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)
Beautiful, Sue, just Beautiful!
As beautiful as your message is, I can still see your strength and desire to help others
with what you went through. You are always ready to help others with your wisdom and experience.
I pray God’s blessings on you.Blessings
Thank you, Sandy. Way back in the mid ’80s I was sole caregiver for my parents because I was an only child. It was uber-challenging and back then I wondered how lay people manage, when I was struggling and I worked in the system. I was going to Alfred University (they ran the BSN program for diploma RNs on John Fisher Campus) and every assignment I could, I focused on caregiving. Up until then, we nurses were told to “support the family” (what did THAT mean? At the time, nothing) and encourage people to talk. I believed caregivers should be treated as if they were patients themselves with health risks that are physical, emotional and spiritual.
And that put me on this caregiving path years ago. I guess I’m following the crumbs the Holy Spirit has been dropping all along.
Beautiful post and very eloquently written. I would add one thing, though. When you have “the talk” be sure to communicate your loved one’s wishes to your children or other close family members. When I worked as a critical care nurse, we had patients who ended up getting invasive procedures and life saving measures because this communication didn’t happen, or the decision was never legally written down, and somefamily members disagreed with it. In the words of a physician I knew : “Dead patients don’t sue, but live family members do.
Good suggestion, Pat. As for suing family members, Lifespan now includes the services of two social workers who do family mediation when there are disagreements. This is new. I heard them speak at at a GRAPE meeting.
Wise words, Sue! Hospice stats show that caregivers who, with their loved one opt for hospice care, usually wait too long to initiate it. Judi’s husband Dick was home only one day; my Bob died on his fifth day home. Many of us are reluctant because in our minds it is like “throwing in the towel”.
I did know Bob wanted to be home when he passed. We set up the hospital bed in the family room where he could look out on to Onondaga Lake. I was fully aware that the hospice nurse and aide wouldn’t be there 24/7. I was fortunate that my older sister and her daughter-in-law flew in from California to help, but the bottom line was that I,as Bob’s care giver and as an RN, knew the buck stopped with me. I was in control of his care, including hygiene and sedation. I would be awake anyway, worrying about pain control and when the end would come.
I will never forget the day before Bob died I was describing to Josie, the hospice RN, an occasion on the previous day when Bob became agitated, waving his arms at the overhead ceiling fan. “Oh”, she replied, “He was probably waving at the angels!” That remark affected me profoundly; even my sister, who has become disenchanted with religion, was moved. After all, as our last living act on Earth, aren’t we simply preparing our loved ones for their great encounter with our Lord? That thought will always provide me some comfort.
You said it all, Cathy. Thank you.