René Cantwell, advocated for her father after his stroke the night of the millennium and for the ten years that followed. After forming a Family Council in her father’s nursing home, Cantwell put her skills to use as she published the caregiver resource Families of Loved Ones (FOLO). FOLO, no longer in print continues to be available online at www.familiesoflovedones.com.
We all know those weeks that just sap all of your strength. Well, it was Saturday I had had a long week, and I was whipped. Maybe it was because I was acclimating to my typical schedule after an unprecedented week long vacation. Perhaps that dastardly thyroid was off again. After all, travel, weight fluctuation, eating too much fiber, the wind blowing in a different direction, almost anything could trigger an uncomfortable level change with the thyroid. Perhaps I was just bone tired, but going home to take a break was really not an option.
Why? On this day, just like every Saturday for the past ten years (unless there was an extraordinary exception) I knew that someone special was waiting for me. It was the same on Tuesday and Wednesday too. I was obligated, but not in a bad way, more like the commitment a new mother feels to care for her infant. Three days each week were reserved for my visit with Dad. He set his clock by it, and so did I.
As a family, we had come together in crisis on many occasions. By the time Mom was 49, she had endured over 20 major surgeries, leukemia, heart and lung disease, kidney failure, throat cancer, and most devastating of all, neurological impairment that brought about a type of personality disorder and dementia that was as debilitating as it was devastating. Dad’s compassion and devotion to his soul mate, in the most difficult of times, was often the topic of conversation among family and strangers alike. My Dad, it was often said, was a saint.
There are many stories on how their lives became an accumulation of sorrow and hardship. Job loss, no insurance, loosing their home—they were no stranger to life’s challenges. But as long as they had each other, they were able to move on. As adult children, we worried. We helped and supported as we could, our distance from the epicenter of their lives allowed us to become marvelous critics. Conversations between the siblings would often contain phrases such as enabler and denial, but mostly the tone of the dialogue was that of concern. Our worries were real; the toll that Mom’s care was taking on Dad was measurable. He already had open-heart surgery, he was diabetic, and at 69, still had to find work in order to make ends meet.
On the night of the millennium, when most were celebrating a new era and worrying about Y2K, the family was about to learn how our worst fears were materializing. A quick visit for the New Year revealed that Dad had a stroke. We think it happened sometime during the night before. Mom had made her way to his side, but once she sat on the couch, she was unable to get up. She could not reach the phone, and didn’t quite comprehend that something was amiss. We don’t know how many hours passed, but she assured us that Dad was just napping, probably not feeling well today. In that moment, life as we knew it had changed.
As tears flooded my eyes, my thoughts ran in a million directions. Call 911. Oh my God. I had Matt (my 12 year old), and my mother in law Dolores with me. Stay calm. Oh sweet Jesus! My mind was racing, I’ve got to get them out of here. This is too much for them to see. Why am I crying?! Dammit, shit, (Mom always professed that nothing relieved stress like cursing.) I preferred deep breathing. Breath. Ok, I’m good. It’s not working! I decided to pray instead of curse.
My family has often marveled at my ability to delegate. In fact, my brother John nicknamed me “The Delegator,” and delegate I did. In the moments before the ambulance arrived, I was able to summon help to gather up the kids, get a friend in the house for Mom, and have someone contact family. My husband, a musician, was playing a gig and not reachable. For a fleeting moment, I felt utterly on my own. Waiting for the ambulance was the longest 5 minutes of my life.
On the way to the hospital I sobbed. It was the only thing I could do, and I so appreciated the ambulance driver just allowing that to happen. I rang in the New Year in the emergency room, along with my brother and sister-in-law. At midnight, we could hear the staff wishing each other well, but not one of us could muster the strength to stand. Our reality, as if in sympathy with my father, was momentarily paralyzing us.
The next few months were horrific. There were so many decisions to make because Dad was not going home. Within days of his stroke we had Mom in respite, and I began to learn the language of long-term care. As the weeks and months progressed, the family settled into our new normal.
Mom’s condition was confusing to the nursing home staff; her often-caustic behavior required soothing interventions for her and those around her. Dad was progressing a bit, but he was completely paralyzed on his right side. No more walking, ever. He was also aphasic. After years of being the voice of reason, the voice for my mother, he now uttered unrecognizable gibberish. The aphasia was termed “expressive.” Which meant he had thoughts, he was still “in there.” His inability to express himself was excruciating for everyone, but most especially for him. You would think that he could just write letters to form those precious words and thoughts; but any attempt was as garbled as his speech. I became his voice.
