Tell Me He's Not Gone (Long and emotional, but has taken me ten months to write)

My father passed away July of 2018. While his death was imminent given his condition, it was still an earth-shattering moment for me. His death was peaceful, quiet and surrounded by those who loved him the most: me, my husband, my daughter, and my sister.

While his death was not a surprise to my head, my heart may have literally stopped for a minute when he died. I mean, this was the man that had survived everything before him and came out better than before in most cases. He survived being electrocuted (the same accident claimed his best friend); received bi-lateral hip replacements at 40; battled bladder cancer and won; dealt with circulatory issues and COPD, survived an aortic aneurysm and a stroke... only to fight the odds and bounce back in rare form. So when he faced an amputation in 2015, he did not see it as a loss...he saw it as a means to an end--the end of him not being able to walk without pain. He wanted to walk again, to run after his two year old granddaughter and take her up to "his" mountain, show her his homeplace, and tell her stories of the flood that wiped out the town's lumbermill and the snowstorm that forced the National Guard to airdrop food in the community-only for the food to miss the drop zone and fall through the roof of another man's home. He even managed to serve in the Army and his time of service fell just after Korea, but just before Vietnam. This man had survived it all. How could he be gone?

This time, though...the odds were higher. He was older. He was weaker. Although he made it through the surgery, he faced multiple setbacks including a medication mix-up that led to him being revived with Narcan by the EMS after he'd been at a rehab center for less than 12 hours, which postponed all physical therapy, weakening him in the process, and making it almost impossible for him to care for himself.

I watched my dad go from being to totally independent to needing 24/7 care in less than 36 hours. He fought hard to regain independence and to avoid a full-time care facility. I left a very good job to help care for him to avoid a care facility. After three months, he was returned home to face the challenge of semi-permanent home nursing (which led to his medications being wrongfully administered-to the nurse's purse), poor nutrition, poor hygiene, and an overall failure to thrive. In May of 2016, he moved into skilled care, and I was convinced that I had failed him as a daughter.

After a few weeks, Daddy began to thrive again. His overall condition improved, his weight gain stabilized, and he quickly became the favorite resident of the 400 unit. He loved the frequent programs, crafts, and was involved with Resident Council. He loved our weekly and sometimes every other day visits, and he looked forward to outings from the care center. He'd received almost 20/20 vision restoration after cataract removal. He was bouncing between doing alright and doing great when he was slammed out of nowhere with the inability to swallow food. After numerous GI studies, the diagnosis that none of us expected was given: early-onset Parkinson's Disease.

While I had already watched my dad's independence fade away, I never imagined watching him deteriorate before my eyes. Each visit was harder for us both, his ability to speak, eat and even comb his hair evaporated. He would sleep more than he would be awake, we had to thicken all of his liquids and move him to a soft foods diet to hopefully avoid aspiration events. Eventually, the swallowing issues got worse, he began to have incidents that would lead to aspiration pneumonia, which only exacerbates COPD. We received late-night calls regarding his condition and the need to move him to the trauma center. He was already a DNR, so each of these calls flooded me with the worry of him passing away before I could get to his side. What would the paramedics do for him? the ER team? Can I beat the EMS to the hospital to intervene? Will they intubate? As Healthcare POA, can I override his DNR? If I can, do I want to? What does my sister want to do? WHAT THE HELL DO I DO NOW!?!?!?!?

After three serious aspiration pneumonia events / COPD flare-ups, and the realization that this would just keep happening over and over, we approached the idea of hospice taking over his care. The local hospice group could care for him just as if he were in the ICU minus the machines. We told Daddy that hospice did not mean the end, it meant the beginning of comfort. He was relieved to hear of no more EMS rides, no more noisy hospitals, no more ICU cloudiness. He was at peace with the decision, and seemed, for the first time in a year, happy. He was ready. He just wanted peace.

When hospice assessed him, they told us that his condition met the criteria in terms of being terminal. I knew the end was soon, likely within six months. But, when I got the call from the nursing staff that said, "your Dad's status has changed, do you want to be with him during this time?" I was confused. '"What do you mean his status has changed? I just visited him the night before and fed him ice cream. We watched TV together. We laughed, joked, and carried on." I was convinced this was just another "flare-up". "He'll be fine when I get there. I'll call my sister, but I am sure he will be fine."

I was wrong.

I arrived by Daddy's side 20 minutes after the call, and while my dad was still alive, in my heat I feel he was already gone. I think he had slipped into a deep sleep/coma, likely due to the buildup of CO2 in his body. Hospice had been alerted of his status change but had not arrived at the center yet. I stayed with him, prayed my sister's two-hour drive from her home could be cut into 45 minutes. I told him I was there, Andy (my husband) was there, his "Tootsie" (his granddaughter) was there. I told him I loved him. We loved him. That it was okay. I don't really know what I thought 'it" was. I could not say the words, "It's okay to let go." Because I didn't want him to. He was my fighter. He had fought everything. And won. I would not say "let go", because he never raised me to let go. Even though my mind said let go, my heart could not. We moved him into a private room, dressed him in clean clothes, and prayed.

An hour later, Dad took his last ragged, congested, earthly breath. I watched him exhale, his chest laying flat. The Unit nurses were fiddling around the room with a suction pump. I told my husband (former paramedic) that I didn't think he was breathing. He went to my dad, called his name, put his head on his chest, and gave me a look. The nurses turned around, grabbed the stethoscope...and listened. And listened. They called for another nurse to listen. All the while, I'm holding on for hope that he's still there, it's faint but there. So my sister could say goodbye.

But...the end had come. They confirmed his passing. I remember letting out a primal sound that I never knew I could make. I looked at my five-year-old, sitting in the corner of the room eating ice cream, completely unaware that the only person on this earth, to love her more than her parents, was gone.

And then, a text ping. My sister, telling me she had just made the highway exit and hoped she had time. I knew she would be coming into the drive soon. I had to get it together. I needed to be strong. When I met her, she said to me, "no sis. Tell me he's not gone".

Eleven months later, those words are ringing as loud as that hot, humid July night. Tell me he's not gone.

 

My dad passed away in July also. He had a heart attack on my birthday. I don't think I will ever get over it. It feels like my mom won't even look at me the same. I feel like I am a curse. My mom doesn't even listen to me when I talk. And she is dating somebody else and is never home when I am. She doesn't listen she just thinks that I am being a overgrown child or says I need conseling. How can I talk to a stranger when I can't even talk to her and she doesn't listen. I really feel like I am losing my mind so I know what you are going through.