Caregiving is a battle against illness, depression, frustration, worry, and at times deep sorrow. We try to maintain as much wellness as possible for our loved one, yet the truth that we have no control over outcomes constantly hits us in the gut. Our frustration can lead to depression and worry keeps us awake. When we face the end of our caregiving journey, sorrow overwhelms us. As I crawled out of the caregiving trenches when God called my husband home, I dragged two more lessons with me to share.
Lesson 1 The “Talk”
There’s the proverbial “birds and bees” talk that probably is no longer necessary within our culture now. More importantly, we need to teach our children values and morality. Black families have “the talk” with their sons about how to act when a policeman pulls them over. Pray God, that goes the way of the birds and bees talk.
My husband and I had “the talk” about his wishes about end of life care choices when we completed the MOLST form —— portable signed medical orders to implement the patient’s wishes. For many reasons, my husband was adamant he wanted no life-saving interventions. Given his condition and prognosis, neither his physician nor I could disagree with him. It was a wise decision.
When my husband lay in the hospital room, he spoke emphatically to the PA and hospital chaplain about his choice and why he was making it. He was very clear. Everyone in the hospital room agreed and sympathized. Then I learned how painful the implementation of that choice was. I wanted to do what I always had. I wanted to advocate for treatments, discuss possible alternatives for cure with his doctors. But there were no such alternatives. That’s why we agreed on our course of inaction, but I’ve never been wired to not act for him! Carrying out his wishes was more painful for me than it was for him.
I will tell you, only the grace and presence of Jesus got me through.
Lesson 2 Semantics is Everything
As a result of his choices, my husband transitioned to “comfort care.” I believed he would now be given enough narcotic pain medication (his pain was WAY beyond NSAIDS) so he could be, well, comfortable. Fifty years of nursing told me upping the dose or changing the medication would not kill him. I suspect the legal and medical response to our national opioid crisis too often removes rational pain management from the table too often. I mistakenly believed putting him under the “comfort care” umbrella would result in adequate pain management. Instead, it resulted in what I saw as benign neglect.
No one checked his vital signs or ordered blood work. The speech therapist determined he could not swallow clear liquids, so he was given thickened fluids and his medications were mashed in applesauce (all of which just sat on a tray next to him). Perhaps because I was allowed to care for him, the staff thought I would feed him, which I did. However, medications are given at certain times and should not be left at the bedside because the patient refused to consume them at the time.
A later conversation with one of the docs covering him revealed that comfort care was not hospice care in the hospital. Here I thought it was the same. Goal is comfort, not cure, right? Semantics. She immediately ordered hospice care and I think he would have been far better cared for, but the Lord decided he would do a better job than the hospital and called him home within hours.
So my two take-aways are to be sure you and your loved one have “the talk.” Sometimes it’s hard to introduce the topic. It’s a safe bet your loved one has thought about this and would be relieved to discuss his wishes. Then have these choices in writing, signed by his MD and in the hospital record. But know that will not protect you from pain and sorrow when they are carried out.
Secondly, do not assume, like I did, that two different terms mean the same thing. Clarify, clarify, clarify.
And I will add a third piece of advice. PRAY, call on God to hold you up, ask for His wisdom and strength.
“Come near to God and He will come near to you.” (James 4:8 NIV)