It’s no surprise that one hundred percent of the time, the end of the care partner journey is the death of their loved one.
The problem is, death is an unpredictable creature. Sometimes he sneaks in at night, and just like that, it’s over. At other times, symptoms point in the direction of the end, and we wonder--is this it? It isn’t. What may look like end-of-life in a fragile elder can be something easily treatable like a urinary tract infection.
Deciding when “the end is the end” is difficult, even for the medical community. As a care partner, you may be asked to make complicated decisions--decisions that have no clear answer.
It helps to reason through the choices before you are caught in the web of conflicting emotions.
The final “R” in care partner is release.
As people age, their appetite dwindles. Even with nutritious, attractive meals, many eat slowly and leave half of even a small portion. They need encouragement to drink, and many are dehydrated. A doctor, nurse or dietician may suggest a supplement. Liquid supplements are popular, as most people enjoy the flavour, and they provide the nutrients for an entire meal in a small glass. For many elders, supplements provide stable health and quality of life for a period of time.
Here are a few scenerios:
Madeline struggled with eating and swallowing for over a year, and there were many choking incidents. One day, she could no longer swallow anything. Her family decided to send her to hospital to get a feeding tube. Over the next three months, her struggle intensified, and there were multiple trips to hospital. The tube became blocked, detached, and her body swelled because it wasn’t absorbing the nutrients. In the end, her family had the tube removed and she passed away peacefully.
If there was someone you might think wouldn’t benefit from supplement, it was Mary. In a wheelchair, unable to speak or do anything for herself, it would be normal to suggest Mary wasn’t a candidate for supplement. Mary didn’t think so. She pointed to the glass, indicating she wanted it, and now. She lived on supplement for a few years, and it was her choice to do so.
Amy ate little. Some days, she drank part of her supplement, and some days, not at all. One day, she didn’t eat at all, and had only a few teaspoons of water. The next was the same. On the third day, her family was called. We all agreed, Amy was sending us a clear message. She was done. Staff kept her clean and comfortable. Mouth care moistened her tongue and lips and medications were given to ensure she had no pain. Oxygen made her final breaths easier. Her favourite old movies were playing on the television. Over the course of a few days, she slipped away.
Ralph’s family made the decision that they would let him lead in his final journey. When he stopped eating and drinking, they accepted that, and other comfort measures were put in place. After two days, Ralph looked at his sister, and said, “I’d like some chocolate ice cream.” Stunned, she rushed for the nurse, unsure of the next step. Was this a miraculous revival? Reassured, she came back to the room with a small bowl of ice cream, and fed it to her brother. After a few spoonsful, he lay back and indicated he’s had enough. A few days later, he passed away peacefully. His sister still smiles when she remembers sharing that ice cream with her brother.
In death’s unpredictable course, every care partner is called upon at some point to release their loved one. Although painful and difficult, it’s a gift.
A final, precious gift.
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