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.
Some will say taking him to Hospice was the humanitarian thing to do. I allowed him to die with dignity.
|
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.
So many things were going wrong every day, and I was alone trying to help them. I was exhausting my solutions and myself.
|
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.
Becoming the parent of your parents is one of the hardest things.
|
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.
“You’re a good Daughter,” he said. Those were the last words he spoke to me.
|
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?
I have told myself that Dad died with dignity and I helped make that happen. But as it does every Father’s Day, my heart lies heavy.
P.S. Chicken Soup for the Soul is looking for stories on Alzheimers http://www.chickensoup.com/story-submissions/possible-book-topics
Hey Barb. What a beautifully written piece. Such depth and compassion. And so much love. The questions you ask yourself are heavy and human, and you wouldn’t be the wonderful person you are without asking them–after all, that’s how we keep ourselves honest and in tuned, right?—but I believe you made every best decision possible at the time. You led with your big heart, open mind, and strong loyalty. The answers were heavy and human just like the questions, but take refuge knowing that you were able to bear their weight FOR your parents, to lighten their load. It sounds… Read more »
Barbara, I took care of my dad with Alzhemiers for 4 years. I experienced the same heartbreak. I am comforted by the fact that he died under hospice care in his own home in his own bed. Excellent article. I hope others who are going thru this will know that they are not alone. Will be praying for you.
Thank you for sharing Bob. Alzheimer’s is so cruel because loved ones grieve for years as they lose someone piece by piece. Your father was is a place of love, that is comforting. Thank you for your prayers.
Beautifully written and so touching. I love that he said to you “you’re a good daughter.” You were. You are.
Thanks Jenny. I have felt so comforted by so many who have shared the same thought with me.
There was a reason why he said those words to you. He wanted you to remember. That you had done everything you could. That maybe he was trusting of you and your decision-making. He had so many other options – and he chose those words. That’s what gets my attention, Barbara. Thanks for a lovely and I am sure, difficult to write, post.
I hope so. I have told myself it was his way of saying it was ok. Thank you for sharing your thoughts on that. I will never forget his words!
Barb, hugs to you on this day of remembrance. You were a good daughter. You made the best decision you could have made with the information and resources you had available at the time. You had their best interest in mind every step of the way.
I know from other articles of yours you have many GOOD memories of your father and mother. Enjoy.
Peace be with you.
Thank you Lisa. Especially for the reminder to focus on the good memories! There are many of those. I’m finding peace a little more every day.
Man, this pushed all the buttons. I’m in a coffee shop and the embarrassment of bawling is the only thing saving me. My mother died from a heart attack, but she spent many years (over 10) suffering the consequences of a lifetime of smoking. She had emphysema and COPD. She was dependent on a cornucopia of meds and oxygen. When she had the heart attack, I don’t think she was aware. She just thought she was struggling more than average. By the time she called me in the morning, she had been up all the previous night trying to manage.… Read more »
Cab, thank you for sharing your journey with your mom. I’m really glad you had your sisters for support and that your son is doing well now too. I hope you found a safe place to cry!
Be still my heart. I agree with your dad, you ARE a good daughter.
I really appreciate that Amy. I know how your Mom treasured you!
‘Becoming the parent of your parents is one of the hardest things.’ Wow, a very powerful line. Thanks for sharing your story, Barbara.
Thank you Kathryn. It’s hard to parent your parent because it doesn’t feel right – it disrupts the order of things- makes you want your mommy and daddy even more.
Prayers for you! This was beautifully written…and, yes, thank you for writing this… we are going through this right now….so many weird feelings….so hard to let go and feel like you did enough or the right thing…
Lela – I’m so sorry you are going through this now. Prayers sent your way too. I know now that I did the very best I could. I wish you peace on your journey.