feelings of despair

Sometimes the feelings of despair are so overwhelming that I cannot breathe. I hold my breathe trying to overcome this feeling of helplessness. I am screaming inside but cannot seem to verbalize on the outside. I hide so I don’t have to pretend that life is glorious. I smile on the outside but cry on the inside. there are times when people offer their advice freely, thinking they somehow have the “magic” information that will somehow make every bad feeling, moment, dreams, days, just disappear. I know that they are well meaning advice to help me overcome my sadness and my guilt. But, it is not that easy to just “get over it”. I made a promise, damn it. I promised my brother, over and over that it would be okay. I promised my brother Nick, that he would “get his brains back”. I believed it! I believed it so much that I had Nick believing it too. Yet, I was wrong. I knew God preformed miracles, I have seen it before. I wanted a miracle for Nick! I believed in a miracle for my brother. I was wrong.

The year Nick went to to Iraq for OIF, I had constant dreams of him. I had a dream that Nick was standing on a hill as I was down in a valley. Nick was in his fatigues, at base camp, waving down at me. I was walking up towards him. All of a sudden, I see a large truck driving toward where he was standing. I try to yell and get his attention. But, he cannot hear me over all the noise and just keeps waving at me. I try to run to warn him, but I am too late. I watch in horror as my brother is run over by this truck. I always wake up at this point and cry.  Finally the dreams stopped and Nick came home from Iraq. I thought that it was just my fear that drove those dreams to happen. But maybe the dreams were a premonition of what was to become in the future.

The guilt I have inside, haunts me. I feel like I failed him. I feel like……

Rationally, I know that non of what happened to Nick is my fault. Yet, the guilt and despair are still there. The nightmares about Nick, still haunt me. Catching my breath, still alludes me at times. Fighting for Nick still controls me.

I miss him. I miss talking to him.

Taking over for Nick

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.

 

The first time visiting Nick at the VA Nick Avery’s Story and brushing his teeth

Moving on without Nick

It has been a little over a year since losing Nick to his battle from the brain injury he received, and the subsequent dementia that finally took over. It has been heart wrenching at best. To watch a loved one waste away to someone whom you hardly recognize, is beyond heart breaking. The guilt that most of us felt was some times unbearable. We all fought for Nick. We all prayed for a miracle for Nick, believing God could do just that, a miracle. I think the anger that was felt afterward,  and the questions that led back to “why God”, left a jagged hole in our innermost being. Why would God give a miracle to some but not to others? Had we not prayed hard enough? Were we not faithful enough? Did we faulter in our faith while we were believing for a miracle? Yet, maybe Nick did receive his miracle, his sanctuary from all the pain, hurt and struggles. Maybe God’s answer was to bring him “home” where he no longer had to fight an unknown infliction that took over his mind, body and personality. Just maybe God was saying, “I hear your prayers and I am going to bring Nick home so he can be whole again”.

Maybe we did not receive the exact prayer we were hoping for when we prayed for Nick’s brain to be whole again. So Nick could be this loving father, brother, son, and friend again. Maybe God had other plans for Nick.

For those of us left behind, the pain we feel is all too real. There are days that seems like the painful sorrow will never end. How do we go on? How do we heal from the pain that left a gapping hole in our heart. Fighting for so long for Nick put us in the drivers seat,  while Nick was “shot gun”, going along hoping to find a cure. When Nick died, and his funeral was over, the feeling was like hitting a brick wall going a 100 mile an hour and then being forced to stop this insane fight in an instant. How do you stop fighting for your loved one after fighting for so many years? A person can lose themselves after a while,  and then has to regain a life they put on hold while they were trying to save a person they loved and cared for. It truly has been an agonizing year of sorrow, stress, nightmares and in some weird way, relief.  This followed by intense guilt. Putting away Nick’s personal belongings became a task too hard to bear and being pressured into getting rid of things no longer needed was unthinkable. Most people pack up their loved ones things and donate them to some worthy cause.  Yet, this was not the case for Nick’s personal things. We were not ready to let go. It was too soon to even think about “getting rid” of Nick’s personal stuff. It felt as though we were betraying Nick somehow, by packing up his things.

The confusion and the inability to think straight took a really long while to straighten out. The heart, mind and body could not comprehend what has happened. A person trying to force themselves to think rationally,  as well as make rational decisions, was not possible. It was the hope for a miracle that would possibly keep Nick here on earth with us, the people who loved him, that nagged at my soul and broke my heart, over and over, into millions of little pieces with each new memory, song, phrase, mail that constantly arrived in his name, and then the phone calls inquiring about Nick over the last year that would send me into such sadness.

I don’t think anyone who has experienced such a loss can tell you that you will “just get over it”.

(It has been 3 years and it continues to feel like yesterday)

Nick Avery’s Story

Nick Avery's Story.