The Loss of a Caregiver Because of Death: Part One

The Story of Overwhelming Paralysis and the Terrifying Events of the What-Ifs

In 2009 I became paralyzed from an auto accident. I thought that was one of the most difficult phases of my life. Learning how to function from a wheelchair, how to go from a totally independent woman at age 48 to now living life from the sitting position, forever. But wow, was I ever mistaken. In July I lost my caregiver, my spouse of 29 years, my other half of my being, to cancer and I became paralyzed all over again. I was paralyzed due to grief while sitting in a wheelchair. We all experience sadness, but what happens when the source of the grief is your spouse, who happens to be your caregiver. The Rollin’ RNs decided to tackle this huge topic.

First off, let’s review the emotional stages of grief that we can all go through which are shock or disbelief, denial, bargaining, guilt, anger, depression, and acceptance/hope. I also feel there is one more stage that occurs before acceptance/hope and that is a state of being extremely overwhelmed. I will explain my feeling of being overwhelmed later but these stages are in no order and may occur anytime during the emotional rollercoaster.

Disbelief occurred in 2007. I begin my story in 2007 when my husband was diagnosed with malignant melanoma, the worst of all skin cancers. We had been married 19 years at this time but I couldn’t believe my husband was diagnosed with malignant melanoma. He had a small mole on his back that began to itch. As a nurse, I looked at it, gave my assessment (one that NEVER included cancer) and suggested we have it examined by a physician. The physician looked at the mole and said, “No big deal. We will remove it when it’s convenient to you.” It was removed shortly afterwards and then we were called to his office and given the news. Malignant Melanoma. Immediately after the surgery and recovery, we moved forward again, a tiny blip in our road of life. No biggie. Then in 2009, our auto accident occurred that left me a paraplegic, paralyzed completely from mid-chest down. Another stage came into being - guilt. Our SUV was being driven by my husband and even though the accident was not his fault, he felt guilt by not protecting me when the truck T-boned us by running a stop sign.

2009

Thus, began our second huge hurdle that again included teamwork between my husband and I. My sweetie never allowed me to be paralyzed from my spinal cord injury and I never allowed him to stop living because of his cancer. As I alluded to earlier, these were tiny glitches in our road of marriage. Things we would muster through with the aid of the other, together.

2013 After 2009, we mastered the road of rehab and our new normal of traveling with practically everything but the kitchen sink with life in a wheelchair. The “what-ifs” as we like to refer to them. “What-if” your bladder gives out prior to getting home and your pants get wet? “What-if” the Mexican food from the previous evening causes diarrhea? You know the “what-ifs” of paralysis.

In 2015 we relocated far from family to Texas for my husband’s job as a healthcare administrator. The climate was wonderful for me in a wheelchair. The warm sun on my back. Being paralyzed, you have a sense of being chilly all the time and constant pain. The Texas weather agreed with my body. But in 2016, the stages of disbelief and grief came forth…..again. My husband started walking oddly and having difficulty tying his tie. Denial and anger then developed in my mind. Yep, you got it……my husband was diagnosed with malignant melanoma, but now in his brain and the tumor was growing quickly and required emergency removal. I started bargaining with God to please protect my husband. He was my best friend, caregiver, and we were a great distance from family. I began to feel extremely paralyzed with the “what-ifs” again. “What-if” my husband didn’t survive surgery? “What-if” he DID survive surgery but was mentally disabled from the tumor? His tumor was successfully removed, a couple of days hospitalization, a few rounds of radiation, and we were back to normal. Hope set in that maybe we would be just fine.

MRI prior to surgery

Hope didn’t last long. A few weeks after my husband returned to work, he was notified that his job position was eliminated. Many stages of grief then set in, anger, depression, denial, and then finally , acceptance and hope. We packed up and began the drive back to the east coast to familiar warmth of family.

The job hunt began again and we relocated to Ohio for a Healthcare Executive position. This time the weather didn’t agree with my paralyzed body. Ohio weather is extremely cold and damp, all the time, but we tolerated it. I didn’t like it but I tolerated it for my husband’s job. All the while my husband was trying to get through each day fighting his evil illness.

In October 2017, my mother unexpectedly passed away and the following month, our niece, her boyfriend, and her mother were tragically murdered by our niece’s step-father. But to make this long story shortened, in January 2018 my husband’s job position was again eliminated. All salary and life insurance gone with the job. At this point, he had lost all desire to continue on. He completely/independently packed us up and headed east, home……again.

My husband had two goals:

One: To get me “home” to family and in May he achieved that goal.

Two: He was to be able to attend our oldest son’s wedding, which occurred in June.

Frank and our sons at wedding.

Both goals he achieved with grace and dignity.

Even though I knew the sequence of events unfolding in front of me, I refused to accept. I was attempting to bargain every single day with God. I quickly and constantly rationalized to God, “you don’t need my husband; I do. Please leave him with me”, even though I knew I was being selfish asking for such. My husband’s body was breaking down and I was unable to accept it. Denial, anger, and every other emotion was setting in. Being a nurse, I was supposed to fix this, and I couldn’t.

My sweetie. On July 9th, 2018, my best friend, my caregiver, the father of our children, my husband, my everything...relocated his address to Heaven and I became flooded with so many emotions. This is where the eighth emotion arrives, being completely overwhelmed. I have gone from being the “girl in the wheelchair” to now being the “director of our family…while in a wheelchair”. I never gave up being the “mom”, but my husband took care of EVERYTHING for our family, because he was good at it all. This is where my “paralyzing grief” showed up.

My husband and I had expertly teamed up over a nine-year span to fine tune our “handicapped dance.” I call it a “handicapped dance” because we were a team in executing the tasks at hand. Suddenly I was back to training a caregiver as to my care. Anyone who has gone through rehab understands the learning curve needed to complete a task safely. I was at this point again, hence the “paralyzing grief” that set in. I have a wonderful family and I am surrounded by a plethora of friends but none of them were my husband and no one could perform my care as my husband did. Anger arrived and was rapidly accompanied by absent-mindedness. My brain swiftly turned to mush and I couldn’t remember the details of anything. I tried but there was so much on my plate, the details quickly left my brain.

As of writing this, I am moving into my second month of being a widow at 56 years of age but while researching this article, I learned the average age of a widow is 59 and 3 out of 4 women outlive their spouse. Wow, that’s a fact I didn’t know. I am beginning to move out of my paralyzing grief, my life is rolling forward, and we are making changes. But life is challenging when the major bread-winner is now gone. We were unable to get life insurance after losing a job due to the cancer and everyday I start my full-time job of making phone calls to finalize my husband’s paperwork.

My family

You know, life is a funny thing……I found myself in a lovely Facebook group of spinal cord injured women after my accident and now I find myself in a growing group of knowledgeable women who are also young widows. Neither was a group I wanted to belong to but I’m thankful to God for both. Acceptance and hope are beginning to arise out of my despair, and……it’s all good, really.

Part 2 of this article will include tips for moving out of the stages of grief and rolling forward….as soon as

I find them. (Read Part 2 here)

It’s all good, so keep on rollin,’

Patty, BSN, RNC and Roberta, RN

The Rollin’ RNs ™

References: Grief. The loss of a loved one. Obtained August 25, 2018 from https://www.medicinenet.com/loss_grief_and_bereavement/article.htm.