It has been my pleasure, as well as my work, to experience what some would consider the darkest hour of life: dying. I have seen people shine during their end-of-life journey. They provided powerful legacies to their loved ones. I, too, have benefited from those gifts.
From the numerous people who have allowed me into their homes, I have chosen a few examples of dads who have inspired me to take a look at my own life with the full knowledge that I will experience my own end-of-life journey one day. I have changed names and circumstances in order to maintain their privacy.
Bert was a young dad with young children still at home. His disease process took close to 10 years to bring his life to an end. Being a very independent man, he found it difficult to allow others to take care of him. He dreaded the process of decline that he was already experiencing when I became his hospice nurse. He consistently denied discomfort because he did not want to be a burden to his family and even myself, who was specifically charged with the responsibility to do everything possible to provide comfort.
When our bodies are asked to fight a battle with a formidable foe such as cancer, often during that process, the liver becomes stressed. This amazing organ can often be more than 90 percent destroyed before we have the first noticeable symptom. When it is no longer able to filter out the toxins and impurities from our blood, the worst symptom I have seen is insatiable itching. This is an itching that is temporarily eased with scratching the offending area. Medically speaking, itching is considered pain. The usual treatments for itching generally do not work. The itching is coming from the toxins inside the body. Some drugs can help, such as an anti-inflammatory or a numbing agent. Long-handled back scratchers usually offer temporary relief. A cooling massage with chilled aloe vera often offers comfort.
Bert had two daughters. The oldest decided that her job was going to be to “scratch Daddy’s itches” when he was no longer able to wield the trusty anti-itch utensil. She proudly announced to me that this was how she was going to help. The youngest sibling let me know that she didn’t know what she was going to do to help her dad feel better. She rejected most of the suggestions the family made until one day she decided she was going to “take care of Daddy’s mouth.” The only problem was that she did not know how to do it. I told her I would put together a mouth-care kit and she could practice ahead of time with the touthettes (mouth sponges on a stick), mouthwash and lip balm for his lips. She was very proud of her job.
The lesson Dad supplied was to graciously accept help. People need to feel useful and that goes for children, too. Bert reinforced in his children the importance of not only allowing, but graciously accepting, help that preserved his dignity and also helped him become more open to accepting more help as his abilities declined. He embraced going to a hospice house when he had hoped he would be able to die at home. Letting your loved ones provide the help they can is a huge gift – for both the receiver and the giver.
Al was discharged from the hospital and sent home with an order for hospice. Upon my arrival, it was almost a party-like atmosphere with lots of people scurrying around making food, eating, laughing, and with some tearfulness.
Al was comfortable in his bedroom when I met with his wife and daughters in the kitchen. After filling out the paperwork, I was taken to meet him. There were at least seven people lying on the bed, sitting in chairs and standing.
Al was laying in the middle of a king-sized bed and I had to crawl to him to be able to listen to his chest and take his blood pressure.
“There really isn’t anything you can do, young lady,” he announced as he stuck his hand out to shake mine. “I’ve already taken care of everything and clearly I am in good hands with my family here. I’ve already planned my funeral services and my obituary is already written and I am good to go anytime the Lord wants to take me.”
I told him I was very happy to hear that and if it was OK, I just wanted to check his vitals. After listening to his chest, I was in the process of wrapping the blood pressure cuff around his arm. I asked him what music he was going to have for is funeral service.
“Oh, my goodness! I haven’t done that. Young lady, you have to leave,” he blurted as he shook his arm to get the blood pressure cuff off. “Someone get me the hymnal. We have to pick out my hymns.”
And with that I was ushered out the bedroom door. The wife apologized for her husband being rude to me. I laughed and said I would not have it any other way. He was clearly a man who took care of business and I figured my work here was done. I told them I would get his blood pressure when I came back in the morning. However, Al died peacefully about two hours before I arrived the next day.
Fred, a medical professional and father of two adult children, made the decision not to have the invasive treatments that were all too often ineffective with his rapidly moving disease. From diagnosis to death took a month. Fred had a working knowledge of what his options were and he decided to do the work of the dying, which is letting go. There is a difference between giving up and letting go. This very wise dad knew that difference.
These courageous dads left the legacy that at a very challenging time of life, taking care of the business of dying is a vital function of a well-lived life so you can appreciate the loving care, let go and have a great bon voyage party.
Lenora Trussell, RN is an end-of-life tour guide who is available for consultations, presentations, and workshops. “65 Things to Do When You Retire: Travel,” including one of Lenora’s previously unpublished essays is available through the public library system. Her email is firstname.lastname@example.org where inquiries and comments are welcome.