s care. I definitely had a better appreciation for what my Mom and Dad, and others have gone through.
I remember asking for help and not receiving help. I remember people coming in and out to help a bit, here and there. I remember others not exactly sure how to help, so they avoided me. I remember there being times that people would volunteer to make phone calls, But, because I had been making the daily phone calls, and had already traveled the many paths to find help, it would take longer for me to explain to someone what needed to be done, than to make the phone calls myself. I think if there wasn’t such an urgency, and an obvious time line, it would have been fine letting others make phone calls. Nick was losing ground everyday and the urgency to find help became a battle against time. I realize that I am not the only one in the world that has had to deal with such issues, but I did feel so alone. I know that I took too much on my own shoulders, but I couldn’t let Nick “fall“. I would have done anything to save him.