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Terminal Illnesses: Caregiver Tips and Guidelines

By Edited Nov 13, 2013 0 0

Hearing that a family member or close friend has a terminal illness is never a pleasant experience.  Dealing with the news, and what comes after, can be extremely difficult.  As someone who's been through both, I hope to pass on my experience.

In November, 2004, my sister-in-law was diagnosed with acute lymphoblastic leukemia.  She immediately started treatment, and fought the disease for six years, including chemotherapy and two bone-marrow transplants, each with a long list of side effects.  The treatment was worth the cost, as it bought her four years of mostly quality time with my brother and nephew, now age eight.  Her treatment regimen stopped working in November 2010, almost to the day she was diagnosed, and she died two weeks later. 

The events that happened during her diagnosis, treatment, remission and relapse were a lesson for me.  Here are a few things I learned along the way. 

Find a grief counselor and have each person in the family in for counseling, especially children.  Grief counselors can help your children find a healthy way to cope with the news, and they'll have good advice and suggestions for every step of the process.  If young children are involved, be honest with them.  One method suggests informing children in stages: First telling them that a family member is very sick, and then informing them of the terminal aspect of the illness later.

Schedule a meeting with the ill individual's treatment team.  Have them find the best possible treatment regimen to give most quality time available. Be clear: ask for specifics on each treatment option.  The goal is to keep the patient feeling as well as possible, as long as can be managed.  As the illness progresses, pain management, and hospice care will need to be explored.  The sick family member should also fill out a living will, detailing exactly what medical treatments should be provided when they are incapacitated. Most hospitals can provide the paperwork and have the document notarized on site.

Make memories with the affected person in the time you have left.  It's the most important thing that can be done with quality time, especially if children are involved.  These memories serve as an anchor, and a means of having someone live on after they're gone.  These can be something elaborate, like a family trip, or as simple as a daily ritual: Telling a story, watching a DVD, playing a game.

Caregivers need to carve out some time for themselves on a regular basis throughout the process. It may seem selfish, but if you can't recharge your own batteries, you'll have nothing left to give anyone else.  This should include exercise and good nutrition, but also time for hobbies.  Taking just thirty minutes to read or watch your favorite sitcom can be beneficial.  Additionally, finding a caregiver support group can be useful, allowing a caregiver to discuss issues with those in a similar situation.

Spiritual resources can also be of great benefit.  If you're a churchgoer, contact your priest, minister or rabbi about the situation.  They can be useful in putting the illness in perspective.  If not, contact a friend you can confide in to lighten your emotional burden.

Dealing with a terminal illness is never easy, but like most other major issues, it can be done.   Take your time, and find the right solutions that work for you and your family.   


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