It’s Father’s Day, and Barbara Abramson’s heart is heavy with questions.
Four years ago I made a decision that still haunts me. A decision that would change lives forever. His would be ended. Mine would be empty without him.
Guilt. It is something I have been holding in my heart since that day. Did I make the right decision? Could I have done something different, made another choice, gone in a different direction, tried something else?
Some will say taking him to Hospice was the humanitarian thing to do. I allowed him to die with dignity. I signed the papers that gave permission to inject him with a sleep-inducing drug, until many days later, he drew his last breath. It took much longer than it did when I took my beloved dog Scooby to the vet, but it felt the same. It felt like I had put my dad down.
My dad was a kind and gentle man. He loved tooling around in his garden, playing bridge, and solving puzzles. He had a dry wit that I loved, and to this day I smile thinking about his silly jokes.
He beat Leukemia, followed by a nasty bout of shingles. He worried deeply when Mom had a heart attack and when she barely survived open-heart surgery, contracting MRSA while still in the hospital. The rest of her life involved daily struggles with diabetes, kidney failure, and congestive heart failure. Dad felt pained giving her insulin shots. It weighed on him heavily.
He took care of her the best he could. Until he couldn’t any more. Dementia crept in, and then Alzheimer’s. Too many things were falling through the cracks, and changes had to happen. First I hired in-home care for a little help with laundry and cooking, while I sorted out the bills. It turned out it wasn’t enough.
Years before, my parents went on a trip, dawdling about around the country for the summer. I asked my dad to give me power of attorney and to be their health care surrogate – just in case. I paid their bills while they were gone, knowing that if anything happened to them on the road, I could make necessary decisions on their behalf.
With Mom and Dad’s health in jeopardy in their later years, having those documents allowed me to help them live better lives. It also allowed me to uproot them from the home they loved for 37 years and place them in an Assisted Living Facility, sell their home and make decisions for them that I know they didn’t agree with. I told myself I was doing it for them. They could no longer take care of their home. Dad had taken out a reverse mortgage and was tumbling into debt. I was struggling to pay their bills, and their self-care was going downhill fast. The food in the fridge was spoiling. So many things were going wrong every day, and I was alone trying to help them. I was exhausting my solutions and myself.
Walking through the grocery store one evening in tears, trying to figure out what to make them for dinner, I realized that I was falling apart. Mom needed insulin four times a day, and their life and mine felt turned upside down. Two weeks later, I moved them to an Assisted Living Facility and I know they resented it deeply. From a three bedroom, two bath house with a full kitchen and back yard, they were now crammed in a one room studio apartment because it was what they could afford. I sold their house, paid off their debts, and spent the next four years watching them both decline; Mom physically and Dad mentally.
As Mom continued to struggle with health issues, Dad drifted into his own world. Sleeping was his escape from the fear of what was happening to both of them.
Becoming the parent of your parents is one of the hardest things. I had to make the decision to sell his car. He never understood that he was no longer safe on the road, even though he had failed a road test. Dad said he slept to escape his sadness and frustration. I have trouble sleeping sometimes, feeling I contributed to much of it.
When Dad became too disoriented for activities of daily living according to the ALF, I moved him to the Alzheimer’s ward. I think it confused him even more, not being with mom, and I know it broke my mother’s heart. She died six weeks later; I think she gave up.
I never told Dad that Mom had passed, another decision that festers in my heart. He was struggling with his own mind, not knowing who people were, although he did know me. I just couldn’t bear to add sadness to his journey.
Then Dad contracted “C. diff” (Clostridium difficile), a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon, and ended up in the hospital and then a nursing home for rehab. He couldn’t come back to the ALF until he was cleared of the contagious bacteria. I watched him decline more each day, both mentally and physically. There were many sleepless, tear-filled days and nights.
Finally, he was cleared to return and go back to his shared room. He was barely eating, and continued to lose weight. Sometimes he would eat a little for me, but he was now sleeping almost 20 hours per day. The ALF recommended I call in Hospice to help him. It was so confusing and overwhelming. I wasn’t ready to let him go. I sat by his bed for hours, begging him to wake up and eat. By the second or third night, he was breathing heavily. Hospice said I could sit with him all night as he was transitioning, but I couldn’t wrap my head around what was being told to me. I called 911 to take him to the hospital.
Dad was severely dehydrated by then, but within 45 minutes of a saline IV, was suddenly alert and talking a little with me. I was kicking myself. Dehydration – that was all it was. I could have made a horrible decision. The hospital admitted him for a few days and, although confused, he was doing better and the physical therapy staff even got him up and waking a little in the halls.
Then on one of the walks, he had an accident and lost control of his bowels. I was more upset than he was. Alzheimer’s is both a blessing and a curse. The hospital insisted on testing for bacteria and sure enough, the C-Diff was back and more serious than before.
The doctor quickly went from, “He can go back to the ALF” to, “He will likely never recover from this.” His body was weak, he was nearly skin and bones, and my heart sank.
My father had been sleeping most of the day. He moaned and groaned a lot, whether from physical pain or emotional, I wasn’t sure. And then in a moment of lucidity, he opened his eyes and reached out his arm for me. I quickly moved over to sit by him on the bed and he looked at me and said, “I love you” and then closed his eyes and slept again.
I left the hospital that night in tears, knowing that I couldn’t send him back to the nursing home. And I couldn’t send him back to the ALF. During his three-week stay there he had declined rapidly and it was not an environment where I wanted him to spend any more time. I arranged a meeting with the Chaplain at the hospital to help me with my decision. It didn’t matter that I was Jewish and he was Christian. It wasn’t about how you prayed, it was about faith and comfort — and my guilt.
Two days later, Dad was moved to the Hospice Facility. Moving him woke him up and he came into the building on a stretcher, sitting up and fairly alert. I panicked. My mind said, “Wait – Dad is alert. He’s back. It’s OK. We don’t need to be here!” The staff took him to his room and settled him in bed while they took me on tour. I told them he didn’t walk any more, he was too weak, but suddenly he was trying to climb out of bed, wanting to check out the room, the bathroom, wanting to know, “Is that a TV?” I don’t think there is a scarier rollercoaster than the one my emotions were on.
My heart was pounding. Dad settled down and then looked at me and waggled his index finger. “You’re a good Daughter,” he said. Those were the last words he spoke to me. He closed his eyes and drifted off to sleep and a short time later the nurse came in, morphine in hand. I spent the next four days by his bedside talking to him, soothing him, telling him I loved him and finally, telling him that Mom was waiting for him. An hour after I left on that fourth day, he passed.
I still hold on to those thoughts. Did I do the right thing? Did I do enough? Did I have the right to make the decisions I did?