Ask Juli: “How will I know?”
Updated: May 17, 2023
No, it’s not about the Whitney Houston song! Even though that would be a great song to dive into … not for today.
Today, I am doing my best to answer this question regarding caregiving and end-of-life decisions. It is not my intention to cast a wide net in answering this question because each family and caregiver situation is different. But, this question has been asked of me several times in the last few months, and I have held it close to my heart, not wanting to over share publicly. It is never a public or large group question. It is always a tear-filled moment of reckoning for the brave ones.
The question goes something like this:
“How will I know when it is time to transition my loved one from a palliative care plan to a hospice care plan?”
And there it is. The most honest revelation of a caregiver’s heart. What and when do I do whatever I am “supposed” to do, and what is my responsibility to this precious human being that I love so deeply?
How will I know?
I will gently offer my experience to this conversation which is oftentimes avoided because of the nature of the ultimate result. I know it does not just apply to families caring for children or adults with disabilities. I know that many people outside of the disability community face this question as their loved ones are aging and being cared for in their homes.
So, let’s take a deep dive together in answering this question with humility and love. I am not the expert, but I know what it means to have had to answer this question for myself and for several close friends. My personal, first-hand experience, first.
Our precious Robert remained on a palliative care plan with his home health service for ten years because he was frequently at death’s door. His “Do Not Resuscitate” (DNR) order was prominently posted on his bedroom closet door for all to see. His funeral service had been planned and paid for well before he reached his tenth birthday. We had done all of the things possible to care for him in our home until that day came. Thankfully, that day lingered for us for many years.
I engaged in conversations often with his team of nurses and doctors about palliative care versus hospice care. It is a common, periodic subject when caring for someone with a terminal condition. I always came away from those conversations with a sense of peace because Robert was still fully enjoying his limited abilities, even as his seizures increased, and his mental regression continued. His palliative care plan was working well with his team of nurses in our home.
As Robert grew into his late teenage years, things began to change. He was less mobile and bodily systems were showing more signs of stress. His last local hospitalization was a ten-day “watch and see” which only confirmed that he was preparing to leave us. The harsh reality of that last specific discharge is that he probably should have been released from the hospital back into our home with a hospice care plan.
Robert was not transitioned into hospice care, even though his level of discomfort and pain was obvious. Though changing to a hospice care plan was not our experience, I have settled in my heart that there was no blame towards his medical team or, more importantly, towards my God. It was what it was.
How will I know?
You may not know, as was our case. I could have easily called our four other children to his bedside to say, “goodbye,” in those last few days, but we did not know that day was so close. Chris and I could have easily stopped working and held him longer during the last few days, but Robert was not released into a hospice care plan, so we … even we, with all of our medical and caregiving knowledge, … we did not know. We spent most of our waking and sometimes non-waking hours by his side or in his bed with him. Still, he was not on a hospice care plan, so the “alarm” to rush in had not been activated. You may not know until you know.
And then there is the issue of nursing care hours on a palliative care plan versus a hospice care plan. Generally speaking, most families lose some nursing care hours once the transition is made. That can be a very difficult reality for some as their loved one begins to decline. And that reality can be a deciding factor in how quickly a transition can be addressed. Again, I am in no way an expert in any of these conversations, but an advocate for caregivers and the precious lives they support.
How will I know?
You may wonder what my advice has been to my friends when my phone rings and, through much pain, we share hearts and solutions. I will let you in on our conversations for the sole purpose of helping someone else with this same question today. This series is for the light and the deep “Ask Juli” questions, and to begin with any question that was not current in my life would not be true to myself. I hope you will accept the reality I have lived on this journey as one worth discussing and sharing for those around you. Here it goes!
If you are given the privilege of caregiving and run straight into this question, please consider this advice:
Meet with your care team and request the specific nursing hours given to palliative care patients versus hospice care patients.
Consider if what would be offered in transitioning to a different plan would be enough for you to successfully manage the care of your loved one.
