In Sickness and in Health

Having worked numerous jobs throughout my life, I had nothing to prepare me for the emotional and physically taxing job of being the caregiver to my husband. It was, hands down, the roughest, most demanding, and most brutal position I ever found myself in. It took my time and energy, threw me into isolation, left me overwhelmed, frustrated, and on constant crying jags. Not just the exhausting caregiving routine itself but being put in a role to witness my partner's decline at an accelerated pace, one that saw me as his sole caregiver under hospice care.      

 I was there by his side every minute of every day, with no breaks, time outs, or help. The stress and overwhelming weight on the caregiver's body and mind can't be adequately described unless you deal with it yourself. I became frazzled. Caregiver burnout is a real thing.

My every waking moment (and let's face it, the sleep-deprived hours, too) had been filled with adrenaline-induced anxiety, fear, worry, and problem-solving tactics to keep my wits about me while desperately trying to keep my frustrations in check. It was an emotional roller coaster ride without the thrills or excitement attached. I lost sixty pounds in a few short months from the constant movements, lifting, and rushing to my husband's side. I noticed my hair falling out and clogging up the shower drain, and what strands remained turned a silvery gray. Deep furrowed brow lines and premature aging across my face revealed the relentless worry I was experiencing. I'd go to bed each night and have little or no sleep, only to wake up and start the day again, knowing things would never improve. Anticipatory grief.

     I was his eyes, ears, memory, support, and strength. I provided the hand for him to hold, the tender kiss and hug on his best and worst days, the one who injected humor when he needed it most. In the early stages of cognitive decline, he would be seemingly okay, and then, with no warning, everything would fall apart. He would be incapable of retaining information or thinking logically and would get highly agitated and frustrated. I had to learn quickly how to adapt and go with the flow of his unpredictability at a moment's notice by using a whole new skill set in dealing with agitation and aggression. This was difficult if I received his exasperation, anger, and pettiness thrown out in a moment of confusion and frustration. Almost as quickly as hurtful words occurred, tears and apologies would follow at the realization he had been speaking to me that way. He would cry like a small child and ask for forgiveness.

  He recognized my kindness and simple gestures, even when he couldn't remember the names of others or day-to-day details. I was incredibly thankful that he felt safe with me and always remembered my name and who I was to him. I don't know how I might have coped otherwise. I braced myself for the day it might happen.

  My daily routines involved physically moving him from place to place by lifting, shifting, guiding, and pushing. I spoon-fed him every morsel of food and held straws to his mouth, allowing him the ability to drink. I monitored glucose, prepared dosages and gave his insulin injections, put pills in his mouth to be swallowed when he could no longer grasp medications in his hands, and later found myself injecting the hospice-monitored morphine into his mouth to ease his suffering in the final weeks.

 I maneuvered and wrangled shirts over his head and arms into the sleeves, pulled up pants, put on socks, and slipped on shoes like I did when my children were toddlers and could not dress themselves. Washed his hair and body, shaved his beard, gently and lovingly combed, and trimmed his hair. I massaged his arms, back, and legs, plying him with moisturizing lotions when the incessant itching from liver disease overwhelmed him and drove him crazy. 

 I cleaned vomit, blood, excrement, and urine daily for months. Wounds and areas of surgery ports were cleaned, bandaged, and wrapped. I dressed my husband in his adult pull-up underwear, held a urinal to his body to help him relieve himself, and eventually changed his adult diapers. It's a side of caregiving that isn't usually discussed, but it's part of the reality of looking after the seriously and chronically ill. Initially, my having to clean and deal with the squeamish unpleasantries of body fluids and sickness filled the love of my life with guilt and shame. He hated that I was forced to take all that on and said it wasn't fair on me or the life I had signed up for with him. But from the start, he knew I was there for him and would do anything to help make his life easier and more comfortable. Nothing, not even a bit of feces, would scare me off or make me love him any less. Nothing would break the bond we had. He needed to retain a sense of dignity and would always be treated with care, compassion, respect, and my undying love.

 Despite not having a medical degree, I quickly became well-versed in the terms associated with my husband's ailments and held my own during conversations with specialists. I poured over every book and article to educate myself on non-alcohol-related liver cirrhosis, hepatic encephalopathy, transient ischemic attacks (mini-stroke), diabetes, Parkinson's Disease, and organ failure. How could someone so young have so much thrown at him?

    "I" didn't matter anymore; I ceased to exist on many levels, which was okay. This was never about me. I took it upon myself to make my soulmate my only priority. I had to be his rock and his tower of strength. He relied on me for everything. I couldn't let him down or disappoint him. Unlike my husband, I was healthy and disease free. I "could" always eat, sleep and rest - later. Self-care for me was putting my head down on the pillow each night, knowing he was comfortable, safe, clean, and had been looked after to the best of my ability for that day. I was tired, but I was trying, and if I had managed to hold it all together (reasonably well) for that day when everything else was seemingly unraveling around us, it was a good day.                                                                                

I tried looking for the positive in everything. Facing death and dying taught me to be grateful for life's little things and be fully present in the moment. Some days were more challenging than others.

 On May 31st, 2021, Memorial Day, ironically, I cupped my husband's face and kissed his head for the last time, telling him it was okay to leave this world behind. Giving him permission to let go. He passed away peacefully, surrounded by love. The experience of being his caregiver was now over, and I felt I had lost my purpose. He was gone; what now? Our time together through his illnesses had been the worst of my life - and the best. It had given us intimacy and brought us closer in ways I never could have anticipated. Love in its purest form. I may have been his strength, but he remains my life force and inspiration.