Conscious Departures

Even Worse Than Death March 10, 2012

“When someone we love is diagnosed with a life-threatening condition, the worst thing we can imagine is that he or she might die. The sobering fact is that there are worse things than having someone you love die. Most basic, there is having the person you love die badly, suffering as he or she dies. Worse still is realizing later on that much of his or her suffering was unnecessary.” That’s an excerpt of a forthcoming book The Best Care Possible by Ira Byock, a long time palliative care physician, advocate for improved end-of-life care, and a past president of the American Academy of Hospice and Palliative Medicine.

After reading that excerpt I realized that part of the inspiration I had in creating this site came exactly from that line of thinking. Although the care giving I provided to K required a lot physically, it came naturally and lovingly.  It was a very intimate experience for the both of us.  On the other hand, the mental pressures definitely took a toll on me and one of the big ones was the concern that I would do something to cause K pain or harm. Both during and afterwards there was a intensive replaying of events in my mind looking for ways I could have improved her situation or handled things better. Many people have told me to not go there, but that’s easier said than done and the reality is that I could have used more information and help. It of course does me little good now.

Being in the position of the non-professional primary caregiver I was always faced with the unexpected and every decision came down to ensuring K’s comfort and safety. For instance, how do you properly move someone around when they have lost so much weight that they are mostly bones? It just seems impossible to do without risking breaking a bone or worse, and the fact of the matter is that if you are there alone you can easily find yourself in such a position, as I did many times. And before things turned for the worse I never even considered I would have to do something like move her around – nor did anyone tell me that I might. What I kept being told was “she will get more and more tired and then pass away.” That’s about the level of detail I was able to get.

Despite the challenges, we were very fortunate to have K go through the dying process at home. Being at home provided a level of comfort and familiarity that was unequaled. The calm and peace I tried to maintain in the house provided a wonderful environment for her and was noticed by the hospice nurses and anyone who was allowed in. But, I must say, I was not well prepared for the physical and emotional impact and believe that I could have been. In that situation, one in which you care deeply, I was not only witnessing a loved one deteriorate physically before my eyes, which was hard enough, but I was also working on an intensive almost non-stop level of alertness to ensure she was comfortable and safe. Yes, it was immensely fulfilling but it was also exhausting, something I didn’t notice until afterwards.  And remember, all this goes on while taking care of work, the house, finances and all the odds and ends we deal with day to day.

In another passage from Byock’s book he says, “Even otherwise excellent medical treatments and hospital care may leave a family not knowing how to care well at home for a dying loved one. By the end of a long illness, family caregivers are commonly physically and emotionally exhausted.” As a matter of fact, the strain can be so much that some studies show those caregivers experiencing very high levels of stress have a two-thirds higher risk of dying in within a four year period.

I’m not trying to frighten anyone away from caregiving, but I am saying that caregiving should not be taken lightly. It can be a truly remarkable, loving and life enhancing experience, but it can also be overwhelming and even traumatizing. Doing research on the subject and talking it over with your loved one can make the experience, during and afterwards, far better for everyone. I’m looking forward to getting this book as soon as it’s available. You can read some more excerpts in the Atlantic Magazine. The article is here: Making the Best of What Is Often the Very Worst Time of Our Lives. I’ve also put a link to Dr. Byock’s very informative website Dying Well on the resource page.