Evaluate your own mental, emotional and physical health to determine your personal ability to continue your current level of care.
Honestly — and I mean honestly — evaluate with your care team what is the level of pain or discomfort that your loved one is experiencing.
Lastly, and probably the most difficult of all of the things to consider is your level of holding onto your loved one when they may be in pain because you, yes you, are not ready to let them go.
What is the responsibility of a caregiver? It is to care for and attend to the needs of the ill or injured one with dignity and respect to the best of one’s ability. If a loved one is in pain nearing the time of transitioning to hospice care and the very capable team of hospice nurses can give relief and ease that pain, I believe that transition may be the best decision for a loved one. A caregiver that leaves a loved one in unnecessary pain is not truly caregiving. It is not in the best interest of the one needing the care. Again, what is the responsibility of a caregiver?
I know those words may seem harsh, and some of you may wish to ask me additional questions. I am open to that ongoing discussion. These are not easy situations. However, if you have the privilege in your lifetime to care for another human being as they transition into the end of their life, you are blessed, but also uniquely qualified to offer wisdom for the moment.
I hope and pray I have offered humble wisdom for you who have asked this question of me, and for those of you who have wondered about this very candid question. My heart hurts for you if you are walking or crawling on this journey right now. Please reach out because you are not alone.
How will I know?
Do your best with my suggestions, and I trust you will know.
Listening Library: “Memories” (Maroon 5)
“Blessed are those who mourn, for they will be comforted.” (Matthew 5:4 NIV)
Memories
Here's to the ones that we got Cheers to the wish you were here, but you're not 'Cause the drinks bring back all the memories Of everything we've been through Toast to the ones here today Toast to the ones that we lost on the way 'Cause the drinks bring back all the memories And the memories bring back, memories bring back you
There's a time that I remember, when I did not know no pain When I believed in forever, and everything would stay the same Now my heart feel like December when somebody say your name 'Cause I can't reach out to call you, but I know I will one day, yeah
Everybody hurts sometimes Everybody hurts someday, ayy ayy But everything gon' be alright Go and raise a glass and say, ayy
Here's to the ones that we got Cheers to the wish you were here, but you're not 'Cause the drinks bring back all the memories Of everything we've been through Toast to the ones here today Toast to the ones that we lost on the way 'Cause the drinks bring back all the memories And the memories bring back, memories bring back you
Doo doo, doo doo doo doo Doo doo doo doo, doo doo doo doo Doo doo doo doo, doo doo doo Memories bring back, memories bring back you
There's a time that I remember when I never felt so lost When I felt all of the hatred was too powerful to stop (ooh, yeah) Now my heart feel like an ember and it's lighting up the dark I'll carry these torches for ya that you know I'll never drop, yeah
Everybody hurts sometimes Everybody hurts someday, ayy ayy But everything gon' be alright Go and raise a glass and say, ayy
Here's to the ones that we got (oh) Cheers to the wish you were here, but you're not 'Cause the drinks bring back all the memories Of everything we've been through (no, no) Toast to the ones here today (ayy) Toast to the ones that we lost on the way 'Cause the drinks bring back all the memories (ayy) And the memories bring back, memories bring back you
Doo doo, doo doo doo doo Doo doo doo doo, doo doo doo doo Doo doo doo doo, doo doo doo Memories bring back, memories bring back you Doo doo, doo doo doo doo Doo doo doo doo, doo doo doo doo Doo doo doo doo, doo doo doo (ooh, yeah) Memories bring back, memories bring back you
Yeah, yeah, yeah Yeah, yeah, yeah, yeah, yeah, doh, doh Memories bring back, memories bring back you
Songwriters: Adam Levine / Jacob Hindlin / Jonathan Bellion / Jordan Johnson / Michael Pollack / Stefan Johnson / Vincent Ford
Memories lyrics © BMG Rights Management, Universal Music Publishing Group, Warner Chappell Music, Inc
