Some decisions are easy – Dad broke his shoulder and the orthopedic surgeon explains that he cannot fix the break – so you help Dad heal and accept that his shoulder will not function as it did before. Mom cannot swallow. You know all the downsides to a feeding tube, so if asked the answer is no. Other situations are not so clear.
Laura said to me, “I feel like I am contemplating killing my father.” No, she did not mean she was considering shooting him, or giving him an overdose of medication, or pushing him in his wheelchair over a cliff.
“We urge him to eat when he really wants to refuse. We push him to drink when he would really rather not. We go to extraordinary measures to try to get his bowels to move. But his body doesn’t want to do any of that. How long do we keep trying to force Dad and his body to do what they don’t want to do any longer?”
Dr. Atul Guwande in his book Being Mortal, points out something interesting and, obvious, once you think about it. It seems that we have come so far with medical care and interventions that there is rarely nothing more we can do. It used to be that illness usually struck with very little warning and then you survived it or you did not. Now with all the interventions and treatments, how can we be sure about when to stop? Sometimes it is quite clear. However, in many situations it is not so clear. And there lay Laura’s quandary.
Often, I believe the caregiver has such a difficult time letting go because we are reacting to or trying to prevent guilt. Our pesky emotions or our fear of certain emotions muddy the waters. We worry that we will feel guilty that we gave up too soon. We worry that later we will regret not trying harder or continuing longer. We worry that we are not sure what Mom or Dad wants especially when whatever illness or condition they have limits their ability to tell us out right. Living wills and the Post, Polst, or Molst form can give us some guidance. Those written directives can clearly state, “I never want a feeding tube.” But who puts on such a form “Don’t try to make my bowels move when they don’t want to move.”?
In fact, guilt permeates the letting go process. You see, if you have been a caregiver for a while, you have experienced your moments of frustration, of being sick and tired of it all. You have had the thought “Isn’t it time for you to die?” or “How much longer is this going to go on?” or some version of such. You are not mean, or cruel, or uncaring, you are simply tired. This kind of on- going emotional stress causes what we call “burnout” in the corporate world. In the medical world the term “compassion fatigue” is sometimes used. Now, as you contemplate that this might really be the end, you recall those thoughts and you feel guilty. Maybe so guilty you are unable to make the decisions you need to make.
So back to the original question, how do we know when it is time to let go? How do we then do so? If you have involved a palliative care or hospice team they can be most helpful. I strongly urge families to involve a palliative care team or hospice care sooner rather than later. NO, that does not mean your loved one is going to die soon. It does not mean you stop doing for your loved one. It does not mean you don’t provide some treatment. It does mean that you have some experts to add to your team who can guide and assist you if your loved one has a life threatening illness. I found that just as I was asking myself if it was time to stop forcing things, the hospice team began that conversation with me. I also think that if you are asking yourself this question, this is an indication that it is time.
Guwande suggests that at this time, we should look at not only our fears and hopes, but the fears and hopes of the person for whom we care. What are those greatest fears: fear of pain; fear of guilt; fear of loneliness; the fear of making a wrong decision; the fear of prolonging suffering? And what are the hopes – the hope for quality of life, the hope for no pain, the hope for time to do one more thing; the hope to go in peace?
I believe it comes down to the question of quality of life and what specifically our efforts are accomplishing. Are our efforts inflicting undue distress, embarrassment, and suffering? Are we prolonging discomfort , loss of control, and unhappiness? Are our efforts allowing autonomy, providing comfort and relief from pain or distress?
A few years ago I heard a speaker on end of life issues use the term A.N.D. It stands for “allow natural death” And it made such perfect sense. Our power has limits. At some point we need to stop fighting what is going to happen anyway – no matter how valiantly we try to keep it at bay.
I believe that knowing we are not alone can make the way a bit easier and the decisions clearer. I am a person of faith. I believe if we ask Him, God will help us discern when to begin the letting go. I also believe He will help us through it. It will not be easy, but there is never a promise of easy. I realize not everyone believes as I. So believe in yourself and the love you have for the person for whom you care. Ask those in your close circle what they are seeing and if the think it may be time to begin letting go. Most importantly listen to person you love and for whom you are caring. Listen to them closely and carefully. They may tell you it is time to let go if you will stop fighting long enough to hear them. Recently, my mother, in a moment of complete clarity, looked me straight in the eye and said, “I wish you all would just leave me alone.”
As a caregiver, you have given time and energy to providing the best care you can for someone you love. You may have spent years trying to make things better, diminish pain and keep them safe. It will be a challenge to do less. But as is often said, sometimes less is more. I read somewhere that letting go is not about caring for but caring about. So how do you let go? With love.
I wish you strength and wisdom as you move through thesefinal challenges of caregiving.