We finally settled them both into the “honeymoon” corner suite of the nursing home. Mom asked to go home every day. We never told her that the apartment was no longer there. What purpose would it have served? At least she could dream and imagine the day they could go back. But that would not be, Mom only lasted until August that year. It was her time. Although she was relatively young, only 65, she appeared as you would imagine a 98 year old would look. In her final days she was granted the blessing of hospice and finally, sufficient pain control. Blessed morphine allowed her moments of clarity that we had not seen in years. She closed her life with dignity and peace, for which my family and I will be forever grateful.
After mom’s passing, we moved into a new phase for Dad. No longer tethered to her bedside, he slowly came into what would constitute his new life for the next decade. Thinking back, I’ve often commented on how those ten years were the most stress free of his life. It’s a very sad commentary, but true. Living in a large facility afforded him plenty of room to move around in his wheelchair and when a neighbor gifted him a motorized chair his world really opened up. The principle would call me in; um… I mean an administrator would call me in to tell me he was in trouble, again, for going off property. He would beam with delight as I listened to the manager, concerned about his adventures. I loved that. While I was professing my alarm, I was secretly thinking, You go, Dad. Go!
I became Dad’s voice, his advocate. The one he knew would be there, without fail every Saturday, Tuesday and Wednesday. I could have never done this without support. My husband stepped up to the plate from day one. I curtailed my work hours, and even the kids knew that Grandpa was a priority, just like them. My siblings, God bless them, knew I would be the one calling the shots. My sister became my greatest partner in Dad’s care. The others did the best they could, but their circumstances were all different. The one promise that they made to me was the greatest gift I could have asked for. They never hassled me. I’m sure there were decisions that I made that they would have done differently, but they always supported my decisions because it was the kind thing to do. The last thing I would have needed would to have been arguing with them.
So back to that Saturday I first mentioned. It was now over ten years after Dad’s stroke. How could I not go see him, even if it was just a quick visit? Knowing that he would very well be waiting for me in the lobby made it impossible to not go.
When I got there I was surprised to find him in bed. I came to learn that he had been up, but had a colossal “accident” while up in his chair. He sheepishly giggled and motioned, clearly letting me know that “Geeze, you can’t believe what happened!” The room was not so fresh. Well, at least I wasn’t hungry any more. I set about to reassure him and help the aide (also a saint) clean up. Every time she came in he was embarrassed all over again. I’ll never forget what she said to him. “Philip, someday I will need help. I want that person to treat me kindly. Why wouldn’t I do that for you?” Spending time at the nursing home was often fraught with life lessons. Another thing that developed as I spent time at the nursing home was an increasing dialogue with God. My conversation with Him typically went something like “Alright, I think I get the compassion thing already. Can we slow down on the lessons?” But yet, here was another day, and another lesson.
As the hour stretched into two I realized I was now very hungry and excruciatingly tired—I needed to leave. I hurried to washed up and set about to say goodbye. He was tired too, but I could tell he did not want me to go, not yet. I hated it when that happened. I shushed him from his last minute question, kissed him on the forehead and intended to leave. Instead I realized that although he had been thoroughly cleaned, he was clammy, he looked sad. I could not leave him like that, so I put down my stuff and got him a washbasin and we spent a few minutes reorganizing. We washed his face, neck and back, powdered him up, got a new pillowcase, some cold fresh water, and wa-la—a new man. Now he was comfortable and sleepy and he was chasing me to go. That is how I liked to make my exit.
The events of that day could have been any number of days with Dad. What makes this one different is that it was the last time I saw him before his final days. My sister spent an equally beautiful Sunday with him and on that Monday night I received a call that he had a heart attack. While he lingered for a few days, he was not aware. He was just giving us time to adjust to the fact that he was leaving. As always, he continued to be a perfect gentleman.
It’s now been two years since my dad passed and the life lessons are still being lovingly delivered. I think that the greatest gift I’ve received is the ability to reflect on my experience and have no regrets. Not that I believe for one second that I did everything perfectly, far from it. But I do know that I did the very best I could, and it made a difference in someone’s life—and was appreciated. In the end, who could ask for more?