By Glenn Ellis
There are two things that movies consistently get wrong: sex and death. Unfortunately, as a society, we spend far too much time thinking of sex, and too little time devoted to death – especially of a parent.
Caring for a dying parent is a difficult and emotionally challenging task. However, effective communication can ease the transition.
Movies consistently present death in a false or unrealistic way. Real-life death is not always dignified, simple or tidy. Indeed, death can be upsetting, messy, painful and a traumatic experience for all parties involved.
Complications can arise during the course of an illness and can lead to increasingly worsening circumstances. Immobile or semi-mobile patients may feel determined to walk and may try to get out of bed. As a result, some may fracture or break their hip. As bad as terminal illness is, additional complications can make quality of life worse. Patients may become restricted to their bed and may rely on a catheter.
Regardless of the attempts to prevent it, as soon as they return home, complications such as a yeast infection or urinary tract infection may occur. This causes a patient to become even more frightened and restless. How is anyone supposed to take care of a dying person? It’s a fairly straightforward concept “nurse” a person back into good health, but how is anyone supposed to “nurse” them into death with dignity and compassion?
Then there’s the morphine. Dying parents may often feel agitated and restless, so much so that they might try getting out of her bed. The morphine may help to calm them down. Is it unethical to give it to them to address mental rather than physical pain? Although their hip fracture causes pain, many children give their parents morphine more for their parents’ restlessness.
The only organ donors you see on “Grey’s Anatomy” are car accident fatalities. No one ever talks about mulling over whether to give someone’s organs away while they’re still conscious in another room.
These are the kinds of issues that children with dying parents struggle with every day. Many adult-children caregivers believe that their ill parent wouldn’t have wanted to live this kind of existence. They may have stated that they didn’t want a lingering, drawn-out death. This is why advance directives are so essential.
If you’re like most families (including mine), generally, the care of a dying parent falls on the shoulders (and back) of one sibling or family member. Although it’s rare for siblings to share parent care equally, it’s a family responsibility. Not treating it as such “will haunt you” later on. Even if you live far away from your ailing parent, you can still help out, says journalist and author Francine Russo, who has written a book offering tips for caregiving children. From ordering car service a couple times a week to paying bills online, anything that can be done via telephone or internet is within your reach, she notes. Just calling your mom more often “so she’s not so needy” can provide relief to the sibling carrying the heaviest load, says Russo, as can making the trip to be with your mom whenever possible, so your sibling can take time off.
End-of-life care is something that few people like to think about, let alone discuss. Avoiding the subject until it’s unavoidable, however, can be a “huge mistake” with devastating consequences for the sibling relationship. Call a family meeting when your parents are still healthy.
Such a conversation might start this way: Remember aunt so-and-so, and how our cousins were still fighting when she was on the respirator and they wouldn’t let her die and how painful that was for everybody? We don’t want that to happen in our family. Mom, Dad, do you have a living will? Have you assigned somebody to be the healthcare proxy? Though they may attempt to deflect such questions: nudge further. If you were on a respirator or in really bad shape, would you want us to do everything possible, or would you just want to go quietly? Who should make that decision? We’ll all want to do what’s right, but we may have different feelings.
It’s time to start an honest and open discussion of what dying really means. How can we help someone we love to pass on? What do “extraordinary measures” mean to different people? To some, it may mean CPR. For others, it might mean giving any medications that can help. Furthermore, what constitutes a tolerable living standard? For instance, what happens when someone is bedridden or unable to control their bowels?
There are few things more difficult than saying goodbye to a dying parent. These questions are undoubtedly tough ones. In most cases, they’re mentioned far too late.
Remember, I’m not a doctor. I just sound like one.
Take good care of yourself and live the best life possible!
The information included in this column is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. The reader should always consult his or her healthcare provider to determine the appropriateness of the information for their own situation or if they have any questions regarding a medical condition or treatment plan.
Glenn Ellis, is a Health Advocacy Communications Specialist. He is the author of Which Doctor?, and Information is the Best Medicine. For more good health information, visit: www.glennellis.com.