Never Goodbye

Navigating the Journey through Dementia

On April 14th, my dad ran a high fever of 104° and was hospitalized. Antibiotics quickly brought down the fever to 100°, and my dad was diagnosed with a urinary tract infection (UTI). My son Brad was not too worried and thought Dad would go home within a few days because he seemed pretty cognizant, lively, and in a chipper mood. I was able to talk to Dad on the phone, and he sounded good to me too. When I called and spoke with the nurse, I got more information and discovered Dad had not only a UTI, but had also sepsis. Even so, he recovered from both the UTI and sepsis quickly with the right antibiotics. He was very chatty, in high spirits, and eating. All appeared to be on the mend, and Brad snapped a picture of him, which you see here.

The next day when I called, Dad sounded congested. I found out he had developed aspiration pneumonia, meaning bits of food or liquids had gotten into his lungs. His throat also tightened up, and he was unable to swallow easily. The doctor ordered a barium test to gather more information about his difficulty with swallowing. However, the test made dad aspirate, and they had to discontinue it. His lungs were filling up. He was unable to eat or drink anything. Everything he ingested (and the doctor tried all kinds of approaches that included thickened liquids, pureed food, liquids, and so on) went straight to his lungs.

My dad’s living will specifically stated “no feeding tubes” should his condition be terminal and his body start to fail. He never wanted to be a vegetable with artificial devices keeping him alive, and really, who could blame him? If the end is coming, prolonging the inevitable with a feeding tube is torture for everyone.

A few years ago Dad had been diagnosed with other physical complications, including aortic stenosis, a heart condition where plaque builds up and the aorta narrows. Toward the end, the lungs fill with fluid, causing shortness of breath. The hospital did not alert us that Dad’s heart condition had worsened.

I called daily to check with the nurse on how he was improving. Dad was unable to talk on the phone at this point, and all information was coming to me second hand. The doctor said to notify out-of-state family about visiting. In so many words not spoken, the hospital let us know that my father was dying.

Our Last Visit

I flew to Alabama and drove straight to the hospital to visit my dad. Brad was there. Dad had trouble articulating, and you could hardly make out his words. But he was alert and aware of our presence, recognized us and tried to communicate through gestures and speech anyway. Unable to eat or drink, and with just an I.V. to sustain him, it was merely a matter of time  before Dad would pass on.  As a fatal condition, aortic stenosis began taking its toll. The next day the doctor decided to discontinue the I.V. Brad and I agreed it would be my dad’s wishes to do so. Upon questioning the doctor, I asked how long someone who couldn’t eat or drink anything would live without an I.V. He told me a healthy person would live seven days.

We got permission to take dad for a ride and brought him to the lake house in the afternoon. It was a beautiful sunny day in the 70’s with a nice breeze. Brad, Dad and I sat on the porch and looked at the lake. My dad’s speech had further deteriorated, and you could barely make out what he was saying. I asked him if he remembered the house and that it was his, and he said, “Oh, yea.” I told him how much I loved him, how proud I was of him and all his accomplishments—this beautiful house on the lake, his career as an optometrist, the golf tournament he won when was I was a kid as well, and things he had done. I let him know how wonderfully glad I was that he was my father. He smiled. It was hard to decipher his words, but we were able to make out that he was saying it was a beautiful lake, and he asked if there were lots of fish. He pointed to some leaves on the porch and asked if they were mine. To be sure I had understood, I asked “My leaves?” He nodded and said “Yea.” I replied, “Yes.” My answer confirmed for him that I would live here. After about an hour it sounded like he said, “Let’s go.” I asked if he wanted to leave, and he replied, “Might as well.”

Hospice Care

It was wonderful having Brad here to help me make decisions. I don’t know what I would have done without him. We brought Dad home to the house the next day as part of hospice care. My son’s wife had suggested hospice. It was what her family had done with her mother, and I instantly knew this was what my dad would want. Medicare funds hospice care for end of life and provides whatever you need, which includes a nurse who visits the home to check on the patient. A man from the hospice service came out and set up a hospital bed, an oxygen tank, a tray table, and a wheelchair. He also left me a suction pump to clear flem out of the lungs. I hoped I would not have to use that ominous looking contraption.

An ambulance drove Dad to the house a few hours later. His lungs were full and his breathing quite labored. The paramedic told me when lying flat in the ambulance, he started failing fast, unable to breathe well. So the paramedics sat him up and increased oxygen from two to four liters. The ambulance attendant feared they were going to lose Dad before ever reaching the house.

Dad kept trying to take off his oxygen tubes that looped around his ears and went into his nose. The ambulance attendant told me it was a good sign that he could now move his arms. I would let him take off the tube, wait a minute or so, and then gently put it back on. He only removed it three times, and then seemed okay with it, realizing that breathing without it was more difficult. I worried about all the flem in his lungs. His breathing sounded very gurgle-y. But I panicked at the idea of using the suction pump.

Brad came after work. He confirmed my decision to not use the suction pump, and I was relieved. Apparently the hospital staff had used a suction pump to clear out dad’s lungs, which Dad fought with all his might. Brad believed that forced use of the pump had hurt Dad’s throat. The decline between the day before and the day they brought Dad to the house was tremendous. Neighbors visited—Brenda, Jim, and Wydean. My dad was only semi-conscious and didn’t appear to recognize visitors. At least he could experience the comfort and familiarity of is own home and sense that people cared. Wydean told me it was best not to disturb him, not to speak.

After about 9:00 PM at night, I was alone with Dad. His breathing was very congested, and he seemed to be running a slight fever. I wet a wash cloth with warm water and lightly sponged his arms and forehead. In a few hours he felt cooler, and the fever seemed to have gone. I slept in a bed we had put beside his hospital bed. His breathing had cleared up slightly, and he finally closed his eyes. Around 3:00 am we both went to sleep. I woke up at dawn, unable to sleep anymore. Dad still appeared to be sleeping although his breathing was a struggle of short breaths. I did not sense dad’s presence, and his body was a little engine that just kept going, rhythmically chugging along with each fleeting breath. I brought my laptop into the bedroom and sat where I could face him.

Final Moment

A very close friend from California called the night before, gave me her support, and said she wished she could be with me when Dad passed, so I didn’t have to be alone. In the morning she called again, at 10:20 AM and asked how my dad was doing. I looked up at him, and he was asleep. His breathing sounded smoother, without the loud gurgling noise of full lungs, but his breaths were shorter and quicker, slightly faster than they had been the previous night.

I told her he was resting, and all his effort focused on breathing. However, as soon as I said this, he took his last breath. For a second, time slowed to a stop, like a freeze frame in a movie. I felt so blessed my friend was with me. The timing of her call was perfectly matched to the moment of his passing. He never woke up and went very gracefully. Everyone has their time. Allowing him to go in dignity, within the privacy of his own home fulfilled his wishes.

The nurse from hospice care was supposed to arrive at 10:30 am, but she was 45 minutes late. I truly believe Dad wanted to go when no nurses or health care professionals were around. He seemed at peace now. I knew the nurse would come and call the coroner. I called Brad’s cell phone and left a voice mail. Time moved in slow motion. I called Jim and Brenda, and they arrived just after the nurse, who began to clean up my dad. As the shock wore off, I shook with grief and tears while Brenda hugged me. May 1st, exactly a month from his 91st birthday, my dad passed on.