At this time 3 years ago, my Dad was in open heart surgery to place a mechanical heart pump, called an LVAD (Left Ventricular Assist Device). He initially did not qualify, but after repeated failed attempts to place a 3rd wire to his 2 wired Pacemaker/Defibrillator, caused significant trauma & harm, worsening my Dad's Heart Failure, they went ahead with the implant on March 1st, 2017. That day was filled with lies, attempted cover-ups that this R.N. called them out on, many heart dropping scares & total loss of faith in a team who literally held my Dad's Heart in their hands. Dad was rushed from the Recovery Room back into a second open heart surgery to stop bleeding in his chest due to a leak from his implant surgery. While in surgery or immediately after, he suffered a stroke. More complications arose with each & every day. It was a horrible nightmare that we could not wake up from. 11 months of agonizing hell.
Dad's LVAD Team would not listen to me...his Critical Care Nurse, his 24/7 Caregiver, the one who had known him for 46.8 years and cared for him for over 27 years, when he had his first massive heart attack & quadruple bypass surgery. I felt completely abandoned & alone in trying to deal with a critically ill & very high acuity care patient, who also happened to be my Dad. Now I was dealing with a Million Dollar LVAD, my Dad now having next to no native heart function, so if the pump failed, a clot formed in the pump, the driveline dislodged, the controller failed, and more...my Dad died. Nerve wrecking doesn't even begin to describe the degree of constant stress and worry I was under...and all without Dad's LVAD Team, who purported to be our "close family," and available to help us with anything we needed.
I took the utmost pride in caring for my Dad, and I am telling you, the majority of people on the planet have no idea what caring for an incredibly ill LVAD patient is like. Non-stop fear, non-stop worry, making sure Dad's pump speed is correct every day, making sure all rates are correct, making sure his vitals are stable, making sure his INR values are within the therapeutic range, making sure there are no major weight gains, making sure batteries are charged, making sure the base unit is plugged in and ready to switch to battery power in case of a power failure or malfunction of the unit, battery changes, driveline dressing changes, monitoring for driveline infections and much, much more. It was more than one person should have to handle, but I did it because I loved my Dad.
I have a lot of anger & rage that have been seething for 3 years now, causing damage to myself. How does one not get and stay angry or enraged when: The team sees your Dad for 5 minutes and checks his pump numbers, says he looks good, then sends you on your way...not listening to my concerns, observations and assessments; The Social Worker doesn't show for an appointment with you (she forgot and you stayed 2 extra hours to meet with her, now getting stuck in Cincinnati rush hour traffic home...for 2.5 hours after being at the hospital all day) and later on down the road argues with you and cancels the Hospice your family doctor ordered after waiting nearly 2 weeks for the LVAD Team to order, because you know your Dad is dying an agonizing, inhumane death; It takes another 2 weeks + to get "their approved Hospice," of which the Nurses were supposedly ALL trained in LVADs, which NONE were. I am the one who had to deactivate my Dad's Pacemaker/ Defibrillator (ICD). I am the one who had to turn my Dad's pump off after he took his last breath. I am the one who disconnected his controller. The Hospice Nurses had no clue; When the very first thing the LVAD Nurse Practitioner says on the phone with you after, "I'm so sorry," is, "You don't have to tell me now, but we'd like for you to donate your Dad's LVAD equipment back to us."
I can feel my heart racing now as I reflect upon this and write this. Although it would do absolutely no good to tell the LVAD Team all of this again, I still need to say it one last time...
Do not lie to me. Do not patronize me. Do not discount me. Do not treat me like I have no training nor an advocate's voice for my family. Do not argue with me. Listen with your ears and keep your mouths shut until you have heard what needs to be said...you've known my Dad for a few months...I've known him my entire life. Do not refuse a patient & family's request for Hospice. Do not cancel Hospice that was ordered by our family doctor after your blatant refusal to order Hospice, which prolonged my Dad 's suffering because you felt he was doing great and now want your more than LVAD "unqualified" Hospice to come in instead. And, for the love of God, do not ask for your patient's equipment 5 seconds after he took his last breath and his Daughter had just turned his heart pump off & disconnected it. Being in the medical field since I was 18, I've seen a lot of unprofessional conduct, but y'all take the cake.
I have decided recently to make some major changes in my life for my own well-being. I started with disconnecting from groups that keep my anger & rage embroiled. So, I've left The... Hospital LVAD Group & all LVAD Support Groups I was encouraged to join before my Dad had his LVAD implant. I also cannot afford to continue to allow myself to be upset over & over again because of all of the terrible things that my Dad & family endured from 2/14/2017 through 1/15/2018. I've realized that at the beginning, that anger propelled me forward to be the best Advocate, Caregiver & Daughter for my Dad. Dad's been gone a little over 2 years now and all of this pent up rage is hurting me. I was more than justified in my anger and speaking up to the team, no one can tell me otherwise and be right.
I believe that under all of the rage is mounds upon mounds of festering pain. Pain from being lied to and duped. The pain of losing trust in a team who had gained my trust by their dishonesty. The pain of watching my Dad suffer agonizing pain and his "team" refusing to do anything about it. The pain of seeing the pain in my Dad's eyes as he became confused, started suffering with dementia, experienced delirium and hallucinations (auditory, visual & tactile) & being totally helpless to help him. The pain of knowing my Dad is dying, but having to spend my time & energy fighting with the very medical professionals who were supposed to "be there" to "help us." The pain of not really getting to be my Dad's Daughter for 11 months because I was his Critical Care Nurse, Caregiver, Advocate, Voice. The pain of knowing that I lost precious time with my Dad during those 11 months. The pain of knowing that I had lost my Dad on 3/1/2017, because he was never the same after his surgeries and all of the resultant complications. The pain of not being able to grieve any of the countless losses until after he passed. The pain of exhaustion and words exchanged that under other circumstances, never would have been said. The pain of 11 months of complications and rapid deterioration that couldn't be stopped. The pain of losing my Dad while watching my sweet, very sick Sebastian grieve himself to death over losing his best buddy. Being unable to help him devastated me.
Although I live with this pain daily, I can no longer allow the rage to finish destroying me. Even though none of the mentioned have ever asked for forgiveness, for my well-being & healing, I want to extend my forgiveness to the following people...(names left out for privacy)...
...And, I forgive myself for harboring anger, rage and resentment towards these individuals and the hospital for 3 years. What "could have been," was not, nor can it ever be.
I am finally ready to let this go. In letting go, I free up the space I need to heal all of the damage done by all of this and move on. I will always remember, but need to let go of the things that cannot be changed. I deserve to heal.
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